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@tomkindlon.bsky.socialSep 9, 2026, 5:36 PM

I’m sure I can speak for the PACE Trial investigators [Peter White, Michael Sharpe & Trudie Chalder] when I say they love when the re-analyses are highlighted online. 😜 #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

@meactnet.bsky.socialSep 9, 2026, 4:31 PM

The CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call is on Sept. 18th at 3:00 pm ET. Register: https://ow.ly/iV8W50ZLwx3

Guest speaker: Nancy Klimas, MD. Also featuring program updates from CDC's ME/CFS program staff and a Q&A.

#pwME #MECFS #CDC

Announcement for CDC ME/CFS SEC Call on September 18, 2026, from 3 to 4:30 pm ET with registration required. Photo at bottom shows a person on their couch attending an online meeting with a laptop. Blue background with orange accents. Text: CDC ME/CFS SEC Call Featuring a presentation Dr. Nancy Klimas, Director of the Institute for Neuro-Immune Medicine at Nova Southeastern University. Also featuring program updates from CDC's ME/CFS program staff and a Q&A.
@stpaulsbay.bsky.socialSep 9, 2026, 3:45 PM

I ache every day knowing that people with #ME/CFS feel trapped, believing there is no escape from the prison of their suffering. There is hope, and the science is real. Please share, advocate for trials and help us break down these walls. 🧵👇 #MECFS #pwME

@tomkindlon.bsky.socialSep 9, 2026, 2:53 PM

2/
I very rarely post on LinkedIn these days but decided to do a longer post today on this.

With a lot of researchers posting less often if at all on X, more are communicating via LinkedIn.

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Tom KindlonTom Kindlon • YouYou Assistant chairperson, Irish ME/CFS AssociationAssistant chairperson, Irish ME/CFS Association 8m • 8 minutes ago • Visible to anyone on or off LinkedIn Today marks the 10th anniversary of a little known but important anniversary in the ME/CFS world. Ten years ago a psychiatrist, Peter White, of Queen’s University of London was forced to release some data from the PACE Trial he led which cost £5 million of UK taxpayers’ money (funding was received approximately two decades ago so it is the equivalent of around £9 million today). The investigators themselves dubbed this the “definitive” trial of graded exercise therapy and cognitive behaviour therapy for CFS. The data revealed, using the definition for the recovery the investigators committed to in their own published protocol, that neither CBT nor graded exercise therapy led to an increased rate of recovery. The PACE Trial investigators had been desperate for this data not to be released, with over £200,000 spent on legal fees fighting a Freedom of Information request from an Australian patient, Alem Matthees. Like many of us, Alem was desperate to get the data rather than relying on the very questionnable spin/hype the investigators had been presenting. The PACE Trial investigators had vigorously, successfully fought other FOI requests relating to the recovery data. Alem effectively became an FOI expert and in a David-vs-Goliath battle, he won the case. Unfortunately all the effort badly affected his health and he has been bedbound with very severe ME since. Anyway the data allowed a team including myself to reanalyse the trial. The image is a screenshot from our main reanalysis paper. This FOI case and subsequent reanalyses played a significant part in guidelines for ME/CFS being changed in the UK and elsewhere. A lot more could have been said but I thought I would keep it brief for busy LinkedIn users.
@minetodo.bsky.socialSep 9, 2026, 2:37 PM

As you are able, please give to this new Friends of Cynthia Johnson Fall 2026 GoFundMe. Timely help is greatly needed! And sharing with others would be greatly appreciated. Thank you for your kindness and help! 💛
www.gofundme.com/f/Friends-of...
#StandByMEcfs #StillSickStillFighting #pwME #MEcfs

@katybrc.bsky.socialSep 9, 2026, 1:43 PM

Very grateful to be able to be using Visible & after an overnight score of 1 🙁, feeling so aware that pacing isn't always possible for #pwME & that so much of our lives is out of our control at times & there's nothing we can do to mitigate the impact of that on our health
www.makevisible.com

@swastrosarah.bsky.socialSep 9, 2026, 11:22 AM

Seeing how #pwME #LongCovidME at all life stages are routinely neglected and mismanaged by @england.nhs.uk - in several cases unto death (search PFD reports for ME or CFS) - if this Bill passes it will legitimate every known prejudice against disabled persons in sanctioning premature deaths.
Fascism

@swastrosarah.bsky.socialSep 9, 2026, 11:04 AM

Nothing has changed 9 years later.
Most #pwME are adults and get tortured the same way. It's an abuse of their rights.
Symptoms of #PEM are not recognised by NHS providers in any case as @nhsenglandceo.bsky.social neglects to inform them. We know why.
Justice4ME.uk is challenging it's lawfulness.

@tomkindlon.bsky.socialSep 8, 2026, 11:15 PM

10 years today, after a David vs Goliath FOI legal battle that damaged Alem Mathees, White et al were forced to release data from PACETrial (that cost UK taxpayers £5M) showing graded exercise therapy & CBT didn’t lead to an increased recovery rate for CFS.

Please remind the world
#MEcfs #PwME #CFS

Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT Carolyn E Wilshire 1 , Tom Kindlon 2 , Robert Courtney 3 , Alem Matthees 4 , David Tuller 5 , Keith Geraghty 6 , Bruce Levin 7 Affiliations Expand PMID: 29562932 PMCID: PMC5863477 DOI: 10.1186/s40359-018-0218-3 Abstract Background: The PACE trial was a well-powered randomised trial designed to examine the efficacy of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome. Reports concluded that both treatments were moderately effective, each leading to recovery in over a fifth of patients. However, the reported analyses did not consistently follow the procedures set out in the published protocol, and it is unclear whether the conclusions are fully justified by the evidence. Methods: Here, we present results based on the original protocol-specified procedures. Data from a recent Freedom of Information request enabled us to closely approximate these procedures. We also evaluate the conclusions from the trial as a whole.
@tomkindlon.bsky.socialSep 8, 2026, 6:48 PM

Comprehensive review of myalgic encephalomyelitis/chronic fatigue syndrome

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

s4me.info/threads/comp...

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS

Comprehensive review of myalgic encephalomyelitis/chronic fatigue syndrome — Jeyaraman et al Opinion. "To address the challenges of the unique features, complexity and heterogeneity of ME/CFS, strong partnerships with patients are crucial for the design and implementation of research." Article | Thread
@meactnet.bsky.socialSep 8, 2026, 4:24 PM

Deadline: TONIGHT Sept. 8th. 11:59 pm ET.

#MEAction is excited to be partnering with the Writers Guild Initiative (WGI) again to offer creative writing workshops for people with ME and Long COVID.
30 slots available.

DETAILS: https://ow.ly/nTJb50ZGCFF

Thank you, WGI!

#PwME #PwLC #MECFS

Notebook page background with text announcing Writers Guild Initiative writing workshops with a September 8 application deadline, flanked by blue and pink pens. Logos of MEAction and WGI at the bottom.
@tomkindlon.bsky.socialSep 8, 2026, 4:06 PM

10/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME

COGNITIVE DYSFUNCTION (BRAIN FOG) IN ME/CFS "It is like my IQ dropped 40 points. I used to be intelligent, but now I don't understand simple things anymore. I feel so stupid and insecure because of this. I have to check everything I do to see if it is correct." R ElidU CH SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 8, 2026, 2:39 PM

9/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME

COGNITIVE DYSFUNCTION (BRAIN FOG) IN ME/CFS "I lose words - just can't find them. I also lose the ability to form sentences and speak properly when I've "overdone' it. Overdoing it is always something very small - like talking too long with friends or standing up too long washing-up etc...." Lith RESLEJAIICH SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 8, 2026, 1:27 PM

9/
Impact of cognitive dysfunction in ME/CFS from ME Research UK

Careers are impacted, cherished hobbies become exhausting, and relationships grow strained.

www.meresearch.org.uk/the-experien...

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME

Impact of cognitive dysfunction (brain fog) in ME/CFS "My PhD and academic career are on long term hiatus because of ME/CFS, and one of the biggest factors is the brain fog. I cannot properly concentrate on anything that requires actual brain input for more than 20 minutes before both my mind and body shut down and I am useless for hours following..." Response from ME Research UK Symptom Saturday Cognitive Dysfunction Survey aldrA RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 8, 2026, 12:54 PM

New:

Stigmatization in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A scoping review

psycnet.apa.org/record/2028-...

"Individuals with ME/CFS can be profoundly affected by stigmatization"

#MEcfs #PwME #CFS

Abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe chronic, multisystemic disease characterized by postexertional malaise, cognitive impairments, and pain. There is no curative treatment yet. Stigmatization is prevalent in several chronic illnesses, impacting patients’ quality of life and health outcomes. This review aimed to examine the types and effects of stigmatization experienced by individuals with ME/CFS. This scoping review followed the Preferred Reporting Items for Systematic review and Meta-Analysis extension for Scoping Reviews guidelines. A systematic literature search was executed across six electronic databases, complemented by citation searching. The screening was performed independently by two researchers. We included 44 studies in this review. The most commonly assessed type of stigma was perceived stigma (n = 7); however, the majority of studies (n = 33) did not specify the type of stigma assessed. Our findings showed that not only individuals with ME/CFS can be affected by stigmatization but also people in their social circles such as friends and family members. Stigmatization was reported in various areas of life, but the most frequently identified issue were stigmatizing experiences by health care professionals such as physicians. Stigmatization was found to contribute to poorer health outcomes, delays in diagnosis, and broader personal and societal consequences. Individuals with ME/CFS can be profoundly affected by stigmatization. Further research should investigate the experiences of children and (very) severely ill patients. Research is also needed to develop strategies to reduce stigmatization in health care and other settings and to improve the quality of care for individuals with ME/CFS. (PsycInfo Database Record (c) 2026 APA, all rights reserved)
@tomkindlon.bsky.socialSep 8, 2026, 11:39 AM

“Trial By Error: Newly Knighted Anil van der Zee @anilvanderzee.bsky.social Discusses his Royal Honor” By David Tuller @davetuller1.bsky.social

virology.ws/2026/09/06/t...

#MEcfs #PwME #SevereME

Trial By Error: Newly Knighted Anil van der Zee Discusses his Royal Honor 4 Comments / By David Tuller / 6 September 2026 By David Tuller, DrPH A few days ago, I posted a blog about how Anil van der Zee, a bedbound Dutch ME/CFS patient, had been awarded a royal honor in recognition of the many years he has pushed hard to correct misinformation, debunk bad research, organize educational events, and on and on. Amsterdam mayor Femke HalsemaIn presented the award to him in person in his darkened flat. In my blog, I posted a letter I had submitted in support of the community-based effort to obtain the royal honor for Anil. (Athough he is now formally a knight in the Order of Orange-Nassau, I was relieved to find out that we do not need to call him Sir Anil.) I recently sent Anil a few questions about this well-deserved award. He offered a thoughtful, nuanced and clear-eyed view of what the award means, both to him and the larger community. Below is the interview, which has been lightly edited.
@tomkindlon.bsky.socialSep 8, 2026, 10:01 AM

8/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME

COGNITIVE DYSFUNCTION (BRAIN FOG) IN ME/CFS R6IESOArH SCO36942 "Head full of cotton wool." INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 7, 2026, 10:37 PM

8/
Impact of cognitive dysfunction in ME/CFS from ME Research UK

Careers are impacted, cherished hobbies become exhausting, and relationships grow strained.

www.meresearch.org.uk/the-experien...

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME

Impact of cognitive dysfunction (brain fog) in ME/CFS "My family are used to it, after 20 years. They just help me as much as possible. I am very grateful for them. If I am out, it is more obvious that I struggle. When I talk to people, and can't find words, or say something wrong, I get looks of pity, or confusion. I really don't like the looks of pity." Response from ME Research UK Symptom Saturday Cognitive Dysfunction Survey tri RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
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