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@tomkindlon.bsky.socialSep 20, 2026, 5:21 PM

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Impact of sleep dysfunction in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Impact of sleep dysfunction in ME/CFS "As my ME is severe, I have to spend most of my time lying down in bed in darkened room. However, the sleep dysfunction is what really isolates me - I am often asleep when everyone else is awake, but the opposite is also true. This makes my husband feel very lonely. He [and] the rest of my family always want more than I can give." Response from ME Research UK Symptom Saturday Sleep Dysfunction Survey thilidri RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
@colleensteckel.bsky.socialSep 20, 2026, 2:41 PM

Another study that showed #MyalgicEncephalomyelitis patients who fit the Canadian Consensus Criteria and those with #LongCovid have differences in biology.

Study used small groups of patients and may not be a significant finding.

@colleensteckel.bsky.socialSep 20, 2026, 2:21 PM

Latest View from the Trenches of #MyalgicEncephalomyelitis covers updated research lists.

If you are talking to someone who thinks ME is "fatigue" or a "psychological" disease, maybe share these lists showing variety of biological abnormalities.

colleensteckelmeiccinfo.substack.com/p/myalgic-en...

@madelinenerd.bsky.socialSep 19, 2026, 11:57 PM

New podcast episode: MASKING
open.spotify.com/episode/7BEa...

Where I talk about how I mask pain and survival fear. And how that tends to work with persons with disabilities

#MyalgicEncephalomyelitis #canpoli #disability #MyalgicE #pwME #chronicpain #fibromyalgia #MEAction #Canada

@stpaulsbay.bsky.socialSep 19, 2026, 9:14 PM

#ME/CFS is not an unknowable mystery illness—at least it doesn't have to be. It is a direct consequence of mineralocorticoid receptor overactivity and subsequent glucocorticoid receptor starvation driven by the #rs5522 variant. #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@meactnet.bsky.socialSep 18, 2026, 6:04 PM

The first ME/CFS CDC meeting since 2024 starts in less than an hour!

#MyalgicEncephalomyelitis #MECFS

@irishmecfsassoc.bsky.socialSep 18, 2026, 3:22 PM

There is now an ME page on the HSE website. It includes details for the Lived Experience Groups that are still recruiting "people living with ME and those who support them"

healthservice.hse.ie/staff/inform...

#MyalgicEncephalomyelitis #PwME

HSE logo Pay Pensions and Retirement Leave Staff Information for healthcare professionals Myalgic Encephalomyelitis (ME) Myalgic Encephalomyelitis (ME) is a serious, long-term complex disease that affects multiple body systems and can greatly reduce a person’s health and quality of life. ME has historically been described and named in inconsistent ways. Currently, there is no agreed Irish guideline for diagnosing, treating, or managing ME, and approaches vary worldwide. In 2025, Ireland’s Health Service Executive (HSE) received funding to create the first HSE National Clinical Guideline for ME. The new guideline will aim to improve understanding, diagnosis, treatment, and management of ME in Ireland, resulting in quality care for people living with ME.
@actionforme.bsky.socialSep 18, 2026, 8:00 AM

⏰ Our AGM is next week!

Join us online on Tuesday 22nd Sept from 2pm–3pm to hear about Action for ME's work over the past year and our future priorities.

There's still time to register: us02web.zoom.us/webinar/regi...

#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis

Action for ME logo followed by stamp saying "Final reminder". Text below reads "Annual General Meeting. Last Chance to register. Hear about our organisation's activities and acheivements over the past year and look ahead with us to future priorities. Tuesday 22nd September 2026 2-3pm Online - Zoom.
@litsadremousis.bsky.socialSep 17, 2026, 3:47 PM

Also extremely common w/ #MyalgicEncephalomyelitis, ie the post-infectious illness twin sibling of #LongCovid.

And though I explained to my UW Med @uwmedicine.bsky.social ENT that I have the worst case of POTS documented at Providence, she still asked at our follow up appt:

“Are you still dizzy?”

@meactnet.bsky.socialSep 17, 2026, 12:00 AM

#MEAction's next #caregiver support call is Sept. 19 at 1:30 pm ET - 3:30 pm ET.

We welcome caregivers of people w/ chronic diseases such as #MyalgicEncephalomyelitis (ME), #LongCOVID, #MCAS, etc!

To join the calls, please email [email protected] at we will get you set up!

Two hands (one set of hands is brown and the single hand they are clasping is deep brown) gently clasped together symbolizing support. Text: ME caregivers support call 3rd Saturday of the month 1:30 to 3:30 pm ET. For caregivers of people with myalgic encephalomyelitis (ME), Long COVID, and associated conditions. https://www.meaction.net/event-list
@tomkindlon.bsky.socialSep 16, 2026, 9:12 PM

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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
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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.
@foretellband.bsky.socialSep 15, 2026, 10:06 PM

I feel so fortunate that #myalgicencephalomyelitis hasn’t completely defanged me at this point, but always am mindful that it has taken so much from others.

@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.
@circadianstatic.bsky.socialSep 15, 2026, 9:17 PM

So, I have ME. I have Fibromyalgia. I have Sacral Nerve Damage. For the person that always shouted believe survivors - I need you to believe in the fact that I can get back to who I’m meant to be. Love you all. 🔗 gofund.me/ac10af7fd 🔗 #gofundme #myalgicencephalomyelitis #mecfs #fibromyalgia #help

Photo, no descriptionPhoto, no description
@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
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