ScienceNorway: Almost no ME/CFS patients return to work
Image is from the latest Science for ME weekly update
ScienceNorway: Almost no ME/CFS patients return to work
Image is from the latest Science for ME weekly update
Registration for online participation in the International ME/CFS Conference 2025 on 12-13 May 2025 is now open
https://events.mecfs-research.org/en/events/conference_2025
Image is from the latest Science for ME weekly update
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
The Science for ME forum has published its first factsheet which gives an introduction to ME/CFS. It was created following extensive discussion among forum members.
https://s4me.info/docs/WhatIsMECFS-S4ME-Factsheet.pdf
Factsheets on other topics related to ME/CFS are in the pipeline.
One highlight from this week's news - the Science for ME forum has published its first factsheet, Introduction to ME/CFS:
https://www.s4me.info/threads/science-for-me-fact-sheets.43310/
PDF version:
https://s4me.info/docs/WhatIsMECFS-S4ME-Factsheet.pdf
Our latest News in Brief post has headlines and links to further reading for #MECFS, #LongCovid, and related news, advocacy and research for the week of March 24 - 30.
Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research
https://www.s4me.info/threads/news-in-brief-march-2025.43011/#post-597543
Science for ME: News in Brief
24 - 30 Mar 2025
This week's research articles, media items, advocacy and other news relating to #MECFS and #LongCovid
@mecfs
https://www.s4me.info/threads/news-in-brief-march-2025.43011/#post-597543
Me & Alf. The powered wheelchair is a new thing. Walking even very short distances provokes an extreme fatigue that can now wipe me out for days #mecfs Alf like a lift and I was pleased to oblige. #photography #ME
(US)
'It's just ugly': Federal funding cuts to Columbia University leave chronic fatigue [ME/CFS] research in limbo
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
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“We’ve been conditioned by society that pain is weakness. That being sick is something you can overcome by simply trying harder.”
You can’t “try harder” your way out of disability. It’s not a weakness or a moral failing.
It is one of the only minority groups you can join at any time.
Ableism forces us to hide our suffering. To smile through the pain and deliver a convincing “I’m fine”
My latest looks at what would happen if we stopped hiding, as well as ways you can support the disabled person in your life.
https://www.disabledginger.com/p/why-are-chronically-ill-people-forced
Tomorrow is a gift that the chronically ill never get to receive. When you’re temporarily sick, you know that it’s going to improve. You can rest because you have the knowledge that the next day will be a little bit better. Each day there will be progress until you’re completely ‘fine’ again.
https://www.disabledginger.com/p/why-are-chronically-ill-people-forced
3/
Here is another list of symptoms and their prevalence rates from a cohort with ME (n=420)
From: #MyalgicEncephalomyelitis--a persistent enteroviral infection? E G Dowsett, A M Ramsay, R A McCartney, E J Bell. Postgrad Med J. 1990 Jul;66(777):526-30. pubmed.ncbi.nlm.nih.gov/2170962/
2/
Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath
#MyalgicE #MEeps #CFSME #LongCovid #NeuroME #mecfs
@mecfs #longcovid @longcovid
I thought I would repost this to highlight again some of the many varied symptoms that can be found in #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome
Particularly relevant when similarities with the #LongCovid presentation in some people are being missed
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
1/
Es ist hart, den Verfall eines Menschen mitzuerleben, der #MECFS hat. Vergessen der einfachsten Dinge, Sachen fallen herunter, alltägliche Handgriffe misslingen, wohl auf dem Weg zur Demenz. Ein anderer Mensch als der, den ich einst so stark empfunden und bewundert habe. Meine Frau. Und ich habe auch MECFS. Vielleicht habe ich noch einen kleinen Aufschub, aber wahrscheinlich das selbe Schicksal. Auslöser eine Pandemie, die viele nicht mehr wahrhaben wollen. #PostCovid
Zahlreiche Mitglieder des Fatigatio e.V. haben die Entstehung dieses Buches durch ihre Teilnahme an der ME/CFS-Studie des VIPH maßgeblich unterstützt.
#MECFS #Fachbuch #Patientenversorgung #Gesundheit #Medizin #VIPH #ME #Fortbildung #Fatigatio #Hogrefe
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Neuerscheinung: "Das Handbuch ME/CFS - Patientenzentrierte Versorgung und interprofessionelle Handlungsempfehlungen“ von Lotte Habermann-Horstmeier vom Villingen Institute of Public Health unter Mitarbeit von Herbert Renz-Polster.
Erscheint im April 2025 im Hogrefe Verlag.
Mit einem Geleitwort von https://mastodon.social/@FatigatioeV unter Mitwirkung der DG ME/CFS.
Mehr Infos und Link zur Vorbestellung gibt es auf: https://www.fatigatio.de/aktuelles/detail/handbuch-me-cfs-patientenzentrierte-versorgung-interprofessionelle-handlungsempfehlungen
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When your body forced you into shutdown nap mode from 6-8pm but now you can’t go to normal sleep.
I *almost* made it through the day.
“I don’t know how you do it! I could never be chronically ill!”
We didn’t get a choice. No one asked our permission. Disability just happens. It can happen to you too.
We cope because we have no choice. We can’t trade our bodies in for new ones. We can’t “try harder” our way out of it.
“Unfortunately most people can’t process the lack of choice in the matter. They genuinely believe that we either want to be this sick, or could get better if we really ‘tried’. They believe they wouldn’t be able to handle what we go through, because they’re convinced they will never NEED to handle it. They’re the exception. Chronic illness won’t happen to them”
https://www.disabledginger.com/p/why-are-chronically-ill-people-forced