Lmst

“More on the Controversy over Invisible Illness” by David Tuller

https://virology.ws/2026/02/16/trial-by-error-more-on-the-controversy-over-invisible-illness/

Screenshot from latest Science for ME weekly update

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs

Trial by Error by David Tuller “More on the Controversy over Invisible Illness”
A good summary of the debate on the book "Invisible Illness: A History from Hysteria to Long COVID" by medical anthropologist Emily Mendenhall. “...Mendenhall’s vision does not include a call for ramping up research programs into biological causes and treatments of these complex chronic conditions. That’s what patients—at least the ones I know—desire more than anything. Given this absence as well as the book’s overall orientation, it is not surprising that many in the patient community have flatly rejected it.”

(UK) “Six months since the publication of the Final Delivery Plan for ME” blog post by by #ThereForME

Links:
https://www.thereforme.uk/p/campaign-update-30-six-months-since

https://www.gov.uk/government/publications/mecfs-the-final-delivery-plan/myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs-the-final-delivery-plan

Screenshot from latest Science for ME weekly update

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs

UK #ThereForME “Six months since the publication of the Final Delivery Plan for ME”
The UK government policy paper was published on 22 July 2025. In a blog post #ThereForME summarise developments since then:
“What progress has been made? Are there signs the plan is making a difference? Today we’re taking a whistlestop tour of the latest developments in three priority areas.”
Blog | Plan | Thread

M.E.: "How it can shrink one's world, bit by bit" by Kornelia Paulsen (who no longer appears to be on X or IG).

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #SevereME @mecfs

artist's impression of life: with 5 sections: before ME; mild ME; moderate ME; severe ME; very severe ME

4/

Patient Communication

From:
"Hospital Care Plan for Severe-Very Severe ME/CFS and long COVID (and associated conditions, e.g.: dysautonomia)"

https://anzmes.org.nz/wp-content/uploads/2025/07/Hospital-Care-Plan-for-Severe-Very-Severe-ME_CFS-and-long-COVID-1.pdf

#SevereME #MEcfs #LongCovid #CFS #PwME @longcovid @mecfs

Actions to take: ● Schedule their day with minimum contact required from staff. Some may need lots of physical assistance while others need to be left alone to sleep and rest. More than one specialist a day can cause stress and deterioration. ● Incorporate alternative methods of contact such as email, phone typing, cue cards, and advocates.

To read this whole article you must register with an email address (there's a free tier available).

https://quillette.com/2026/02/22/the-cost-of-indifference-me-cfs-cdc-public-health/

I think it's worth reading, but for those who don't want to register I tried to include several of the important quotes in the posts above.

(end of thread)

@mecfs @longcovid

#MEcfs #LongCovid #PwME #PwLC #ChronicIllness

More quotes:

"ME/CFS has been psychologised by a framework known as the biopsychosocial model
...

But the PACE study has since been conclusively debunked."

David Tuller has written at length on virology.ws about the many problems with the PACE trial:

https://virology.ws/2015/10/21/trial-by-error-i

@mecfs @longcovid

#MEcfs #PwME #PEM #PACEtrial

The PACE trial, conducted in 2011 to examine ME/CFS, was the most expensive study of the disease at the time, partly funded by the Department for Work and Pensions and then published in the Lancet. It purported to demonstrate that ME/CFS patients could recover with a regime of therapy and exercise designed to break bad mental and physical habits. PACE was uncritically accepted by public agencies and media around the world, and it would be used to influence international treatment guidelines for ME/CFS.

But the PACE study has since been conclusively debunked. Its multiple faults include data manipulation, questionable methodology, and conflicts of interest. College courses now use it as an object lesson in how not to conduct a clinical trial, and a member of the UK parliament called it “one of the greatest medical scandals of the 21st century.”

Among its many absurdities:

The study included a bizarre paradox: participants’ baseline scores for the two primary outcomes of physical function and fatigue could qualify them simultaneously as disabled enough to get into the trial but already “recovered” on those indicators–even before any treatment. In fact, 13 percent of the study sample was already “recovered” on one of these two measures at the start of the study.

The phrase "Millions Missing" has often been used because people with ME/CFS are mostly too sick to work and too sick to protest.

But it also means millions of doctors know nothing about ME/CFS and millions of dollars are missing from research funding.

https://quillette.com/2026/02/22/the-cost-of-indifference-me-cfs-cdc-public-health/

“Societal dismissal leads to scientific neglect,” writes Ed Yong in the New York Times

@mecfs @longcovid

#MEcfs #MillionsMissing #PwME

One of the reasons for these discrepancies is that much of the suffering experienced by ME/CFS patients remains invisible to the public. Some of the most severely ill patients are reclusive and too sick to protest, so we simply disappear from sight and are forgotten. And the symptoms of ME/CFS lie so far outside the realm of everyday experience that the illness can be difficult for healthy people to understand. The cognitive symptoms and loss of energy, meanwhile, make it difficult to explain what’s happening and it contradicts our intuitive understanding of disease, which is that the sufferer either gets better or he gets worse until he dies.

Great to see this new sympathetic and well-researched in-depth article 👍👏

https://quillette.com/2026/02/22/the-cost-of-indifference-me-cfs-cdc-public-health/

Note: only a portion of it is available initially; one needs to subscribe to a free email list to see the full piece

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs

1/

You show me a better platform+I’ll use it, but your choice between reading/walking/thinking is not equivalent to my choice between showering, eating+60mins to draw attention to the social processes that crippled+killed PhD-educated women who sought only to lead good lives #ShameOnYou #pwME #pwLC

The Boston Globe: “A doctor watches his 28-year-old daughter suffer from #longcovid. He clings fiercely to hope.”

https://www.bostonglobe.com/2026/02/20/metro/long-covid-young-woman-treatment/

Screenshot from latest Science for ME weekly update

Hashtags:
@longcovid
#PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs

From ME Research UK:

Researchers suggest that coxiella bacteria, commonly found in farm animals, may contribute towards the development of dysautonomia and ME/CFS: https://tinyurl.com/yvvd5mmr

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #qfever @mecfs

Dysautonomia, Coxiella, and ME/CFS Coxiella burnetii (the bacterium that causes Q fever) naturally infects farm animals, such as goats, sheep, and cows. In humans, it is suggested that it could contribute to post-infectious syndromes such as ME/CFS. According to researchers based in Serbia, dysautonomia (autonomic nervous system dysfunction) may play a role in chronic Coxiella-related disease. Methods: 100 participants (35 with ME/CFS) who demonstrated specific IgM antibodies to Coxiella burnetii, plus 56 healthy age- and sex-matched controls, were evaluated for autonomic function. Key finding: Dysautonomia was significantly more prevalent in the Coxiella group than in the control group. The researchers suggest "Coxiella burnetii infection may trigger persistent autonomic dysfunction, potentially contributing to the development of ME/CFS..." Miloyanoyi6, B.et al (2025). Autonomic Dysfunction in Patients with gra SEARCH Acute Infection with Coxiella burnetii. Pathogens, [online] RE UK INFORM. INFLUENCE. INVEST. SCO36942

From ME Research UK:

The NIHR and MRC held a showcase event for commercial and academic researchers, clinicians, and patient representatives with lived experience of the conditions in November 2025.

Their take on the discussions is now available - https://tinyurl.com/mrxb4rsf

#MEcfs #CFS #PwME @mecfs

From ME Research UK:

Professor Leonard Jason – a researcher and person with ME/CFS – has spoken to Brent Franson, presenter of the podcast Death Clock which is ‘devoted to understanding how transformative life change can add years to your life’.

Find out more: https://tinyurl.com/45h3p2e5

#MEcfs #PwME @mecfs

Abonnez-vous à notre newsletter mensuelle pour ne rien rater.
https://comprendrelem.fr/a-propos/newsletter2/

Découvrez sur le site comment vous pouvez participer !
https://comprendrelem.fr/

#pwME #paEM #MECFS #EMSFC

La revue Comprendre l’EM fait appel aux savoirs expérientiels des communautés de patient-es.

Elle relaie les savoirs issus des sciences humaines et sociales.

Elle propose un espace de réflexion et d’élaboration des connaissances, ensemble !

#pwME #paEM #MECFS #EMSFC

La revue Comprendre l’EM présente des savoirs scientifiques établis.

Elle se base sur les consensus internationaux et les travaux de rechercheur-es réputé-es.

Elle propose différents niveaux de complexité.

Et ce n’est pas tout !

#pwME #paEM #MECFS #EMSFC

On voit circuler de nombreuses spéculations sur l’EM.

On voit beaucoup d’incitations à l’auto-expérimentation.

Les informations fiables sont compliquées et difficiles d’accès. Surtout pour les personnes avec un handicap.

#pwME #paEM #MECFS #EMSFC

[Slogan : Savoirs]

Les informations sur l’Encéphalomyélite Myalgique (ou EM/SFC) sont souvent erronées.
Les notions de Malaise Post Effort ou de Pacing sont souvent mal comprises.

#pwME #paEM #MECFS #EMsfc

3/
See a summary post on this, "Disability Skepticism at Provincial Tribunals" (just over 1 page), in this newsletter
https://disabled.social/@tomkindlon/116110249991985899

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs

3/

"It is imperative the environment in the hospital setting does not induce PEM or exacerbate symptoms. Actions to take"

From:
"Hospital Care Plan for Severe-Very Severe ME/CFS & long COVID (& associated conditions, e.g.: dysautonomia)"

https://anzmes.org.nz/wp-content/uploads/2025/07/Hospital-Care-Plan-for-Severe-Very-Severe-ME_CFS-and-long-COVID-1.pdf

#SevereME #MEcfs #LongCovid #CFS #PwME @longcovid @mecfs

#PwME

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