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I am so thankful for these videos and Padlet that have been available for me to slowly work my way through. What a gift this whole forum has been to me, as I struggle through the lived experience of Long Covid.

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I love this format- I'm in Australia so the forum ran through the middle of the night for me so the LC didn't allow me to watch this live. I'm finally getting onto watching everything, looking at the resources and feeling inspired and hopeful that I will get through this to being a different physio when I do get back to work. Thanks for the hope :)

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https://bihsoc.org/bp-monitors/for-home-use/

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Precision Medicine and differentiating fatigue

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Precision Medicine and differentiating fatigue

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Is there a link to document/literature/anymore information about this.
Thanks,
Irene

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Long covid and medical gaslighting: Dismissal, delayed diagnosis, and deferred treatment

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Long covid and medical gaslighting: Dismissal, delayed diagnosis, and deferred treatment

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While we know a lot more about Long Covid today, patients who were infected with Covid-19 early on in the pandemic and developed Long Covid had to con…

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Here is the pdf of the full presentation!

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The current landscape of Long Covid research Sept 22

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Current Landscape of Long Covid research

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Long COVID Physio International Forum Playlist

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Long COVID Physio International Forum Playlist

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Listen to Long COVID physio forum by Jimmy McKay on Apple Music. Stream songs including "Peanut Butter Jelly", "Shut Up and Dance" and more.

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Just like Long Covid is a Systemic Complex disease-- management of symptoms is not as helpful as pulling out the many anchors

...Health System issues are also a Systemic Complex Disease whose symptoms show up as Barriers in research, lack of funding, lack of care in govts and med bodies, med gaslighting and so on. The anchors are in wider historical inequities, continuation of cultural-colonial mindset, and thriving horror of eugenics showing up in the binary of abled/disabled.

Long Covid is a disruptor.

It was heartwarming to watch the disruption in the Conference. Who is an Expert and Who is a LC Sufferer? Who Speaks and Who Listens? Disruption through diversity of voices and tones. Fierce passion in each session unlike the usual cold detachment in conferences previously. Not an ego status drive but the body-drive of pain and suffering. A commitment that was palpable. And the warmth as if it was a party where host is doing their best to ensure no one is forgotten.

And all this intelligently and firmly.

How beautiful this!

I am deeply moved by my experience and very hopeful for the future of health systems. This is the revolution in the sea.

And I end this note in a way I have never done in a conference -- much love to you all 💕

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Finally figured out Padlet. :)

Here is the lecture handout from yesterday's session. Thank you so much for the chance to share!

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LCP Forum Science of PESE Handout Davenport 09-09-2022

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"Science isn't finished until it's understood" Jimmy

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"Science isn't finished until it's understood" Jimmy

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Closing remarks of the Long COVID Physio International Forum by Darren Brown.

Dr Jimmy McKay, Science Communicator for the Department of Rehabilitation and Human Performance at Mount Sinai Hospital System, USA

Darren Brown (he/him), Chair Long COVID Physio and Clinical Academic Physiotherapist, UK

Ciara Breen, Occupational Therapy Manager Galway University Hospitals, and HSCP representative on the HSE Long COVID Working Group, Ireland

Dr Brendan Delaney, Chair in Medical Informatics and Decision Making Imperial College, UK

Dr Mark Faghy, Associate Professor in Respiratory and Physiology at the University of Derby, UK

Dr Caroline Appel (she/her), Long COVID Physio Open Executive Member, UK

Dr Pauline Oustric, Co-Founder and President ApresJ20 Covid Long France, France

César Manuel Lepe Medina, Founder and admin COVID Persistente México Comunidad Solidaria, Mexico

Key points raised in this session included:

There remains a gap in knowledge between health community and what persons living with Long COVID are experiencing

Importance in rehabilitation to screen for PEM

Patient engagement is key in establishing models of care and engaging in research.

Integration and collaboration with other diseases is critical

Unique 2 days

Centering the patient voice throughout

Patient, clinician, researchers - a multi-stakeholder engagement during the Forum

There is a vulnerability to living with Long COVID - importance of clinicians to recognize and acknowledge health challenges.  Sometimes gaslighting happens when one doesn’t even realise it.

Important to acknowledge the importance of how self-reported PROMs can recognize Long COVID.

2 types of gaps

research gaps (biomarkers - microclots, platelets, cytokines; reactivation of the virus)

gap in knowledge translation.

Patient-reported outcome measures are critical and important.

BMJ Guide for managing long COVID. Coming soon - Delany, Greenlagh, Sivan

Recognition of the massive amount of knowledge obtained to date and the gaps that still exist.

Collaborate - Engagement  and Importance of patient engagement in research

Integrate - of approaches; of health care teams; development of services - interdisciplinary approaches to care.

Differentiate - there is not one solution to Long COVID; not a one size fits all. Need to understand the different experiences among patients and what it means for them.

Listen

Take time to reflect on the learning and keep the momentum going!

Jimmy’s word is Communicate - “science isn’t finished until it’s communicated and understood”  The goal of communication is not to have communicated, it is to ensure the other person understands your message!  Do we need more information or do we need to communicate it further?
-importance of highlighting the economic impact, global health impact of Long COVID.

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A huge thank you and congratulations to @darrenabrown and the @LongCOVIDPhysio team for putting together such an amazing forum. This is the beginning of something wonderful. To the organisers enjoy more than one glass of wine now (or whatever your favourite treat is) and I hope you get to take some days off to rest. You all rock!!

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Orthostatic Intolerance, Dysautonomia, and POTS

With Dr David Strain and Dr Asad Khan, Lauren Styles, Dr Jenna Tosto Mancuso, Emily Rich, Lindsay Skipper and Dr Anjali Agarwal

Dysautonoimia is umbrella  term for: POTS, Orthostatic Intolerance, Inappropriate Sinus tachycardia (IST)

Autonomic dysfunction can affect any system, speed it up or slow it down.

Key triggers: large meal, standing, waking up and moving, hormones, temperature, standing for long periods.

The patient: To have autonomic dysfunction can mean intolerance to posture change, gastroparesis, bladder issues, MCAS, POTS, IST, and reduction of quality of life. Unpredictable and changes. Affects all aspects of life and requires planning. Eg. Change of meal size, using a shower chair, or sit down instead of stand, taking more rest periods through the day. Often worse early on in acute onset of symptoms so early diagnosis beneficial;

Links to EDS, Marfaans syndrome and other connective tissue disorders. Also MCAS and other things.  Often all diagnosed after Long COVID.

Tests: formal autonomic dysfunction testing - harder to find

Tilt table testing to assess heart rate and blood pressure changes at different gradients

Small fibre neuropathy testing

Adapted autonomic profile

BP and HR monitoring

COMPASS-31 or Vanderbilt Orthostatic Symptom Score

NASA lean test- no longer used

Treatment:

Find healthcare professionals who are prepared to participate in diagnosis and care (Peer Support Groups and charities like Dysautonomia International can be a good source to help find these health professionals).

Pharmacological options- waiting for tests should not delay starting these. Beta blockers, Sinus tachycardia blocker- ivabradine; midodrine, and many others. Individualised and needs medical input.

Strategies for symptom management - increase salt and fluid intake to increase blood volume, which can improve positional change symptoms; compression garments - abdominal, leg or calf compression.; gut health; Elevating bed at head end- helps retain more fluid overnight; breathing strategies; vagus nerve stimulation; control of MCAS symptoms eg with antihistamines H1/H2; cold showers/baths; sleep- avoid adrenaline surges before bed; Diet;

Take away comment: plan before you see a health professional; collect hard data with HR and BP monitoring and positional changes multiple times eg when lie, sit and stand. Think about other symptoms- headaches, sweating, circulation peripherally in feet and hands, dizziness, sleep issues, hormone changes, temperature sensitivity.

Learn about these dysautonomia issues before you go if you can using the resources available.

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Slide Deck - Episodic Disability Science Session

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Slide Deck - Episodic Disability Science Session

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Dysautonomia-MVP Center - Paula Moore M.D.

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Compass 31 Online Questionnaire - Dysautonomia-MVP Center - Paula Moore M.D.

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Welcome to the first ever online self-scoring Compass 31 autonomic assessment. Download Compass 31 by clicking here. Answer the questionnaire using Microsoft Excel. Save the file and upload to our office using this upload link. You’re done!

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Thank you to the organisers of #LCPForum for providing free access to delegates from LMICs. Despite this, there appear to be very few attendees and indeed presenters from Africa and the Global South. There is very patchy data on Covid infections, let alone Long Covid prevalence in Africa and other regions in the Global South. In South Africa, where I am from, we were very hard-hit by COVID and I am aware of many people likely living with Long COVID, even if they are not aware of this themselves in many cases. Many health professionals are unaware of this and gaslighting is rife. We need more research in the Global South and more on the prevalence of LC, the experiences of people living with LC and strategies in Africa and other regions that are being used to mitigate the effects of LC.

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Long COVID has devastating impacts on the ability to do things, including daily activities and work. There are different types of exertion; physical, cognitive, and emotional. Everything we do in a day requires exertion and this can make pacing difficult. The only time we are not exerting ourselves, is during rest. Unfortunately, rest in our society is often devalued as a meaningful practice and this is reflected in work spaces. Individuals lose a part of their identity when they lose their ability to work or do the things in their life that they enjoy.

Long-COVID is not something that can be “pushed through” and can result in massive and devastating relapses. Current programs and research need to focus on how to regain control in completing daily and work activities. Individuals struggle not only with work, but balancing work and other non-work related activities. It is noted that not being able to work is not just a problem for people with Long COVID, it is also a problem for workplaces, the economy, and communities. It will be important to change the narrative from returning to work as before to considering what needs to be changed to allow individuals to work.

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Allied health providers list (physio, OT, etc)

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Allied health providers list (physio, OT, etc)

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Emily Rich, MOT, OTR/L

Occupational Therapy

Tucson, AZ

Tucson Medical Center outpatient therapy

POTS, EDS, MCAS, etc.

5395 E. Erickson Dr. Tucson, AZ 85712

(520) 324-7005

Fax: 324-6498

Physical Therapy

Tucson, AZ

Tucson Medical Center

Vestibular specialist, Pilates-specific/certified, pelvic floor, ortho, neuro

Simons Physical Therapy

Physical Therapy

Tucson, AZ
https://www.simonsphysicaltherapy.com/
8703 E Golf Links Rd

Phone: 520.514.1114
Fax: 520.514.2144

Sari Lewis, OTR/L, RCST®
Specialty: Craniosacral Therapy
Scottsdale, AZ

Sari Hands PLC
Pain, stress, anxiety, auto-immune issues, mold and other toxicity exposure
Address: 14362 N. Frank Lloyd Wright Blvd. Suite 1000

Scottsdale, AZ 85260
Contact: (480)-206-6592

Fax is 480-451-1352

Website https://sarihands.com/

I require payment at time of service.

If clients have insurance with out of network outpatient occupational therapy benefits, I can provide a master copy of superbill that they can submit to insurance for a $50 admin fee. I do not provide documentation to insurance companies.

Katie Pierce, PT, DPT
Vestibular rehabilitation/dizziness; post-concussive rehabilitation; and reconditioning for patients with dysautonomia/POTS, hypermobile connective tissue disorders, CFS/ME, and other complex medical conditions

Flagstaff, AZ (with telehealth for patients throughout Arizona)
Banner Physical Therapy - Flagstaff University Clinic
Patients with dysautonomia/POTS, hypermobile connective tissue disorders, CFS/ME, long COVID.
Address: 906 W University Ave Ste 120 Flagstaff AZ 86001
Contact: (928) 556-9935

Insurance: Yes. Most commercial and federal payers, including but not limited to Medicare, BCBS, United Healthcare, AHCCCS IHS, AHCCCS CareFirst, self-pay discounts available

Chelsey McCauley RD, LDN, CNSC

Arizona, California, Washington, Idaho, Whyoming, Colorado, Virginia, Michigan, Washington DC

Nourish 4 Life

POTS, MCAS, GI Disorders, Celiac Disease and gluten free diet

(602) 730-5982

chelsey@nourish4life.com

I'm not currently contracted with insurance, but fees are FSA and HSA eligible. I also provide super bills upon request

California:

Caitlin O'Donnell, OTD, OTR/L;

Occupational Therapy

Pomona, CA

Casa Colina

POTS, EDS

CODonnell@casacolina.org
https://www.casacolina.org/programs-services/occupational-therapy/
Sarah Barnes, PT; Rachel Yaghoubian, PT.

Physical therapy

Pomona, CA

Casa Colina

POTS, EDS
https://www.casacolina.org/programs-services/physical-therapy/
Phone: (909) 596-7733, Ext. 3500

USC Occupational Therapy

Occupational therapy

Los Angeles, CA

Lifestyle redesign approach: POTS, MCAS
https://chan.usc.edu/patient-care/faculty-practice/mcas-dysautonomia
Phone: (323) 442-2850

Re+Active Rehabilitation

Physical therapy, Occupational therapy, Psychology

Los Angeles: West LA and Torrence locations

EDS, POTS, MCAS

https://www.reactivept.com/eds

Email: info@re-activept.com Fax: 310-933-4803

Insurance: billable option

Kristin McConnell, OTD, OTR/L
Specialty: Occupational Therapy

Location: Telehealth (California); In-Home services (North county, San Diego)

Address: Carlsbad, CA

Company name: Kristin McConnell Occupational Therapy & Wellness (website: www.kristinmcconnell.com)

Populations of interest: MCAS, dysautonomia/POTs, autoimmune disease, chronic migraine, chronic pain, insomnia

Contact information:

Insurance/Payment options: Out-of-network (Can provide superbills for reimbursement); Offer packages and payment plan options

Cedars-Sinai

Preventative and Rehabilitative Cardiac rehab program

POTS, Long-covid

Los Angeles

https://www.cedars-sinai.org/programs/heart/clinical/preventive-rehabilitative-cardiac.html

Article:

https://www.cedars-sinai.org/newsroom/after-20-year-search-undiagnosable-patient-gets-answer-pots/#:~:text=POTS%20and%20Cardiac%20Rehabilitation&text=%E2%80%9CCardiac%20rehabilitation%20aims%20to%20not,and%20steady%20wins%20the%20race.

Name: Ariana Abend-Goldfarb

Specialty: Pilates, manual therapies

City/State: Seal Beach, CA

Specialized populations: EDS, hypermobility, POTS, and dysautonomia

Contact: (562)519-3760

aabendgoldfarb@gmail.com

Insurance: No

Name: Lori Winslow

Specialty: Pilates; completed Integral Movement Method coursework by Jeannie Di Bon

City/State: near SF Bay area

Specialized populations: EDS, POTS

Contact:

Insurance:

Emily Maguire, MHA, OTR/L

Occupational Therapy
Tampa, FL with Telehealth available
Morpheus Wellness, LLC
Occupational therapist with 20 years of clinical experience in addition to 25 years of personal experience managing POTS, EDS, and MCAS

Potentially, in ATL

Pilates-based, one PT

https://setptusa.com/contact-us/

Phone

Office: (404) 635-6343
Mobile: (202) 210-1131
Fax: (404) 592-8895

1800 Lake Park Dr, Ste 101, Smyrna GA 30080

Ada Therapy Services, PLLC, outpatient occupational therapy for adolescents and adults.

Our therapists are:

Amanda Craig, OTR/L, CBIS (owner)

Desiree Moores, OTR/L

Jen Noon, OTR/L

Emily Neufeld, OTR/L

Amber Crawford, COTA/L
Specialty: Neurocognitive disorders and conditions requiring lifestyle management.
Boise, Idaho and via telehealth for clients located in Idaho.
Company name Ada Therapy Services, PLLC
Specialized populations of interest if applicable Adolescents and adults with neurocognitive disorders or impairments impacting life management and functional performance at home, work, or in the community. This includes dementia, ASD, learning disabilities, mental health, developmental delay, Parkinson's, MS, oncology, cardiac conditions, autoimmune and dysautonomia conditions, and other chronic illness. We perform treatment in the clinic, at patients' homes, in the community, or workplace where applicable (and approved by insurance) to meet client's specific needs.
Address 5400 W. Franklin Rd, Suite H, Boise, ID 83705 (but we'll be moving our clinic location as of 10/1/22 to 270 S. Orchard St, Suite B, Boise, ID 83705)
Contact: phone, fax, email, etc. whatever you're comfortable with

Clinic phone: 208-908-6116

Fax: 208-908-0486
Insurance?

Yes, we are contracted with most insurances including Medicare, Idaho Medicaid, BC, Regence Blue Shield, United, Cigna, Molina, Select Health, and more. We bill patient's insurances directly. And we work closely with Idaho Vocational Rehab and Worker's Comp.

Mary Kiolbasa, OTR/L, MSOT, CBIS

Occupational Therapy; physical therapy present in clinic as well
Lincolnshire, IL
Northshore University Health System
847-383-2700
Special interest in working with chronic conditions, pain, and visual conditions

Melissa Koehl, PT

Physical Therapy

Chicago, IL

Chimera Health

See clients with POTS in their home in Chicago. I have a mobile and virtual practice so the patient needs their own recumbent bike, rower, pool. EDS too.

Melissa@chimera-health.com. Www.chimera-health.com

Nichole Harju, PT, DPT

Physical therapy specializing in EDS, hypermobility, pediatrics

Creative Rehab

1 South Greenleaf Suite I

Gurnee, IL 60031
http://www.creativerehab.net
847-599-9171
nharju@creativerehab.net
Warm water therapy pool

Shirley Ryan Ability Lab

Occupational Therapy, Physical Therapy, Psychology

Adolescent program

Phone: 312-238-7800

Location: 355 E. ERIE STREET 14TH FLOOR CHICAGO, IL 60611

https://www.sralab.org/services/adolescent-pots-management-program

Crystal Adams, MS, OTR/L, LMT, NBC-HWC

Specialty: Holistic Occupational Therapy, Health & Wellbeing Coaching, Complementary Health (CranioSacral Therapy, Reiki Healing)

Louisville, Kentucky & Frankfort, Kentucky, telehealth (anywhere)

Company Name: Chi Holistics, LLC

Population of Interest: POTS and other dysautonomias, autoimmune conditions, chronic pain, anxiety/stress reduction

Address: 1930 Bishop Ln Suite 101, Louisville KY 40218

Contact Info: phone--(502) 229-7372, email--ChiHolisticsLLC@gmail.com

Insurance: Not accepted, do have sliding scale

Pennsylvania:

Johns Hopkins POTS Program

Baltimore, MD

PM&R physicians, physical therapy, occupational therapy, long-covid

https://www.hopkinsmedicine.org/physical_medicine_rehabilitation/services/programs/pots/team.html

Kennedy Krieger Institute:

Baltimore, MD

Physical therapy

Phone: (888) 554-2080

https://www.kennedykrieger.org/patient-care/centers-and-programs/pediatric-postural-orthostatic-tachycardia-syndrome

360 Physical Therapy & Wellness

Physical therapy

POTS, EDS

11840 West Market Pl Suite G

Fulton, MD 20759

Phone: 301-383-8350

Massachusetts:

Ashley Soughley PT, DPT, NCS

Physical Therapy

Framingham, MA
Spaulding rehabilitation
Specialization: POTS, neurological and vestibular PT

Sarah Dueffert, PT, DPT, NCS

Physical Therapy

Maple Grove, MN

Cortex Rehabilitation LLC

Best way to get in contact with me is: sdueffert@cortexrehab.com

What I offer:

My Fatigued to Free coaching program for people with POTS and related conditions is available to people worldwide

I also offer one on one physical therapy services to clients residing in Minnesota.

Name: Rita White, DPT, IHP

Discipline: Physical Therapist and Wellness Coach

City, State, Country: Minneapolis, MN, USA (worldwide for virtual wellness coaching!)

Company Name: Intrinsic Physical Therapy & Wellness

Specialized populations: POTS, EDS, MCAS, pelvic health

Contact info:

phone #: 612-44-8455

email: ritawhite@intrinsic-pt.com

Website: www.intrinsic-pt.com

Elizabeth Yates Horton, PT, DPT, NCS

Physical Therapy

Syracuse, NY

Engage Therapy and wellness (PT, OT, SLP, PLLC)

3175 E Genesee St Suite 5
Syracuse, NY 13224

Phone number: 315-810-2424

Email info@brainbodybetter.com

https://www.engagebrainbodybetter.com/

Tara Murphy OTR/L, CAPS
specialty: Outpatient Homecare

Orange County, NY

Hudson Home OT, PLLC

Specialized populations of interest: Adult/Geriatric

Address: N/A mobile practice

Contact phone : 845-204-8920

fax: 845-580-9228

email: tmurphy@hudsonhomeot.com

Website: www.hudsonhomeot.com

Mount Sinai

Center for Post-Covid Care

Long-covid specialty

Address: 10 Union Square East New York, NY 10003

Phone: (212) 844-6300

North Carolina:

WakeMed rehab

South Carolina:

Jen Bambrough PT, DPT, NCS

Physical Therapy

Chattanooga, TN
The Dizzy PT
Www.thedizzypt.com
Cell: 423-212-9661
Fax: 423-389-9336

Megan Colletti OTR/L

Specialty: Occupational Therapy

Knoxville, TN- no telehealth

Company name: Pain Consultants of East TN

Specialized populations of interest if applicable: chronic pain, CRPS, EDS, self-management, Acceptance commitment therapy

Contact: (phone, fax, email, etc. whatever you're comfortable with) mcolletti@painconsultants.com

: 1128 Weisgarber Rd #100, Knoxville, TN 37909

Fax: (865) 579-5176

Website: https://painconsultants.com/

Facility has physical therapy and interdisciplinary team

Insurance accepted? Yes Types?: Humana, Cigna, Blue Cross Blue Shield, United Healthcare, medicare, medicaid

South Carolina:

West Virginia:

Samantha Hanson
Art Therapy

Appleton,WI
Peace in Colorful Dynamics

920-659-0078, peaceincolor2020@gmail.com.

Can email text or call, referal from doc with notes about health is helpful, specialize in art therapy (painting plaster collage clay etc- no prior art sskills needed, anxiety mood disorders, medical anxiety, fatigue, pain management

Telehealth:

Tasha Searles, MSN, RN, AGCNS-BC
Creative Thriving, LLC
Health Coaching & Consulting
Serving clients in Oregon, Washington, & Indiana via telehealth
Specialized populations of interest: EDS, POTS, MCAS, Autism, ADHD, Diabetes
Contact: tasha@CreativeThrivingLLC.com or through my website www.CreativeThrivingLLC.com
I don't accept insurance, but do offer sliding scale options.

Ashley Soughley PT, DPT, NCS

Physical Therapist specializing in the treatment and management of POTS, offers 1:1 consulting for clinicians and physicians, and educational opportunities for clinicians

Company: Rise Above POTS

Website: www.RiseAbovePOTS.com

Contact: contact@riseabovepots.com

IG: RiseAbovePOTS

Katie Mednick, RD
Registered Dietitian
Telehealth practice serving: Alaska, Arizona, California, Colorado, Connecticut, Hawaii, Idaho, Illinois, Indiana, Iowa, Maine, Massachusetts, Michigan, New Hampshire, Oklahoma, Oregon, Pennsylvania, Texas, Utah, Vermont, Virginia, Washington, West Virginia, Wisconsin, Wyoming
EDS Nutrition
I see patients with Ehlers-Danlos Syndrome, dysautonomia, and other health conditions.
Website: edsnutrition.com, email: edsnutrition@gmail.com

Cheryl Harris, MPH, RD
Registered Dietitian

Harris Whole Health

9675-A Main Street

Fairfax, VA 22031

Phone: (571) 271-8742

Fax: (703) 988-2627

Website: www.HarrisWholeHealth.com

Laurie Bilyeu, MS, RD, LDN

Phone and video-conference only

617-645-3147

Shelburne Fall, MA

EDS, POTS, MCAS

https://www.connectionnutrition.org/

Bonnie Nasar RDN,

Registered Dietitian Nutritionist

Tele-nutrition exclusively
Specializing in Nutrition for POTS, EDS, Mast Cell Disease, Gastroparesis, and Fibromyalgia.
https://nasarnutrition.com
(732) 481-2632

Caelum Schild

Credentials:

Discipline:

Company name:

Specialised populations:

I just see people with invisible illness - all forms of dysautonomia, POTS/OI, ME/CFS, EDS/HSD, PASC/long COVID

Contact info:

Phone - +61 433 577 143

Postal - Lofty Health & Wellness, PO Box 18, BURNSIDE, South Australia, Australia 5066

*Note: These professionals and facilities have not been specifically vetted

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Emily Rich, MOT, OTR/L Occupational Therapy Tucson, AZ Tucson Medical Center outpatient therapy POTS, EDS, MCAS, etc. 5395 E.

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Breakout Room 4 summary: Juggling care roles, daily activities, work/study

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Breakout Room 4 summary: Juggling care roles, daily activities, work/study

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Life Roles & Responsibilities

-these naturally fluctuate (ie. young kid growing up; child in school or not; aging parents) but also change out of necessity of illness management (ie. relapses, appointments)

-roles include work, parenting, caring for elderly parents, managing own health admin, among other roles!

-financial impacts and “making ends meet”

-work/employment causing relapses and the need for shifting work roles and flexibility (ie. work from home; change in hours; changing jobs/careers altogether; being unable to work AND manage other life roles)

-attempts to rejoin hobbies/enjoyable activities and/or reimagine, discover other ones

Prioritizing Activities

-doing less of the things you used to; tradeoffs of activities (ie. if you cook dinner, you must do less in other categories)

-prioritizing how/when we advocate for self & others; the exertion of struggling for better collectively and individually and how the need to focus on illness management means you must disengage sometimes

Helpful Support

-from spouses & family; disability & illness community and the validation that we give eachother!
-helpful support allows for activity prioritization and sharing roles & responsibilities, and for better illness management

Lack of Support and ABLEISM (incl internalized ableism)

-lack of recognition and minimizing from governments & policy, healthcare professionals, employers, all the way down to personal relationships and losing friends & family relationships because of the lack of recognition and minimizing
-working through and learning about internalized ableism

Tough feelings and TRAUMA

-guilt & grief w transitioning to acceptance of different way of life

-the impact on your identity and life roles

-exhaustion of constantly adjusting, adapting, and being maligned

-overwhelm of expectations to and pressure of juggling it all

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Unable to work/study or complete daily tasks-Tips and strategies for adapting with Susannah

Themes

Acceptance and adapting- can change day to day, and a big adjustment to the new you and a journey.

It’s about gaining an element of control on life and sense of identity. We have value, but how we give it changes.

“Be kind to yourself and find the joy in simple things”

Tips:

looking for the positives; slowing down life and learning new skills can give meaning and purpose. Eg activities that can be started and stopped like crochet and jigsaw.

Spending time with family and friends is a positive even if a restful lower energy activity. You are there.

Finding a role that makes you useful again to give you identity

Spoons or a battery of energy.  Take some spoons for things that give you joy.

Educate others on things that may trigger you.  Speaking up and be clear with what help you need. Some people don’t always realise you still

For example: Sensory overload like others talking too fast or too loud or too many people or noises.  Tell them to slow down and talk quieter, or interact in quieter surroundings.

Choose your crowd, and tell them what you need.  This can help maintain social interaction.  Choose how you interact.  Set your boundaries of how long, what you need to make it work. There will be those that are your ally and will understand and support you.  They just don’t know how.

Pacing and managing exertion is hard when managing daily activity and what to prioritise. Learning to say no is hard.

Breaking things down into smaller steps to do activity can be helpful and give a sense achievement.

Rest frequently and stop where you are to rest and do what your style of rest is.  It may be  easier than going to bed and climbing stairs.

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Recognition that many members of the Long COVID community are engaged in work in the context of the community, advocacy, education.
What are the biggest barriers for you with employment?
-          Lack of knowledge among employers, insurers, HR personnel

-          Uncertainty and Episodic Nature

o   Unpredictability of the symptoms.

-          Insurance coverage

-          Reasonable accommodation to downgrading to part time work.

-          Rigidity of HR and occupational health – pressure to return to regular duties

-          Challenges of ‘looking well and not being recognized as living with disability.

-          Idea of preparing for a relapse or episode construed as a negative attitude.

-          Inability to participate in all aspects of work.

-          Invisibility of Disability

o   Difficulty when you can’t see the disability ;

-          Broader Environment

o   Push to back to ’normal’ in the pandemic

o   physical risk of re-infection back to work.

-          Triggers

o   Cognitive challenges / demands of employment.

o   Cognitive and stressful triggers

Strategies
-          Thinking creatively with accommodation and RTW

-          Flexibility of location of work

-          Education of employment sector

-          Focusing on what you can do.

-          Focus on strategies for sustainable return to work.

-          Accommodation

-          Vocational rehabilitation; OT

-          Making use of union representatives (if applicable) / advocacy organizations

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Here's the playlist on Spotify!

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Breakout workshop 2: Returned to work but limiting all other activities - How to work and maintain some form of quality of life?

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Breakout workshop 2: Returned to work but limiting all other activities - How to work and maintain some form of quality of life?

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Q4: What has been most helpful in supporting you participate in work/study and engage in daily activities?

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Breakout workshop 2: Returned to work but limiting all other activities - How to work and maintain some form of quality of life?

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Breakout workshop 2: Returned to work but limiting all other activities - How to work and maintain some form of quality of life?

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Q3: Have you received any help/support in making adjustments to support participation in daily activities & work (and combining them)?

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How to Find a Doctor With Experience in Autonomic Disorders You can use the regional listing below, or the Interactive Global Dysautonomia Map to find a physician. Please note that this is not a comprehensive list of all doctors capable of treating patients with autonomic disorders, and some of the doctors on this list may be better qualified than others to treat certain conditions.

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Long Covid and Return to Work: What works

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Long Covid and Return to Work: What works

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Breakout workshop 2: Returned to work but limiting all other activities - How to work and maintain some form of quality of life?

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Breakout workshop 2: Returned to work but limiting all other activities - How to work and maintain some form of quality of life?

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Q2: How have you changed the way you take part in daily activities/work (and combine them)?

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In this Science session Dr Kelly O’Brien will present on the conceptualisation and measurement of Episodic Disability, followed by a panel discussion with Cathy Thomson, Natalie Rogers, Dr Manoj Sivan, and Niamh Roche.

Dr O’Brien discussed some of the lessons learnt from work in HIV and rehabilitation in the context of COVID-19 rehabilitation and the episodic nature of disability.

1# Concept of uncertainty about when a next episode might arise or what the long term consequences might be

2# Episodic or fluctuation in the day or longer term

3# Episodes can be exacerbated or alleviated by contextual factors e.g. accessing social support, stigma, living strategies and personal attributes.

The measurement of disability in Long COVID is important for assessing impact, identifying need for service, facilitating communication of disability, goal setting and assessing effect and safety of treatment.

Panel Discussion:

Concept of episodic disability, does it resonate and how?

Panellists discussed impact of episodic disability including impact on work and employment, social inclusion e.g. filling role as a parent and the sense of loss of identity

Concerns raised about the future and uncertainty associated with this including experiences of relapse

Education and sense of support is huge factor in preventing and mitigating disability

Similarities with other chronic conditions

How do we measure episodic disability given its fluctuating nature?

Development of the COVID-19 Yorkshire Rehabilitation Scale (C19-YRS) which includes 3 components reflective of the ICF framework from WHO

The C19-YRS identified that often symptoms track together where all move in severity e.g. from mild to severe. Gives an accessible and visual impression for patients to monitor how their symptoms are changing with time via the app. If kept alongside a diary can help to identify triggers as part of self-management tools.

Episodic nature driven by symptoms and interaction with environment as per WHO framework

Outcome measures need to be condition specific rather than multiple measures per symptom. Pick a short and comprehensive measure that can capture the episodic nature.

What should we be thinking about in relation to episodic disability and future clinical practice, programming or research?

Return to work policies and episodic disability. Avoiding time bound phased returns and allowing for a truly person-centred, non-goal specific approach that allows for change. Employers should avoid questions where the answer is uncertain e.g. when do you think you can return to work and have open and honest communication where the goal posts don’t change.

Re-educate society with what it means to be disabled? Unlearning the misconception that disability is experienced as a static state and impossible to accurately gage what is possible to commit to.

Social support needs to be improved and consider the wider implications e.g. housing and financial support

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Breakout workshop 2: Returned to work but limiting all other activities - How to work and maintain some form of quality of life?

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Breakout workshop 2: Returned to work but limiting all other activities - How to work and maintain some form of quality of life?

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Q1:What symptom do you find disrupts daily activities/work the most?

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Affiliations

¹ Academic Department of Rehabilitation Medicine, University of Leeds, Leeds, UK.

² National Demonstration Centre of Rehabilitation Medicine, Leeds Teaching Hospitals NHS Trust, Leeds, UK.

³ Covid Rehabilitation Service, Leeds Community Healthcare NHS Trust, Leeds, UK.

⁴ Airedale NHS Foundation Trust, Keighley, UK.

Free PMC article

Free PMC article

Affiliations

¹ Academic Department of Rehabilitation Medicine, University of Leeds, Leeds, UK.

² National Demonstration Centre of Rehabilitation Medicine, Leeds Teaching Hospitals NHS Trust, Leeds, UK.

³ Covid Rehabilitation Service, Leeds Community Healthcare NHS Trust, Leeds, UK.

⁴ Airedale NHS Foundation Trust, Keighley, UK.

Abstract

Background: The C19-YRS is the literature's first condition-specific, validated scale for patient assessment and monitoring in Post-COVID-19 syndrome (PCS). The 22-item scale's subscales (scores) are symptom severity (0-100), functional disability (0-50), additional symptoms (0-60), and overall health (0-10).

Objectives: This study aimed to test the scale's psychometric properties using Rasch analysis and modify the scale based on analysis findings, emerging information on essential PCS symptoms, and feedback from a working group of patients and professionals.

Methods: Data from 370 PCS patients were assessed using a Rasch Measurement Theory framework to test model fit, local dependency, response category functioning, differential item functioning, targeting, reliability, and unidimensionality. The working group undertook iterative changes to the scale based on the psychometric results and including essential symptoms.

Results: Symptom severity and functional disability subscales showed good targeting and reliability. Post hoc rescoring suggested that a 4-point response category structure would be more appropriate than an 11-point response for both subscales. Symptoms with binary responses were placed in the other symptoms subscale. The overall health single-item subscale remained unchanged.

Conclusion: A 17-item C19-YRSm was developed with subscales (scores): symptom severity (0-30), functional disability (0-15), other symptoms (0-25), and overall health (0-10).

Keywords: COVID-19; PACS; PROM; SARS-CoV2; instrument; phenotypes; scale; traits.

Conflict of interest statement

The authors declare no conflict of interest.

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References

Callard F, Perego E. How and why patients made Long Covid. Soc Sci Med. 2021;268:113426. - PMC - PubMed

NICE . Covid‐19 Rapid Guideline: Managing the Long‐Term Effects of Covid. 2020;19. - PubMed

Whitaker M, Elliott J, Chadeau‐Hyam M, Riley S, Darzi A, Cooke G, Ward H, Elliott P. Persistent COVID‐19 symptoms in a community study of 606,434 people in England. Nat Commun. 2022;13(1):1957. - PMC - PubMed

Davis HE, Assaf GS, McCorkell L, et al. Characterizing long COVID in an international cohort: 7 months of symptoms and their impact. EClinicalMedicine. 2021;38:101019. - PMC - PubMed

Brown DA, O'Brien KK. Conceptualising Long COVID as an episodic health condition. BMJ Glob Health. 2021;6(9):e007004. 10.1136/bmjgh-2021-007004 - DOI - PMC - PubMed

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national center for biotechnology information

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The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) patient-reported outcome measure for Long Covid or Post-COVID-19 syndrome - PubMed

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1 Academic Department of Rehabilitation Medicine, University of Leeds, Leeds, UK. 2 National Demonstration Centre of Rehabilitation Medicine, Leeds Teaching Hospitals NHS Trust, Leeds, UK. 3 Covid Rehabilitation Service, Leeds Community Healthcare NHS Trust, Leeds, UK. 4 Airedale NHS Foundation Trust, Keighley, UK.

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Autonomic Disorders Video Library from Dysautonomia International

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Autonomic Disorders Video Library from Dysautonomia International

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Over 100 free educational videos on POTS, other forms of dysautonomia and Long COVID, from the leading dysautonomia experts.

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Join the web's most supportive community of creators and get high-quality tools for hosting, sharing, and streaming videos in gorgeous HD with no ads.

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I use the Bearable App to track my Long Covid symptoms and the rollercoaster of episodes over time. https://bearable.app/

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Having suffered myself with various health conditions, I know all too well the frustration of coming out of an appointment with my doctor or therapist knowing that I hadn't been able to give them a full and clear picture to allow them to make a better assessment of me. This is unsurprisingly a very common frustration when you consider the brain fog and general difficulty thinking straight that comes along with many mental and physical health conditions...

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Bearable | Mood & Symptoms Tracker App | All of Your Health in One Place

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Having suffered myself with various health conditions, I know all too well the frustration of coming out of an appointment with my doctor or therapist knowing that I hadn't been able to give them a full and clear picture to allow them to make a better assessment of me.

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This website has info summarizing what we know to date on Long COVID dysautonomia, a lecture on autonomic dysfunction in Long COVID from Dr. Mitch Miglis, Stanford autonomic neurologist and lead researcher on the largest Long COVID dysautonomia studies to date. Go to the "What We Know" tab to view the video and written summary.

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Research on COVID-19 and Long COVID is evolving faster than research on any disease in history, with almost every academic medical center around the world somehow involved in COVID research, but there is still so much to learn. This site is not meant to be a comprehensive description of everything we know about Long COVID to date, but we will briefly summarize some key points.

Long COVID is common.
Researchers have reported that 30-50% of SARS-CoV-2 patients are developing long-term symptoms, even if they had mild or asymptomatic initial infections, and even if they were young and healthy at the time of infection. Using a conservative estimate of 30% of all COVID-19 cases, as of September 2021, there are an estimated 67 million people worldwide living with Long COVID. This number will continue to rise as SARS-CoV-2 continues to spread around the world.

Dysautonomia is common in Long COVID. Dysautonomia can cause or contribute to many of the symptoms found in Long COVID. Long COVID is not one thing.

Researchers from Stanford University and Stony Brook University have found that more than half of Long COVID patients develop moderate to severe autonomic nervous system dysfunction, which is also known as dysautonomia. "Dysautonomia" itself is not a specific diagnosis, but is an umbrella term that includes many different autonomic nervous system disorders. Many Long COVID patients are being diagnosed with various forms of dysautonomia including, postural orthostatic tachycardia syndrome, inappropriate sinus tachycardia, orthostatic intolerance, orthostatic hypertension, orthostatic hypotension, neurally mediated hypotension, autoimmune autonomic ganglionitis, gastroparesis, hyperhidrosis, or small fiber neuropathies that impact autonomic small fiber nerves.

Dysautonomia, or autonomic nervous system dysfunction, can cause profound fatigue, headaches, shortness of breath, exercise intolerance, lightheadedness, abnormal heart rate, and blood pressure findings, temperature and sweating abnormalities, gastrointestinal symptoms, sleep dysfunction, dry eyes, dry mouth, and more.

Long COVID can be debilitating.
Long COVID can range in severity from mildly disabling for a few months after the initial COVID infection, to a completely devastating long-term chronic illness that leaves a previously healthy young person bedridden and unable to care for themselves . More research is needed to understand why patients improve or worsen over time, and what we can do to help all patients fully recover.

SARS-CoV-2 can cause long-term symptoms through a number of different mechanisms. Different patients may have more than one, or even all of these mechanisms, occurring at once. The four primary mechanisms, which are seen with many other viruses that can trigger long term symptoms, are:

Organ or tissue damage during the acute period of infection (for example, damage to the heart, lungs, blood vessels, or nerves);

Active infections: this can include ongoing infection with the SARS-CoV-2 virus, re-activation of latent infections (such as shingles), or the development of secondary infections, like bacterial pneumonia;

Ongoing inflammation and/or autoimmunity, which can happen even after a virus has been cleared from the body; and/or

Bedrest associated deconditioning - anyone who has had a debilitating infection will likely spend a few days or a few weeks in bed, and even very fit people can become deconditioned in just a few days of bed rest; deconditioning can also develop after the initial infection, in response to Long COVID symptoms that make it hard to exercise or engage in normal daily activities.

Many other viruses trigger long term chronic illnesses with significant dysautonomia, similar to Long COVID.
SARS-CoV-2 is not the first virus to trigger a debilitating chronic illness in a subset of individuals infected, and it won't be the last. Other global pandemics, such as the Russian flu of 1889-1890 (believed to be an earlier coronavirus, not influenza), the Spanish flu of 1918, the original severe acute respiratory syndrome (SARS) coronavirus outbreak in 2003, and Middle Eastern Respiratory Syndrome (MERS) in 2012, all resulted in a subset of individuals developing prolonged neurological and cardiovascular symptoms, along with profound fatigue. More common viral infections can also trigger chronic illness, such as Epstein Bar virus (the cause of mononucleosis), H1N1 (a common cause of the season flu), "stomach bugs" and other "common cold" viruses.

Millions of people with infection-triggered dysautonomia were living in the shadows before SARS-CoV-2 existed. These patients were often diagnosed with postural orthostatic tachycardia syndrome (POTS) or orthostatic intolerance (OI). Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is often triggered by an infection and also involves autonomic dysfunction in many patients.

The autonomic nervous system regulates immune function.
While most people understand that viruses and antibodies can damage nerve fibers, what we don't often talk about is that the autonomic nervous system itself is a major regulator of the immune system. Increases in sympathetic nervous system activity ("fight or flight") and decreases in parasympathetic nervous system activity ("rest and digest" or "vagal tone") are found in almost every autoimmune and inflammatory disease, and are known to drive the progression of inflammatory and autoimmune diseases.

Patient voices matter.
From the very start, patient-initiated research and advocacy has laid the groundwork for what we know about Long COVID. Our goal as an organization is to make sure patient voices are being heard when it comes to research planning and decision making. While we may know the facts listed above, there is so much we still need to study, to deliver more effective treatments to millions of people living with Long COVID.

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Research on COVID-19 and Long COVID is evolving faster than research on any disease in history, with almost every academic medical center around the world somehow involved in COVID research, but there is still so much to learn.

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Curious how many people avoid healthcare because of being gaslighted? I know for the first yr of my experience of LC I avoided medical care at a time when I was most ill & even had a suspected mini stroke because of being treated with contempt by one provider & dismissed by others. I have lost trust in the medical establishment. Not helped by Long Covid clinic experience over 2yrs in where they are obviously not aware of common LC diagnoses. There is a sense of having to become your own health care provider. 

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Curious how many people avoid healthcare because of being gaslighted? I know for the first yr of my experience of LC I avoided medical care at a time when I was most ill & even had a suspected mini stroke because of being treated with contempt by one provider & dismissed by others. I have lost trust in the medical establishment. Not helped by Long Covid clinic experience over 2yrs in where they are obviously not aware of common LC diagnoses. There is a sense of having to become your own health care provider. 

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How do we recognise gaslighting? With Alison Flynn

What is Medical gaslighting?

1. being disbelieved by healthcare professional

2. twisting of reality by healthcare professional, and although humour patients, and behind closed doors write things off as psychological and symptoms dismissed.

What a patient looks like:

-A patient who has experienced it are hurt, have anger, traumatised, and lose trust and faith in healthcare. They lose trust in own body and symptoms. Healthcare professionals are in a position of power, and how they behave is partly how they are trained.  And as one person said “They have our lives in their hands”, and they are the key to accessing support and tests and can back up claims for insurance and disability.

We have patients who are vulnerable and lack the medical knowledge. Words can have a big impact on patients and how we communicate with them matters.

Gaslighting can be both Obvious and subtle gaslighting

Obvious:

can be obvious gaslighting and specifically told you are wrong and that you don’t have a problem and you are over focussing on symptoms.

normal tests meaning health professional saying nothing wrong and being reassured and discharged. Instead of being acknowledged, and believed.

Subtle:

or can be subtle so hard to always pick up when being gaslighted. Explanations don’t make sense but you don’t always realise you were being gaslighted.

You can be dismissed as a complex patient so unlikely to get to the bottom of it.

And we can also gaslight ourselves and dismiss and deny our own symptoms to make situations easier, and society is saying its all over.

We don’t want to be that awkward patient, and all the other reasons already discussed to “not make a fuss”

What to do?

courage to challenge it and believe yourself and your symptoms.  Or some feel its often easier to find a different provider due to energy and time constraints.

Ask doctor questions about how they came to a diagnosis and with those symptoms how they have ruled out other differential diagnosis as Dr Putrino said earlier.

If we see it as a healthcare professional do we need to call it out? Maybe using current research about symptoms correlating with lab tests as Dr Putrino has shown.

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This is a comprehensive guide that was developed specifically for PwMECFS but will serve folks with LC well. It allows for a variety of downloading options for sensory issues and covers just about everything that an PwMECFS might experience. It's gotten great reviews from the MECFS community. https://batemanhornecenter.org/education/mecfs-guidebook/

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BHC's Crash Survival Guide provides the patient, their support network, and medical providers with practical advice on ways to manage a ME/CFS crash, and the art of preventing them.

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Darren and I were interviewed for this.

https://www.theatlantic.com/health/archive/2021/11/health-care-workers-long-covid-are-being-dismissed/620801/

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Before she caught COVID-19 at a wedding in March 2020, the physician associate spent her days diagnosing and treating people; after she was infected, she turned to her own colleagues for that same care. "At first," she told me, "I felt a kinship with them." But when her tests started coming back negative, her doctors began telling her that her symptoms-daily migraines, unrelenting vertigo, tinnitus, severe crashes after mild activity-were just in her head. (I agreed not to name her so that she could speak openly about people she still works with.)

When she went to the emergency room because half her body had gone numb, the ER doctor offered to book her an appointment with a counselor. Another doctor told her to try removing her IUD, because, she remembers him saying, "hormones do funny things to women." When she asked her neurologist for more tests, he said that her medical background had already earned her "more testing than I was entitled to," she told me. Being part of the medical community made her no different from any other patient with long COVID, her eventual diagnosis. Despite being a medical professional, she couldn't convince her own physicians-people who knew her and worked with her-that something was seriously wrong.

I've interviewed more than a dozen similar people-health professionals from the United States and the United Kingdom who have long COVID. Most told me that they were shocked at how quickly they had been dismissed by their peers. When Karen Scott, a Black ob-gyn of 19 years, went to the emergency room with chest pain and a heart rate of 140, her physicians checked whether she was pregnant and tested her for drugs; one asked her if her symptoms were in her head while drawing circles at his temple with an index finger. "When I said I was a physician, they said, 'Where?'" Scott said. "Their response was She must be lying." Even if she had been believed, it might not have mattered. "The moment I became sick, I was just a patient in a bed, no longer credible in the eyes of most physicians," Alexis Misko, an occupational therapist, told me. She and others hadn't expected special treatment, but "health-care professionals are so used to being believed," Daria Oller, a physiotherapist, told me, that they also hadn't expected their sickness to so completely shroud their expertise.

A few of the health-care workers I talked with had more positive experiences, but for telling reasons. Amali Lokugamage, an ob-gyn, had obvious, audible symptoms-hoarseness and slurred speech-so "people believed me," she said. By contrast, invisible, subjective symptoms such as pain and fatigue (which she also had) are often overlooked. Annette Gillaspie, a nurse, told her doctor first about her cough and fast heart rate, and only later, when they had built some trust, shared the other 90 percent of her symptoms. "There was definitely some strategy that went into it," she told me.

For other medically trained long-haulers, the skepticism of their peers-even now, despite wider acknowledgment of long COVID-has "been absolutely shattering," says Clare Rayner, an occupational physician who is part of a Facebook group of about 1,400 British long-haulers who work in health care. "That people in their own profession would treat them like this has led to a massive breakdown in trust." Having dedicated their working lives to medicine, they've had to face down the ways its power can be wielded, and grapple with the gaps in their own training. "I used to see medicine as innovative and cutting-edge, but now it seems like it has barely scratched the surface," Misko told me. "My view of medicine has been completely shattered. And I will never be able to unsee it."

Medical professionals have a habit of treating themselves. Daria Oller, the physiotherapist, was following her training when, after she got sick with COVID, she pushed herself to exercise. "That's what we tell people: 'You have to move; it's so important to move,'" she told me. "But I kept getting worse, and I wouldn't acknowledge how poorly I was responding." She'd go for a run, only to find that her symptoms-chest pain, short-term-memory loss, crushing fatigue-would get worse afterward. At one point, she fell asleep on her floor and couldn't get back up.

At first, Oller didn't know what to make of her symptoms. Neither did Darren Brown, also a physiotherapist, who tried to exercise his way out of long COVID, until a gentle bike ride left him bedbound for weeks. He and others told me that nothing in their training had prepared them for the total absence of energy they experienced. Fatigue feels flippant, while exhaustion seems euphemistic. "It felt like someone had pulled the plug on me so hard that there was no capacity to think," Brown said. "Moving in bed was exhausting. All I was doing was surviving."

But these problems are familiar to people who have myalgic encephalomyelitis, the debilitating condition that's also called chronic fatigue syndrome. Physiotherapists with ME/CFS reached out to Oller and Brown and told them that their symptom had a name: post-exertional malaise. It's the hallmark of ME/CFS and, as that community learned the hard way, if you have it, exercise can make symptoms significantly worse.

Brown has spent years teaching people with HIV or cancer about pacing themselves, mostly by divvying up energetic tasks throughout the day. But the pacing he needed for his post-exertional malaise "was totally different," he told me. It meant carefully understanding how little energy he had at any time, and trying to avoid exceeding that limit. Brown, Oller, and other physiotherapists with long COVID co-founded a group called Long Covid Physio to discuss what they've had to relearn, and they're frustrated that others in medicine are still telling them, people whose careers were built around activity as a medical intervention, that long-haulers should just exercise. Ironically, Brown told me, doctors are loath to prescribe exercise for the HIV and cancer patients he regularly treats, when clear evidence shows that it's safe and effective, but will readily jump on exercise as a treatment for long COVID, when evidence of potential harm exists. "It's infuriating," he told me. "There's no clinical reasoning here."

Neither Brown nor Oller knew about post-exertional malaise or ME/CFS before they got long COVID. Oller added that she initially thought little must have been written about it, "but no, there's a whole body of literature that had been ignored," she said. And if she hadn't known about that, "what else was I wrong about?"

Long COVID has forced many of the health-care workers I interviewed to confront their own past. They worried about whether they, too, dismissed patients in need. "There's been a lot of Did I do this?" Clare Rayner told me, referring to the discussion in her Facebook group. "And many have said, I did. They're really ashamed about it." Amy Small, a general practitioner based in Lothian, Scotland, admitted to me that she used to think ME/CFS symptoms could be addressed through "the right therapy." But when Small got long COVID herself, some light work left her bed bound for 10 days; sometimes, she could barely raise a glass to her mouth. "It was a whole level of bodily dysfunction that I didn't know could happen until I experienced it myself," she said, and it helped her "understand what so many of my patients had experienced for years."

ME/CFS and other chronic illnesses that are similar to long COVID disproportionately affect women, and the long-standing stereotype that women are prone to "hysteria" means that it's still "common to write us off as crazy, anxious, or stressed," Oller said. This creates a cycle of marginalization. Because these conditions are dismissed, they're often omitted from medical education, so health-care workers don't recognize patients who have them, which fuels further dismissal. "No one's ever heard of POTS at med school," Small told me. (POTS, or postural orthostatic tachycardia syndrome, is a disorder of the autonomic nervous system that is common in long-haulers.) It doesn't help that medicine has become incredibly specialized: Its practitioners might have mastered a single organ system, but are ill-equipped to deal with a syndrome that afflicts the entire body.

Health-care workers were also overburdened well before the pandemic. "People with chronic disease need time to really open up and explain their symptoms," Small told me, and health-care workers might be able to offer them only a few minutes of attention. "Because we work in a stressed system, we don't have the time or mental space for those diagnoses that don't have easy answers," Linn Järte, an anesthetist with long COVID, told me. At worst, the pressure of medicine can sap the clinical curiosity that ought to drive health-care workers to investigate a set of unusual symptoms. Without the time to solve a puzzle, you can quickly lose the inclination to try.

Those puzzles are also extremely challenging. Small remembered talking with patients who had ME and "seeing this multitude of issues that I couldn't even begin to scratch the surface of," she told me. Her frustration, she imagined, must have come across to the patient. Admitting to a patient that you don't have the answer is hard. Admitting it to yourself might be even harder, especially since medical training teaches practitioners to project confidence, even when in doubt. "It's easier to say This is in your head than to say I don't have the expertise to figure this out," the physician associate told me. "Before COVID, I never once said to a patient, 'There's something going on in your body, but I don't know what it is.' It's what I was trained to do, and I feel terrible about it."

Over the courseof the pandemic, waves of frustrated, traumatized, and exhausted health-care workers have quit their jobs. Several long-haulers did so because of the way they were treated. Karen Scott, the ob-gyn, left medicine in April even though she is now well enough to do some work. "Ethically, I couldn't do it anymore," she said. Alexis Misko told me that returning to the profession would feel "traitorous," and besides, she cannot. She hasn't been able to leave her house since December 2020. Other long-haulers have lost their jobs, their homes, or even their lives.

Those who recovered sufficiently to return to work are getting used to wearing two often-conflicting mantles: patient and physician. "We're go-getters who made it to this point in our careers by getting through things at all costs," Hodon Mohamed, an ob-gyn, told me. Even if health-care workers wanted to rest, medical shifts are not conducive to stopping and pacing. Annette Gillaspie, the nurse, still struggles with about 30 symptoms that make bedside nursing impossible; she's back at work, but in a more administrative role. And the physician associate is still working with some of the same colleagues who belittled her symptoms. "There are people whom I don't refer patients to anymore," she told me. "I have a cordial relationship with them, but I won't ever view them the same."

As the pandemic progressed, health-care workers have felt more and more exhausted and demoralized. They've been overwhelmed by work, disaffected with their institutions, and frustrated with patients. These conditions are likely to exacerbate the dismissal that long-haulers have faced. And many health-care workers remain ignorant of long COVID. Meg Hamilton, a long-hauler, a nurse, and (full disclosure) my sister-in-law, told me that most of her co-workers still haven't heard of the condition. Recently, a colleague told her that a patient who was likely a long-hauler couldn't possibly have COVID, because the disease's symptoms don't last past a month. As a recent nursing graduate, Hamilton doesn't always have the seniority to fight such misconceptions, and more and more she lacks the energy to. "Sometimes I won't even tell people that I had long COVID, because I don't want to have to explain," she told me.

Others feel more optimistic, having seen how long COVID has transformed their own practice. Once, they might have rolled their eyes at patients who researched their own condition; now they understand that desperation leads to motivation, and that patients with chronic illnesses can know more than they do. Once, they might have minimized or glossed over unusual symptoms; now they ask more questions and have become more comfortable admitting uncertainty. When Small recently saw a patient who likely has ME/CFS, she spent more than half an hour with him instead of the usual 10 minutes, and scheduled follow-up appointments. "I never would have done that before," she told me. "I would have just been afraid of the whole thing and found it overwhelming." She and others have also been educating their colleagues about long COVID, ME/CFS, POTS, and related illnesses, and some of those colleagues have changed their practice as a result.

"I think those who are transformed by having the illness will be different people-more reflective, more empathetic, and more understanding," Amali Lokugamage, the ob-gyn, told me. For that reason, "long COVID will cause a revolution in medical education," she said. But that future relies on enough medically trained long-haulers being able to work again. It depends on the health-care system's ability to accommodate and retain them. Most of all, it hinges on other health-care professionals' willingness to listen to their long-hauler peers, and respect the expertise that being both physician and patient brings.

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disorder of the autonomic nervous system

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Even Health-Care Workers With Long COVID Are Being Dismissed

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Before she caught COVID-19 at a wedding in March 2020, the physician associate spent her days diagnosing and treating people; after she was infected, she turned to her own colleagues for that same care. "At first," she told me, "I felt a kinship with them."

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https://www.theguardian.com/society/2022/feb/03/long-covid-fight-recognition-gaslighting-pandemic

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efore the coronavirus pandemic swept through New York City like a foaming white storm surge in the spring of 2020 and irrevocably displaced the trajectory of her life, Hannah Davis was an expert in artificial intelligence and machine learning. She gave talks on her projects, which included working with a computer program that generated music from literature, at Ted conferences, technology expos, even the Library of Congress.

Toward the end of March 2020, as the first wave was gathering speed and the number of new cases in the US was inching upward toward 20,000 a day, Davis was living in the Bedford-Stuyvesant neighborhood of Brooklyn - an area that would become one of the hardest-hit communities in the borough. She was stocking up on supplies one final time at a local grocery store before sheltering in place when she believes she got infected with Covid-19.

In the days that followed, Davis, who is 33, experienced a debilitating array of symptoms that only partly matched the symptomatology broadcast by major media outlets and published by health agencies. While she registered a temperature of 100F and felt chills and fatigue, she was also experiencing headaches, tremors and neurological manifestations.

When she traveled to a local emergency room, the doctor seemed to dismiss the non-respiratory symptoms she anxiously detailed, sending her home with a prescription for an albuterol inhaler.

She scheduled a telehealth appointment with a neurologist to address her piercing headaches and the bewildering cognitive issues that were ravaging her productivity, but the physician suggested she was probably just suffering from symptoms of ADHD, which she'd been previously diagnosed with - which she found "really frustrating and concerning".

By 14 April, Davis had been sick for three weeks. By then, Covid-19 had become omnipresent, a second sun around which all our lives now orbited. The version of it Davis was experiencing, however, was completely absent from the sky.

Scouring the web for anything that might validate her experience, she discovered an opinion article in the New York Timeswritten by Fiona Lowenstein, titled We Need to Talk About What Coronavirus Recoveries Look Like. In it, Lowenstein recounted experiencing "fatigue, intense headaches, continued congestion, a sore throat, trouble focusing and short-term memory loss" a month out from her initial infection.

The confusing constellation of symptoms, and the way they waxed, waned and evolved, looked all too familiar to Davis. She joined Lowenstein's online support group for Covid-19 survivors, Body Politic.

Visiting the group, which is hosted on Slack, was like walking into an overcrowded waiting room bustling with frightened patients whose escalating sense of internal crisis mirrored her own. Many were discussing everything the CDC, NIH, NIAID, CNN and Fox were not, including the unreliability of negative PCR tests and the lingering symptoms that were starting to look an awful lot like chronic illness.

Though they had no way of knowing it at the time, members of the Body Politic were among the nation's first "longhaulers" - and their condition was initially met with intense doubt from many. After all, the coronavirus was supposed to be a flu-like virus that subsided in a matter of days, with the worst cases lasting perhaps two weeks.

Suffering from symptoms for longer was to be wading into uncharted territory, one that started evoking questions about stress, psychological health and personal credibility.

n 24 April, Davis found herself on the "research group" channel of the Body Politic. The group was created by Gina Assaf, a technology consultant, and she and others discussed the possibility of putting together a structured survey. "I was very motivated by the idea that, if there was a reason we were still sick, then I could fix it," Assaf said.

Davis, who had experience in data analysis and machine learning, immediately volunteered to help glean the responses. Several other people, including Lisa McCorkell, a policy analyst, Hannah Wei, a product developer with experience in computer science, and Athena Akrami, a neuroscientist at University College London, also offered their respective expertise.

After 12 days, Assaf closed the survey; by then, it had been filled out by 640 members. A deep trove of data now in hand, the fledgling research team went about analyzing it. Though it was never peer-reviewed and only included one traditional research scientist (Akrami), the report nevertheless featured a relatively sizable data set, sophisticated quantitative analysis, and a number of highly legible visualizations illuminating the group's findings.

The report offered a number of stark revelations: for one, it blew open the notion that that illness was limited to the respiratory system. It listed 62 self-reported symptoms, including not only chest tightness, dry cough and elevated temperature but also brain fog, concentration issues, memory loss, dizziness, insomnia and even seizures. Over 90% of the respondents had not yet fully recovered. The group also found that the participants had less than a one-in-five chance of making a recovery by day 50 of their illness.

Illustration: Blake Cale/The Guardian

They wondered whether the report could influence a national conversation tucked snugly inside a familiar binary framework: life on one hand, and death on the other.

The group - which by then had assumed the name Patient-Led Research Collaborative to reflect the history of patient participation in medical research - worked with Lowenstein and the Body Politic to put the report in front of journalists and patient organizations.

On 13 May, two days after the report was released, the prominent journalist and HIV-Aids activist Ann Northrop mentioned it on her podcast, Gay USA. Later that month, the Atlantic science writer Ed Yong interviewed several members of the group for a piece he was putting together on longhaulers. The story, which was published in early June and would eventually be read over a million times, linked to the report and discussed its findings over several paragraphs.

"They absolutely know more about this condition than academics do," Yong told me. "I think they were asking interesting questions, they had a big data set. To this day, this is one of the only groups that has really tried to look at the arc of these symptoms over time."

But Yong also lamented the fact that members of the PLRC and other longhaulers were facing a steep uphill battle in convincing skeptics that their malady was real.

"One of the central things about long Covid is that people are disbelieved," Yong said. "They are told that their symptoms are in their heads, or that they're just suffering from anxiety, that they're going through psychosomatic stuff. It's all the same attitude that people with ME/CFS and other similar illnesses have had to deal with for a long time."

Yong's piece - part of the series that won him a 2021 Pulitzer prize in explanatory reporting - would prove to be a crucial spotlight. "From there, we started getting calls from the CDC and the NIH," Davis recalled. Suddenly, the lines of communication with officials at America's foremost health agencies were wide open, and the PLRC's data ultimately "informed a lot of the early CDC documentation on post-Covid sequelae", Davis said.

When I spoke to Jennifer Chevinsky, an epidemic intelligence service officer with the CDC, she confirmed that her team consulted the PLRC while writing the interim guidance for post-Covid conditions. "Their work was used to better understand illness in patients that were younger and previously in good health," she said.

In early September 2020, the NIH's director, Francis Collins, dedicated an entire blogpost to the "citizen scientists" of the PLRC who had published what he called the "first detailed patient survey" investigating long Covid.

By the end of that summer, McCorkell recalled, they had "seats at tables that we previously did not have".

n April 2021, the UK's Office for National Statistics put out data showing that over a million citizens were experiencing long Covid. And most of these cases were not mild, either. The report notes that "an estimated 674,000 people reported that their symptoms have negatively impacted on their ability to undertake their day-to-day activities".

Those are astonishing figures for a country whose population is slightly more than one-fifth of America's, offering a sharp counterpoint to the notion that the vast majority of individuals make full, expedient recoveries from their bouts with the virus.

(While it's too early to tell whether the Omicron variant triggers long Covid in numbers equal to those of its predecessors, it's all but certain that the total number of longhaulers will increase after the surge has subsided.)

Discrediting uncommon conditions is hardly a phenomenon novel to the age of Covid. Multiple sclerosis has been around for hundreds of years - descriptions of the illness date back to the 14th century - and scientific research into it started at least as early as the 1860s, when Jean-Martin Charcot, who would come to be known as the father of neurology, first described " la sclérose en plaques " - sclerotic plaques, or lesions, in the brain and spinal cord.

Nevertheless, for a century following Charcot's revelations, women presenting with the classic symptoms of MS were often diagnosed with hysteria instead. Though MS is now estimated to be up to four times more prevalent among women than men, by the middle of the 20th century it was still being diagnosed equally among both genders. But while doctors were diagnosing men with a neurological disease in which the body's own immune system attacks myelin (the protective sheath wrapped around nerve fibers), most of the women presenting with the same symptoms were understood to be suffering from a psychological malady that was somaticizing into a host of physical ills.

It was a double-standard that flourished, at least in part, because the people who stood to lose the most from it had been stripped of their believability. They were, after all, deemed by their own physicians to be crazy.

More recently, those suffering from myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS - a condition I myself live with - have been subjected to similar misdiagnosing and psychologizing.

Illustration: Blake Cale/The Guardian

The illness, despite thousands of scientific papers attesting to the biological validity of the condition, remains a Gordian knot for which no conclusive diagnostic markers exist. When it cropped up in the hundreds in several small communities in Lake Tahoe in the 1980s, it was widely mocked and summarily dismissed by the local media. For years, the mysterious, polarizing "Tahoe flu" was regarded by many doctors with cagey skepticism at best; at worst, they were convinced something bizarre and even untoward had happened in the Sierra Nevada Mountains, perhaps a modern episode of mass hysteria.

"Young doctors in the 1980s were often advised by senior physicians not to become associated with an illness that didn't yet have a scientific explanation, because their efforts to try to help their patients could be viewed by others doctors as quackery," said Anthony Komaroff, a professor of medicine at Harvard Medical School and one of the foremost experts on ME/CFS.

According to Komaroff, "there is no longer a basis for being skeptical about whether there are underlying biological abnormalities in ME/CFS". Those who remain wary of the illness, he believes, "simply have not read the published scientific literature on the subject".

Though the chapter largely faded into obscurity, it left an air of dubiousness wreathed around ME/CFS for decades: here was a condition with a strange, vaguely off-putting history, a phalanx of detractors, and patients whose credibility had been repeatedly called into question. Perhaps, many doctors seemed to conclude in the 1990s and 2000s, the best way to think about such a quagmire of a condition was to not think about it all - to steer clear of diagnosing it, and generally avoid the burden and stickiness of acknowledging its existence at all.

The way physicians discuss relatively unknown, unestablished conditions can quickly become dyed into the wool, codified among general practitioners and specialists and understood as red flags delineating what conditions might not actually be biological illnesses at all - and therefore best avoided or referred to a psychiatrist.

When presented with a condition they know little about or, worse, a cluster of symptoms they've never encountered before, many doctors have historically done one of two things. Either they've psychologized the malady, attributing it to a psychiatric cause - hysteria, conversion disorder, somatization - or they've assured the patient that there's nothing actually wrong with them, and they just need to relax and rest.

"A real thing that happens in medicine a lot of times is that when we don't understand something," said David Lee, an ER physician at NYU, "we just try to explain it away rather than accept that, 'Hey, maybe we just don't understand this.'"

Or, as Harvard pulmonary physician Jason Maley put it, "I think that there's definitely a risk, if there isn't a rigorous description of a condition, for people to assume it's not real, or it's anxiety, or it's not a big deal."

The term now routinely employed to describe this phenomenon is gaslighting. Physicians hold a great deal of authority in a society with a predominantly reverential stance toward them. In part because of their status, acquiescing to the limits of their knowledge is not a practice that comes naturally to most doctors. By telling patients that the physical symptoms they're experiencing are conversions of their psychological ills, clinicians are effectively releasing themselves of their obligation to treat conditions with complicated etiologies. Instead, they're passing the buck back on to the sufferer.

That such a maneuver is destructive to the patient practically goes without saying. When a person is told that her pain, fatigue, visual disturbances or cognitive dysfunction is a manifestation of psychological illness, she is forced into a position of confusion, vulnerability and self-recrimination. "It causes trauma," Davis said. "It causes medical PTSD."

After all, when patients are told that their symptoms either don't exist or are all just the florid projections of a delusional mind, what are they supposed to do with that information? Referrals to psychiatrists notwithstanding, the practice creates a clinical dead-end, leaving patients with no coherent treatment plan and zero actionable steps to take toward their own recovery. It's not just that a psychosomatic diagnosis is offensive to many people because of its troubled history and dismissive implications; it also discards them into medicine's wastebasket.

The downstream effects of medical gaslighting mean that legitimate biological diseases are marginalized, to the point where clinicians become wary of taking them too seriously for fear that the aura of skepticism that plagues the condition will come to stain them, too. It can take decades for sufferers to slough off the stigma - the effluvium of doubt, the condescension and contempt, the faint but unmistakable intimations of madness.

his past August, I spent several days visiting Davis at her home in Brooklyn, in the borough's industrial Gowanus neighborhood. Aside from two trips a week to grab groceries and run errands, daily walks, and the occasional get-together with a friend, Davis rarely leaves the two-bedroom apartment she shares with her partner, Myk Bilokonsky. The entrance, framed by two black bookcases lined with copies of authors ranging from Dostoyevsky and Joyce to Philip K Dick and Neil Gaiman, led into a modestly sized living room where tabletops were cluttered, variously, with plants, supplements, orange prescription bottles and the odd Rider Tarot deck.

A thin, unaffected smile penciled over her fair-complexioned face, Davis greeted me in what I assumed were her pyjamas - she was barefoot, wearing a graphic tee and baggy cotton pants. It was an outfit she would wear different iterations of each day I visited her. Though a few symptoms had abated over the previous year, Davis was still grappling with debilitating cognitive dysfunction, memory loss, low-grade fever, and postural orthostatic tachycardia syndrome, a condition that causes a person's heart rate to spike when they stand up or walk around.

Nearly a year and a half had passed since she first developed symptoms from the coronavirus, but she was nowhere closer to returning to her fulfilling career. "I miss it," Davis said. "I haven't admitted to myself that it's over."

Although Davis is not paid in her capacity as one of the co-leads and co-founders of the PLRC, the position is, for all intents and purposes, her full-time job (to pay her bills, she relies on Bilokonsky, a computer programmer, and a few small stipends from her research work with other organizations). She and other members of the team have started publishing research in academic journals with increasing regularity - including a recent collaboration with the National Covid Cohort Collaborative - and are continuing to pursue projects that will progress through the traditional peer-review process.

In addition to the data analysis she carries out for these research papers, Davis participates in several Zoom calls every single day. In the short time I visited her, she had calls with the American Academy of Physical Medicine and Rehabilitation; the World Health Organization; the Department of Health and Human Services; and the Council for Medical Specialty Societies, among others.

Even though long Covid has stripped her of so much of her sharpness, energy and intellectual vibrancy, she quietly remains dedicated to furthering research on her condition.

"I am walking around with a lot of grief," Bilokonsky said during one afternoon conversation over mugs of black coffee. "I fundamentally see her as having lost a lot of her irreplaceable value, and that meant a lot to her. I see that her ongoing health problems are not resolving, and are possibly in some cases getting worse. And the result is that I'm trying to do my best in what I consider to be a pretty horrific situation."

The past year of research forms a picture of a condition that's wreaking havoc on people's functionality - think exhausted and enfeebled, housebound and sometimes bedbound - far away from the overburdened hospitals and jammed intensive care units that absorb so much media attention.

But go online, and you will be witness to a theater of commiseration. One subreddit, r/covidlonghaulers, includes more than 23,000 members, many of whom appear to be living with families and social networks who meet their plight with emaciated smiles and flittering eyes, betraying bewilderment at why they can't simply move on with their lives (as though chronic illness were a self-destructive act of volition).

Others are sucked into the convolutions of the healthcare system, an unforgiving labyrinth of debt, dead-ends and doubt. As one user writes, "I've seen rheumatology and endocrinology with no answers. My PCP just recommends the ER for psych evals, he thinks it's all mental." On Facebook, meanwhile, the support groups are too numerous to count, and collectively feature hundreds if not thousands of new posts every day.

In March 2021, Davis co-wrote an opinion piece with Fiona Lowenstein for the New York Times. "Long Covid is not a footnote to the pandemic or a curious human-interest story," they declared, but rather "could be one of the largest mass disabling events in modern history".

In December of last year, the PLRC put out a second study on long Covid on the site medRxiv, which makes unpublished academic research available to the public (known as "preprint", the paper would later go through the full peer-review process and be formally published in the Lancet's open access clinical journal).

The second paper is larger, deeper and more rigorous in almost every way. It analyzes survey responses from more than 3,700 participants representing 56 different countries. The PLRC paper does not purport to demonstrate that Covid-19 evolves into long Covid in a specific percentage of cases; it instead analyzes the insidious sprawl of sequelae associated with long Covid. Describing more than 200 symptoms affecting 10 organ systems, the paper serves as a floor-to-ceiling window into what it actually means to be living with the amorphous syndrome.

Two months after its publication, in February Frances Collins, NIH director, directly referenced the study in an announcement that Congress had approved $1.15bn in funding for research "into the prolonged health consequences of SARS-CoV-2 infection".

espite the spate of new studies and grim boom of support groups, there remains a contingent of Americans highly dubious of the condition. In an opinion piece for the Wall Street Journal published in March of 2021, psychiatrist Jeremy Devine argued that the symptoms of long Covid can be "psychologically generated or caused by a physical illness unrelated to the prior infection".

The condition, he alleged, "is largely an invention of vocal patient activist groups. Legitimizing it with generous funding risks worsening the symptoms the NIH is hoping to treat."

Another opinion article, published in the New York Times in August and co-authored by physicians affiliated with Harvard Medical School and Johns Hopkins School of Medicine, respectively, assumed a similarly critical - though slightly more nuanced - stance. "Long Covid has come to mean different things in different contexts and to different people," they wrote. "Psychosocial strain could be one contributing factor, particularly in light of the sharp increase in psychological distress amid the tragedy of the pandemic."

While Devine is ascribing something almost conspiratorial to the PLRC and the Body Politic, suggesting that they're beguiling followers by offering an "attractive alternative" to the mental health issues they're actually facing, Adam Gaffney and Zachary Berger, who authored the Times article, construe long Covid as more of a conflation of multiple psychological and physical ills. In both cases, though, we see the latest permutations of a longstanding insistence that complex biological syndromes are partially or completely "psychosomatic-symptom disorders", as Devine put it.

Yochai Re'em, a psychiatry resident at New York-Presbyterian hospital, says that "part of the urge to reject the notion that there is something called long Covid comes from the fact that many of the patients either are untested, or tested negative, and as a result there's no objective sign that they actually experienced a Covid illness". But, he added, the consistency in the symptom presentation of long Covid makes a psychosomatic diagnosis unlikely.

"There are situations where people have some type of unresolved psychological conflict that then presents with physical symptoms. But usually that is such a unique individual process, and there aren't unifying themes when a whole group of people presents that way. In other words, all the patients would present with symptoms that are very different. But in long Covid, there are common themes."

The PLRC itself has faced scathing skepticism. After the organization put out its second paper, a small but highly vocal group of detractors emerged almost immediately.

After a link to the paper was approvingly retweeted by Eric Topol, a renowned cardiologist and the founder of the Scripps Research Translational Institute, several prominent medical personages voiced more disparaging views. Francois Balloux, a geneticist at University College London, tweeted that the preprint was "Mickey Mouse science at best", presumably a shot - at least in part - at the fact that most of the co-authors were relatively young and unaffiliated with major research institutions (his tweet was later deleted).

Gaffney, who more recently co-wrote the New York Times opinion piece, declared, "the 'long Covid' narrative needs revision, rapidly," while questioning the fact that the majority of the study participants had either a negative PCR test or had never taken a test at all. Of the 3,762 participants, 2,742, or 70%, never received a positive test, a phenomenon that could be explained by the lack of testing availability and the prevalence of false negatives ranging from 1 to 30% in early 2020. (The paper demonstrated that there was no significant difference in symptoms between those who tested positive and those who tested negative or were not tested at all.)

The first few detractors might have been more focused on the research methodology, but what succeeded them were anonymous attacks from agitators perturbed by the existence of an unabashedly vocal research group constituted entirely of female longhaulers.

"It was just a shitshow for I don't even remember how long," Davis said. At one point, Davis received a dyspeptic, borderline deranged email divulging personal information about her - including her middle name - that she'd never put online. "There is nothing more obvious than the fact that you have Munchausen syndrome," the message read. "Your symptoms are made up and are mentally ill derived! If you don't stop this behavior in a very reasonable amount of time then I'm going to have you committed to a mental institution."

Others were drawn to invoking irrepressible old tropes about the chronically ill, including accusing Davis and the PLRC of seeking to profit from a fictitious condition. "Long Covid is a scam just like Lyme, chronic fatigue, adrenal fatigue," one tweet read. "Grifters are pushing this and millions of dollars will be made."

During the demoralizing weeks-long conflagration, Davis and her colleagues learned that there are people who were angry, even personally offended that they were sick - a kind of medical gaslighting by way of internet mob mentality.

It's difficult to say what advantages a culture of illness denialism provides to society at large - perhaps the obfuscation of vexing truths that complicate the borders between what Susan Sontag famously termed the kingdom of the well and the kingdom of the sick.

The PLRC, though, has aspired to serve as a forceful corrective to this enduring impulse. Helen Burstin, the CEO of an organization that represents 45 physician groups comprising more than 800,000 doctors across the US, said that without them, "we would have not learned as much about the symptomatology of long Covid as soon".

Ziyad Al-Aly, an epidemiologist at the VA studying long Covid, is more forthright. "When the history of medicine is going to write about this pandemic," he said, "they're going to be seen as really an essential piece that galvanized awareness that long Covid exists."

n a Wednesday morning in August, I met Davis at her apartment to listen in on a Zoom call she was having with Zero Covid Thailand. The small organization had seen PLRC's research and was working on raising awareness about long Covid in its own country, which had scarcely acknowledged the condition.

"Your paper is very famous," a young man who introduced himself as Lin told her. "We really, really appreciate the amount of work that you and PLRC and Body Politic have put into making, not just long Covid, but the patient perspective on long Covid heard."

It occurred to me that there was a chance the PLRC's paper was the only published research on long Covid that they'd been exposed to at all. In Thailand, they told Davis, all the focus was on keeping the infection numbers low and battling mortality. Morbidity was rarely if ever addressed. As barbed and contentious a subject as long Covid could be in the United States, in other parts of the world its level of recognition was absolutely nil.

A young woman whose Zoom screen read "Benz" spoke up. She'd gotten Covid about a month ago, had rested during a two-week self-quarantine, but was finding herself struggling to return to full strength.

"I realized my recovery is not the same as getting the flu and recovering," she said. A longtime practitioner of Ashtanga yoga, she now felt depleted and dazed after just 30 minutes of training. "It's like I lost four years of practice," she observed. "I really think this is kind of like a long Covid-ish situation for me, but I don't know how to deal with it yet."

The expression on Davis's face shifted, just slightly, her brows furrowing and her gaze long and full as she considered the prospect of another person becoming disabled by the condition that had so dramatically truncated the bandwidth of her own life. She told Benz to practice pacing herself as often as she could, not force herself to exercise if her body was responding poorly to it, and join Body Politic as soon as she was able to.

"I feel like I've been sick long enough where it's very hard to hear," she told me after the call. "I think it needs to get to a point where it's recognizable by people, and people aren't suffering in the dark like this."

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The great gaslighting: how Covid longhaulers are still fighting for recognition

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efore the coronavirus pandemic swept through New York City like a foaming white storm surge in the spring of 2020 and irrevocably displaced the trajectory of her life, Hannah Davis was an expert in artificial intelligence and machine learning.

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Or instead, Floating Through Space by Sia

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There is a need for patient voices and need for understanding.

1 - Medical gaslighting

Medical gaslighting is being discredited and not being believed in your personal experience or the experience of your child, the medical professional avoids the discussion of a conclusion

Often the clinicians believes there is a psychological problem but aren't forthcoming with this and will leave it with “medically unexplained symptoms”

Medical professionals will be intentionally ambiguous to avoid conflict

2- What are the experiences of different groups? Is gaslighting for all?

There are social categories people belong to or are perceived to belong to: race, gender identity, age, disability, etc.

Pervasive systemic and institutional bias exist

There is a “double risk of stigma”:  one for long COVID, and the other is belonging to stigmatised social groups - there are layers to stigma and gaslighting

Stigmatisation results in two things: individuals not seeking help due to negative past experiences and individuals not being investigated/taken seriously if they do seek help due to the bias

It is important to recognize there is privilege - tangible (money, social networking), and intangible (social positionality)

3- Clinician experience and Patient experience

- Clinician experience

The healthcare professionals are not always acting in malice

There is an importance of training medical professionals with the background and knowledge of how different social groups are impacted and at risk to create a better understanding and an ability to recognize differing risks and possible outcomes

Understanding that certain signs of illness are not easily recognized, and different professionals have different familiarities with certain communities and recognizing signs of illness in those different communities

The clinician response can be influenced by workplace social norms

- Patient experience

Persons living with Long COVID can lose their ability to trust their own body and so the comments/advice of others is more intensely impactful and patients are more vulnerable

Important to recognize the high degree of vulnerability of the patient, also recognizing that everyone has different backgrounds and different experiences that they bring to the clinical context

Can walk away with a sense of confusion and self-doubt

4- Social identity processes

COVID, and Long COVID can change identity, professional identity, credibility in identity, physical identity (eg. as an athlete)

Fatigue, malaise are common symptoms and pacing as a management strategy can be socially isolating

5 - Post-breakout room summaries

How do we recognize gaslighting?

Patient are often hurt, angered, and traumatised and can lose trust in the healthcare system, providers, and themselves

Gaslighting can be obvious and subtle

Often the onus is put on the patient: Eg. “YOU need to be healthier and exercise, YOU need to work on resting and eating better”

Realisation of gaslighting often comes afterward

Patients begin to doubt and belittle their own symptoms, gaslighting themselves after the experience they had

There is an emphasis on reassurance and discharge, use of a “cookbook” to convince the patient that they are fine

Emotions are misinterpreted as psychological dysfunction or disorder

Patient is labelled as non compliant

Are there strategies we can use to address it? What’s the most productive response?

Ask questions

Get a second opinion

Bring in research papers

Get things in writing, for cognitive ease and for documentation purposes

Repeat calmly and politely the same thing until it is heard

Reshifting the power dynamic in the medical profession

Coaching and training for medical professionals about empathetic approaches to patients

Citing recent and relevant research on Long COVID, eg. today’s discussion by Dr. David Putrino regarding clinical diagnosis being a good predictor of Long-COVID, patient report is enough

There is power in community

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I want a list of all the songs that have been played, please! YouTube preferred, Spotify okay. But I don't want to lose the songs that were new to me

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Difficult Doctors and Difficult Patients. JACR https://pubmed.ncbi.nlm.nih.gov/27888946/

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·         Having someone come with you to appointments – an ally to help neutralize the threat

·         Getting a second opinion

·         Bringing in information/research papers to appointments to back up your points

·         “I have found that the less I say the kinder the HCP is, they don’t want to hear any thoughts or knowledge sharing which makes me feel alienated from my own care path.”

·         repeat calmly and politely same thing over and over

·         Larger picture is there needs to be a change to the power relationship between HCP and patient; need more empathetic training/health coaching in medical filed

·         Ask GP/specialist -  Why won’t you do that test/prescribe that med?

·         Get things in writing/communicate in writing

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Discussion on gaslighting (breakout room)

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Discussion on gaslighting (breakout room)

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·         challenge is approaching colleagues who are gaslighting and are totally unaware of it thinking they are fully validating a patient/colleague

·         it is hard to recognize it in the moment – realizing comes after

·         Cognitive impairment can affect ability to communicate and this can affect ability to be heard -especially when there are time constraints to appointments

·         medical profession gaslights without even realizing it – emphasis on reassuring and discharging; GP have a duty to get patients to accept there is nothing wrong – they aren’t meaning to, but it’s embedded

·         embedded in medical training – “there is a cookbook for how to dismiss patients”; “the patient who won’t behave” – an actual workshop title

·         Doctors want to apply Occam’s razor – the simplest explanation is the best

·         Red flags (in terms of medical professionals trying to label this as fabrication) – homeschooling, understanding medical terminology

·         How emotions are misinterpreted as depression – crying does not equal anxiety/depression

·         Being gaslit then makes it difficult to trust anyone in the future.

·         Often seen as “non-compliant”

·         Due to PEM/PESE and episodic nature of Long Covid, often you show up “well” to appointments, but then its because you rested before and then after “ you look good”

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One thing that has helped me is thinking of rest as a meaningful activity because it is....society just wants you to think that it is not!

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Chat box:

is it known how to prevent Long Covid during or after a Covid-19 infection?

Discussion around professional boundaries and experiences of encountering doctors whos specialty is not in psychology and diagnosis of anxiety/parental mental health/other psychological disorders being the root of symptoms

“Be gentle with yourself.” and “rest as medicine” were my mantras, and what I press into family and friends while they are dealing with infections.”

Are there any known Connections between long covid and connective tissue disorders in children?

Psychiatric relation to neuroinflammation

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In this Discussion session chaired by Dr Jennifer Audette, Long COVID in Children and Young People will be discussed by Sammie Mcfarland, Kirsty Stanley, Dr Binita Kane, Dr Alison Twycross, Sarah Walker, Dr Eleni Iasonidou and Cara Kaup.

Some people believe that kids can’t get long covid - but they can!

#How is long covid manifesting in children and young people?

Over 200 wide ranging symptoms; fatigue, brain fog, mood swings, belly ache, rashes, nerve pain, headache, auditory changes e.g. sensitivity to sound, seizures and fainting etc. However, it is often difficult for young people to communicate these symptoms and their needs identified particularly in younger children. There is a need to look out for other signs including failing at school, reduced play, mood swings and regression in development e.g. reverting to 🤬 shuffling. Discussion around the importance of caregivers and families to identify, accept and validate these symptoms. Be mindful of other comorbidities that may need to be managed alongside these symptoms. Think ANY new symptom after infection could be an indicator for long covid!

We have been able to learn from ME/CFS communities and apply similar principles in the management of Long Covid. We need to avoid re-inventing the wheel using strategies which have not been successful in the management of ME/CFS. We need to learn how to ask questions to help children identify symptoms and adapt treatment for example, considering how pacing as adults is hard and even harder for children. There has been no research into the social implications of children living with Long Covid, how children’s dependence on parents can impact their independent learning, peer relationships and social attainment. The lack of children’s control over what they do should also be considered when listening to what they are saying and the need to embrace the expertise of people with lived experience. Approaches need to be flexible and adaptable as we learn from the whole multidisciplinary team.

#What are the best medical treatments or rehab interventions to minimise the effects?

We need to consider a biopsychosocial model of care and multidisciplinary approach to include communication that is open to understand what is and isn’t working. The discussion provided examples of strategies to use in sessions with children e.g. helping them refind their voices to initiate movement, adapt treatment to ensure the child feels heard and help them understand their body. The panel also discussed recommendations for a precautionary approach to recovery, including allowing for additional sleep (as long as it does not impact night time sleep and pacing activity), equipment provision, avoiding graded exercise and supporting sensory overload. Some of these approaches, such as pacing activity, may need to be implemented over a longer period of time. The panel also highlighted the need for clear screening processes and addressing underlying medical causes by treating the treatable on an individual basis. Just because a test is normal doesn’t mean there is no pathology. Other considerations should include the validation of children’s symptoms or diagnosis and the need to help support the family to educate teachers and coaches. We need to better understand the impact Long Covid has on socialisation and how we can help children and young people living with Long Covid to participate.

#What are issues related to mental health in children living with long covid?

Children living with long covid may have lost that sense of identity which needs to be noted and heard to enable them to feel safe. We need to be asking these children how are you? What are you feeling right now at this moment? How can we help you? We need to be mindful to use appropriate language, take a holistic approach and consider a child’s experience of gas lighting during appointments. Consideration also needs to be made for the mental health of parents and wider family units, sign post those to services, check in so they feel heard and seen and avoid telling parents how their anxiety is causing symptoms in children. The panel also highlighted how physical symptoms should still be considered in addition to mental health changes and must not be ignored having associated Long Covid symptoms to mental health. Psychological support is important but should be part of a holistic service rather than solely the cure for symptoms.

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I have relied on peer support throughout my Long COVID journey and at times when I have been unsure if it was gaslighting or not or even when I gaslight myself.

It is my Long COVID friends who understand and talk it through with me and valdiate my experience.

I also experience gaslighting from friends/colleagues sometimes, unfortunately it is everywhere!

How do you all cope/manage gaslighting?

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Breakout Workshop 2: Thinking about returning to work

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Breakout Workshop 2: Thinking about returning to work

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Q5. What is the next step you can take towards your new goal?

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https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full

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Breakout Workshop 2: Thinking about returning to work 

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Breakout Workshop 2: Thinking about returning to work 

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Q4. What thoughts have come up for you from this discussion about what or how else you could build up your post / with Covid employability / purpose?

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Breakout Workshop 2: Thinking about returning to work 

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Breakout Workshop 2: Thinking about returning to work 

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Q3. Who else is or could be supporting your efforts to return?

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Breakout Workshop 2: Thinking about returning to work 

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Breakout Workshop 2: Thinking about returning to work 

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Q2. Have you encountered ableism / discrimination? In what way?

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Breakout Workshop 2: Thinking about returning to work 

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Breakout Workshop 2: Thinking about returning to work 

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We all face multiple barriers purely by being 'unwell' in any way, as a less than 'ideal' worker.
Q1. What is/are the biggest barrier(s) for you?

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https://longcovidwork.co.uk/resources/

The Long Covid work team are an offshoot of Long Covid Support and have been lobbying, and developing resources with a range of multi-disciplinary partners, relevant to returning to, staying in or leaving work well.

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For specific guidance please select the relevant button, or see the general resources below:
General Resources

Advice for NHS Employees being migrated to 'standard' sickness absence management procedures following Covid sick pay (Clare, Jenny and Alison Twycross from Long Covid Nurses and Midwives UK

https://acrobat.adobe.com/link/review?uri=urn:aaid:scds:US:9c6a8143-386d-3b52-b7a8-6d4615d6eb2c

Long COVID and Return to Work- What Works? A position Paper from The Society Of Occupational Medicine August 2022 (Clare and Lesley)

Society of Occupational Medicine - Guide for Managers (Clare and Lesley)
https://www.som.org.uk/sites/som.org.uk/files/Long_COVID_and_Return_to_Work_What_Works.pdf

https://www.som.org.uk/covid-19-return-work-guide-managers

Return to Work Podcast with Dr Jenny Ceolta Smith, Jasmine Yule and Darren Brown from Long Covid Physio

Long Covid and Work Podcasts with Professor Cathy Bulley at Queen Margaret University - Jenny Ceolta-Smith and Kirsty Stanley https://www.qmu.ac.uk/research-and-knowledge-exchange/qmu-research/covid-19/support-after-covid-19/support-after-covid-study-podcast-series/

Thousands Losing Jobs - Independent Article

The Aftermath of Leaving Work-
Jenny via The Long Covid Podcast https://www.buzzsprout.com/1835170/10158797

Return to work after long COVID: Evidence at 8th March 2021
Prepared for The Health and Safety Executive https://www.hse.gov.uk/research/assets/docs/return-to-work-after-long-covid.pdf

CIPD Working with Long Covid-Research Evidence to inform support
Lesley, Kirsty and Jenny.
https://www.cipd.co.uk/Images/long-covid-report-feb-22_tcm18-106089.pdf

CIPD Working with Long Covid-Guidance to provide support
https://www.cipd.co.uk/knowledge/fundamentals/relations/absence/long-covid-guides#gref

Sustainable return to nursing with Long Covid, advice from the experts
Podcast Clare and Kirsty EBN
https://soundcloud.com/bmjpodcasts/long-covid-return-to-work-with-dr-clare-rayner-and-kirsty-stanley?in=bmjpodcasts/sets/ebn-podcast

Chronic Illness Inclusion https://chronicillnessinclusion.org.uk/2021/05/05/i-already-have-a-job-getting-through-the-day/
"I already have a job"

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For specific guidance please select the relevant button, or see the general resources below: Guidance for Employees Guidance for Employers Guidance for Trade Unions Guidance for Health and Social Care Professionals Guidance on Benefits General Resources ResourceWeb LinkLong Covid Work Group OutputsAdvice for NHS Employees being migrated to 'standard' sickness absence management procedures following Covid...

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“Rise up” by Andra Day

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long covid in kids and connective tissue disorder

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long covid in kids and connective tissue disorder

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many kids specially nearing teens with long covid have undiagnosed hypermobility EDS Marfans, covid made things worse for them but no one connected the dots to connective tissue disorders, treating many such kids.

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long covid in kids and ruling out connective tissue disorders

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long covid in kids and ruling out connective tissue disorders

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marfans hypermobility EDS very much seen in kids almost entering teens with long covid. they are more affected, but never knew they had connective tissues disorders, treating many children sadly no one connected the dots

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After listening to this great session yesterday, I wanted to add to the conversation.  I see many issues with POTS, orthostatic intolerance and dysautonomia with vestibular issues.  I consider the gravitational plane I am working in when looking at overall tolerance.  It does take a lot for the vascular system to adapt to prone vs upright and the vestibular system helps pre-load the vascular changes.
Does anyone else look at position to gravity when pacing?  Should we look at # of transitions, time spent in the position, and overall effort?

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A clinical case definition of post COVID-19 condition by a Delphi consensus, 6 October 2021

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Publicaciones de la Organización Mundial de la Salud

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That’s How You Change The World – Newsboys

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That’s How You Change The World – Newsboys

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https://www.youtube.com/watch?v=WtkTXBTTcAw

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Newsboys - That's How You Change The World

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https://www.youtube.com/watch?v=tR-qQcNT_fY

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Five for Fighting - 100 Years: Music Video

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How do we learn more about or participate (as patients) in the interventional treatment clinics Dr. Putrino discussed at the end?

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Panelists highlighting the critical importance of involvement of persons living with Long COVID in all aspects of the research in order to ensure the research is meaningful and has maximal impact with the community.
Given the episodic nature of Long COVID - rehabilitation needs to consider the relapsing and remitting nature of Long COVID and the importance of ensuring safe approaches to rehab - i.e. PEM; POTS; dysautonomia; there is not a one-size fits all approach; needs to be individualized.
Participants in research should be carefully screened for PEM in order to ensure safe approaches to research, and rehabilitation .
- Measurement is critical
- Knowledge translation & communication of research findings - critical to ensure uptake of findings; Long COVID community is well positioned as the leaders in knowledge translation of research
-importance to continually innovate in research.
-with rigor can sometimes come rigidity in research - important to embrace innovation.
Importance of drawing from and applying literature from other post-viral illnesses - learning from others.

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What do you think the research priorities should be?

I also feel that it is incredibly frustrating that we are having to wait so long for research and clinical trials i.e. RCTs. I understand that that is how it usually works but when we are all so unwell and it is having such a devastating functional impact, can't the research be expedited as it was for acute covid?

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Elaine Maxwell Trustee Long Covid Support, and Visiting Professor London South Bank University, UK presented on the research landscape of Long COVID.

1 - Definition of Long COVID - clarity and consistency is important in research.  Differences in definition resulting in varying data on prevalence, varying inclusion criteria for participants in Long COVID Research.

Research has tried to identify phenotypes of Long COVID to help guide approaches to treatment.

2 - Causal Mechanisms of Long COVID - umbrella term to classify a multi-systemic condition. Need to look at the inter-relationships between the systems; and how they interact. Research is aiming to identify biomarkers of Long COVID.

Important to highlight similarities with other conditions, but also recognizing aspects that may be unique to Long COVID.

Uncertainty of causation and definitions

3 - Clinical Trials - designing RCTs are a challenge without clarity of definition or understanding of causation.   Currently important to identify areas where there are some current evidence for treatment (e.g. chronic pain).

IMpact of episodic nature of disability for Long COVID - and impact on rehabilitation and return to work.

Achievements in Research - surveillance symptoms, emerging evidence on phenotypes, promising propositions on causal mechanisms.

Gaps in Research - evidence on symptom management; integration of findings from different body systems / phenotypes; detailed risk factors and prevention; understanding the relationship to pre-existing long term conditions.

Future Research -identify different phenotypes in all research; establish biomarkers for each phenotypes; balance help with symptoms now and search for a cure; sentinel audits; platform style trials; complex intervention studies.

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Individuals are sharing their agreement with the importance of coordinated care that involves cross-team communication, individuals shared experiences where HCPs have ended care due to lack of success with their narrow approach, one person asked about looking into the correlation between symptoms and strain/variant the patient was exposed to

Chat questions: What about exacerbation of existing chronic illness? It seems that particularly in older people a covid infection can cause worsening of previous conditions

What about unmasking underlying conditions? My docs think I had undiagnosed dysautonomia and MCAS prior to COVID, and COVID just exploded the severity.

Has anyone thought of doing a correlation between symptoms and the strain/variant the patient had?

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Great tips and idea on how to deal with not being believed by a clinician if you are unable to find someone else.
Ask them what else it could be and what they have done to rule it out. Great advice!

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Dr David Putrino presents latest research findings on mechanisms and causes of Long COVID to guide safe rehabilitation interventions.

What we currently know about long covid from pathological standpoint

How we can build that into better care plans and research

How this all fits into the universe of complex chronic illness that we’re collectively learning about together

A) Focus on being a better clinician- understanding what you are diagnosing as per the outlines of Post COVID syndrome(PASC).

Umbrella of symptom sequalae post COVID- explicit organ damage that can be found after that can be treated and meets criteria. But also some experience different persistent symptoms that don’t fit in these boxes. Post viral autoimmunity/dysautonomia/ME that don’t show up on conventional testing.

Comorbidities can cause new and worsening of symptoms Post COVID, and can still be classed as Long COVID rather than a consequence. Having a past history of comorbidity should not mean a symptom written off.

Measure symptoms like fatigue eg fatigue severity scale, EQ5D scales etc.  Urged to use objective scales can make a difference to insurance or disability coverage being approved or declined. Will show progress and justify treatment.

Treat outside the box- complex chronic illness approaches to treatment is different- stay up to date with research; multiple aspects of patients physiological presentations (boat and 10 anchors analogy), so need a more holistic approach.

Pathology of Long COVID- diagnostic bio markers and treatment targets for Long COVID

B) Research discussed: Method- 3 groups: LC/Convalescent COVID/COVID naive- detailed symptoms measured, immune profiling and modelling

Findings: 1) classify and differentiate those with LC/not LC based on symptoms; 2) elevated proportion of activated T cells *(CD4 and CD8) in those with LC so immune system activated and fighting something; 3) In those with LC reactivation of different viruses eg EBV/Herpes. 4) reduced morning cortisol in those with LC; 5) Based on all lab tests can with 96% accuracy can classify LC or not LC based on all the tests. 6) Symptom score and lab tests had ‘near perfect agreement’ agreed between two different ways of classifying LC. Symptoms and tests matched up.

“Believe your patients” as the symptoms match the lab tests. Clinical diagnosis is enough.

C) Research to come: better characterisation of symptoms; eg “Fatigue has different forms and qualities”, can’t separate them out currently as may be linked to different underlying causes and therefore treatments.

Understand other complex chronic illnesses and add them into the mix and see variations/similarities eg Lyme/MS/ME/CFS/PANS/PANDA

Rapid Interventional Clinical trials needed and funding approved to start LCRI Trials group.

Question: what if not believed? List symptoms and ask about differential diagnosis and what has been ruled out so far when you speak with a healthcare provider to get actionable screening and intervention.

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I love the anchors idea and it really resonated when he said that people with Long Covid are being weighed down by 8-10 it certainly feels that way!

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Wonderfully succinct and clinically applicable presentation. Thank you and colleagues all over the world for your persistence and collaboration. UVA Health is happy to help and partner in any way. (I'll ask UVA Health for permission later :) )

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Chair of Long COVID Physio, Darren Brown, opens the day highlighting the purpose of the Long-COVID forum, which is creating a place to share lived experience and knowledge with the ultimate goals of connecting and creating change. Individuals were invited and encouraged to join the conversation through the zoom chat box and here on Padlet. The forum is using technology to track social media involvement using #LCPforum. Everyone involved is working towards creating a sense of belonging by making an accessible and  inclusive space to connect and create change. Examples of this include the creation of scholarships to support individuals from low/medium income countries being here today. To close off today’s introduction we heard a shared story from Dr. Malissa Martin. She spoke about her personal experience with a loss related to COVID, and highlighted the importance of today’s forum to help advance knowledge and healthcare through hearing the voices of individuals impacted by COVID.

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Measure to treat: I sent the VAS-F and Neuro QoL Fatigue severity scales to my PM&R team after hearing @PutrinoLab encouraging this and they added it to my medical file as well as the PROMIS scale. So glad my fatigue is now being measured FINALLY. Thank you Dr. Putrino, it’s ridiculous this wasn’t measured at intake.

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"I’m perfect the way I am and a little broken too" Dan Nichols 

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"I’m perfect the way I am and a little broken too" Dan Nichols 

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https://soundcloud.com/user-582341210/asher-yatzar-dan-nichols

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Asher Yatzar - Dan Nichols by URJ Greene Family Camp

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Words and Music by Dan Nichols, morning liturgy

www.dannicholsmusic.com

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Good morning!

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“Gravity” by John Mayer
Team POTS