#pwme

Tom Kindlon

@tomkindlon.bsky.social

4 hours ago

Assessment and Incidence Determination of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Following a SARS-CoV-2 Infection in a Prospective Cohort of Hospital Employees — Matthias Tack et al. "our study found an incidence of at least 11.8% (CI 95% 7.8–16.8) for PCS with fatigue and 3.2% (CI 95% 1.3–6.4) for post-COVID-19 ME/CFS in HEs 21 months after the first SARS-CoV-2 infection."

From Germany:

Assessment and Incidence Determination of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Following a SARS-CoV-2 Infection in a Prospective Cohort of Hospital Employees

www.mdpi.com/1648-9144/62...

Screenshot from Science for ME weekly update

#LongCovid #MEcfs #CFS #PwME

Tom Kindlon

@tomkindlon.bsky.social

4 hours ago

George and his ME/CFS 3-panel cartoon 1st panel: George: it's my ME/CFS… I'm having a really bad day 2nd panel: woman to George: any idea what caused this setback? 3rd panel: George: I've narrowed it down to something I haven't taken (in the background are lots of boxes of different prescriptions)

6/
More from a series of comic strips about life as a person with ME/CFS.

"George and His ME/CFS"

🎨Rick Menard

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Tom Kindlon

@tomkindlon.bsky.social

7 hours ago

10/

“(Contd) They must move away from the idea that activity is dangerous, and instead say that activity is necessary and important, it provides safe exploration of activity, instead of it feeling dangerous. Severity does not mean anything for carrying out treatment.”

#MEcfs #CFS #PwME #CFSME

Irish ME/CFS Association

@irishmecfsassoc.bsky.social

7 hours ago

From the Irish ME/CFS Association: We were delighted to get another grant for core funding of €3000 last week from the Hospital Saturday Fund following an application Tom Kindlon made earlier in the year. The Hospital Saturday Fund gets its funds from Hospital Saturday Fund health plans. Medical charities can only get funds once a year so we will of course need to be careful how we plan to use it. In photo: Vera & Tom Kindlon, committee members of the Irish ME/CFS Association, an all-volunteer organisation. Photo was actually from 2020: they transferred the money this year so we don't have one of those envelopes with their name on it. The Hospital Saturday Fund #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME Tom Kindlon-pwme

2/2

Longer message regarding the €3000 core funding grant that we were delighted to receive this week from the Hospital Saturday Fund

#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME #MyE

Irish ME/CFS Association

@irishmecfsassoc.bsky.social

7 hours ago

Photo of Vera and Tom Kindlon

Delighted to receive a €3000 core funding grant from the Hospital Saturday Fund this week.

Will be very useful as there has been relatively little fundraising for us in recent times

In photo: Vera Kindlon & @tomkindlon.bsky.social

Longer message in next post

#MEcfs #CFS #MyalgicE #PwME

1/2

Tom Kindlon

@tomkindlon.bsky.social

8 hours ago

9/
“(Contd) Rapid changes can occur when the patient becomes curious about new ways of thinking about the disease.”

You would think doctors shouldn’t be spouting unevidenced rubbish in a court room like this!

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Tom Kindlon

@tomkindlon.bsky.social

10 hours ago

8/

Nav’s consulting physician “said that absolutely everything that can be thought of as leading to improvement should be tried. You have to be open to other techniques and ways of thinking, when what you have already tried does not work, she said. (contd)”

#MEcfs #PwME #CFS

Tom Kindlon

@tomkindlon.bsky.social

11 hours ago

7/
Nav’s consulting physician “talked a lot about “motivation,” and that a lack of faith in treatment would cause it to not work. I took it as meaning that the family and Kolbjørn lacked motivation, which was why he was still sick.”
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Tom Kindlon

@tomkindlon.bsky.social

12 hours ago

11/

“And yes, they’re often unglamorous. A chair. A timer. A routine that looks boring on paper. But boring, in this context, can be a gift. Predictability can be a form of care. Ease is a strategy.

Small changes are how capacity returns. (contd)”

#mecfs #longcovid #pwme #cfs

Tom Kindlon

@tomkindlon.bsky.social

13 hours ago

6/
Nav’s consulting physician, Ingvild Damskog: “believed that there are “many” who recover. When Anne Kielland asked why these recoveries were not visible in the statistics, she could not answer.”

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Fiona C

@drfionac.bsky.social

13 hours ago

What is Post-exertional malaise (PEM)? YouTube video by Visible

A good explanation for anyone who’s been wondering what PEM is when mentioned by people with MECFS #PwME (and crashes)

Tom Kindlon

@tomkindlon.bsky.social

14 hours ago

10/

“That can be uncomfortable. Sometimes it brushes up against grief. Sometimes it requires renegotiating old beliefs about strength and resilience and what “trying hard enough” is supposed to look like.”

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

Tom Kindlon

@tomkindlon.bsky.social

14 hours ago

5/

Nav’s consulting physician: “believed that activity matching does not work, they do not see the effect of it (and have thus missed the point that it is a coping strategy, not a treatment).”

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Carrie - MySeveralWorlds - Artist, Author, Advocate

@carriekellenberger.bsky.social

14 hours ago

"You should think of your energy as if it's a luxury item. Not everyone can afford it." Credit: @femalequotient Image of Taylor Swift on a podcast #pwME #MySeveralWorlds #AutoimmuneFatigue #AutoimmuneDisease #PostExertionalMalaise

"You should think of your energy as if it's a luxury item.
Not everyone can afford it."

Credit: @femalequotient
Image of Taylor Swift on a podcast

#pwME #MySeveralWorlds #AutoimmuneFatigue #AutoimmuneDisease #PostExertionalMalaise

Tom Kindlon

@tomkindlon.bsky.social

15 hours ago

9/
“Saving energy isn’t about doing less with your life. It’s about creating the conditions where life can actually happen. Where your body isn’t spending everything it has just to keep up with unnecessary demands & where participation doesn’t require a crash afterward.”
#MEcfs #PwME #CFSME #CFS

Tom Kindlon

@tomkindlon.bsky.social

15 hours ago

4/

NAV’s lawyer:
“(Contd) People who believe in the biomedical model are just waiting for a pill, he claimed, & they are not open to other approaches, or motivated to try. “If they continue as they are now, he will never recover!”

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Tom Kindlon

@tomkindlon.bsky.social

16 hours ago

3/
“(Contd) (according to the lawyer, a view shared only by a small, peculiar group, and contrary to “general opinion”), which meant that they did not seek documented effective treatment* in the public health system”

*Comment: rehab/CBT/GET approaches are not evidence-based

#MEcfs #CFS #PwME

New London Boy 🏳️‍🌈🏳️‍⚧️

@newlondonboy.bsky.social

17 hours ago

a man is sitting in a chair with a bowl of popcorn in his lap . Alt: a man is sitting in a chair with a bowl of popcorn in his lap .

Sorry to hear that buddy. I'm not feeling great either. Hope the fatigue eases for you. 🫂
#CFS #pwME

Heidi ☕️ 🇩🇰 🏳️‍🌈

@hla72.bsky.social

19 hours ago

Had another rough night with a lot of pain, so I slept until 11 am CET.
Now having my coffee while watching Gardeners' World from last night. So soothing.
#chronicillness #chronicpain #mecfs #fibromyalgia #arthritis #spoonielife #pwme

Andrew Gifford

@andrewgiffordphoto.bsky.social

19 hours ago

What we cannot afford: Andrew Gifford on Glass

What we cannot afford - from my ME/CFS photo project

glass.photo/andrewgiffor...

ALT: Colour photo of a Queen Elizabeth mug stacked with used teabags

#Photography #MECFS #pwME #LongCovid #NHS #Welfare #Billionaires #Inequality

Chembu🌺🧶

@chembarathi.bsky.social

21 hours ago

A palm with a lot of tablets

✅ Melatonin
✅ Antidepressant working on melatonin receptor
✅ Seroquel
✅ Antidepressants for myalgia
Optional Benzo for the over exertion days!Still sleep is nowhere to be found!I might have judged the alcohol and drug addicts in my family a little too much to end up exactly like them #pwme

Tom Kindlon

@tomkindlon.bsky.social

1 day ago

Pipeline-optimized machine learning for chronic fatigue syndrome diagnosis: A lightweight, interpretable model using blood biochemical and metabolomic data — Li et al. UK Biobank data, with self-reported diagnosis. "Our analysis reveals that total protein (TP), vitamin D (VD), total bilirubin (TBIL), urea, and alkaline phosphatase (ALP) are the five biomarkers with the highest contribution to the prediction of CFS risk."

Pipeline-optimized machine learning for chronic fatigue syndrome diagnosis: A lightweight, interpretable model using blood biochemical & metabolomic data

www.sciencedirect.com/science/arti...

Screenshot from Science for ME update

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Tom Kindlon

@tomkindlon.bsky.social

1 day ago

Some people with Long COVID and ME have found SGB to be helpful while others have found no effect or a worsening of symptoms. Dr Zeest Khan, an anesthesiologist and Long COVID patient/advocate, has posted a very helpful video that covers the procedure, how it works, what symptoms may be improved, the side effects and risks, and her own personal experience with SGB. She also recorded a podcast about SGB. Both can be found on Dr. Khan's website.

Stellate Ganglion Block (SGB)

longcovidmd.com/videos

Screenshot from Massachusetts ME/CFS & FM Association March 2026 Newsletter
massmecfs.org/resources/ne...

Comment from Tom: I haven't looked at this video or listen to the podcast myself so far.

#LongCovid #MEcfs #CFS #PwME

Tom Kindlon

@tomkindlon.bsky.social

1 day ago

Long COVID and ME/CFS on the Front Page of the Boston Globe The Boston Globe ran an excellent front-page story by Felice Freyer about Samantha Crausman of Rehoboth MA, who has severe Long COVID and ME/CFS. The article quotes Lucinda Bateman of the Bateman Horne Center and Amy Proal of PolyBio Research. We're sure any reader of this newsletter will identify with this quote from Samantha's physician father, Dr. Rob Crausman: "If I have one more person tell me that she just needs to do yoga, I will lose my mind." Please Note: The article is behind a paywall for Boston Globe digital subscribers only, but we felt it was important to include for ME/CFS awarenerss.

Long COVID and ME/CFS on the Front Page of the Boston Globe

www.bostonglobe.com/2026/02/20/m...

Screenshot from Massachusetts ME/CFS & FM Association March 2026 Newsletter
massmecfs.org/resources/ne...

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

Tom Kindlon

@tomkindlon.bsky.social

1 day ago

George and his ME/CFS 3-panel cartoon 1st panel: George puts on his fitbit and has this thought bubble: "ahh… The fit bit my doctor recommended! This should help me avoid postexertional malaise". In the background you see a postal delivery person walking back to their van 2nd panel: next morning… We see George getting out of bed in his pyjamas with this thought bubble "it's set to beep when my heart rate reaches 110… When I need to stop and rest…" 3rd panel: George is still in his bedroom and his pyjamas but now standing up and is fitbit peeps 3 times

5/
More from a series of comic strips about life as a person with ME/CFS.

"George and His ME/CFS"

🎨Rick Menard

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Tom Kindlon

@tomkindlon.bsky.social

1 day ago

Hope to see a few of you at this 👋.

#MEcfs #LongCovid #CFS #PwME

Irish ME/CFS Association

@irishmecfsassoc.bsky.social

1 day ago

Informal ME/CFS social meet up in Dublin 2:30 PM-4 PM Friday, March 27 The Bell Bar & Restaurant, Dublin 15, D15 EW77 https://www.thebell.ie All welcome incl. relatives & people with long Covid Buy your own food +/or drink Register for any updates (in case cancelled - hasn't happened so far): tomkindlon@irishmecfs.org Photo of Tom Kindlon Irish ME/CFS Association for Information. Support & Research logo

Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon.bsky.social on Friday, March 27

Hopefully we’ll see some of you there
irishmecfs.org/blog/friday-...

Carers/parents/similar welcome.

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

Fred Rossi

@darthfoo.bsky.social

1 day ago

Why I Can’t Just Meet You for Dinner The Reality of Post-Exertional Malaise

Crashed hard, been gone weeks. Severe post-exertional malaise. Not resting by choice, resting because the alternative is worse. “Why I Can’t Just Meet You for Dinner” explains the economics of it.
#PEM #LongCOVID #MECFS #PwME

substack.com/@darthfoo/p-...

Tom Kindlon

@tomkindlon.bsky.social

1 day ago

Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS” 2 Comments / By David Tuller / 13 March 2026 By David Tuller, DrPH A recent disability case in Norway provides a good example of why the draft of a new guideline for “long-term fatigue—including ME/CFS” is so problematic.

Very sad to read of this 23-year-old with severe ME, ill since age 4.

Authorities are trying to claim that improvement/recovery is possible with the right attitude! ☹️

An example of the problem biopsychosocial models for ME/CFS cause.

virology.ws/2026/03/13/t...

#MEcfs #PwME #CFS #SevereME

Katy B

@katybrc.bsky.social

1 day ago

The BPS model of M.E. did not arise from scientific evidence. It emerged from a convergence of:
medical uncertainty - due to deliberate lack of funding for biomedical #ME research, institutional power, economic incentives & historical biases about women’s illness.

#pwME