Personal collection of information for patients with complex chronic illnesses and doctors wanting to support them (some in German, some in English) by katha1970

Summary of highlights of the WHO guideline clearly stating "no exercise for patients with PEM" (English)

katha1970_ — 2024-02-29 17:12:41 UTC

This document sums up the highlights of the WHO guideline from September 2022 with regard to Post Covid and post-exertional symptom exacerbation (PESE).

This document is a personal summary from the original WHO guideline with personal comments and is no medical advice.

You may download and distribute it. Maybe it will help patients and doctors to have evidence on why to refrain from any kind of exercise therapy when a patient suffers from activity intolerance (also called PEM/PESE/PENE).

Doctor's guide: "What doctors should know when dealing with patients suffering from complex chronic symptoms"

katha1970_ — 2024-02-29 17:12:41 UTC

You may download and distribute this doctor's guide. May it help you as a patient or as a medical doctor to provide better support and care for patients who suffer greatly and have often received so little help.

Ärzte-Guide: "Wie Mediziner Patienten mit komplexen chronischen Symptomen helfen können"

katha1970_ — 2024-02-29 17:12:41 UTC

Du darfst den Ärzte-Guide herunterladen und weiter verteilen. Möge er Patienten helfen und Ärzte dabei unterstützen, Patienten mit komplexen chronischen Symptomen besser zu helfen. Sie leiden oft immens und haben zugleich meist nur wenig hilfreiche ärztliche Unterstützung.

Recommendation for printing:

katha1970_ — 2024-02-29 17:12:41 UTC

Printing from the phone seems to work better if you first download the file and then print it. If printing from your computer, select A4 format.

Drucken vom Telefon scheint besser zu funktionieren, wenn das Dokument erst heruntergeladen und dann gedruckt wird. Vom Computer A4 Format auswählen.

Leitfaden zur Vermeidung von PEM

katha1970_ — 2024-02-29 17:56:35 UTC

Source: https://www.omf.ngo/wp-content/uploads/2019/09/PEM-Avoidance-Toolkit-Deutsch.pdf

Crash Survival Guide (English)

katha1970_ — 2024-02-29 17:58:34 UTC

Source: https://batemanhornecenter.org/wp-content/uploads/filebase/crash_care/Purple_Survival_Guide_Complete.pdf

Was tun im akuten Crash (übersetzter Auszug aus dem Crash Survival Guide)

katha1970_ — 2024-02-29 17:59:02 UTC

Basierend auf dem Crash Survival Guide vom Bateman Horne Center, Quelle: https://batemanhornecenter.org/wp-content/uploads/filebase/crash_care/Purple_Survival_Guide_Complete.pdf

Video visualizing the danger of repeated PEM/crashes

katha1970_ — 2024-02-29 17:59:46 UTC

Source: https://twitter.com/winstoncb/status/1472690709173964802

Flyer zu Reha mit PEM

katha1970_ — 2024-02-29 18:05:22 UTC

Dieser Flyer darf gerne verwendet und geteilt werden, um Betroffene hoffentlich vor aktivierender Reha zu schützen.

Explanation of PEM and pacing (English)

katha1970_ — 2024-02-29 18:07:46 UTC

Source: https://www.meaction.net/resource/pacing-and-management-guide/

Disclaimer

katha1970_ — 2024-02-29 18:23:57 UTC

This padlet constitutes a personal collection of information and documents with regards to complex chronic illnesses. None of the information presented here should be taken as medical advice of any kind.

Dieses Padlet beinhaltet eine persönliche Sammlung von Informationen und Dokumenten rund um komplexe chronische Krankheiten. Keine der hier dargestellten Informationen ist als medizinischer Rat in irgendeiner Form zu verstehen.

Where to find more info

katha1970_ — 2024-03-01 01:44:21 UTC

long-covid-schweiz.info

just to name a few.

S2k-Leitlinie zu Covid-19 und (Früh-) Rehabilitation

katha1970_ — 2024-03-01 13:07:54 UTC

Source: https://register.awmf.org/assets/guidelines/080-008l_S2k_COVID-19-und-Frueh-Rehabilitation_2024-01.pdf

Fragebogen zum Screening auf PEM (für Erwachsene sowie Kinder/Jugendliche)

katha1970_ — 2024-03-01 13:11:37 UTC

ME: International Consensus Criteria

katha1970_ — 2024-03-01 13:17:36 UTC

Source: https://pubmed.ncbi.nlm.nih.gov/21777306/

Kanadische Kriterien für die Diagnose von ME/CFS

katha1970_ — 2024-03-01 13:20:31 UTC

Konzept zur Integration von untererforschten chronischen Erkrankungen in Med School Curricula (so far only in German)

katha1970_ — 2024-03-01 13:37:22 UTC

NICE guideline for ME/CFS

katha1970_ — 2024-03-01 13:43:09 UTC

Source: https://www.nice.org.uk/guidance/ng206

Long Covid Diagnostik- und Therapieschema von Dr. Maja Strasser

katha1970_ — 2024-03-01 14:49:12 UTC

Source: https://www.neuropraxis-solothurn.ch/long-covid-solothurn

Medizinreport des Deutschen Ärzteblattes zur interdisziplinären Behandlung von ME/CFS von Dr. Carmen Scheibenbogen et. al.

katha1970_ — 2024-03-01 16:31:56 UTC

Source: https://www.aerzteblatt.de/archiv/231286/Myalgische-Enzephalomyelitis-Chronisches-Fatigue-Syndrom-Interdisziplinaer-versorgen

"Is this really life ?" - a song for chronically ill and their loved ones

katha1970_ — 2024-04-02 16:04:26 UTC

A song about being chronically ill. Feel free to share with whomever this may do well. With some wishes for doctors and medical researchers in the second half of the video.

It's my life (ME/CFS and Long Covid awareness edition)

katha1970_ — 2024-04-02 16:08:15 UTC

A cover song of the Bon Jovi classic with adapted lyrics for all those suffering from debilitating chronic illnesses (Copyright for the original song by Bon Jovi, adapted lyrics and performance by @katha1970 on X, Bluesky). With information on ME/CFS in the second half of the video.

What patients with complex chronic symptoms wish for in a doctor

katha1970_ — 2024-04-02 16:09:55 UTC

katha1970_ — 2024-04-02 16:13:40 UTC

These songs and videos of mine can also be found on my YouTube channel youtube.com/@pain_and_hope where I will occasionally upload songs and other informational videos relating to complex chronic illnesses

Awareness project for ME/CFS and Long Covid

katha1970_ — 2024-04-02 16:19:58 UTC

My idea is to integrate photos of patients with ME/CFS, Long Covid or "millions missing" from other conditions into the song video of the adapted "It's my life" cover version.

If you are interested to participate, please DM me on Twitter/X (@katha1970) or e-mail me at "awareness.for.mecfs.longcovid@gmail.com" including:

a photo (portraying the illness in some way if possible)
your age
ME/CFS or Long Covid diagnosis if you have one and want to share it (or another diagnosis that makes you one of the "millions missing")
how long you have been sick
which name I may use in connection with your picture (does not have to be your real name)
you can also additionally send me a picture of you from healthy times, although I don’t know yet if I will have space to include these
if you want: a quotation from you (e.g. what the illness has taken from you, what you wish for, what the worst part of being so ill is, something that you wish the world to know)

By sending me this information you agree that you are the rightful owner of these photographs and that they may be used in the song video for "It's my life (ME/CFS and Long Covid awareness edition)".

Thank you very much to all who are willing to contribute to this 💚

Unite To Fight 2024 conference: summary and quotes

katha1970_ — 2024-05-19 00:57:49 UTC

This is my personal summary of the #UniteToFight2024 conference on Long Covid and ME/CFS, followed by an extensive selection of quotes from the conference.

I will update the document from time to time when adding more quotes as replays become available. Last update: June 5th, 2024 (version 5)

English subtitles for all #UniteToFight2024 conference talks

katha1970_ — 2024-06-05 22:43:18 UTC

All 50 conference talks are now available with English subtitles, many also with German, French and Spanish subtitles. Please use YouTube's auto-translations for subtitles in the language of your choice. Replays can be found on the official YouTube channel of the conference: https://www.youtube.com/@UniteToFight2024

Instructions for transcripts/translations of the UniteToFight talks

katha1970_ — 2024-06-17 20:59:29 UTC

Most talks of the Unite To Fight 2024 conference are planned to be subtitled and these subtitles will, as far as possible, be translated into German, Spanish and French.

For those helping with transcripts or translations, here is some additional information to help make this work as efficient as possible. I may update this from time to time if more questions come up that I haven't covered so far.

Thank you very much for your support!

Fragebogen der SGME: Habe ich ME?

katha1970_ — 2024-06-19 15:01:41 UTC

Source: https://sgme.ch/icc

Bell Skala (deutsch)

katha1970_ — 2024-06-19 15:03:17 UTC

Die Bellskala ermöglicht die Einstufung des Grades der Behinderung bei ME/CFS.

Source: https://sgme.ch/bell-skala

Schweregrad-Rechner der SGME

katha1970_ — 2024-06-19 15:05:33 UTC

"Der FUNCAP55 ist ein Instrument, das von einem Forscherteam explizit zur Beurteilung der funktionellen Leistungsfähigkeit bei ME entwickelt wurde. Damit kann nicht nur der Schweregrad einer ME-Erkrankung akkurat angegeben, sondern auch der Krankheitsverlauf verfolgt werden. Es eignet sich deshalb für die klinische Diagnose, zur Nachverfolgung des Krankheitsverlaufs und zur Prüfung der Anspruchsberechtigung auf Invaliditätsleistungen."

Source: Schweizerische Gesellschaft für ME & CFS (https://sgme.ch/funcap55)

Interdisziplinäres Konsensus-Statement zu ME/CFS (D-A-CH)

katha1970_ — 2024-06-19 16:14:34 UTC

Source: https://link.springer.com/article/10.1007/s00508-024-02372-y

Unite To Fight 2024: Konferenz-Zusammenfassung und Zitate

katha1970_ — 2024-06-23 14:33:42 UTC

Dies ist eine von mir verfasste Zusammenfassung der Konferenz, gefolgt von einer Auswahl an Zitaten.

Ich werde das Dokument über die Zeit noch um weitere Zitate ergänzen. Letztes Update: 24.06.2024 (version 2)

UniteToFight - Instructions for adding subtitles in the YouTube channel

katha1970_ — 2024-09-10 12:03:05 UTC

For those helping with uploading the translations, here are some instructions (will be updated under the same link if needed)

Empfehlung der DGKH: viruzides Gurgeln und viruzides Nasenspray

katha1970_ — 2024-11-19 14:20:16 UTC

Source: https://www.krankenhaushygiene.de/pdfdata/72_77_DGKH_Empfehlung_HM_4_22.pdf

Study on Azelastine and repiratory viruses

katha1970_ — 2024-11-19 14:24:21 UTC

Source: https://journals.asm.org/doi/10.1128/mbio.01088-24

Dr. Michael Kacik's protocol for acute COVID infections (in German)

katha1970_ — 2024-11-19 14:28:53 UTC

Source: https://cdn.prod.website-files.com/60eefdbf38841975cdd6183e/652e2a177b4aa80e3b02a79e_Covid-19-Infektion%20Therapieempfehlung.pdf

Tweet von @RSandra266 mit Übersicht über verschiedene Mittel (mit verlinkten Studien)

katha1970_ — 2024-11-19 14:33:15 UTC

Source: https://x.com/RSandra266/status/1816077208982638734

Tweet by @Clean_Air_Club_ with overview of different nasal sprays

katha1970_ — 2024-11-19 14:34:54 UTC

Source: https://x.com/Clean_Air_Club_/status/1685790242681331713

Study suggests that Metformin can reduce Long Covid risk

katha1970_ — 2024-12-16 23:39:26 UTC

"Outpatient treatment with metformin reduced long COVID incidence by about 41%, with an absolute reduction of 4·1%, compared with placebo. Metformin has clinical benefits when used as outpatient treatment for COVID-19 and is globally available, low-cost, and safe."

Source: https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(23)00299-2/fulltext

Study on antiviral effect of Metformin

katha1970_ — 2024-12-16 23:50:16 UTC

"In this randomized, placebo-controlled trial of outpatient treatment of SARS-CoV-2, metformin significantly reduced SARS-CoV-2 viral load"

Source: https://academic.oup.com/cid/article/79/2/354/7660393?login=false

Fragebogen zur Diagnose von ME/CFS: MBSQ (München Berlin Symptom Questionnaire inkl. CCC, IOM und PEM Kriterien)

katha1970_ — 2024-12-20 13:42:08 UTC

Source: https://static-content.springer.com/esm/art%3A10.1007%2Fs00431-023-05351-z/MediaObjects/431_2023_5351_MOESM2_ESM.pdf