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@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
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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

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“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

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

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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

@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

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

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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.
@cfscounselling.bsky.socialSep 15, 2026, 9:00 PM

Just 4 more days until the big day! #TheGrandParadeBarrie is right around the corner, are you prepared? Everything you need is just a click away. https://thegrandparade.org/location/barrie #CFS #TheFutureIsOld #HopeLivesHere #TheGrandParade

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@tomkindlon.bsky.socialSep 15, 2026, 8:43 PM

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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.
@tomkindlon.bsky.socialSep 15, 2026, 7:16 PM

🧵
I thought this 7-page introductory piece written by a medical doctor was very good

"Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by @drmichaelabauer.bsky.social

storage.e.jimdo.com/file/1caec72...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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"Understanding ME/CFS An Introduction to a Complex Illness" Dr. med. Michaela Bauer · August 2026 Image of a female reading a book entitled "ME/CFS Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" with 5 thought bubbles showing what she is thinking about
@cfscounselling.bsky.socialSep 15, 2026, 2:02 PM

Thank you to @deltabingoandgaming, @barriebsa and @cgamingcgood for providing ongoing support to local charities - like us! With your help, #CFS furthers its goal in providing making high-quality mental health and wellbeing services accessible to all members of our community. #HopeLivesHere

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@tomkindlon.bsky.socialSep 15, 2026, 1:10 PM

The advocacy group @nichtgenesen.bsky.social has written a 11-page rebuttal of a book chapter published in Psychotherapie.

link.springer.com/chapter/10.1...

drive.google.com/file/d/1_9Tt...

Automated translations
s4me.info/threads/chro...

s4me.info/threads/chro...

#MEcfs #PwME #CFS

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Germany The advocacy group NichtGenesen has written a 11-page rebuttal of a book chapter published in Psychotherapie. The chapter recommends cognitive behavioral therapy and states that some ME/CFS patients have a reproachful attitude toward healthcare providers who do not share their views. Article | Thread
@tomkindlon.bsky.socialSep 14, 2026, 10:10 PM

Hope to see a few of you at this. 👋

#MyalgicEncephalomyelitis #LongCovid #CFS #ChronicFatigueSyndrome

@cfscounselling.bsky.socialSep 14, 2026, 7:00 PM

Do you live or work in #SimoeCounty or #Muskoka and feel #ready2talk? CFS' professional counselling sessions are available at no cost (thanks to our generous funders!) virtually and in-person. Book yours today at https://tinyurl.com/37yc89zd #CFS #HopeLivesHere

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@tomkindlon.bsky.socialSep 14, 2026, 2:01 PM

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“Discussion of LP, its use of NLP, the SMILE trial, the Jason Busse LP trial was thorough and accurate.”

#LongCovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@haebin.bsky.socialSep 14, 2026, 1:37 PM

You know what sucks? To wake up in the morning and feeling exhausted to the core. After a sleep of eight hours. Zero Spoons. Leaving the bed, taking a shower, going to the doc ... it felt like climbing a mountain...

#chronicpain #fms #cfs #fibromyalgia

@tomkindlon.bsky.socialSep 14, 2026, 1:30 PM

2nd half of this podcast episode discusses Long Covid, ME/CFS, "neuro-bollocks"-treatments eg Lightning Process, weak scientific methods behind trials eg FALCON/SMILE/PACE & more.

www.conspirituality.net/episodes/326...

Haven't listened so far but saw praise for it

#MEcfs #LongCovid #PwME #CFS
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Conspiracy theorists have decided Novak Djokovic has long COVID — despite no evidence — because he's become an anti-vax icon courted by RFK Jr. and Dr. Oz. So we thought it was high time for a long COVID update. Derek looks at a new Boston Children's Hospital research on viral reactivation, as well as the findings of a 2026 meta-analysis pooling 200,000+ participants. Matthew surveys the Canadian LC landscape, where insurance-industry money is quietly funding McGill's Institute for Transforming Healthcare and McMaster's FALCON trial, testing the pseudoscientific "Lightning Process" on Long COVID patients, led by researcher Dr. Jason Busse, who has deep insurance-disability ties. Finally, Julian unpacks Phil Parker's Lightning Process — Ericksonian NLP dressed as neuroscience, with roots in hypnotherapy, cult techniques, and pure "neuro-bollocks."
@tomkindlon.bsky.socialSep 14, 2026, 11:44 AM

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"Seventeen participants (35%) were classified as hypovolemic, 21 (43%) as normovolemic, and 11 (22%) as hypervolemic."

"findings suggest that static blood volume deficits alone are unlikely to be the principal determinant of OI in ME/CFS."

#mecfs #cfs

@tomkindlon.bsky.socialSep 14, 2026, 11:37 AM

NINDS & MECFSnet - ME/CFS Exchange Webinar Series

Webinar 1: Persistence of Post-Acute Infection Symptoms: What Causes Them and Why Do They Persist?
Thursday, Oct. 8, 1 - 3 pm ET

mecfs.rti.org/news/

Register
rtiorg.zoom.us/webinar/regi...

#mecfs #cfs #pwme #longcovid

@tomkindlon.bsky.socialSep 14, 2026, 12:18 AM

The Hidden Hierarchy of Illness

journals.sagepub.com/doi/full/10....

Screenshot from September AMMES newsletter

#MEcfs #PwME #CFS #ME #MyalgicE

Photo of a man with his head in his hand with the following text The Hidden Hierarchy of Illness "As a rehabilitation physician working closely with patients with long-standing ME/CFS and functional disorders, I have repeatedly been struck by a paradox that is difficult to forget. Several patients whom I had followed for years, disabled by profound fatigue, cognitive dysfunction, and loss of function, were later found to have incidental MRI findings that supported a diagnosis of multiple sclerosis. Each time, I expected devastation. Instead, more than one patient told me that the day they were given the diagnosis of MS was ‘the best day of my life’. Not because their suffering had changed, but because, for the first time, it had become legitimate. They were no longer exhausted without cause, disabled without explanation, or ill without status. They had crossed an invisible threshold from a condition that required justification into one that commanded recognition." Read more here>>