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@katybrc.bsky.socialSep 17, 2026, 1:04 PM

It's hard to explain quite how infuriating & heartbreaking it is to see #pwME who were born after I first became ill with #ME,
39 years ago, still having to advocate for themselves,
still barely holding onto their lives, still having to fight for their basic rights

@elimrogers.bsky.socialSep 17, 2026, 1:31 AM

btw, this isn’t to toot my own horn, but clearly Amazon’s algorithms profoundly underestimated how many people care about #PwME.

@tomkindlon.bsky.socialSep 17, 2026, 12:27 AM

Myalgic encephalomyelitis/chronic fatigue syndrome and overlapping post-acute infection syndromes: international expert consensus framework for diagnostic standardization

link.springer.com/article/10.1...

s4me.info/threads/me-c...

Screenshot from Science for ME weekly update

#MEcfs #PwME #CFS

Myalgic encephalomyelitis/chronic fatigue syndrome and overlapping post-acute infection syndromes: international expert consensus framework for diagnostic standardization — Kujawski et al "The proposed tools quantify functional impairment and symptom severity rather than disease-specific pathophysiology. All cut-offs are provisional expert estimates requiring prospective validation." Article | Thread
@tomkindlon.bsky.socialSep 16, 2026, 9:12 PM

2/
My initial thoughts for what they are worth on a video on ME/CFS which has over 170,000 views in the first 6 days!

www.youtube.com/watch?v=GILP...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

A YouTuber, Skallagrim, with 1.63 million followers has created a 31-minute video, “What ME/CFS is, and how it is wrecking me” I have watched it & given it has over 170,000 views in 6 days, I thought I would highlight it. I don’t think it is particularly brilliant but the more people who understand this illness and can be sympathetic or empathetic to people affected the better. I think this will help with this. He has a slow, languid way of talking which I found easy to listen to. For a lot of it, I didn’t look at the screen as apart from the odd photo, it is him talking to the camera. I imagine there will be people unhappy with bits here and there with it. My minor criticism is that a couple of times, he mentions research suggests the brain can be affected in a way that can affect willpower. However at other times, he makes clear it is not something that can be overcome with willpower. And he emphasises a bit that “the absolute worst thing to do is push through.” He does use the F-word four times I think, all in the last third of the video (around 22:52, 24:12, 26:50 & 27:55). The main focus is his own experiences so there is hardly any talk of the more severe form of the condition. Anyway people can watch it themselves and either comment here and/or on the video page itself. #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@tomkindlon.bsky.socialSep 16, 2026, 8:26 PM

YouTuber @skallagrim.bsky.social with 1.63M followers has created a 31-minute video, “What ME/CFS is, and how it is wrecking me” with over 170,000 views

www.youtube.com/watch?v=GILP...

See next post for a few quick thoughts

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #PwME #CFS
1/

Screenshot of a YouTube video with a man talking to camera What ME/CFS Is, and How It's Wrecking Me Skallagrim Skallagrim 1.63m subscribers Join Subscribe 5.4k Share Save Thanks 170,621 views 9 Sept 2026 Hardly anyone knows about this (even some people who have it themselves), so I figured this might be educational. It's definitely a life altering condition, and a difficult, frustrating journey to find anything that helps. In my opinion "Myalgic Encephalomyelitis" is the better term. "Chronic Fatigue Syndrome" ends up sort of downplaying the severity and might make you think it's "just being tired". If only that was all there is to it...
@tomkindlon.bsky.socialSep 16, 2026, 4:29 PM

6/

“Why can medicine help so little?”

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Why Can Medicine Help So Little? We grow up with a simple assumption: "I get sick, and medicine helps me." What seems self-evident, however, is only possible because research has been conducted beforehand. Research is the foundation of medical care. Only when a disease is studied can its causes and underlying biological mechanisms be better understood. This knowledge makes it possible to develop reliable diagnostic tests and examinations. Based on these insights, treatments can then be researched and evaluated. The resulting knowledge must also be incorporated into medical education and professional training so that it reaches healthcare professionals and, ultimately, patients. In the case of ME/CFS, this chain remains incomplete in several places to this day (Cullinan et al., 2021; Hoffmann et al., 2024). As a result, there is currently no treatment that can cure ME/CFS or directly address its underlying cause. Individual symptoms can be treated, but for many patients these interventions provide only limited relief (Hoffmann et al., 2024). When I get sick, medicine helps me. This is what it is like with ME/CFS: FIGURE 4 — MEDICINE AND RESEARCH. Source: Author's own illustration, created with Al assistance.
@tomkindlon.bsky.socialSep 16, 2026, 3:20 PM

5/

“What is pacing?”

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

What Is Pacing? Because there are currently no treatments that address the underlying cause of ME/CFS, it is important for people with the illness to avoid symptom exacerbation, known as Post-Exertional Malaise (PEM), as much as possible. To do this, they must learn to carefully manage their limited energy. This strategy is known as pacing. Pacing means adapting physical, cognitive, and emotional activities, as well as time spent sitting or standing upright, to an individual's available and often fluctuating level of exertion tolerance. This can mean having to choose between two completely ordinary activities because doing both might already trigger a crash. The more severe the illness, the smaller this margin can become (Bateman et al., 2021; Hoffmann et al., 2024; NICE, 2021; Seton et al., 2024). As a result, pacing can look very different from one person to another. For some, it means reducing work, household responsibilities, or social activities and planning regular rest periods. For people who are more severely affected, it may involve limiting even basic activities such as washing, eating, or having short conversations to avoid deterioration. In addition, exertion limits can fluctuate and are not always predictable. What was manageable on one day may already be too much on another. Pacing therefore requires continuous adjustment to a person's current condition. This is why pacing is both necessary and challenging: it requires people to continually limit or give up activities despite having the motivation and desire to engage in them. Pacing is neither exercise training nor a treatment for the underlying disease. Its purpose is simply to minimize PEM and reduce the risk of further deterioration (Hoffmann et al., 2024).
@chembarathi.northsky.socialSep 16, 2026, 1:23 PM

My sister gifted one my handknitted socks to her friend and that friend told her that the socks are too beautiful to walk on. I am over the moon today even though I have not slept much last night and my head and eyes are hurting. 🥰🌺 #pwme

@anilvanderzee.bsky.socialSep 16, 2026, 1:07 PM

Ties en Siem (5 en 10) lopen voor hun zieke moeder met ME.

Steunen jullie deze helden en daarmee ook biomedisch onderzoek?

supporta.com/optw/1gjwl4v...

#pwme #myalgicE #severeME #MEcvs #PAIZ #PAIS #IACI #IACC #MillionsMissing

@meassociation.org.ukSep 16, 2026, 1:04 PM

A new research paper, published in Elsevir, has identified changes to cerebral (brain) blood flow in patients with Long Covid.

Dr Charles Shepherd, MEA Hon. Medical Adviser, provides comments on the blog: https://meassociation.org.uk/jo9c

#MECFS #pwME #LongCovid #PostCovid #Research

@tomkindlon.bsky.socialSep 16, 2026, 12:57 PM

4/

Extract from "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #SevereME

The United Nations Nelson Mandela Rules are regarded as the international minimum standards for the humane treatment of people in prison. They define solitary confinement as at least 22 hours per day without meaningful human contact. If it lasts longer than 15 days, it is considered prolonged solitary confinement, which should not be used because of its potentially severe health consequences (The Nelson Mandela Rules, 2015). People with ME/CFS are, of course, not imprisoned. However, the illness itself can make light, noise, touch, or conversation intolerable, and even basic needs may have to be reduced to an absolute minimum (NICE, 2021). This state can persist for a very long time: most diagnostic criteria require a disease duration of at least six months, but many people remain ill for years or even decades (Carruthers et al., 2003). This comparison helps illustrate something that is otherwise difficult to comprehend: a person may continue to think, feel, and have interests, while at the same time being largely cut off from the world and effectively trapped within their own body because of ME/CFS.
@irishmecfsassoc.bsky.socialSep 16, 2026, 11:58 AM

We have been asked the following. Feel free to message us if you prefer:

“any chance please you know of any GPs in Kilkenny city that people are happy with ie they either have some knowledge about ME or at a minimum are sympathetic towards it?”

#MEcfs #Kilkenny #PwME #CFS #KilkennyCity

@anilvanderzee.bsky.socialSep 16, 2026, 10:55 AM

My illness is not part of my identity.

Some late‑night, off‑the‑cuff rambling about the notion that some people make their illness part of their identity.

This was partly in response to that Telegraph article.

#pwme #myalgicE #millionsmissing

youtu.be/zFwaPS5c6RI?...

@tomkindlon.bsky.socialSep 16, 2026, 10:10 AM

Important that there is a decent attendance at this I think to encourage them to do more. This is their first one since I think 2024.
#MEcfs #CFS #PwME

@meassociation.org.ukSep 16, 2026, 9:30 AM

Last Friday, MEA Associate Trustee, Nicki Strong, attended a private viewing event at the Royal Opera House for the I Would Be There If I Could arts project.

Find out more about the event: https://meassociation.org.uk/bp30

#MECFS #pwME #MyalgicE #LongCovid #IWouldBeThereIfICould #Mirrorbox

IMAGE DESCRIPTION: Photo of Nicki Strong, MEA Associate Trustee, stood in front of the Mirrorbox in the Royal Opera House foyer. Heading: "I Would Be Here If I Could: ME Association Trustee attends The Mirrorbox Journey event at the Royal Opera House"
@swastrosarah.bsky.socialSep 16, 2026, 9:28 AM

Well, that's not much dosh actually. Adaptations grants are available for, typically, a stair lift.
I know #pwME who have successfully applied for these grants.
It's all assessment dependent, so the longer you leave it . . . & next summer will be worse. #ElNiño

@tomkindlon.bsky.socialSep 15, 2026, 10:01 PM

3/

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

4 images with the following text Living space always gets smatter Affected individuals lose their world Isolation can feel like imprisonment within the body. FIGUE 2 - Severity Levels. Source: Author's own illustration, created with Al assistance.
@tomkindlon.bsky.socialSep 15, 2026, 8:43 PM

2/

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Images with the following text A Pleasant Afternoon A Few Hours Later The Next Day Duration Uncertain Even an enjoyable activity can trigger a crash. FIGURE 1 — Post-Exertional Malaise (PEM). Source: Author's own illustration, created with Al assistance.