Broadwaybabyto<p>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.</p><p><a href="https://www.disabledginger.com/p/why-are-chronically-ill-people-forced" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">disabledginger.com/p/why-are-c</span><span class="invisible">hronically-ill-people-forced</span></a></p><p><a href="https://zeroes.ca/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <a href="https://zeroes.ca/tags/disability" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disability</span></a> <a href="https://zeroes.ca/tags/ableism" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ableism</span></a> <a href="https://zeroes.ca/tags/eugenics" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>eugenics</span></a> <a href="https://zeroes.ca/tags/disabilityrights" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disabilityrights</span></a> <a href="https://zeroes.ca/tags/longcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longcovid</span></a> <a href="https://zeroes.ca/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a></p>
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159 posts84 participants4 posts today
Emerge Australia’s Research Digest 115
Covers ME/CFS & long Covid research plus an Australian media article on long Covid.
https://www.emerge.org.au/researchdigest/research-digest-issue-115/
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
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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/
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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
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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
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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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MastodonFatigatio e.V. (@FatigatioeV@mastodon.social)76 Posts, 59 Following, 196 Followers · Fatigatio e.V. - Bundesverband ME/CFS: Wir unterstützen Menschen mit #MECFS (Myalgische Enzephalomyelitis/Chronisches Fatigue Syndrom) und deren Angehörige und setzen uns seit 1993 für Versorgung, Forschung und Aufklärung ein. Unsere #Patientenorganisation hat über 3.000 Mitglieder. Der #Verband organisiert und engagiert sich außerdem in deutschlandweiten Regionalgruppen in der #Selbsthilfe.
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
The Disabled Ginger · Why Are Chronically Ill People Forced to Hide Their Pain?
Well, some movement in the Cochrane institute which might mean that the harmful Larun et al review is eventually going to be withdrawn.
Apparently the departure of the CEO in March might also facilitate this process.
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-2024-exercise-therapy-for-cfs-review/u/33377035?cs_tk=A3Jw4loac3T6BO4v72cAAXicyyvNyQEABF8BvGQ3MmVkNzJkMTM3MjRkNzYxMTkzZWUxNWI3OWE5MGFiZjZlOWE0ZGZjMjQyZWIzNzUxODFjM2MwYjY0NTkyNDk%3D
#cochrane #cochranestudy #LongCovid #mecfs
Change.orgSome small changes for the betterAn updated editorial noteCochrane has again amended the editorial note on the Larun et al review. The Editorial Note is now:
Editorial Note (19 December 2024; amended 31 January 2025; amended 25 March 2025):"This Cochrane review was published in 2019 and includes studies from searches up to 9 May 2014. A pilot project for engaging interest holders in the development of an update of this Cochrane r
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Renegade Research Roundtable on Patient-Led Study of Lactate in ME/CFS and Long COVID
Register at https://renegade-research.org/events-list
or get a link by emailing event at renegade-research.org
Free, open to the public, science!
h/t @ellybb
Renegade ResearchEvents (List) | Renegade Research
When I started The Disabled Ginger I sent it to my friends and family … as most of us do.
I was proud that I was finally standing up for disability rights. That I was taking my pain and putting it on the page in an effort to help others. That I had found something that lit a spark inside me.
Unfortunately, many of my friends didn’t feel the same way.
My disabilities are invisible, and I had become very good at hiding them. Apparently that’s what people expected of me, as they didn’t like this “new” version of Kelly.
Almost none of my friends subscribed. What’s worse, many stopped talking to me. Or would only reply in brief texts.
It’s almost been a year since I launched, and my circle is noticeably smaller. Many people I thought I was close with haven’t reached out for nearly 6 months.
When you find your purpose and your passion, it’s an incredible feeling. Hopefully people support you.
Not everyone will. And that’s ok.
It’s painful seeing so many relationships fade away. It hurts knowing they don’t see the value in me now that I’m “officially” disabled.
As painful as it is, it’s also a perfect example of why I became an advocate. Ableism is a huge problem. Being disabled can be incredibly lonely. I wanted to give a voice to those who haven’t yet found theirs.
In the process I’ve met incredible people from all over the world who inspire me to keep going. Who give me a reason to write every day. Who remind me of the compassion, love and goodness that’s still out there.
Thank you to each and every one of you. I couldn’t do this alone.
My latest looks at the reasons we hide, and what would happen if we all decided to stop hiding and show the world the realities of chronic illness:
https://www.disabledginger.com/p/why-are-chronically-ill-people-forced
The Disabled Ginger · Why Are Chronically Ill People Forced to Hide Their Pain?
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I write this stuff because sometimes I feel better when I put the thoughts into words. And because maybe someone will relate to it and gain insights into their own situation. But mostly because sometimes it makes me feel better.
And I do. Much more focused now.
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There's a sort of adrenal balance and that's all out of whack for me now. This is a better problem to have than the problems before I moved. Like when I'm resting, it's hard to find media that can hold my interest. Horror and cult docus are *too* exciting, and nothing else is exciting enough. I still trend towards the darker stuff (I'm watching someone do a Disco Elysium lets play right now), which keeps me in a darker headspace, but the happy unicorn pony shit just feels... empty. I haven't been able to watch a straight-up comedy that isn't gallows humor in many years, because it's supposed to be funny but I don't feel like laughing. I don't really have a video "genre" right now, games besides idle games are still out of reach and idle games have gotten boring. I start a lot of stuff and then stop it, which it's great that I can finally be spontaneous now and try things at random, but my morale takes a hit after I've skipped a couple of videos or shows. I'm doing much better at reading when I do have energy, but when I'm so tired like that, I know I won't get more than a page or two.
So rest is unfulfilling, too.
There's probably some element here we might call "depression." I don't really feel hopeless, just tired, which makes me unable to hold interest in a whole lot.
I blamed it on cognitive drain from the taxes push last week and figured it would pass by now. It will surely pass as all things do, but it's getting old.