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Study links long COVID in kids to worse grades, attention, and social life

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Children and adolescents with long COVID are significantly more likely to experience worsening grades, difficulty concentrating, and having limited fun with friends, according to a new study published in Academic Pediatrics.

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Endovascular profiles linked to neutrophil activation in children and young adults with long COVID - Pediatric Research

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Pediatric Research - Endovascular profiles linked to neutrophil activation in children and young adults with long COVID

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School Difficulties and Long COVID in Children and Adolescents, Reeder et al (2026)

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School Difficulties and Long COVID in Children and Adolescents, Reeder et al (2026)

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Long Covid (LC) is a highly prevalent chronic condition impacting individuals across the life span, with a significant burden for children and families worldwide.¹⁻⁵ LC has been broadly defined as symptoms, signs, and conditions that develop, persist, or relapse over time after an acute SARS-CoV-2 infection resolves. Pediatric LC includes a heterogenous collection of symptoms affecting almost every organ system, with age-varying symptom differences noted between elementary school-age children and adolescents.1,6,7 As with other chronic pediatric illnesses, there is great concern that LC negatively impacts key functional child outcomes related to their daily life.⁸ However, few research studies have examined associations between LC and key school-related functional child outcomes.

Functional status is defined as the extent to which a child can perform in their various roles across physical, cognitive, and social domains.⁹ Specifically during the school-age period and adolescence, school performance and peer interactions are foundational contributors to healthy growth and developmental trajectories. Participation and performance in school is critical for the academic, cognitive, and social aspects of childhood well-being.¹⁰ Similarly, peer relations and their positive impact on children's health and resiliency have been highlighted as important components of well-being.¹¹ Therefore, school and social challenges both represent potentially consequential morbidities of LC. We know from life course epidemiology that interruptions of development are carried forward, with potential lifetime impacts.¹² In aggregate, such impacts may impair critical population-level characteristics, such as workforce development and economic outcomes.¹³

Most research in the United States focused on child educational outcomes related to COVID-19 has focused on pandemic changes broadly. However, these studies do not specifically consider the adverse academic impacts of the SARS-CoV-2 virus itself. The emerging literature, primarily consisting of small sample sizes, has found that pediatric LC is associated with changes in physical activity levels, and reduced school attendance and performance.¹⁴⁻¹⁶

Therefore, we sought to evaluate associations between LC and with school-related functional outcomes among both school-age children and adolescents, in a large national multisite cohort study spanning the United States called Researching COVID to Enhance Recovery (RECOVER) Initiative (funded by the National Institutes of Health, USA).6,17 We hypothesized that school-aged children and adolescents with LC would have worsening grades during the pandemic, greater difficulty paying attention in school, more limited fun with friends, and would have a higher need for educational services, compared to those without LC.

STUDY DESIGN and MAIN EXPOSURE VARIABLE

MAIN OUTCOME VARIABLES

STATISTICAL ANALYSIS

Using the predefined matching criteria, we were able to find at least one match for 151 of 193 (78.2%) school-age children with LC and 537 of 577 (93.1%) of adolescents identified with LC. Of those not identified as having LC, 255 of 681 (37.4%) of potential school-age controls and 1033 of 3072 (33.6%) of potential adolescent controls were included in the study for a total of 406 school-age participants and 1570 adolescents in the study sample (eFigure 1, Supplementary Appendix).

Sociodemographic and infection-related characteristics of the matched cohort are reported in Table 1. The median (interquartile range [IQR]) LC index among school-age children with LC was 10 years (8-16 years) and among adolescents with LC was 12 years (8-13 years). Full responses to the outcome-defining survey questions are summarized in Figure, and eTable 2 (Supplementary Appendix).

A. School-age children

With Long COVID* (N=151)

Without Long COVID, after reweighting to match to those not vaccinated†,‡

Without Long COVID‡ (N=255)

B. Adolescents

With LC* (N=537)

Without LC, after reweighting to match to those not vaccinated†,‡

Without LC‡ (N=1033)

All numbers are count (%) unless otherwise specified. Percentages may not add up to 100% due to rounding.

Among school-age children, the proportion of children meeting the LC index threshold whose caregivers reported that grades were worse than pre-pandemic was 18%, compared to 7% in those not meeting the LC index threshold [adjusted RR 2.18, (95% CI: 1.15-4.11)]. The proportion reporting moderate or severe difficulty paying attention was 38% vs. 14% [adjusted RR 2.52, (95% CI: 1.63-3.89)], reporting sometimes, rarely, or never having fun with peers was 28% vs. 9% [adjusted RR 2.77, 95% CI: 1.56-4.94)] and reporting they had or were in process of obtaining an IEP was 35% vs. 22% [adjusted RR 1.30, (95% CI: 0.90-1.90)] ( Table 2A). Among school-age children with LC, 17% of reported IEPs were in process at the time of the LC assessment. The sensitivity analysis removing the contribution of the symptom "refusing to go to school" from the LC index showed consistent results to the primary analysis, generally with slightly higher estimated RRs and wider confidence intervals reflecting the reduced sample size (eTable 3, Supplementary Appendix).

A. School-age children

Endpoint

With Long COVID* (N=151) Proportion (95% CI)

Without Long COVID† (N=255) Proportion (95% CI)

Unadjusted‡ Risk Ratio (95% CI)

Adjusted§ Risk Ratio (95% CI)

B. Adolescents

Endpoint

With Long COVID* (N=537) Proportion (95% CI)

Without Long COVID† (N=1033) Proportion (95% CI)

Unadjusted‡ Risk Ratio (95% CI)

Adjusted§ Risk Ratio (95% CI)

All numbers are count (%) unless otherwise specified. Percentages may not add up to 100% due to rounding. Abbreviations: Long COVID, LC; Confidence Interval, CI

Among adolescents, the proportion of children meeting the LC index threshold whose caregivers reported that grades were worse than pre-pandemic was 29% vs. 11% in those not meeting the LC index threshold [adjusted RR 2.39, (95% CI: 1.86-3.06)]. The proportion reporting moderate or severe difficulty paying attention was 37% vs. 11% [adjusted RR 3.26, (95% CI: 2.62-4.05)], reporting only sometimes, rarely, or never having fun with peers was 43% vs. 21% [adjusted RR 1.95, 95% CI: 1.65-2.31)], and reporting with/in process of obtaining an IEP was 27% vs. 15% [adjusted RR 1.66, (95% CI: 1.32-2.07)] ( Table 2B). Among adolescents with LC, 13% of the reported IEPs were in process at the time of LC assessment.

Findings from RECOVER-Pediatrics, the largest comprehensive observational cohort study of pediatric LC in the United States, demonstrated that within both school-age children and adolescents, having LC impacted grades, difficulty paying attention in school, and relationships with friends. In addition, both children and adolescents identified with LC were more likely to be receiving or in the process of being evaluated for educational support services through an IEP, compared to those without LC. Given that both educational performance and positive peer interactions are key developmental tasks among both school-age children and adolescents, our findings demonstrate important functional impairments that extend beyond the clinical symptomatology that has been described to date. Such impairments of desirable child developmental experiences may have long-term implications well into adulthood.28,29

There has been much concern about the impact of the pandemic on schooling and school experiences. The public health response to the COVID-19 pandemic focused initially on reducing the rates of spread of infection, largely based on the lessons learned from the 1918 influenza pandemic.³⁰ In the United States, there have been two competing frames of reference, one urging protection of children from infection and the other warning of learning loss and potential harm to both educational outcomes and social development resulting from school changes. Most research focused on educational and social outcomes has focused on these broad pandemic-related environmental changes, which have highlighted significant achievement gaps between pre- and post-pandemic periods with notable lags specifically in marginalized groups.³¹ However, these studies have failed to focus on the adverse long-term effects of the SARS-CoV-2 virus itself on school and social outcomes.

Our findings that LC was negatively associated three interrelated domains well documented to predict long-term educational trajectories, specifically academic-cognitive skills, self-regulation, and social-emotional behaviors, are well supported by other studies both in the United States and internationally.³²⁻³⁵ A survey of 510 caregivers in the U.K. and U.S. of children with LC described changes in physical activity levels and mental health, including difficulty with concentration.⁷ A pilot study in Barcelona studied 50 children and youth with prolonged symptoms following COVID-19 and identified broad impacts regarding school performance,¹⁵ and a large-scale study of adolescents in Denmark showed more school sick days and absences.¹⁴ In the United States, data collected as part of the National Health Interview Survey further supports our findings by connecting pediatric LC and its associated limitations of daily functioning with higher illness-related chronic absenteeism.³⁶ Future research will need to explore the underlying mechanisms through which pediatric LC impacts school performance, such as through neurocognitive impacts, including increased attention difficulties, increased absences, or mood changes.

The observed associations with IEPs are more nuanced. Our cohort contains a substantial proportion of children with active or in-process IEPs, which in turn may reflect the diversity of the cohort including prevalence of other socioeconomic risk factors such as food insecurity. In this cohort our findings highlight the increased need for school-based support services for those with LC. However, these associations may be bidirectional, and we are unable to describe the key causal pathways given our cross-sectional analyses. Some children may require IEPs because of existing chronic conditions that were also risk factors for developing LC, while others are receiving IEPs following new or worsened learning and functional difficulties caused by LC onset.³⁷ Either way, these findings emphasize the greater educational and service needs of children with LC. Future research should comprehensively assess all needed educational services, including 504 Accommodations, which are changes that help to remove barriers to learning, such as extended time of tests, frequent rest breaks and flexible schedules, and Individual Health Plans, a documented plan that guides how to support medical issues while at school.

Importantly, even though LC can present with different symptoms in school-age children and adolescents, we found that both age groups similarly experienced the reported adverse effects on academic outcomes and social interactions. This highlights the critical importance of providing support to children with LC in all grades, throughout elementary school, middle school, and high school. Our findings suggest the importance of developing and evaluating interventions both to improve educational performance and to support peer interactions.³⁸ Peer interactions may suffer for a host of reasons, including impairment of the school experience, LC symptoms preventing typical interactions, such as shared experiences on the playground, or even the cafeteria (e.g., due to change in smell or taste), or withdrawal due to a changed sense of self. In addition, children with LC who are unable to interact at the level of their peers may require accommodation to provide social opportunities that are accessible in the context of their illness.

In the United States, schools that receive federal funding (including virtually all public schools) are required by law to identify and provide reasonable accommodations and modifications to students who have disabilities impacting their learning and to identify and to provide extra services for children needing them. Many children with LC fit this requirement, aligning with the recommendations of the multi-disciplinary collaborative consensus clinical guidance statement on the assessment and treatment of LC in children and adolescents.³⁹ In addition to services such as speech or occupational therapy, other common accommodations that would be helpful for children and adolescents with LC include the provision of extended time for tests and assignments, frequent breaks during classes, exemption from inaccessible physical education requirements, and for more severe cases modified day schedule with reduced hours. They may also require coaching or counseling to support or restore positive and age-appropriate peer-interactions including play.

Our study has several limitations. The school-related functional outcomes were caregiver reported, therefore reflecting caregiver interpretation of their child's experiences, and focused on only a few school-related outcomes. While validated measures were used as available to enhance validity and reliability, future studies will need to integrate objective neurocognitive assessments related to areas of academic performance, executive functioning and attention, as well as school-related information from others, including teachers and the children themselves. LC status and school-related outcomes were also assessed cross-sectionally, restricting causal inference. Future analyses within RECOVER-Pediatrics will incorporate more in-depth investigations of school-related outcomes, such as absences or missed school days related to LC symptoms, and direct longitudinal neurocognitive assessments as well as brain MRI and electroencephalography. Future studies will also need to explore mediators and/or effect modifiers of the association of LC and functional school-related outcomes, including social determinants of health.

We identified the presence of LC using a research index that was validated in part according to its ability to not misidentify LC in children and adolescents who had not had an antecedent COVID infection. While scores above and below the threshold are used to distinguish children with and without LC for research purposes, this classification is not intended for clinical diagnosis, nor are scores below the threshold intended to rule out LC clinically.⁶ While there remains potential for low levels of LC status misclassification, statistical investigations support the research index methodology's ability to distinguish LC status even in the absence of a gold standard LC diagnostic,⁴⁰ and publications introducing these pediatric research indices demonstrate that they are well-correlated with metrics such as PROMIS measures of health and quality of life.⁶ Moreover, this index-based approach has been used widely in research.20,41 Notably, some items in the indices, specifically "refusing to attend school" (school-age index) represent possible overlap between the assessments of exposure and outcomes. However, sensitivity analyses indicate that our findings persist even excluding the use of this item to identify LC, adding support to our approach. An additional limitation is that some children may have underlying health conditions that predisposed them to COVID-19 and its associated outcomes. Future studies will need to disentangle how underlying conditions contribute to the adverse school-related outcomes associated with LC.

Long COVID (LC) in both school-age children and adolescents was negatively associated with caregiver reported school academic performance, attention, and social peer interactions compared to those who were not identified as having LC, suggesting the breadth of functional impairment possible from this emerging chronic condition in children. These findings extend the research on school-related outcomes beyond the impact of both the broad pandemic response and the presence of the acute SARS-CoV-2 infection. These findings also provide evidence of a key disruption of functional status at critical points in the life course, which have profound implications both for the future health of this generation and for public policy. Efforts are needed to develop and evaluate interventions to mediate these negative effects of LC that could last through adulthood. Ongoing study will be needed to assess future recovery and deterioration of the health, functional, and even economic impacts of LC on children and their families.

This research was funded by NIH agreements OT2HL161841, OT2HL161847, and OT2HL156812. The ABCD Study® is supported by the National Institutes of Health and additional federal partners under award numbers U01DA041048, U01DA050989, U01DA051016, U01DA041022, U01DA051018, U01DA051037, U01DA050987, U01DA041174, U01DA041106, U01DA041117, U01DA041028, U01DA041134, U01DA050988, U01DA051039, U01DA041156, U01DA041025, U01DA041120, U01DA051038, U01DA041148, U01DA041093, U01DA041089, U24DA041123, U24DA041147. A full list of supporters is available at https://abcdstudy.org/federalpartners.html.

We would like to thank the National Community Engagement Group, all patient, caregiver, and community representatives, and all the participants enrolled in the RECOVER Initiative.

Harrison T. Reeder reports financial support and administrative support were provided by National Institutes of Health. Lawrence C. Kleinman reports a relationship with Dartnet Institute that includes: board membership. Melissa S. Stockwell reports financial support and administrative support were provided by National Institutes of Health. Tanayott Thaweethai reports financial support and administrative support were provided by National Institutes of Health. Deepti B. Pant reports financial support and administrative support were provided by National Institutes of Health. Kyung E. Rhee reports financial support and administrative support were provided by National Institutes of Health. Terry L. Jernigan reports financial support and administrative support were provided by National Institutes of Health. Lawrence C. Kleinman reports financial support and administrative support were provided by National Institutes of Health. Jessica N. Snowden reports financial support and administrative support were provided by National Institutes of Health and a relationship with Pfizer that includes: consulting or advisory. Amy Salisbury reports financial support and administrative support were provided by National Institutes of Health. Patricia A. Kinser reports financial support and administrative support were provided by National Institutes of Health. Joshua D. Milner reports financial support and administrative support were provided by National Institutes of Health and a relationship with Blueprint Medicine that includes: consulting or advisory. Kelan Tantisira reports financial support and administrative support were provided by National Institutes of Health. David Warburton reports financial support and administrative support were provided by National Institutes of Health. Sindhu Mohandas reports financial support and administrative support were provided by National Institutes of Health. John C. Wood reports financial support and administrative support were provided by National Institutes of Health. Megan L. Fitzgerald reports financial support and administrative support were provided by National Institutes of Health. Megan Carmilani reports financial support and administrative support were provided by National Institutes of Health. Aparna Krishnamoorthy reports financial support and administrative support were provided by National Institutes of Health. Andrea S. Foulkes reports financial support and administrative support were provided by National Institutes of Health. Rachel S. Gross reports financial support and administrative support were provided by National Institutes of Health. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

The content is solely the responsibility of the authors and does not necessarily represent the official views of the RECOVER Program or the NIH.

An overview of the availability of RECOVER observational cohort data for researchers is available ( https://recovercovid.org/data). Because the study is ongoing, data are dynamically updated and have been available as of 2023. To analyze de-identified individual participant data from the RECOVER observational cohort studies, researchers must receive authorization for access for a specified purpose with a signed data access agreement. This authorization is required to maintain the integrity of the data and protect participant privacy. Authorized researchers can access RECOVER observational cohort study data from BioDataCatalyst ( https://biodatacatalyst.nhlbi.nih.gov). Additional information about how to access RECOVER data can be found here: https://bdcatalyst.gitbook.io/biodata-catalyst-documentation/written-documentation/nih-recover-release-notes. Specifically, the post datedOctober 2024 ("RECOVER Pediatric Observational Cohort Study") has links to the data dictionary/REDCap codebooks for the various sub-studies within RECOVER.

Authorship was determined using ICMJE recommendations, and contributions are summarized according to the CRediT taxonomy. Conceptualization: HTR, LCK, MSS, TT, ASF, MLF, MC, RSG; Methodology: HTR, LCK, TT, ASF; Software: HTR, TT, DBP, AK, ASF; Validation: HTR, DBP, AK; Formal Analysis: DBP, AK; Investigation: KER, TLJ, JNS, AS, PAK, JDM, KGT, DW, SM, JCW; Writing: HTR, LCK, MSS, ASF, RSG; Review & Editing: All authors. All authors accepted responsibility for submitting the article for publication.

The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Harrison T. Reeder reports financial support and administrative support were provided by National Institutes of Health. Lawrence C. Kleinman reports a relationship with Dartnet Institute that includes: board membership. Melissa S. Stockwell reports financial support and administrative support were provided by National Institutes of Health. Tanayott Thaweethai reports financial support and administrative support were provided by National Institutes of Health. Deepti B. Pant reports financial support and administrative support were provided by National Institutes of Health. Kyung E. Rhee reports financial support and administrative support were provided by National Institutes of Health. Terry L. Jernigan reports financial support and administrative support were provided by National Institutes of Health. Lawrence C. Kleinman reports financial support and administrative support were provided by National Institutes of Health. Jessica N. Snowden reports financial support and administrative support were provided by National Institutes of Health and a relationship with Pfizer that includes: consulting or advisory. Amy Salisbury reports financial support and administrative support were provided by National Institutes of Health. Patricia A. Kinser reports financial support and administrative support were provided by National Institutes of Health. Joshua D. Milner reports financial support and administrative support were provided by National Institutes of Health and a relationship with Blueprint Medicine that includes: consulting or advisory. Kelan Tantisira reports financial support and administrative support were provided by National Institutes of Health. David Warburton reports financial support and administrative support were provided by National Institutes of Health. Sindhu Mohandas reports financial support and administrative support were provided by National Institutes of Health. John C. Wood reports financial support and administrative support were provided by National Institutes of Health. Megan L. Fitzgerald reports financial support and administrative support were provided by National Institutes of Health. Megan Carmilani reports financial support and administrative support were provided by National Institutes of Health. Aparna Krishnamoorthy reports financial support and administrative support were provided by National Institutes of Health. Andrea S. Foulkes reports financial support and administrative support were provided by National Institutes of Health. Rachel S. Gross reports financial support and administrative support were provided by National Institutes of Health. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

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School Difficulties and Long COVID in Children and Adolescents

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Pediatric Long COVID (LC) is an infection-associated chronic condition following SARS-CoV-2 infection. While research has begun to elucidate clinical phenotypes, functional impacts are not well described.

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Now all three have been diagnosed with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).

Her son Talvin was also diagnosed with Long Covid after three bouts of Covid-19 at the age of eight.

Allsuffer from "overwhelming fatigue", problems sleeping and cognitive issues. Two of them use a wheelchair.

But Harbinder says she is "hopeful" about a new £1.1m study that will analyse the links between Long Covid and ME, between them thought to affect about 1.3 million children and adults in the UK.

Funded by the Buckinghamshire-based ME Association and carried out at Imperial College London, the Rosetta Stone study hopes to look for biomarkers and "decode the immunological profile" of both conditions.

"My eldest daughter, who's now 15, was academically very bright and also sporty - she played cricket at Essex county level," says Harbinder, from Redbridge in north-east London.

"My twins Tara and Talvin, now 12, were also very able, and all three were healthy.

"As a family we went camping; we were outdoorsy people, keen skiers."

Life today is very different.

"They essentially now have learning difficulties," says Harbinder, who gave up her job as managing director of an international consultancy to care for her children.

"They can't remember what things are called, can't finish a sentence, have trouble comprehending a text."

Her children also have distinct symptoms.

"My eldest [Simrun] has also been diagnosed with PoTS, meaning she faints when she stands up," says Harbinder.

Simrun has also been bed-bound at times.

"She is under Great Ormond Street Hospital and is now mobile to a degree, but we still haven't got it under control. There are no answers," says Harbinder.

"She lives with blurry vision, ringing in her ears, pain in her joints and back, constant nausea, inability to eat."

Talvin, meanwhile, has suffered from "debilitating headaches" every day for the past four years.

"We have struggled to access any suitable education for them. No-one really knows what to do with these kids - we're operating in a vacuum.

"Their lives have come to a standstill."

Harbinder welcomes the study and hopes it may offer some answers.

Although her family have been through "some very dark times", she says they have "made peace with the world as it is".

She says: "We laugh every day. We can still watch films together and occasionally venture out to a cafe, and perhaps even the park".

'I'm on long-term sick leave'

Tim Goodwyn, 37, wishes he could "go out on adventures" with his wife and young son, but is unable to leave the house.

"I mostly have to rest in bed. I can't stand for long or walk more than a few steps," he says.

"I can't shower - I can manage a bath once a week and my wife washes my hair. She pushes me in a wheelchair to medical appointments."

Tim, from Bury St Edmunds, Suffolk, was working as a software developer when he caught a virus in November 2023.

"It was just like a bad cold, and I got a negative Covid test.

"Even after the virus went away, I was still really achy and run down and didn't get my energy back."

Tim's energy never really returned.

He tried to "cut down strenuous exercise" while continuing to work and go for walks but took long-term sick leave in August 2024.

"My body has lost the ability to recover from exertion," he says.

"If I do something, I'll have even worse fatigue a day or two later, along with things like headaches, nausea, heart palpitations, and going from hot to the chills.

"The closest thing there is to a treatment is having rest. We still don't know what's causing this illness.

"It's a complex illness. It affects your brain, nervous system, muscles, heart - all sorts."

Tim says research into ME has historically been underfunded, but that the amount being undertaken has increased in the past five years, partly due to Covid.

"This piece of research is not magically going to find a cure, but it could get us closer," he says.

The three-year study will examine 250 people with ME and 250 with Long Covid, alongside matched healthy groups.

Stool, blood and saliva samples from volunteer participants will be analysed to build "an immunological profile" of both diseases.

"Researchers still don't fully understand what happens in the immune system that causes lasting symptoms for some people and not others," says Imperial.

It will also collaborate with the DecodeME team in Edinburgh and the ME/CFS Biobank at the London School of Hygiene and Tropical Medicine.

Dr Charles Shepherd, honorary medical adviser at The ME Association, says: "We now know that a significant proportion of people with Long Covid meet the diagnostic criteria for ME.

"It took an awfully long time for the medical community to pick this up, and recognise these are two overlapping conditions.

"It made sense to see what they have in common."

Prof Danny Altmann, from the Department of Immunology and Inflammation at Imperial, says there had been "little research" into the relationship between both "post-infectious, persistent conditions".

"Millions have had their lives destroyed by the disabilities that come with Long Covid and ME/CFS," he says.

"We're hoping that our work will make clearer the underlying mechanisms and inform further clinical trials and therapeutics in this area."

Dr Rae Duncan is a consultant cardiologist at Newcastle Hospitals NHS Foundation Trust and a Long Covid expert adviser at the World Health Network.

"I treat patients from 16 onwards, and to see schoolchildren whose lives have completely destroyed by this virus is horrific," she says.

"I also see young parents who are so ill, they cannot care for their children.

"What we need desperately is the level of funding research to match the level of need and disability."

She believes the new study is "a brilliant idea".

"We absolutely need far more biomedical research into the similarities and differences between Long Covid and ME/CFS, examining effects on brain, blood vessels, immune system autonomic nervous system, viral persistence and mitochondrial function, to help identify new and better treatments

"While they're not the same condition, both of them are incredibly debilitating."

A Department of Health and Social Care spokesperson said its ME/CFS delivery plan would "transform care" and "improve training for NHS staff".

"Everyone with ME/CFS and Long Covid deserves to receive the care and support they need.

"That's why we have invested £3.2m in the DecodeME study to unlock the genetic secrets of ME/CFS, while also funding vital research into diagnosis and treatment for Long Covid," they said.

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Long Covid and ME patients 'hopeful' about Rosetta Stone study

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The £1.1m Rosetta Stone study hopes to make a breakthrough by comparing both conditions.

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Children with Long Covid Heard At The UK COVID Inquiry | Long Covid Kids | 23rd October 2025

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Covid Inquiry uncovers ‘forgotten’ children left disabled by Long Covid

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Long Covid Kids supports over 11,000 children whose parents say they have been ‘gas lit’ by NHS, schools and social services, as the inquiry uncovered pandemic-era advice against diagnosing the condition

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Thank you Clara and Emma for speaking to @c5news “With the right support from schools we would be able to learn in ways that help us manage our symptoms and stay included. Even if it looks different, if it helps us, it’s the best way forward.” Says Clara Long Covid kids believes that all children should be able to thrive and look forward to a positive future. #longcovidkids #longcovid #longcovidawareness #charity #charitywork #mecfs #longcovidrecovery #covidinquiry #longcovidsymptoms #children #school #education #health | Long Covid Kids

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Thank you Clara and Emma for speaking to @c5news “With the right support from schools we would be able to learn in ways that help us manage our symptoms and stay included. Even if it looks…

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Lives Interrupted: The Voices of Young People with Long Covid | UK COVID Inquiry | Combination Dance

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Impact of COVID-19 infection on the sleep of infants and toddlers - PubMed

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Our findings demonstrate that COVID-19 infection causes significant and prolonged disruptions to sleep architecture in infants and toddlers, with these effects persisting beyond the acute infection phase and being moderated by specific environmental factors, highlighting the need for routine sleep a …

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As my daughter got sicker and sicker, our quest for answers dragged on. How did we all miss the bacteria taking over her body?

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I write about nature, but when Milly got sick with a mystery illness, it never occurred to me that a long-forgotten tick bite could be the cause

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When children are more at risk of getting long Covid

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Notifications can be managed in browser preferences.

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Study challenges notion that Covid is ‘mild’ for children

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More than 6 million American children suffer from long Covid which can lead to life-threatening complications

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Covid Inquiry: ‘Since having Covid my life’s completely changed’

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A teenager has told the Covid-19 inquiry she often feels “left out” after missing so much school.

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ByBranwen Jeffreys, Education editor and Erica Witherington

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Covid-19: Children and teenagers share impact of pandemic in new report

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Children describe positive memories of family time, as well as the darker side of pandemic life online.

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ByBranwen Jeffreys, Education editor and Erica Witherington

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Covid-19: Children and teenagers share impact of pandemic in new report

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Children describe positive memories of family time, as well as the darker side of pandemic life online.

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“Life changed so quickly”: Major new research reveals pandemic’s profound impact on children and young people as Inquiry prepares for Module 8 hearings - Archives

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The UK Covid-19 Inquiry has today published groundbreaking research after hearing directly from 600 children and young people aged 9-22, revealing a multitude of profound, distressing and life-altering ways the pandemic affected them.

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15 reactions · 3 comments | In this clip from @bbcbreakfast Avalyn speaks about her experience of the early pandemic, and the lasting effects of Long Covid. #longcovidkids #longcovid #longcovidawareness #charity #charitywork #longcovidrecovery #bbc | Long Covid Kids

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In this clip from @bbcbreakfast Avalyn speaks about her experience of the early pandemic, and the lasting effects of Long Covid. #longcovidkids #longcovid #longcovidawareness #charity #charitywork…

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“My childhood ended overnight” Rachel’s Story| Long Covid Kids Real Life Stories

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“My name is Rachel and it was early in the first lockdown when I got ill. I was 12 years old and the message at the time was that Covid didn’t affect children, so I believed it”Rachel now 18 is still living with symptoms such as crushing fatigue, brain fog, nausea, indigestion, bloating, body aches, muscle weakness and heat intolerance. She has also been diagnosed with POTS. She shares her journey, in her own words below.When I got ill I thought I would be better in a week, which soon stretched

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The Psychosocial Impact of Long Covid in Children and Adolescents: A Systematic Review

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It is increasingly recognised that Long Covid may have profound psychosocial implications for children and adolescents, yet systematic reviews have predominantly synthesised findings pertaining to the impact of Long Covid in adults and the COVID-19 pandemic more broadly. This systematic review aimed to synthesise evidence related specifically to the psychosocial impact of Long Covid in children and adolescents.

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Family experiences of Long Covid - Overview

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This study is one of four studies on Covid-19 in the UK published on the HEXI website:

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Hidden struggles: Unveiling long COVID in children

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Families, doctors take their experience with long COVID to Congress to share stories, art and ask for help.

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Lego Animation Long Covid - Supporting together by Woody Woodhouse

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How schools can better support learners with medical needs and why inclusion starts with staying connected - AV1 by No Isolation

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Diagnosis and Management of Long COVID in Children and Adolescents: An Update after 5 Years of Clinical and Research Experience - Current Pediatrics Reports

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Purpose of Review Five years into the COVID-19 pandemic, long COVID in children and adolescents has emerged as a complex, chronic condition with distinct clinical features and challenges that can affect the quality of life of children and adolescents. Recent Findings Defined by the inclusive 2024 NASEM criteria, long COVID is recognized as a multisystem illness that can arise even after mild or asymptomatic infections, with symptoms that persist, fluctuate, or relapse over time. Pediatric patients commonly experience fatigue, cognitive dysfunction, orthostatic intolerance, and conditions such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and mast cell activation syndrome (MCAS), often with overlapping presentations. Current data highlight key risk factors—including female sex, older age, joint hypermobility, and earlier viral variants—while vaccination has been shown to offer some protective benefit. Summary Effective management for pediatric long COVID requires individualized, multidisciplinary care focused on symptom relief and functional improvement. As clinical understanding continues to evolve, there remains an urgent need for standardized diagnostic tools, consistent outcome measures, and coordinated research efforts to guide treatment and improve quality of life for affected children.

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Characterizing Long COVID Symptoms During Early Childhood

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This cohort study evaluates which prolonged symptoms in early childhood are associated with SARS-CoV-2 infection.

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Study Reveals Symptoms Of Long COVID In Young Kids – Here’s What To Look Out For

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The authors say it’s proof a “one-size-fits-all” approach doesn’t work with this condition.

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Equity in research: a global consensus statement on the urgency of including children in long COVID clinical trials

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ExtractLong COVID, a post-acute infection syndrome triggered by SARS-CoV-2, is now recognised as a major cause of disability worldwide [1], affecting both children and adults. The World Health Organization (WHO) defines long COVID in children as: “new onset of symptoms impacting everyday functioning that last at least 2 months, occurring within 3 months of probable or confirmed acute SARS-CoV-2 infection” [2]. While elegantly designed clinical trials have been established to identify effective treatments for long COVID, children are notably excluded. We propose that inclusion of children in long COVID clinical trials is justified, and unwarranted age-related exclusion criteria for current clinical trial designs impose unintentional and unnecessary barriers to treatment for children with long COVID.

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Millions of kids suffering from long COVID, study finds

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A recent study estimates millions of children are suffering from long COVID. Michael George has more on why we still know so little about the illness and one mother’s search for answers.

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Long-COVID in children and their parents: A prospective cohort study

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Long-COVID in children and their parents: A prospective cohort study

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Long COVID clinical evaluation, research

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Long COVID clinical evaluation, research

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and impact on society: a global expert

consensus

Andrew G. Ewing1,2*, David Joffe2,3,4, Svetlana Blitshteyn2,5,6, Anna E. S. Brooks2,7,8,9, Julien Wist

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41K views · 671 reactions | Molly has been sharing her “horrible” experience of long Covid. Now aged 16, Molly has been living with the debilitating condition since she was 12. https://bbc.in/3EI6YHf | BBC Dorset | Facebook

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Molly has been sharing her “horrible” experience of long Covid. Now aged 16, Molly has been living with the debilitating condition since she was 12. https://bbc.in/3EI6YHf.

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Alastair FeeBBC South Health Correspondent

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Weymouth teen to travel 300 miles for long Covid treatment

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Molly says navigating her long Covid symptoms for the last four years has been “horrible”.

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Cardiovascular post-acute sequelae of SARS-CoV-2 in children and adolescents: cohort study using electronic health records - Nature Communications

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Post-acute sequelae of SARS-CoV-2 infection affecting the cardiovascular system have been reported, but evidence in young people is limited. Here, the authors quantify the incidence of a range of outcomes in children and adolescents using electronic health records from the United States.

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An 18-year-old who has been suffering from long Covid for five years says she turned to a private clinic for treatment after feeling "brushed off" by the NHS.
Tilly Galloway, from Tamworth, has experienced heart issues, dizziness and fatigue since catching Covid-19 when she was 12.

"My life just completely changed," she said. "I was always running around, active and now some days I can't get out of bed or get dressed."

The NHS said staff were working hard to help patients with the "new and complex condition", and specialist clinics had supported over 100,000 since 2020.

Walking through Birmingham's Cannon Hill Park, Tilly looks like any other 18-year-old.

But her exhaustion and breathlessness mean she can only manage short distances about once a week. Sometimes, if she wants fresh air, she uses a wheelchair.

"I really don't like it. I feel really self-conscious," she said.

"Whenever I do go out in it, I always get stares, as if people are wondering why I'm using one."

She is one of more than two million people in the UK with long Covid, which can also cause joint pain and brain fog.

At first, Tilly turned to the NHS for help, where she was told chest pains and breathlessness were caused by asthma and given an inhaler.

Although this reduced her shortness of breath, tests later showed she was not asthmatic and diagnosed long Covid.

Tilly often felt her symptoms were not taken seriously. "They just sort of brushed it off," she said.

"They all just blamed it on anxiety and mental health and said I needed counselling.

"It just constantly feels like you're fighting a losing battle."

Often too ill to go to school, she ended up having to leave in year 10, with her mum changing jobs to work from home and care for her.

After an echo scan, she was eventually diagnosed with postural tachycardia syndrome (PoTS), a condition long Covid sufferers are more likely to be affected by, where the heart rate increases very quickly after getting up.

The NHS also diagnosed gastroapresis, where food passes through the stomach more slowly than it should.

She was sent to an NHS long Covid clinic but said she did not receive much support beyond a physiotherapist and occupational therapist, who were only able to offer advice on adapting to her symptoms.

After a lot of different tests, her paediatrician said her condition was "too complex", leaving her with no answers, she said.

This prompted Tilly's mum, Nicola Booton, to join a Long Covid Kids website, which led her to Dr Ben Sinclair, a GP based in Birmingham.

He set up his own private long Covid clinic after recovering from the illness himself and is working with the University of Exeter on research into the condition.

Dr Sinclair described her condition as complex, due to "significant risk factors".

"Her case demonstrates that long Covid is not driven by a single factor," he said.

He hopes what he has learnt from patients like Tilly will assist in producing more guidelines for young people and children dealing with long Covid.

"What we're finding is that some people produce way too many antibodies and some people produce very little at all," he says.

"And those two groups get this fatigue syndrome because their immune system is either overactive or exhausted.

"There are some medications that can help, but the research is lagging behind."

Since visiting Dr Sinclair, Tilly has been on a treatment plan where she has to take medication every day.

"It isn't cheap," said Ms Booton, who estimated she had spent about £20,000 on private treatment. "Financially there's been a big strain on us as a family."

But, she feels it has been worth the cost to see Tilly getting stronger and making some steps towards recovery.

Meanwhile, Tilly is being home-schooled and working towards her maths GCSE, when she feels up to it.

She hopes to contribute more in the future by becoming a children's paediatric nurse.

An NHS spokesman advised anyone concerned about ongoing symptoms after Covid to talk to their GP.

"Since 2020, our specialist post-Covid clinics have supported over 100,000 people with the long-term physical, cognitive and psychological effects of coronavirus," the spokesperson said.

They added the NHS had been "world leading" in "designing and implementing new pathways of care" to support affected patients.

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Tamworth woman, 18, says she was told her long Covid was anxiety

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Eighteen-year-old Tilly Galloway says she has turned to a private clinic to treat her symptoms.

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Clip from BBC Midlands Today 18-year-old Tilly Galloway has battled #LongCovid since she was 12. It was Initially dismissed by medics. "They all just blamed it on anxiety and mental health and said I needed counselling." https://t.co/nAye2PxtWZ

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Clip from BBC Midlands Today 18-year-old Tilly Galloway has battled #LongCovid since she was 12. It was Initially dismissed by medics. "They all just blamed it on anxiety and mental health and said I needed counselling." https://t.co/nAye2PxtWZ

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Clip from BBC Midlands Today 18-year-old Tilly Galloway has battled #LongCovid since she was 12. It was Initially dismissed by medics. "They all just blamed it on anxiety and mental health and said I needed counselling." pic.twitter.com/nAye2PxtWZ
— Adam (@ABrokenBattery) March 26, 2025

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Clip from BBC Midlands Today 18-year-old Tilly Galloway has battled #LongCovid since she was 12. It was Initially dismissed by medics. "They all just blamed it on anxiety and mental health and said I needed counselling." https://t.co/nAye2PxtWZ

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Clip from BBC Midlands Today 18-year-old Tilly Galloway has battled #LongCovid since she was 12. It was Initially dismissed by medics. "They all just blamed it on anxiety and mental health and said I needed counselling." https://t.co/nAye2PxtWZ

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Clip from BBC Midlands Today 18-year-old Tilly Galloway has battled #LongCovid since she was 12. It was Initially dismissed by medics. "They all just blamed it on anxiety and mental health and said I needed counselling." https://t.co/nAye2PxtWZ

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Disabled, discharged and disappearing from view. A snapshot review of Long Covid clinics across the UK.

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At its peak, more than 120 Long Covid services were operational across the UK. However, only 46 have confirmed they will remain open, while 31 are under review, 24 have already closed or are expected to close, and 20 did not respond. The impact is particularly concerning for children and young people, with just 8 of the 13 specialist pediatric hubs established in 2021 confirming they will continue to function. NHS England’s ring-fenced funding for Long Covid services set to end in March 2025.

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Disabled, discharged and disappearing from view. A snapshot review of Long Covid clinics across the UK.

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At its peak, more than 120 Long Covid services were operational across the UK. However, only 46 have confirmed they will remain open, while 31 are under review, 24 have already closed or are expected to close, and 20 did not respond. The impact is particularly concerning for children and young people, with just 8 of the 13 specialist pediatric hubs established in 2021 confirming they will continue to function. NHS England’s ring-fenced funding for Long Covid services set to end in March 2025.

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Long Covid & Me | Understanding Long Covid In Children And Young People

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Long Covid & Me | Understanding Long Covid In Children And Young People

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Long Covid & Me | Understanding Long Covid In Children And Young People

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Long Covid Kids (@long_covid_kids) • Instagram reel

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23 likes, 0 comments - long_covid_kids on March 21, 2025: “Our CEO Sammie McFarland spoke to @bbcdorset this morning about the 5 year anniversary of the Covid lockdown and the lasting impact of Long Covid. Please listen 👂 #longcovidkids #longcovid #longcovidawareness #charity #charitywork #radio #radiointerview #mecfs #longcovidsymptoms #longcovidrecovery #children”.

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Long Covid Kids (@long_covid_kids) • Instagram reel

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19 likes, 0 comments - long_covid_kids on March 21, 2025: “Thank you to Molly @woody_theassistance_dog for speaking to @bbcdorset this morning and helping us raise awareness about Long Covid in Children and Young people. #longcovidkids #longcovid #longcovidawareness #charity #charitywork #mecfs #longcovidsymptoms #longcovidrecovery #children #bbc #radio #radiointerview #assistancedog #dogsofinstagram”.

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Debt, job loss and eviction weigh on parents of children with long COVID

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Five years after the World Health Organization declared a pandemic, the families of over 111,000 children in the U.K. sick with long COVID feel invisible.

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We covered earlier the article from BBC Wales which featured Kaylee and Bethan & their battle not be forgotten. This is a Welsh version which focuses on Bethan alone - as the Welsh speaker.

For the Non Welsh speakers , Bethan talks about :-

How she intially caught COVID

How the support initially offered didn’t last

Her experiences navigating higher education and university

There’s also a beautiful picture of her wearing her Long Covid Kids T-shirt !

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‘Pob dydd yn wahanol’ i fyfyriwr, 20, sy’n byw gyda Covid hir

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Cafodd Bethan Mai Covid-19 ym mis Medi 2021, pan roedd hi newydd ddechrau yn y chweched dosbarth.

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Michela RivaBBC NewsJordan DaviesBBC News

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Long Covid: Young people describe ‘battle’ to access NHS care

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Kaylee, 17, who experiences dizziness and shortness of breath, says she has not seen an NHS specialist for two years.

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Q&A: UK doctor says Britain is failing children with long COVID | Context

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Pulmonologist Binita Kane helped set up a long COVID clinic after struggling to get treatment for her daughter

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UK parents quit jobs to care for children with long COVID | Context

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Long COVID ruins children’s health and education - families in Britain battle to raise funds for treatment

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‘We’re losing decades of our life to this illness’: long Covid patients on the fear of being forgotten

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Five years on from March 2020, millions of people still face debilitating symptoms, with huge repercussions on public health and productivity. But politicians are starting to pretend the pandemic never happened

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Doctors detect lung abnormalities in kids and teens with long COVID

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Radiological Society of North AmericaFeb 25 2025

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Advanced MRI uncovers lung abnormalities in children and teens with long COVID

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An advanced type of MRI uncovers significant lung abnormalities in children and adolescents with long COVID, according to a new study published today in Radiology, a journal of the Radiological Society of North America .

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After COVID-19, kids more likely to have GI symptoms for up to 2 years

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Researchers today in JAMA Network Open say children with previous COVID-19 infection have a 25% to 28% higher risk of developing new gastrointestinal (GI) tract symptoms for up to 2 years than kids who did not report SARS-CoV-2 infections.

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Long COVID impacting more than 1 million children: CDC study suggests

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A new CDC study published Monday found that more than 1 million children were affected by long COVID in 2023. Higher levels were found in lower-income households.

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Youth Advocate Rosie met the Health Minister of Northern Ireland to discuss Long Covid Clinics

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On 23 January, LCK young advocate Rosie Pidgeon met the Northern Ireland (NI) Health Minister. He agreed to meet her to talk about her experience of NI’s Long Covid Clinics. See A Teenager’s Experience of a Long Covid Clinic in Northern IrelandThe Minister, Mike Nesbitt, invited her to his office in Stormont. In this photo, Rosie is waiting with her FFP3 mask, CO2 monitor and personal HEPA filter. When we contacted the Minister’s staff in advance, he agreed to meet Rosie in a room with open wind

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Why is it necessary to treat children, adolescents and young adults with long covid (and ME/CFS)?

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Distinct pro-inflammatory/pro-angiogenetic signatures distinguish children with Long COVID from controls - Pediatric Research

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Pediatric Research - Distinct pro-inflammatory/pro-angiogenetic signatures distinguish children with Long COVID from controls

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Frontiers | Diagnostic challenges of long COVID in children: a survey of pediatric health care providers’ preferences and practices

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IntroductionGiven the challenges in diagnosing children with long COVID, we sought to explore diagnostic practices and preferences among clinicians.MethodsA…

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Post‑COVID syndrome in children compared with adults (Review)

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Post‑COVID‑19 syndrome (or long‑COVID) was recognized as a clinical entity as early as in the spring of 2020, when it was documented that a non‑negligible number of patients with COVID‑19 continued to exhibit symptoms several weeks following severe acute respiratory syndrome coronavirus 2 (SARS‑CoV‑2) infection. Although in the beginning of the COVID‑19 pandemic it was considered that almost all SARS‑CoV‑2 infections in children and adolescents were either asymptomatic or mildly symptomatic, it was duly noted that children and adolescents may also experience prolonged symptoms and may therefore also manifest post‑COVID syndrome. It was subsequently noted that post‑COVID syndrome in children may involve multiple organs and systems and persist, in the majority of cases, for several months; however, in some cases symptoms persisted even following 1 year of follow‑up. There is also evidence to indicate that children with post‑COVID syndrome are at an increased risk of developing anxiety, depression or loss of appetite, while the overall impact of post‑COVID syndrome on the developmental and psychological domain and overall well‑being of children remains largely unknown. The present review discusses the current state of knowledge on post‑COVID syndrome in children and compares it with that of adults. Issues of pathogenesis, prognosis, the role of vaccination and implications for future research are also discussed.

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Lessons from the US: Long COVID in Children – Latest Research

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Fireside Chat Series. Episode 17 | Lessons from the US #3: Long COVID in Children with Dr. Lael YonkerVIDEO TWENTYTHREE: Welcome to The Long COVID Clinic’s F…

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Long Covid allegations of FII intertwined with the rise of the far right

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With Donald Trump’s election in the US, a wave of uncertainty has swept the globe: for the environment, gender, war, and health. However, the undermining of women’s rights has become a major theme…

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Supporting a child with long COVID – tips from parents of children living with the condition

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Long COVID is the patient-preferred term used to describe symptoms lasting more than four weeks after a COVID-19 infection. Children and young people can also suffer from long COVID following even a mild infection with the virus. The latest figures from the UK’s Office for National Statistics show an estimated 69,000 children are living with l…

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A 24-month study reveals that 7.2% of children consistently experience long-COVID symptoms, with tiredness, sleep issues, and headaches most commonly reported, highlighting the need for targeted interventions.

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Study finds 70% of young people with long COVID recover within two years

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Most young people who were confirmed to have long COVID three months after a positive PCR test had recovered within 24 months, finds a study led by UCL researchers.

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Long COVID syndrome in children: neutrophilic granulocyte dysfunction and its correlation with disease severity - Pediatric Research

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Pediatric Research - Long COVID syndrome in children: neutrophilic granulocyte dysfunction and its correlation with disease severity

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Long Covid study finds teenagers suffered with symptoms for more than two years

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Girls were more likely than boys to have long Covid

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Critically ill teens unable to sit exams can now get grades

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Disabled pupils, such as those with cancer, who can't sit exams can now get their grades after campaign by families

Disabled pupils, such as those with cancer, who can't sit exams can now get their grades after campaign by families

Critically ill teenagers who can't sit exams can now receive GCSE and A-level grades, following a year-long campaign against "deeply unfair" policies.

Schools Week helped expose last year how children with life-threatening illnesses or devastating injuries from accidents had to struggle through exams to get a grade.

More families caught in the same position this year launched a 6,000-strong petition calling for students to get teachers' grades, which were used during the pandemic when national tests were cancelled.

Exam boards told parents last year that children undergoing cancer treatment had to sit at least one exam to qualify for special consideration.

But this week, updated guidance has clarified that in "rare and exceptional circumstances" a grade "may" be available.

Where a school cannot identify additional reasonable adjustments - such as extra time or sitting tests in hospital - an exam board could determine each case on an individual basis.

The Joint Council for Qualifications guidance adds that a board "may be able to determine grades using suitable alternative assessment evidence".

But the candidate must be disabled within the meaning of the Equality Act 2010, and the school "must" have medical evidence to confirm this.

Concerns remain

Campaigners and MPs welcomed the change, but urged ministers to communicate it more widely.

Caroline Ansell, the Eastbourne MP who pushed the government for answers, said the "system is moving in the right direction" after the "deeply unfair" situation.

But Cath Kitchen, chief executive of the National Association for Hospital Education, said while the guidance is "really helpful", she "feels that it falls short of reassuring" families that they will definitely get a grade if they are too unwell to sit exams.

It also emerged that while "hundreds" of sick children got grades from the exam boards in 2022, there are concerns for those that may have missed out.

Ansell told MPs how, during the campaign, Ofqual claimed existing equalities legislation allows for the awarding of grades if schools provide "suitable evidence".

The exams regulator told her "several hundred students" were awarded grades that way last year.

But Ansell told a Westminster Hall debate she fears thousands may have "been overlooked and disenfranchised because their school did not recognise the signposting in the guidance last year".

Responding in the debate, schools minister Nick Gibb said he is "pleased" boards have now put in place a "clear process that allows students with a disability that prevents them taking their scheduled exams" after "all the hard work they put in during their studies".

He said senior examiners will use robust evidence - which is being collected this year by schools under new contingency arrangements - to determine grades.

JCQ has shared the guidance with schools and government will look at promoting the document, he added.

'Her results meant so much to her'

Last year, Schools Week reported how 16-year-old Grace Sanderson, from North Yorkshire, managed to sit two GCSE papers despite being diagnosed with acute myeloid leukaemia months earlier.

Her mum Emma said on results day Grace "broke down" in the school car park seeing "everyone cheering and celebrating" at Northallerton High School.

But the exam boards, including AQA, decided to give her a full suite of grades - including an 8 in English literature and four grade 7s.

It's not clear when this decision was made, but Emma said her daughter's "GCSE results meant so much to her".

Grace died just two months later.

The row resurfaced again this year when 16-year-old Lara Kyprianou-Hickman from Eastbourne, who was undergoing chemotherapy after being diagnosed with Hodgkin's Lymphoma cancer, was told she had to sit exams or would only get a "certificate of recognition", it was reported.

Ansell told MPs Lara will now be awarded GCSE grades based on coursework, mocks and teacher assessment.

Gibb said families who "find themselves in difficult situations" before exams should contact exam boards directly.

A JCQ spokesperson said: "Our primary focus is to put arrangements in place to help disabled students take assessments. We also consider reasonable adjustments that schools and colleges suggest to us for individual students that are new or not highlighted in our documents.

"We keep our approach to students with disabilities under regular review to look for ways to support them and review each individual application on a case-by-case basis."

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Critically ill teens unable to sit exams can now get grades

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Critically ill teenagers who can't sit exams can now receive GCSE and A-level grades, following a year-long campaign against 'deeply unfair' policies

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We have worked with the Royal College of General Practitioners to co-produce a leaflet for GPs which will provide eas y reference to help doctors recognise, diagnose and identify treatment s for Long Covid symptoms

Health professionals have told us that they lack clear information as to which treatments they can prescribe within the NHS for their patients. With RCGP endorsement, this publication will support both doctors and patients in accessing appropriate therapies for Long Covid symptoms

This leaflet will be distributed via the NHS and NHS Trusts - but please do download it and send to your own GP either as a PDF or printed if you prefer. We hope that it will serve as a useful resource for both patients experiencing Long Covid symptoms and clinicians involved in diagnosing and treating this condition.

This is just the first in a series of leaflets that Long Covid SOS will be publishing over the coming months that will help in the understanding of Long Covid, how to manage the condition and identify what help is available

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We have been working with the Royal College of General Practitioners to co-produce a leaflet for GPs which will provide easy reference to help doctors recognise, diagnose and identify treatments for Long Covid symptoms Health professionals have told us that they lack a comprehensive guide as to which treatments they can prescribe within the NHS for their patients.

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Developing long Covid is not the first time Heymans has been struck down by an illness. Aged 16, she got glandular fever and contracted Myalgic encephalomyelitis or chronic fatigue syndrome (MECFS). Heymans says, "I taught myself chemistry, physics and maths A-Level from my bed and that was the thing that kept me going... Even though I couldn't go out and see my friends, I could still develop my knowledge. To all of the kids who are dealing with long Covid, I'd say not to give up and to keep pushing towards your dreams."

To Heymans, science used to be about socialising, jotting ideas onto a whiteboard and sparking ideas off of other scientists, but as she's now housebound, "That's completely gone for me", she says. This hasn't stopped her though. She reads and draws on her colleagues' ideas, communicates via email and has one-on-one conversations with people virtually. She has learnt that, "Part of living with long Covid is accepting what your limitations are, and adapting your life to be as full as it can be with those limitations". She says, "I haven't given up research. I'm writing a paper right now. It's just the way I'm doing it is different." For Heymans, "it's important to show everyone that people with long Covid are not 'lazy' or 'work-shy' which we hear all too often."

Victoria Priest has also had to navigate her way through long Covid. "I get a lot of pain in random places at random times. That has stopped me from doing a lot of things I used to do and loved quite a bit", says Priest. When she was younger, Priest was doing training in lifeguarding which she hasn't been able to get back to doing. She was also a Girl Guide but has been able to do that online for about a year. For two years, she couldn't play her cello and just recently started playing again. Luckily, her cello teacher restrung a ukulele with cello strings and adapted music pieces for her to play. The charity, Long Covid Kids (LCK) has helped Priest. In 2021, it was set up to publicly stand up for young people living with long COVID. Priest's mum began trying to find support for her daughter and discovered LCK.

I got in touch with LCK to ask for their thoughts on the latest long Covid statistics. Merel van der Knoop , musical director of the Long Covid Kids Choir says, "there are 62,000 young people in the UK with long Covid [however there has been] no development in new treatment. We desperately need clinical trials and paediatric research... We're almost four years in and there is nothing for long Covid. No new treatment centres. Some of the paediatric long Covid hubs are actually closing down."

Heymans also has positive memories of her teachers. Thanks to a physics teacher, Mrs Elliot, who had spent a summer doing a teacher training course at NASA in Florida, US, Heymans became interested in astronomy. When they were struggling for inspiration in class, Heymans and her classmates would say, "Oh, Mrs Elliot tell us something about NASA and space!". Heymans says, "Physics can be a bit boring at times. Yes, I can say that!", but Mrs Elliot helped change that. It wasn't until later on that Heymans realised every piece of information relating to astronomy and space that her teacher had shared with her was linked to the physics on the curriculum.

Something else that sparked Heymans' fascination with astronomy was a trip to Scotland in her early teens. Heymans grew up in the home counties. She describes it as "that really densely populated ring around London, where the night sky is just orange... It wasn't until I came on holiday to Scotland, and went out one night and saw that there were loads of stars". Heymans was transfixed by both the science and beauty of the night sky and says, "I haven't lost that skill today." The night before our interview, she said she was out lying down on a blanket looking at the stars. She says, "It's so beautiful just imagining what's out there, your imagination can go wild."

Now a mother, Heymans sees the positive impacts astronomy can have for younger people. After her children returned home from a school trip, she had an idea that telescopes could be installed at Scotland's residential outdoor learning centres. She says, "The centres are in these fantastically remote locations, so the skies are really dark. It's a perfect place to do astronomy." Heymans says if she could have one wish come true, she would make sure that everyone could see what the night sky looked like to our ancestors before there was so much pollution in the atmosphere.

Heymans' favourite thing about space is time travel. She says "when you look up into the night sky, you are seeing the universe as it was in the past". It takes time for light to travel from one part of the universe to another and it travels at a fixed speed. For example, the sun is so far away that when we look at it, it has taken eight minutes to reach us. So, when we look at the sun we're seeing it as it was eight minutes ago. "The millions of stars that we can see in the night sky are light years away, and the galaxies that I can see through my telescope are billions of light years away. I love the fact that just by lying in my backyard and looking up at the night sky, I'm looking back in time, and I find that super exciting", says Heymans.

Priest's favourite thing about astronomy and space is "the mystery behind it all. With being ill, I was watching YouTube one day and my interest just grew."

Seeing more women pursuing careers in science is also of interest for Priest and her mum, and this is something that Heymans is passionate about too. Speaking to The Guardian, she said "It's very hard to aspire to be something if you can't see someone who looks like you in that job."

I asked her about becoming the first woman to hold the position of Royal Astronomer of Scotland and she said, "It's crazy that in the 2020s, we still have first women. That shouldn't be... but things are changing and I'm really proud to be part of that change. It doesn't matter who you are, where you come from, what your background is, what your gender is. Science is exciting, wonderful, creative, innovative, and it's for everyone. It doesn't care about your background. It's an exciting thing to do, and it's fun to be able to share that with everyone."

To excel in science, Heymans says you have to be able to speak the language of science which is maths. She says, "There's a misconception that maths is somehow harder than anything else at school. I would encourage people to rise to the challenge of maths. It's really easy when you find something difficult to just give up on it, but maths is one of the most important things to work on at school because from that everything else flows... Maths is the core of it all."

In terms of her title, Astronomer Royal for Scotland, Heymans explains that one of the reasons why the British Empire was successful was because of navigation. She says, "The key to navigating was astronomy and the stars, and the Astronomer Royal is absolutely essential for navigation. To navigate, you need both the stars but also an accurate measurement of the time." Therefore, Heymans says one of the first Astronomer Royals was responsible for clock work. Today, the role has changed. Heymans' task as Astronomer Royal is all about telling people about astronomy in Scotland, and encouraging more people to get involved in all of the different activities that are currently going on in Scotland. Throughout her battle with long Covid and in all of her scientific work, Heymans says all of her energy is dedicated to astronomy.

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‘We need Psychologists… but please don’t psychologise Long Covid’ | BPS

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Dr Aspa Paltoglou hears from physician Dr David Joffe about what’s needed from our discipline; from Janina Bradshaw about what Psychotherapists can do; and from occupational therapist Kirsty Stanley.

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A substantial number of people who survived the acute phase of -19 have never made a full recovery. Psychologists are breaking new research ground to understand the causes, effects, and possible treatments for so-called "long Covid," particularly related to its impact on cognition and mental health.

The perils of long Covid include fatigue, lowered endurance, reduced cognitive efficiency, and mental health effects, such as anxiety and depression.

"Data from our racially and ethnically diverse group of patients, who are assessed approximately four months after acute illness, suggest that more than two thirds are continuing to experience cognitive dysfunction," said Tracy Vannorsdall, PhD, ABPP-CN, a clinical neuropsychologist who studies and treats patients in the Johns Hopkins Post-Acute Covid-19 Team (JH PACT) clinic in Baltimore, Maryland.

Research by Vannorsdall and other psychologists shows that patients who endured severe illness requiring a stay in the intensive care unit (ICU) display significant cognitive and neuropsychological deficits, which tracks with long-established research on the impact of ICU treatment on the brain. However, both psychologists and neuroscientists have detected measurable changes in the brains of people who had less-severe cases, and many long Covid sufferers who had mild illness report ongoing cognitive dysfunction and psychological distress.

Untangling the risk factors for developing long Covid and its mental health symptoms is a challenge for researchers and practitioners alike. While some research indicates that people with a history of anxiety are at higher risk for developing long Covid, psychologists are learning that previous mental health issues cannot explain the myriad symptoms long Covid patients endure. Now, experts theorize that SARS-CoV-2, the virus that causes Covid, has some harmful effect on the brain, either directly through infection or through resulting inflammation. Additionally, emerging evidence suggests that there may be nonpsychological factors that make some people more susceptible to developing long Covid, such as previous infection with a different virus.

The numbers

According to the U.S. Centers for Disease Control and Prevention (CDC), long Covid symptoms may impact as many as 1 in 5 adult survivors of the illness, regardless of how mild their initial infection was. This is double the number researchers reported earlier in the pandemic ( The BMJ, Vol. 370, No. 8258, 2020).

The CDC estimates that more than 200 million people in the United States have already been infected with Covid-19, and predicts 100 million new infections this fall. These growing numbers signal an urgent need for psychologists to learn about long Covid, lead efforts to understand how SARS-CoV-2 affects the brain, and treat the rising tide of patients struggling with cognitive and psychiatric problems as a result of Covid infection.

Definitive biomarkers for long Covid have yet to be uncovered. However, the sheer number of people affected by its often disabling symptoms has begun to erode initial skepticism by the medical and scientific establishment.

Long Covid symptoms

Long Covid has a variety of names, including long-haul Covid, post-acute sequelae of Covid-19 (PASC), and post-Covid condition, which is how a World Health Organization panel defined it late last year.

People with long Covid are frequently described as having "lingering symptoms," but they often develop confounding new ones. Their experiences support the rapidly accumulating evidence that SARS-CoV-2 is not simply a respiratory virus, but one that takes a toll on nearly every major system and organ in the body, from the immune system, to the heart and vascular system, to the gastrointestinal tract, to the kidneys ( Bowe, B., et al., Clinical Epidemiology, Vol. 32, No. 11, 2021).

The brain and the nervous system are no exceptions-and in fact, some of the most pervasive symptoms of long Covid appear to be neurological, cognitive, or psychiatric in nature. In August, a study of more than 2.5 million people by researchers at the University of Oxford revealed that the neurological and psychiatric risks of Covid were significant and that the more severe outcomes-such as psychotic disorders, cognitive deficit, dementia, and epilepsy or seizures-may persist for years (Taquet, M., et al., Lancet Psychiatry, Vol. 9, No. 10, 2022).

Descriptions of "brain fog," which is not a medical term but one that characterizes sluggish thinking, have been ubiquitous since the early days of the pandemic. Also common are reports of altered or lost sense of taste or smell, which signals that the virus has had some neurological impact and, similarly, is observed in patients with neurodegenerative diseases. Many long Covid sufferers also report intense anxiety, anhedonia, insomnia, and debilitating fatigue, as well as short-term memory loss, confusion, and problems with concentration and attention ( Journal of the Academy of Consultation-Liaison Psychiatry, Vol. 63, No. 2, 2022). The data bear this out. A recent meta-analysis found that up to 22% of people who have had Covid report persistent fatigue or cognitive impairment 12 weeks after infection.

Additionally, patients are also reporting "a high rate of psychological distress, as well as difficulties with daily functioning, specifically related to changes in cognition and mental well-being," said Vannorsdall.

Delia Silva, PsyD, ABPP-CN, is a clinical neuropsychologist in San Diego, California. At her practice, Pacific Neurobehavioral Clinic, PC, Silva has seen an increasing number of referrals for patients in need of neuropsychological evaluation because of long Covid. While a "small minority" of these patients' Covid symptoms were severe enough to require oxygen therapy or mechanical ventilation in the ICU (which raises the risk for poor cognitive outcomes), "most of the patients I have seen had relatively mild cases of Covid," she said. She has observed that "consistent with the literature thus far, it appears that the people who were not hospitalized or intubated due to Covid have generally performed within normal limits on neuropsychological testing."

However, these patients may struggle with dysautonomia, which involves dysfunction of the nerves that regulate nonvoluntary body functions, such as heart rate, blood pressure, and sweating. This may lead to reduced cognitive efficiency related to their fatigue, she said.

Some patients with persisting symptoms have also presented with clinically significant psychiatric symptoms. According to Silva, "some of these symptoms can be attributed to the intense stress and isolation that patients have endured during the pandemic, which may contribute to worsening anxiety. Additionally, these patients may feel uncertain about their post-Covid recovery, or have a history of prior psychiatric conditions, either of which could make anxiety or depression worse."

Furthermore, anxiety can cause physical symptoms, such as heart palpitations, which may partially explain some of the issues that patients with long Covid are experiencing.

Punam Rahman, PsyD, ABPP, is a rehabilitation psychologist at the Shepherd Center in Atlanta, Georgia. Her patients have injuries of the spinal cord and brain, and some of them have symptoms consistent with long Covid. She describes the "Covid brain" as an additional disability.

"These patients often have persistent brain fog and other cognitive concerns, which definitely impact their rehabilitation process," she said. Long Covid affects "their ability to carry over new learning, [their ability] to manage their care, and their ability to engage in their recovery."

[Related: Rehabilitation psychology and Covid long-haulers]

Who gets long Covid?

We don't know why some people develop long Covid, but we do know that it occurs in people who had severe, moderate, or mild Covid illness. The relationship between the relative severity of the illness and the development of long Covid is still unclear.

"We know that people with medical comorbidities or of older age are at higher risk of having more severe Covid cases and persisting symptoms. We also know that people who were intubated are at higher risk of experiencing neurological or pulmonary symptoms," said Silva. "We're also seeing that with milder cases, people with premorbid psychiatric histories (anxiety, in particular) tend to have subjective reports of persisting Covid symptoms."

At the same time, Silva said, "there are also people with mild Covid cases who seem to have persisting symptoms that might not be explained by psychiatric factors."

Researchers speculate that Covid's impact on the brain may explain why some people develop long Covid and experience cognitive dysfunction as a result.

In Switzerland, researchers at the University of Geneva have been tracking and analyzing neuropsychological problems in long Covid patients as part of the Covid-COG project since the spring of 2020. So far, their findings support what researchers and clinicians like Silva and Vannorsdall have observed: people who had severe acute disease display the most significant cognitive deficits. But Philippe Voruz, MSc, a doctoral candidate in neuropsychology and one of the researchers on the project, said the findings suggest that cognitive deficits appear to be caused by the virus itself.

"Our results indicate that substantial variance in long-term neuropsychological deficits in Covid-19 is attributable to the infection, and not to previous medical history, treatment, or post-ICU effects," said Voruz. He and his team drew this conclusion based on data showing that even patients with moderate disease-meaning they were hospitalized but did not require mechanical ventilation-showed cognitive deficits on neuropsychological tests, and neuroimaging scans revealed altered patterns of connectivity in their brains (Voruz, P., et al., Clinical and Translational Neuroscience, Vol. 6, No. 2, 2022, and Brain Communications, Vol. 4, No. 2, 2022).

Similar research by neuroscientists shows that Covid infection is linked to changes in brain structure in older adults ( Nature, Vol. 604, 2022), even in those who were never hospitalized. This suggests that Covid has a deleterious effect on the brain in some people, regardless of how sick they were in the acute phase of the infection. But why some people are affected while others are not remains under investigation.

Long Covid and kids

Because of a presumed lower prevalence in children and subsequent lack of data, most research into how long Covid impacts the brain is focused on adults. However, children are affected too, an important note made in the August study from the University of Oxford.

Rowena Ng, PhD, and her colleagues provide neuropsychological assessment services to pediatric patients followed by the Kennedy Krieger Institute's Pediatric Post-Covid-19 Rehabilitation Clinic in Baltimore, Maryland.

Ng said that patients in the clinic report cognitive dysfunction, fatigue, sleep disturbance, headaches, and anxiety and depression symptoms. But they typically perform normally on cognitive tests, and many of them have histories of attention, anxiety, or mood concerns prior to infection.

"Many of these patients also have emergent physical symptoms after the infection, including headaches, fatigue, dizziness, and gastrointestinal problems-all of which may contribute to attention and concentration difficulties," she said. "This makes it challenging to fully differentiate whether the cognitive difficulties patients report, or that we observe on testing, are a direct result of Covid-19 infection, indirect outcomes from physical symptoms associated with Covid-19, worsened anxiety or mood, pandemic-related stress, or a combination of these."

Additionally, social isolation during "lockdown" periods of the pandemic has been noted to have a serious impact on school performance, attention, and mood in children, particularly those who already had mental health conditions. These effects may have been even worse in children who had Covid or experienced ongoing problems related to their infection.

The August study from the University of Oxford concluded that children who have had Covid were not more likely to be diagnosed with anxiety or depression following their infection, and their risk of brain fog subsided over a period of two years. However, the study also found that children with a previous Covid infection had an increased risk of psychotic disorders and seizures, though they have an overall lower risk profile than older adults.

Additionally, Ng pointed to emergent clinical case studies suggesting that pediatric patients show changes in the brain following Covid infection, similar to what has been found in older adults (Morand, A., et al., European Journal of Nuclear Medicine and Molecular Imaging, Vol. 49, No. 3, 2022).

She said there is much to learn about the impact of Covid infection in children and on their subsequent brain development. She and her colleagues draw much of what they know about long Covid in children from case studies or patient (and parent) reports, but she is hopeful for more comprehensive data soon.

"The number of specialty clinics dedicated to serving pediatric patients with long Covid is growing, and some have begun to gather longitudinal clinical data that may better characterize cognitive and behavioral outcomes associated with the infection," she said.

What causes long Covid?

"Understanding the etiology of long Covid is essential because once we comprehend the cause, we can work towards a cure," said Julia Samton, MD, who is board certified in neurology and psychiatry and co-owns The Midtown Practice in New York City.

Presently, there are three leading theories for what causes post-Covid cognitive and psychiatric symptoms, according to Silva, who detailed these theories in an August 2021 blog post, "Long-Haul Covid-19: What We Know, and What We Don't," on her practice's website.

The first is cerebrovascular ischemia, which occurs when the brain doesn't receive adequate blood flow and is a precursor to a stroke. This could largely explain why patients who had severe acute disease display the most serious deficits.

For those with moderate or mild acute disease, a second theory is that direct viral infection of the brain causes cognitive dysfunction and neurological problems, such as the hallmark loss of taste and smell experienced by many people with Covid. There is limited evidence for this theory, Silva wrote.

A third theory involves neuroinflammation, which scientists theorize is the result of an immune system in overdrive. Scientists have linked Covid infection (even mild infection) with inflammatory processes in the brain in both animal and human models ( Nature Reviews Neurology, Vol. 18, No. 453, June 2022, and Nature, Vol. 595, June 2021).

Samton, who is also affiliated with New York-Presbyterian Hospital, explained that this neuroinflammation could be caused by malfunctioning mast cells, a type of white blood cell found in the body's connective tissue.

"These cells release chemicals that lead to even more inflammation in a part of the brain called the hypothalamus, which is basically the coordinator of many functions of the nervous system," she said. This process could lead to the brain fog and fatigue experienced by many people with long Covid.

However, in May 2022, a longitudinal study led by Michael Sneller, MD, of the National Institutes of Health, failed to identify a definitive cause of long Covid, and did not find evidence to support these theories. The study did, however, find that women with a history of anxiety were at greater risk for developing long Covid, a conclusion that many patient advocates (and even Sneller himself) were concerned would lead to further marginalization of post-Covid patients by the medical and scientific establishment ( Annals of Internal Medicine, Vol. 175, No. 7, 2022).

Nonetheless, "emotional trauma and posttraumatic stress disorder may play a role in creating or worsening symptoms," Samton said.

Samton also pointed out that researchers have identified some additional possible risk factors for developing long Covid, including Type 2 diabetes, fragments of SARS-Cov-2 RNA in the blood, evidence of Epstein-Barr virus (EBV) in the blood, and an increase in autoimmune antibodies ( Cell, Vol. 185, No. 5, 2022).

There is also some evidence regarding the protective factor of vaccines, which provides some clues, although the results have been mixed. One study suggested vaccination lowered the risk of developing long Covid by half. But a later study concluded that vaccines had a much more limited effect, and only reduced risk by 15%.

Clearly, much remains to be discovered about why some people develop long Covid, and why it causes cognitive and neuropsychological dysfunction. However, scientists and clinicians have known for a long time that viral infections can lead to long-term sequelae.

"Viruses vary in the extent to which they affect brain health," said Vannorsdall, and she added that on the whole, the cognitive impact of SARS-CoV-2 on the brain is less severe relative to viruses that more often cause encephalitis, such as herpes simplex virus (HSV-1) or varicella-zoster virus (VZV).

But while this particular virus is a novel one, its potential to cause chronic illness and other sequelae is not unique. There are many examples, but a significant one is the relationship between EBV infection and multiple sclerosis, which was strengthened by a study published earlier this year ( Science, Vol. 375, No. 6578, 2022). Additionally, some researchers and many patients have noted similarities between long Covid and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is theorized to be a postviral illness.

Particularly relevant is the fact that some survivors of the first SARS epidemic became ill with a similar postacute condition in 2002 (which Voruz said was a significant motivator for the Covid-COG project).

Altogether, though, this existing body of knowledge and new research have not yet added up to definitive answers.

"The variability in outcomes across patients has been marked, particularly as it relates to cognition and mental health," said Vannorsdall. "I suspect that as our mechanistic studies evolve, we will begin to appreciate that there are multiple etiologic pathways contributing to persistent post-Covid symptoms, with vascular, inflammatory, and psychological pathways contributing to varying degrees in different patients."

Hope for the future

"As we work towards answering clinically important questions, there will continue to be an important role for psychologists in providing psychoeducation and setting appropriate expectations, while helping optimize health behaviors and coping strategies in order to improve patient well-being," Vannorsdall said.

Silva agreed, and said that a cognitive behavioral approach on how mood or anxiety disorders can contribute to reduced cognitive efficiency can be helpful. "We have seen improvement with many of these patients at this practice," she said.

She also encourages patients to continue following up with their medical doctors for further evaluation and treatment of their physical symptoms.

Rehabilitation psychologists like Rahman also have an important role to play in helping long Covid patients manage their symptoms. At both traditional rehabilitation clinics and specialty long Covid clinics, they are helping long Covid patients recover or adapt to their new levels of function.

Rahman said some of her patients have had success with several different approaches. One is "pacing," a strategy that helps patients put their limited energy toward tasks and activities that matter the most to them. Other organizational strategies like symptom tracking can help patients prioritize their daily tasks, improve their memory and attention, and show patterns over time. Speech and language pathologists can also help patients compensate for deficits by working with them to develop new ways of learning and communicating.

At the same time, normalizing the situation is important, Rahman said. "We have to acknowledge that yes, this is a major change, and it has so much impact on the patient's day-to-day," she said. "We have to be honest that we might not fix the brain right away, but we have great tools to help. We can instill hope."

In the meantime, there are studies underway, such as the Listen study by researchers at the Yale School of Medicine, that may make significant strides toward uncovering what causes long Covid, and how to better treat it. The National Research Action Plan on Long Covid, announced by the White House in August, may also lead to greater understanding, improved treatments, and better social supports and other interventions for people with long Covid.

"Until we develop a treatment specifically targeted to the neuropsychiatric effects of Covid, we should rely on established therapeutics to rehabilitate affected individuals," Samton said. "A multidisciplinary team that works together to address the different components of long Covid can make all the difference in hope and physical progress."

# data[].attributes.attachment_link.title
The cognitive impact of long COVID: What can psychologists do

# data[].attributes.attachment_link.description
A substantial number of people who survived the acute phase of -19 have never made a full recovery. Psychologists are breaking new research ground to understand the causes, effects, and possible treatments for so-called "long Covid," particularly related to its impact on cognition and mental health.

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Characteristics and predictors of Long Covid in children: a 3-year prospective cohort study

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Characteristics and predictors of Long Covid in children: a 3-year prospective cohort study

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Long COVID Is Harming Too Many Kids. They Need Help.

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Pediatric long COVID is more common than many thought, and we keep letting kids be reinfected with new variants

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Dr Aspa Paltoglou (pictured), a Chartered Psychologist and Senior Lecturer in Psychology at Manchester Metropolitan University, on continuing to take pandemic precautions.

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THE UNRAVELLING  -  A SCIENTIST .  AN ARTIST .  A FATHER

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Self-funded short documentary about the true nature of Covid / Sars-CoV-2, and the impact that Long Covid has had on one family.

Derived from material photographed in Sept. 2024 for the feature length documentary project THE UNRAVELLING, currently in pre-production / development.

Presented as a public service and copyright free. Please download / copy / share / post as you see fit.

Featuring interviews with:
Dr. Ziyad Al-Aly - Dir. Clinical Epidemiology, University of Washington, St. Louis, USA
Rosie Pidgeon - Student / Artist - Belfast, N. Ireland, UK
Colin Pidgeon - Father - Belfast, N. Ireland, UK

Original Music
ANDREW HEATH
www.andrewheath.co.uk
www.andrewheath.bandcamp.com

Director / Camera / Editor
GRANT WAKEFIELD
www.grantwakefield.com

Advocacy & Resources available from:
www.longcovidkids.org

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My sporty son is bedbound with long Covid - nearly every doctor let him down

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Children are still suffering long term effects from Covid-19, but the condition remains a mystery - leaving families in despair, and some experts calling for better vaccination of young people

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Dorset HealthCare University NHS Foundation Trust

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# data[].attributes.attachment_link.title
Campaigning Weymouth mum excluded from Covid inquiry

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A Dorset mum and campaigner representing children who suffer with long Covid has told of her disappointment at being excluded from the Covid inquiry

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When The Week Junior Science+Nature interviewed Professor of Astrophysics at Edinburgh University, and the first female Astronomer Royal for Scotland, Catherine Heymans, she openly spoke about the impact long Covid has had on her life and work. The condition affects her breathing and makes conversations difficult. Before contracting long Covid, Heymans' job involved socialising, jotting theories onto a whiteboard and sparking ideas off other scientists, but now she is housebound. This hasn't stopped her, though. Heymans reads and draws on her colleagues' ideas, communicates via email and has one-on-one online conversations with people. She hasn't given up research, saying, "I'm writing a paper right now. It's just the way I'm doing it that is different." The scientist adds, "It's important to show everyone that people with long Covid are not 'lazy' or 'work-shy', which we hear all too often."

Long-Covid-led charity work

Long Covid affects people of all ages, both adults and children. In 2021, the charity Long Covid Kids (LCK) was set up to advocate for young people living with long Covid. One person who receives help from LCK is Victoria Priest, a home educated 14-year-old who loves astronomy, playing the cello and reading. She says her favourite thing about astronomy is "the mystery behind it all. With being ill, I was watching YouTube one day and my interest just grew."

Victoria describes having long Covid as, "A lot of pain in random places at random times... [which] has stopped me from doing a lot of things I used to do and loved". For two years, she couldn't play her cello, but recently she started playing again thanks to her cello teacher, who restrung a ukulele with cello strings and adapted music pieces for Victoria to play.

A music teacher's take on long Covid

Merel is the musical director of the LCK Choir, and is vocal about the need for better support for people with long Covid. When we first spoke, she said, "There are 62,000 young people in the UK with long Covid [however there has been] no development in new treatment. We desperately need clinical trials and paediatric research... We're more than four years in and there is nothing for long Covid. No new treatment centres. Some of the paediatric long Covid hubs are actually closing down." Merel also has long Covid, and describes it as feel like you have been "knocked down multiple times - every time you try to get up you get knocked down again".

Infographic 2: These are the main symptoms reported by people suffering from long Covid.

People all over the world are living with these and many more long Covid symptoms. This includes parents of children who are trying to help young people grow and learn while having these battles with illness.
A doctor's experience
One parent who found herself in this position is Dr Binita Kane. The NHS doctor spent six months seeking long Covid NHS treatment for her daughter to no avail, and went public with her story. Dr Kane's daughter, Jasmin, had to start using a wheelchair and her dad stopped working to take care of her and her sister. Eventually, Dr Kane took Jasmin for treatment in Germany because they were getting "no answers" from the NHS. Jasmin had a type of drug therapy in Germany usually used in adults rather than children, and although this treatment did come with risks, Dr Kane said that over six to eight months, Jasmin got better.

As well as helping her own child, Dr Kane works with other children experiencing long Covid symptoms in the UK. Last month, The Guardian published an article which features two of Dr Kane's teenage patients. Interestingly this new article published in June 2024 states that more than 110,000 children in England and Scotland are still suffering from long Covid whereas Merel said 62,000 young people have long Covid symptoms in February 2024 - this is further evidence that more research needs to be done into long Covid.

The teens being treated by Dr Kane

Siblings Isabel and Toby both developed long Covid and received medical treatment from Dr Kane. Although Isabel has now recovered with treatment, Toby is yet to recover. The 12-year-old experiences two primary symptoms; severe debilitating fatigue, which can be triggered by not just physical activity but also social or cognitive activity, and PEM or PESE (post exertional malaise or symptom exacerbation). Toby's dad says these two symptoms are what limits his son, causing a crash similar to that experienced by those with chronic fatigue syndrome (a long-term condition where people feel extremely tired all the time). In long Covid sufferers, this crash occurs a day or two after doing too much, and it can sometimes last months.

Toby's parents are concerned about how long Covid is impacting their son's education, because currently he is only doing two or three 10-20 minute sessions of learning a day. To help, his school has installed an air filter in Toby's classroom to clean viruses and other nasties from the air. This reduces not just Covid infections, and long Covid risks, but also other contagious illnesses that can result in child and staff absences. Toby's family want more schools to install these air filters in classrooms.

In a way, Toby's family have been fortunate despite having two children who have become seriously ill after catching Covid. This is because Toby's parents say they have been able to take time off work to help their children do school work, and pay for their children to get private medical treatment. Toby's family say charities like CK have helped them by calling for greater awareness, understanding and action; and the charity has also linked them up with people who are going through similar experiences. Toby's family say the UK Government needs to provide more funding to charities like LCK so that they can help more children particularly those whose parents don't have the funds to pay for private medical care.

Heymans' battles with illness

For Catherine Heymans, long Covid is not the first time she's been hit with a serious illness. At 16 years old, she contracted chronic fatigue syndrome. To keep up her studies, she taught herself chemistry, physics and maths A-Levels from bed and says, "Studying kept me going... [because] I could still develop my knowledge".

Now, the Astronomer Royal for Scotland, says supporting children with special needs and providing them with opportunities can be pivotal in maximising their chances at success. She has seen first-hand the positive impacts teaching astronomy can have for younger people, and recently had an idea that telescopes could be installed at Scotland's residential outdoor learning centres. She says, "The centres are in these fantastically remote locations, so the skies are really dark. It's a perfect place to do astronomy." Her own fascination with astronomy was sparked on a trip to Scotland in her early teens. Heymans says, "It wasn't until I came on holiday to Scotland, and went out one night and saw that there were loads of stars" that she became transfixed by the science and beauty of the night sky. She adds, "I haven't lost that skill today." The night before our interview, she was out lying down on a blanket in her garden looking at the stars. She beams, "It's so beautiful just imagining what's out there, your imagination can go wild."

Heymans' favourite thing about space is time travel. She says, "When you look up into the night sky, you are seeing the universe as it was in the past". It takes time for light to travel from one part of the universe to another and it travels at a fixed speed. For example, the Sun is so far away that when we look at it, it has taken eight minutes to reach us. So, when we look at the sun we're seeing it as it was eight minutes ago. "The millions of stars that we can see in the night sky are light years away, and the galaxies that I can see through my telescope are billions of light years away. I love the fact that just by lying in my back yard and looking up at the night sky, I'm looking back in time, and I find that super exciting", says Heymans.

Advice from a scientist

Heymans says the secret to excelling in the science world is being able to speak the language of science which is maths. She says, "There's a misconception that maths is somehow harder than anything else at school. I would encourage people to rise to the challenge of maths. It's really easy when you find something difficult to just give up on it, but maths is one of the most important things to work on at school because from that everything else flows... Maths is the core of it all."

On being the first woman to hold the title, Astronomer Royal for Scotland, Heymans said, "It's crazy that in the 2020s, we still have first women. That shouldn't be... but things are changing and I'm proud to be part of that change. It doesn't matter who you are, where you come from, what your background is, what your gender is. Science is for everyone. It doesn't care about your background. It's an exciting thing to do, and it's fun to be able to share that with everyone."

Throughout her battle with long Covid and in all of her scientific work, Heymans says all of her energy is dedicated to astronomy. Her advice to others living with long Covid is to "accept what your limitations are, adapt your life to be as full as it can be...", keep learning and "pushing towards your dreams".

To any young people interested in sharing their experiences of long Covid, get in touch with The Week Junior Science+Nature. Tell us who motivates you, what inspires you or improves your mood and what gives you hope for a better future. There's a chance your thoughts could potentially be published. Contact us via email at hello@science-nature.co.uk

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Meet the scientist, choir leader, doctor and families determined to fight long Covid

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When The Week Junior Science+Nature interviewed Professor of Astrophysics at Edinburgh University, and the first female Astronomer Royal for Scotland, Catherine Heymans, she openly spoke about the impact long Covid has had on her life and work. The condition affects her breathing and makes conversations difficult.

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Even with community immunity, Long COVID remains a threat to kids

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Even as community builds in Washington and around the globe, Long covid still threatens kids and adults, especially during a virus surge.

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Jackie Baxter
Hello, and welcome to this episode of the long COVID Podcast. I am so excited to be joined tonight by Todd Davenport. And we are going to dive in to the mystical magical world of post exertional malaise, I'm sure other things as well. So a very, very warm welcome to the podcast today.

Todd Davenport
Thank you. And I just wanted to say now that the recording is going, thank you for all that you've done in the manner of taking a very practical approach to identifying topics that are important for the community of people who are living with long COVID, and approaching them in a really personable way with really reliable folks that you've brought on to the podcast. So congratulations on what you've done. And thanks for having me as part of all that.

Jackie Baxter
Oh, thank you so much. It's absolutely my pleasure. So would you mind just saying a little bit about yourself? And what it is that you do?

Todd Davenport
Yeah, so I am a physiotherapist, we would maybe call it a physical therapist here in the US. So for some people that's strike one, first strike against me is that I'm a physio. And I'm a physic physiotherapy professor here in the United States at the University of the Pacific School of Health Sciences in Stockton, California, which is east of San Francisco, for folks who are wondering kind of where that is on the map.

Todd Davenport
I'm an Exercise Scientist. So that's strike two, for some people, because as we'll talk about, exercise, physical exertion is one of those types of exertion that makes people sometimes feel worse, who have long COVID. But I promise that I've tried to sort of learn a lot over over my time being a physio, almost 25 years Yikes.

Todd Davenport
And in my time, studying myalgic encephalomyelitis, and now long COVID for about 15 years, which is sounds like a lot of time to actually have saying it out loud. In order to really bring some good information about what physical exertion does to the body. You know, if you have a certain type of long COVID that mirrors myalgic encephalomyelitis that is called post exertional malaise, which would be the clinical Hallmark that we're going to talk about mostly today. And it take that those physiological insights to really try and understand what to what to do next.

Jackie Baxter
And what did bring you into the world of you know, ME CFS originally, and obviously now we've added long COVID to that pile. But yeah, what sort of brought you into that world?

Todd Davenport
Like everything a long story. My story started being an athlete, and being very curious about why athletes made mental mistakes when they were tired. I played basketball, I was wondering why people made decisions or sort of didn't execute certain fundamentals with fatigue as a factor. So when I got to college, I did my honours thesis on Exercise Science on doing neurocognitive games before and after a fatiguing bicycle task.

Todd Davenport
Interestingly enough, I chose my teammates from the swim team, who were very fit, and it took them a long time to get fatigued. So that was a learning lesson right there. We were there trying to get them fatigued for a long time. And then kind of rolled that experience into my experience into additional kind of preclinical experiences as a student, student athletic trainer, working with athletes, then as physiotherapy student, doing some work at our US national National Institutes of Health, looking into, you know, how we test people who have health conditions characterized by fatigue.

Todd Davenport
And then, you know, fast forward a few years when I joined University of the Pacific, I was sort of doing a Google search about who's in my neighborhood, I found this thing on campus called the Pacific fatigue lab. And I thought, well, you know, I mean, I've done some things with fatigue, you know, a little bit about it. And, of course, as is my habit just sort of wandered over there on an unannounced knocked on the door.

Todd Davenport
And thankfully, they opened it and there I met the Pacific fatigue lab team, Stacy Stephens, Dr. Mark van as Dr. Chris Snell, Jared Stevens, and have really worked with them ever since. That group has since kind of gone on and Stacy founded the workwell foundation. So, I continue on as a scientific adviser to the workflow foundation. So, that is that is my long and wandering path into this, this content area.

Todd Davenport
And as you point out, it you know, we've done some work with in particular cardiopulmonary exercise testing and specifically, today cardiopulmonary exercise testing to really try and understand the metabolic, the cardiac, the pulmonary consequences of physical exertion and people with ME. And have since rolled that work into long COVID as a subset, fairly sizable subset, of people with long COVID start to resemble people with ME.

Jackie Baxter
Yeah. Because I think what, you know, someone like me who got long COVID. And what back in 2020, and, you know, suddenly was like, what fresh hell is this? And then, you know, we start noticing links between MECFS, long COVID, and other things as well, that have been around for much, much longer.

Jackie Baxter
And, you know, I think I had a couple of friends with ME, and I thought, oh, you know, I get it, and then you get it yourself. And you're like, oh, no, I didn't get that at all. Then you just you can't understand unless you've had that experience of it, I think. And I think, you know, the post exertional malaise kind of angle of it, as well is something that's very difficult to understand.

Jackie Baxter
You know, I think regular people, you know, they push themselves super hard, they go run a marathon, and they feel tired the next day, and like that is normal. But the idea of like, getting out of bed to brush your teeth, and that knocking you out for a week. That is something that is very hard to understand, unless you have actually had that experience of it.

Jackie Baxter
So maybe before we dive down the rabbit hole too far, can we just talk about what post exertional malaise actually is? And it's probably not just one thing, which is probably the hard thing about it, isn't it?

Todd Davenport
It is and so as you so beautifully set up, I think the average person understands what fatigue is, the average person has been tired, whether they you know, physically over exerted, you know, they've over exerted over a period of time, not slept well. You know, when I tell people that I'm an exercise scientist and a physiotherapist that has been interested in chronic fatigue, just to kind of boil things down and try and use the popular parlance. The most common thing I hear is Oh, yeah, thanks for studying. I get tired too.

Todd Davenport
You're like, No, you don't know. No. This is not cup of coffee and a lie down, kind of fatigue. This is not, you know, back off on your training a little bit, the gym, you've been hitting it too hard. And you'll feel better. In fact, I've stopped saying that I'm interested in chronic fatigue just for that reason, because the focus on fatigue oversimplifies what post exertional malaise is.

Todd Davenport
And post exertional malaise is really a multi system, multi symptom, kind of just constellation of experiences that occur after exertion. So it's not just fatigue. And let's just talk about the fatigue since that's the one that people kind of know about. This is the feeling of zonked, the feeling of nothing left, the feeling of I cannot get out of bed or out of off this couch. My body will not let me do it.

Todd Davenport
I have worked with marathon runners who have post exertional malaise and they will tell you that the feeling of finishing a marathon and post exertional malaise are not equivalent feelings, that post exertional malaise is worse. And part of what makes it worse are the associated signs and symptoms that go along with this.

Todd Davenport
Cognitive dysfunction, which is very troubling because it limits short term memory and attention. It inhibits you know short kind of short term learning you know. There's also sleep impairment that goes with this, going asleep, staying asleep, quality of sleep once you are asleep. All crummy widespread body pains, numbness and tingling headaches, shortness of breath and palpitations, issues with with gastrointestinal that with digestion, maybe with genital urinary tract disturbances.

Todd Davenport
All of the signs and symptoms occur in response to some kind of an exposure and exertion - could be physical exertion which is you know, if you follow me on Twitter, if you listen to some of the other podcasts I've done, you'll hear me talk a lot about physical exertion because I'm a physio and I'm an Exercise scientist.

Todd Davenport
But that's not to discount the importance of cognitive exertion. Where even watching a video on a small screen, an iPad, a short video is enough to provoke signs and symptoms. Also, the exertions include environmental exertions, so environmental exposure, so, scents and smells and odors and chemicals, people can be oversensitive to those as well. So there's there's a whole host of exertions that kind of go into this post exertional malaise.

Todd Davenport
And I do want to point out that there are some folks that dispute this idea of malaise. Because first, it's sort of an old timey word that people don't really use anymore. And people think it runs the risk of underselling what this is, because malaise is sort of like just like feeling off because you're ill.

Todd Davenport
And so probably the conceptualization that best captures post exertional malaise is, doesn't even use that word. It's the international consensus criteria for myalgic encephalomyelitis, which was written in 2011. And it uses this term post exertional neuro immune exhaustion.

Todd Davenport
And it kind of gives this sense of the exhaustion piece, which kind of gets at the fatigue plus, that we were just talking about. And then also kind of starts to pull together some of the suspected underlying etiology of the signs and symptoms under the neurological system and the immune system.

Todd Davenport
So in post exertional neuro immune exhaustion, there is basically, there are several types to this. So how do you know you have this? The first is that you might have this really marked decline in your physical and cognitive capabilities in response to an exertion. The other is that the symptoms that follow reliably following exertion.

Todd Davenport
There are stages, there are levels to this, and we can link in the show notes, immediate post exertional malaise, short term and long term post exertional malaise, but there's generally a lag time involved of, of 24 to even 72 hours. And then there's a prolonged recovery period, and that often people have a decreased threshold for their physical and their mental performance.

Todd Davenport
And so those are the general aspects of post exertional neuro immune exhaustion that we call post exertional malaise. And honestly, we only call it that because everyone calls it that. And we have to find a common language.

Jackie Baxter
Yeah, and I guess it's, you know, you hear people talk about this all the time with brain fog is the one that often comes up where brain fog is a sort of like, a very friendly term for something that is not so friendly, and what it feels like. But it is the word that is used and people, I don't know if they understand it, but they certainly, you know, hear it.

Jackie Baxter
And I guess PEM and posted exertional malaise is kind of the same, isn't it? You know, where it doesn't quite give the scale of what it is. But is there anything that really could give the scale of what that is? You know, that that's kind of quite difficult, isn't it?

Todd Davenport
Yeah, I don't know if there is, I don't know what it would be. Because here's the thing is, I'm always struck by how profoundly people need to fake being well, just to work with me as a healthcare practitioner. And some people have a really good poker face that.

Todd Davenport
I'm always gauging, you know, are the words getting in? Are the thoughts coming back reasonably, you know, associated or collected? Does it look like the person is just kind of fading out on me, you know, and they're, they're kind of have that 1000 mile stare past the camera past me. And so I'm always looking for nonverbals that are associated with an increase in cognitive function, but you're totally right. I don't know how we capture this in a word.

Jackie Baxter
So we sort of learned to track this ourselves, you know, as we go through this experience, and okay, well, yesterday, I did this thing. And today, I'm feeling absolutely awful. And you start to make the links. Okay, well, this has happened before when I did that thing. And this happened. Okay. I think maybe I have PEMyou know, this, this is that, you know, you start to recognize those patterns.

Jackie Baxter
But yeah, what is physically going on in the body? When that happens? What do we know about that?

Todd Davenport
There's so many things that are going on. So I'm going to just in the interest of time, and sort of sticking within the the confines of what I know the best. I'm going to talk about post exertional malaise as an energy production problem by the body. Post exertional malaise, as I mentioned, is a lot of things. It's an immune system problem. It's a circulatory problem. It is a hormonal problem. And a bunch of things that I'm leaving out, but, but it is at its core, also an energy production utilization problem.

Todd Davenport
And so I'm going to, I'm going to paraphrase a load of exercise physiology studies into a silly analogy that I like to use. And that's the analogy of the plug in hybrid car. So your body works like a plug in hybrid car, come to find out after all of this. So in a plug in hybrid car, you have two fuel sources, you have a gas motor, and you have a battery.

Todd Davenport
And the gas motor is great for things like you know, going freeway speeds and going up down hills and hauling people and gear in your car. And the battery is great for stop and go traffic, lower speed kind of city driving, so forth. And the gas motor can charge the battery, so you don't have to plug it in as much. So that's nice.

Todd Davenport
So this is similar to you know, your gas motor kind of being your aerobic metabolism. This is your long term energy system, it generates a lot of power for you. A lot of energy allows you to do prolonged things, allows you to do kind of higher intensity things.

Todd Davenport
And then you have your short term energy system, kind of your creatine phosphate, these are sort of your early kind of like lytic pathways, just metabolizing what's on hand in your muscle cells. And those are like your battery.

Todd Davenport
So let's imagine now that you're a plug in hybrid car, and that your gas motor doesn't work. Or that your gas motor is unreliable. So what do you lose? Well, you lose the ability to do prolonged things, you lose the ability to go up and down hills, higher intensity things, hauling people and gear, you also lose the ability to charge a battery. And so you over rely on the battery, leaving you potentially stuck at the side of the road, which is simulating a crash.

Todd Davenport
So you do all this work, you realize that a your body works just like other things that we've been engineered for our convenience. And so I want to acknowledge Dr. Chris Snell who introduced us to this analogy and that I've tried to kind of add to and refine over time. So now, what you do next is try to avoid overusing your battery.

Jackie Baxter
And you know the analogies, they're great, because they're putting it into a sort of a situation that people understand. You know, and that makes it relatable to understand what's going on in your own body. And for someone else to understand what's going on with you, like a friend or a family member or employer or whoever it is that you're trying to kind of explain what is going on.

Jackie Baxter
And they don't get it. Because why would they, and you're trying to find this language to explain it in something that they will understand. And that's very difficult to do, because there's sort of limited crossover for someone who hasn't had that experience. So I think that's great. I think that's very relatable, even if they're not mechanics, will kind of understand the sort of the basics of how the car work.

Todd Davenport
Yeah. Oh, gosh, I am not a mechanic. So if you probe any farther on how a plug in hybrid car works, I would be unsuccessful, would not be the person to help.

Jackie Baxter
Um, so you mentioned earlier that post exertional malaise can show up in people from sort of 24 hours to 72 hours ish. And it's different in different people. I think it's different in different circumstances. You know, there's definitely been times where I thought I got away with it, and then got hit 12 hours later and was like *laughs* dammit. So, do we know why the time lag is different in different people? Is there any kind of knowledge on that?

Todd Davenport
You know, not totally sure. But I would suspect that it has to do with some of the underlying and bioenergetic impairments that we see in people with post exertional malaise. And that some of the chemicals, this is kind of the biochemical take now, some of the chemicals that are used in the cycle of creating energy molecules become depleted. And I think it has to do with the relative depletion and timing of recovery of some of those.

Todd Davenport
Now, obviously, we're taking a very narrow view just for the purposes of sort of time and convenience and the limitations of your guest. And there probably are other systemic impairments that also are associated with that, are involved in that time lag. So the short answer is I'm not sure.

Todd Davenport
But again, as we think about post exertional malaise is lots of things. But among those things, an energy production problem probably has something to do with those chemicals being in short supply and how quickly they can become recovered or regenerated.

Jackie Baxter
Of course, because no system in the body is working in isolation, as it's connected to everything else. And everyone's makeup of all of those systems and how they interact with each other is going to be very different. And it's probably going to be different on different days as well.

Todd Davenport
Absolutely. So as we think about the whole person, you know, putting my clinical hat on for a minute, really, the only constant with post exertional malaise is variation. Variation between people, variation between days, variation between months, variation between different phases of a recovery process, and so forth. So it's, there's just a lot of variation.

Jackie Baxter
Yeah, and I think this is one of the frustrations, isn't it, because even within your limitations that you are having to come to terms with having, it's not like it's always the same. It's like, Okay, on this day, I can do that. But on that day, I can do half of that. And then two weeks later, I might be able to do a bit more, but then a month after that, I'm right back down the bottom again. And it's like, you know, I can't work with this.

Todd Davenport
Yeah, exactly. So it's a little bit like trying to nail jello to the wall, it's just not gonna work very well. It's just gonna slide down and do its own thing. And, you know, from a clinical perspective is very similar, because even with clinicians who work with people who have chronic health conditions, there's sort of like some general linearity to a plan, but there's just when you're working with someone who has post exertional malaise, that linearity goes out the window. So everyone's trying to nail different different flavors of jello to the wall and to try and figure out the patterns and how things work.

Todd Davenport
But the think the overall, the unifying theme, is to try and figure out your capacity, try and figure out where that gas motor kicks in. At what level of exertion that is, and how much of that gas motor you can depend on for how long and then try and stay within that. Now, Dr. Leonard Jason, a few years ago called this the energy envelope, which is a common term that people use to try and figure out what that capacity is, really.

Todd Davenport
All the energy envelope beans is to try and figure out what your resources are on a given day. And then to stay within those resources. And, you know, allocating a certain portion of those resources if you can, to almost bank for yourself. So not constantly redlining, you know, to the very edge of what you can do, but to sort of try and maintain a little bit for the benefit of your own recovery.

Todd Davenport
Which is, which is hard, because now, what you're trying to do is you're trying to sell people on number one doing less, which I'll make an additional comment about in a moment. The second thing that you're trying to sell people on is, you're going to have them stopped short of their capacity, even if they feel good, just to kind of give themselves permission to feel good later.

Todd Davenport
But I want to go back to this idea of, of doing nothing. Staying in your energy envelope, or what we might call pacing, is far from doing nothing. It's balancing activities with rest, and it takes a lot of planning. It takes a lot of figuring where you are now, where you've been, where you're going to be, what you have to do. It takes a lot of prioritizing.

Todd Davenport
And resting actually takes a heck of a lot of work for people. Resting is not an easy thing to do. This is not like chill out and watch trashy TV. This is usually somewhere between being awake and being asleep, because you're trying to minimize cognitive exertion, tends to be pretty boring, tends to be very isolating. And it's just hard.

Todd Davenport
So as a clinician, a lot of what I do is try and help people sort through their pacing plans, and try and figure out where this energy envelope is and strategies to stay within it. You know, again, balancing activity with rest, but also managing things like isolation and trying to manage things like boredom, and trying to manage things like frustration because this is really hard stuff to do. So, oftentimes, you know people say pacing as being something less, but it actually turns out to be a boatload of work.

Jackie Baxter
Yeah, definitely. And I think, yeah, balance is something that I've really started to appreciate in my life on the other side, is that yeah, it's great to have those days where you do all the things, but actually, you need to balance that out. Actually, you know, someone told me back a couple of years ago that pacing was a skill for life. And I was just like, No, I'm looking forward to never having to pace again.

Jackie Baxter
And now I'm thinking, you know, it's a totally different thing, you know, when you don't have something like long COVID, but it is something that's still sort of useful to hang on to, in some ways, I think might be an umbrella sort of overriding kind of thing, rather than maybe more specifically.

Todd Davenport
Yeah, you know, long COVID is new, so we're still trying to get a handle on it. And so I just sort of assumed that pacing is a life skill, I couldn't agree more strongly. I would say, it's just a core competency of living with long COVID. And it's the thing that I teach first, people may come and ask me, I want to exercise. How do I exercise. Well, how's your pacing? What's pacing? Okay, we're starting there first. So we're gonna back up a few steps.

Todd Davenport
And just kind of make sure that people understand the potential warning signs of overdoing and have a plan for what happens if they overdo. So those are really, really important things. I think of my clinical practice with people who have long COVID, and who are trying to manage despite post exertional malaise, is being more along the lines of a health coaching model.

Todd Davenport
Now, health coaching, is, you know, trying to help people make a behavior change that we commonly think of like as, like more exercise. But I'm thinking less exercise, and I'm thinking more pacing, and striving towards this balance, and how people can best achieve that balance.

Todd Davenport
Now, some folks who have, you know, maybe less severe involvement, there's a little more capacity to have a balance. But there are some people who are severe, very severe who their balance is rolling in bed. And that's it, or making it to a trip to the bathroom. So that balance looks very different. And the capacity for that balance looks very different in people.

Todd Davenport
So I don't want to give the sense that, you know, one size fits all because remember, the whole idea here is that variability is the only constant.

Jackie Baxter
Yeah, absolutely. And, like what you were saying a moment ago about the warning signs, I think that was something that was like a total lightbulb moment for me, because, you know, I would do a thing, crash, do a thing crash. And then when I started to notice, okay, what does it feel like, just before I go over the edge, and then when I started to notice what that kind of felt like,

Jackie Baxter
Okay, this is the moment where I can stop, maybe I can intervene, maybe I can do some breathing, maybe I can lay down whatever that looked like. And not all the time, because I wasn't always very good at it. And sometimes you're not able to stop, you know, if you're in a car and you're in a traffic jam, you can't just, you know, close your eyes and lay down. But you know, being much more aware of what that felt like.

Jackie Baxter
And what I could do was huge for me, because there's so much about what you can't do when you're unwell with something like this, you know, it's can't, can't, can't, can't can't. And then once you find the can, it's like, okay, I have this tiny, tiny bit of control sometimes, and yeah, for me personally, that was absolutely massive.

Todd Davenport
Yeah, we're always trying so this, this balance of activity with rest is prioritized based on the person who's living with long COVID. As a clinician, ideally, I don't go in with goals for people, people set their own goals. And if we're fortunate to have this situation where people have a little more energy, and it's very common that you know, people do improve with pacing.

Todd Davenport
There's always a limit, there's always a system to work within, that's different for every patient, but people do improve with adherence to a pacing program. In fact, there was a nice study that was put out just recently in people with Long COVID suggesting that pacing can be beneficial, and that you know, greater adherence to a pacing program is predictive of better outcomes.

Todd Davenport
But you know, what you do with that energy is up to you, it shouldn't be up to your clinician. So, if you're working with a clinician that wants you to, hey, you're feeling better, hop on the bike. Well, we know that in people with post exertional malaise, the acute responses to exercise or abnormal, the response to graded exercise has not been favorable, not been favorable enough for it to be favored in clinical practice guidelines. So it's not.

Todd Davenport
And so I would almost prefer, you know, people, if you had it in you to go do something, let's find out what that looks like for you, sort of in what duration? And what intensity makes sense? What are the warning signs of overdoing. And so it becomes a greater conversation.

Todd Davenport
So I would just be aware of the clinician who has you hop on the treadmill, because you're having a good day, because it's a slippery slope towards an intervention that doesn't help, potentially harms, and does not put you in the middle of the decision making about how best to spend your energy.

Jackie Baxter
Yeah, and you know, what I think like, what is important to people, it's going to differ depending on the person, you know, some people, you know, Exercise and Movement is a very important part of their life. So maybe they do want to spend some of their energy going for a walk, or, you know, whatever that movement is going to look like for them.

Jackie Baxter
Whereas, you know, you mentioned earlier, all the different types of energy, you know, your cognitive, your physical, your emotional, your, whatever, the ones where, you know, and actually, for some people, maybe it's going to spend some time with their family, or, you know, watching their kids at the play park or reading a book, or, you know, whatever that is.

Jackie Baxter
And I think, as you say, that's got to be down to the person. I think it's important that they understand that all of these things do take energy. But ultimately, what they decide to spend their energy on, it shouldn't really be pre prescribed by someone who isn't them.

Jackie Baxter
You mentioned earlier, I think the CPET, I think one of the many kind of frustrations with something like long COVID Is the subjectiveness of it. You know, you could you go to your doctor, and you say I have these symptoms, and they don't show up in any tests, you know, and some doctors will say, Okay, well, I'm going to believe you. And let's look into what we can do. And some doctors will not.

Jackie Baxter
And the same is true with some employers and some family members as well. You know, if there's nothing coming up in your tests, then well, maybe they're crazy, maybe they're making it up, maybe they're not as ill as they think. And the post exertional malaise thing is obviously a whole extra thing on top of that, because it's not, this is showing up for me now. It's if I do this thing, now, this is going to show up down the line in 24 hours, in 48 hours. So is the CPET a way that we can sort of use to measure this in some way?

Todd Davenport
It is and to kind of get a little bit into the CPET. But without getting too technical, just kind of a challenge. But I will do my best. Think stationary bike. We have a person on a stationary bike with a mask and a tube connected to a computer. And the bike has electronic brakes on it so we can make the pedals harder and easier to maneuver.

Todd Davenport
And there's a whole setup and you know, there's EKG monitors on your chest and so forth. So there's kind of a lot, it's a whole thing. But you know, the long the short of a cardiopulmonary exercise test, at least in this regard is that you pedal on the cycle ergometer, stationary bike, and it gets progressively harder during the task. Every minute, it gets a little harder.

Todd Davenport
And while you're pedaling, you're breathing into the mask and the tube. And we are collecting the breath, running the breath through the computer. And we're analyzing the amount of oxygen and carbon dioxide in your breath. And from that data, plotting, basically the composition of oxygen and carbon dioxide in your breath, we can determine when your body starts to shift away from using oxygen to burn fats and sugars.

Todd Davenport
And so we call that the ventilatory anaerobic threshold. That's usually the point during exercise, that you start to lose your breath. And you know, as the exercise gets harder, you're not going to exercise that much longer after you've lost start to lose your breath. You'll have to stop and over and over time exercise intensities above losing your breath start to kind of defeat the process of burning fats and sugars using oxygen.

Todd Davenport
Free oxygen radicals and lactate and all this all these chemicals come in and just start to gum up that process. It doesn't work very well. So it's there's physiological reasons why it's hard to exercise above that level for very long. So we basically are looking for, you know, some maximal test criteria, and we do that on one day.

Todd Davenport
And then 24 hours later, because remember, there's a lag time here in terms of post exertional symptoms and signs, we do another cardiopulmonary maximal cardiopulmonary exercise test when the person is in the post exertional state. And so that measurement is more reflective of a person's post exertional physiology, than the first one where they walked in the door.

Todd Davenport
So, so normally what we see in someone who's say they're out of shape, right here, I could get to the gym. And I don't, but that's a conversation for a different podcast, why the physio is not exercising. But normally, even though my markers on the first test might be low, suggesting that I'm deconditioned, I will be able to repeat those same markers on the second day.

Todd Davenport
Or I might be able to even increase my performance a little bit because I have had the experience of the first CPET, I have learned like a little some bounce, little biomechanical efficiencies, there's some motor learning that happens. And so I might even be able to actually increase my measurements.

Todd Davenport
In people with ME, or the ME subtype of long COVID, people who people living with long COVID and post exertional malaise, they are not able to repeat the first test results on the second day, the second test results are lower. And what's more important, most important here, is that the results are most striking at that point where you start to lose your breath during exercise.

Todd Davenport
What we call the ventilatory anaerobic threshold, that we have found by plotting your oxygen and carbon dioxide in your breath. You cannot fake that. You can't fake your Yeah, I guess maybe you could, but you'd have to take a ton of physiology, and be a really be very specific about that. So it's very, very difficult to fake, we'll say it's impossible.

Todd Davenport
And so the test to sub maximal exertion, people use less oxygen at that point, and they put out less workload than the first test. Again, this sort of unthinkable circumstance. And so what does this mean? Well, people don't generally like to function over the exertion where they lose their breath. It's uncomfortable, you know, like, I'm climbing stairs, I'm glad when I reached the top step, because my muscles are burning, and I've started to lose my breath. I'm not game for another flight.

Todd Davenport
But so people don't generally function for very long above that, that point at which they lose their breath. And if you have less oxygen that you burn, and less work output, after you've already exerted, that sounds like a crash. That sounds like a crash, because ultimately, your functional ceiling, your functional metabolic ceiling has dropped, and you can do less.

Todd Davenport
So now, whereas maybe on the first day, you're here, the second day, you're down here. And so the first day, you may have all these activities you could do. But now on the second day, you have all these activities you can do down here, but all these activities that you can't do. And so that's that's ultimately the utility of a two day cardiopulmonary exercise test.

Todd Davenport
Now, it's not without challenges, because we are aiming to provoke post exertional malaise. That's sort of how the test works. It relies on people to come to a clinic, you know, it requires a lot of specialized setup, commitment to keeping your equipment current and lots of good stuff so that even peoplewho run well known research centers aren't really set up to do this. So there's only only a few places around that can do it, and do it well.

Todd Davenport
But I will say that it's kind of the gold standard against which a lot of these other studies revealing differences between people with long COVID and ME. And controls can be assessed. So it's not like we don't have a measurement, we do have a measurement. It's just not ideal for a lot of people for a number of reasons. And many of these differences between, you know, sort of people with long COVID and healthy participants. People are calling them potential biomarkers.

Todd Davenport
You know, like, I don't think there's a day that goes by that the B word isn't used. We have a new biomarker for long COVID. But yet we don't have an approved way to diagnose it. And so probably the way this is going to go is that most of these new technologies should be compared against a two day cardiopulmonary exercise test in order to really understand. And you know, there are some challenges with that, that research design setup, but it is the best of what we have.

Jackie Baxter
Yeah, and I think, like you say, there's the sort of eternal quest for biomarkers for something to prove in like data, to show how bad you're feeling. Because it's people with long COVID, and I'm sure the same for ME, chronic fatigue, you know, they have no doubt in their mind how bad they feel, it's having to prove - if that's even the right word - to other people, how bad they feel. Which is kind of a sad state of affairs when sick people are having to prove that they're sick.

Jackie Baxter
But at the same time, I suppose from a research and clinical perspective, if you can actually find something where you can see in the data, okay, that's a healthy person, that's a person with long COVID, that's different, it kind of gives you somewhere to go. Okay, now, I can stick a pin in that, and maybe work out what I can do kind of thing. So I suppose there is more than one side to the, quote unquote, proving?

Todd Davenport
Yeah, for sure. And I think you're exactly right, it would be great to have a blood test, it would be great to scan something and have it be definitive, we're just not there. That's not to say that there haven't been a raft of studies that have turned up some potentially very meaningful differences in how people living with long COVID, how their bodies work. But we just haven't boiled that down into the test that allows us to differentiate people with long COVID versus, you know, people who are out of shape, like me.

Jackie Baxter
You know, there's different subtypes of long COVID. And, you know, there's all sorts of chat into what they are and how they are different and how they present differently. But, you know, if we're looking for the, you know, the one test, you know, the one thing of blood tests that says, Yes, you have long COVID. I mean, maybe that's not practical if there's so many different types of long COVID. You know, you mentioned the sort of ME subtype of long COVID. And that is absolutely one of them. But, you know, within, you know, you've still got loads of others, and they're probably all overlapping in some way as well.

Todd Davenport
Yeah, I agree with you. At the end of the day, there's going to be some splitting apart of subgroups. What I hope we don't do is challenge the legitimacy via diagnosis based on the membership in a subgroup. That's not where we need to go with this. Trying to maintain a unified front.

Todd Davenport
It is hard sometimes among folks with lived experience, and the researchers who work with them. Because how we allocate research funding is through a mechanism of splitting people apart to try and find the most granular commonality that we possibly can. So you know, if this was cancer research, we're not just giving money for cancer researchers, we're giving money for specific types of cancer, we have programs for different different types. And so I don't think we're ever gonna get away from that.

Jackie Baxter
Yeah, the sort of practicalities and logistics and stuff is so difficult, I guess. Yeah,

Todd Davenport
totally.

Jackie Baxter
So we talked about pacing earlier. And that is, you know, a huge strategy. Are there any other sort of strategies or things, for want of a better word, that you would sort of suggest for firstly, avoiding post exertional malaise in the first place, and then you know, what to do, when we inevitably do get hit by it? What would you do to sort of minimize it, and maybe work through it as quickly and painlessly as possible. And obviously, it's not possible to be completely painless.

Todd Davenport
It's, it's really hard. So the basics of a crash care plan are something that as a clinician, I try and sort out pretty early on with people. So you know, things like resting, laying on your back with your feet up can help increase the amount of blood going to your heart that can, you know, ameliorate some of the issues that some folks tend to have about post exertional malaise and regulation of their heart rates.

Todd Davenport
Also, using compression, especially lower extremity, like compression and compression of your tummy. The abdominal region tends to be pretty important, basically squeezing that blood up to in the manner of sort of Circulatory Support. Hydration, using salt, salt supplements, electrolyte drinks, because you know, people with ME have been documented to have a lower plasma volume. So again, this is more Circulatory Support stuff.

Todd Davenport
And I would say, you know, again, just sort of developing this sense of what are those symptoms that are sort of my key limiting symptoms, or my key symptoms that I know that I'm entering a crash, like this is starting to go sideways. And I need to change things here. As well as the activities that tend to bring them on.

Todd Davenport
So there are some things that you can do, you know, in the manner of sort of interventions and obviously any medications that you find helpful during a crash that have been prescribed by a physician, all together as this crash care plan, and then just really sort of getting to know yourself and sort of where you sit, where you're situated within the variability that is post exertional malaise

Jackie Baxter
Yeah, I can't remember who it was, but there was someone who described something like long COVID as kind of having to relearn your new body. And I think, you know, some of the things that are likely to trigger and those warning signs that are also important, and anything that you can do to intervene and breathing was always my go to.

Jackie Baxter
If I noticed my breath starting to speed up, that would be me going. Yeah, absolutely. Now is the time where I need to stop, I need to lay down, I need to do some breathing. And, you know, obviously, breathing is kind of my wheelhouse. But you know, there are many, many other strategies as well.

Todd Davenport
Yeah. And there's a whole thing we can say about, you know, therapeutic breathing, you know that that's a good point.

Jackie Baxter
But yeah, absolutely. As you as you say, and I think, having that prepared before it happens, I think as well. Because when you're in that moment, when you are sort of spiraling down into that crash, and you're sort of past the point of no return, you don't have the brain capacity to think, ah, what do I do here?

Jackie Baxter
I'm a huge fan of lists. So I developed a list, and I had my, I can't remember what I called it, but it was my crash list. And then you know, when that happened, these were the things that I tried, and not all of them worked all the time. But you know they were there on paper for me when it did happen. So at least I had something to refer to, rather than sort of just laying there going, Oh, my goodness, this is horrendous. At least I had something that I could try. I guess,

Todd Davenport
Maybe something that we can link in the shownotes is the Bateman Horne centers crash care plan that folks might find useful because it really does sort of lead through what are the things to have on hand, you know, who are the people that may need to be contacted, having basic medical information together if someone needs to advocate for you. It's a very nicely constructed document that you can fill out. And let's make sure to have that available that might be helpful for folks.

Jackie Baxter
Yeah, absolutely. Yeah. Because then even if you do need to just hand it off to somebody else and say, This is the stuff what needs done. Here's the list. And you have that knowledge that someone's got you as well, I suppose. Because in that moment, it is very scary when you're heading down that hole, so to speak.

Jackie Baxter
Thank you so much for joining me. It's been an absolute pleasure. And yeah, I think we need to come back and do round two, at some point when we have the capacity. So yeah, thank you so much for giving up your time

Todd Davenport
Thank you and your listeners for having me. This has been fun. Hopefully it's been helpful information.

Transcribed by https://otter.ai

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141 - Todd Davenport - a deep dive into Post-Exertional Malaise (PEM) - Long Covid Podcast

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Episode 141 of the Long Covid Podcast is a chat with the fabulous Todd Davenport - physio & exercise scientist specialing in Long Covid, MECFS & Post-exertional Malaise. We take a dive into PEM, some of the science behind it and some thing...