Liz Covart, Ph.D. @lizcovart

104 posts46 participants19 posts today

**Tom Kindlon** @tomkindlon@disabled.social · 6m

Tom Kindlon @tomkindlon@disabled.social

Summary of the #UniteToFight2024 conference [first international conference on Long Covid and ME/CFS] by @katha1970

https://padlet.com/katha1970_/personal-collection-of-information-for-patients-with-complex-p20bhx4pb54x1may/wish/2998552241

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

Summary of the #UniteToFight2024 conference by @katha1970 (on Twi@er/X)
___________________________________________________________________________________________
version 5, last update: June 5th, 2024- 1 -
First International Conference on Long Covid and ME/CFS #UniteToFight2024
marks a turning point in efforts to combat this massive global health crisis
affecting more than 100 million people
Leading scientists, doctors and patients from around the world joined forces at the #UniteToFight2024
online conference on Long Covid and ME/CFS, which was held on May 15th and 16th, 2024, in searching
solutions on how to combat the massive global health crisis associated with these highly debilitating
diseases affecting already far more than 100 million people worldwide for both diseases combined, with
many more hundreds of millions of new cases expected in the next few years.
With a record number of more than 10.000 registered participants and including the most renowned
experts in both fields, this community-driven and solely crowd-funded conference marked a milestone and
a turning point, giving hope to countless patients around the world desperately waiting for help.

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 22m

22m

Tom Kindlon @tomkindlon@disabled.social

16/

From "Shame, Psychology and ME" by Richard and Katharine Cheston

#MEcfs #PwME
@mecfs

New education on this topic is required to reflect:
⦁ The huge paradigm shift in understanding of the illness
⦁ Up-to-date international biomedical research and education on ME/CFS
⦁ The experience of patients whose lives are completely changed by the illness

(Nina Muirhead, expert testimony to NICE, 2019)

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 1h

Tom Kindlon @tomkindlon@disabled.social

15/

From "Shame, Psychology and ME" by Richard and Katharine Cheston

#LongCovid #MEcfs @mecfs

Although exact numbers are not known, a significant percentage of people with Long Covid present with symptoms of ME. The long history of the psychologising of ME has had and continues to have devastating consequences. As psychologists, as healthcare professions and as people, we will encounter and work with people with Long Covid. We can, and must, inform ourselves and challenge misinformation about ME, Long Covid and other chronic health conditions, and the psychologising of a truly devastating physical health condition.
(Keith and Gahan, 2024)

**Tom Kindlon** @tomkindlon@disabled.social · 1h

Tom Kindlon @tomkindlon@disabled.social

The cancelled protocol for a new Cochrane review of exercise therapy for ME/CFS

https://www.s4me.info/threads/2025-the-2019-24-cochrane-larun-review-exercise-therapy-for-cfs-including-iag-campaign-petition-comments-and-articles.42305/page-36#post-593370

From the latest Science for ME weekly update

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

Cochrane review Exercise therapy for ME/CFS

The cancelled protocol for a new review
An author group was appointed in 2020 to write a new protocol and review to replace the 2019 review, Exercise Therapy for CFS by Larun et al. Cochrane announced in December 2024 that they had rejected the protocol, and cancelled the new review process.

Letter to the Cochrane Board
Two members of the author team, Mary Dimmock and Todd Davenport, have written to Dr. Susan Phillips, Chair, Cochrane Governing Board. They express their shock at Cochrane's decision, reveal the lengthy process they went through with Cochrane to agree the protocol, with four revisions, question the grounds for Cochrane's decisions, and argue that Cochrane's rules should allow the review to be withdrawn on the grounds of harm. They conclude: "Accordingly, we call on Cochrane to immediately withdraw the Larun et al ME/CFS exercise review."
Thread with letter

**Chronic Illness Humor Funny** @ChronicIllnessHumor@mastodon.social · 3h

Chronic Illness Humor Funny @ChronicIllnessHumor@mastodon.social

knees weak, arms are heavy
just woke up, lying down already.
or whatever Eminem said

#chronicillnessmemes #chronicillnesshumor #chronicillness

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 3h

Tom Kindlon @tomkindlon@disabled.social

13/

From "Shame, Psychology and ME" by Richard and Katharine Cheston

#MEcfs #PwME @mecfs

Decision to release data from PACE trial (2016)
⦁ In its submissions QMUL made a number of accusations of harassment from patients, while QMUL’s expert witness characterized PACE trial critics as "young men, borderline sociopathic or psychopathic", remarks the Information Commissioner dismissed as "wild speculations".
⦁ When pushed to provide evidence of these threats and harassment under cross examination, witnesses speaking for QMUL were unable to do so, and ultimately conceded that "no threats have been made either to researchers or participants."
⦁ The tribunal found QMUL's assessment of activist behaviour to be, “grossly exaggerated” stating that “the only actual evidence was that an individual at a seminar had heckled Professor Chalder.” [Professor Chalder is a leading researcher in the PACE trial and a key witness for QMUL.]

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 4h

Tom Kindlon @tomkindlon@disabled.social

12/

From "Shame, Psychology and ME" by Richard and Katharine Cheston

#MEcfs #PwME @mecfs

The CBT model of ME and our experiences

⦁ The two consultants who saw Katharine (and probably some of those who saw Maeve Boothby O’Neil) framed ME as an illness in which maladaptive thoughts (worries, catastrophic beliefs about hyperventilation) lead to avoidance and other dysfunctional behaviours
⦁ We have also encountered them amongst our colleagues - “Katharine will get better when she wants to”
⦁ However, we saw no evidence that Katharine experienced catastrophic deconditioning. In addition to post-exertional fatigue she had many other symptoms which couldn't be accounted for by worrying (which anyway occurred as a consequence of the ME)
⦁ More generally, if recovery involves adjusting dysfunctional beliefs and behaviours and reversing the deconditioning, then this places those who do not make progress in a precarious psychological position.
⦁ You either get better (the model works) or you blame yourself (because the model cannot be wrong) – questioning self, self-blame and shame.

**Tom Kindlon** @tomkindlon@disabled.social · 5h

Tom Kindlon @tomkindlon@disabled.social

Latest @s4me News in Brief post has headlines & links to further reading for #MECFS, #LongCovid, & related news, advocacy & research from w/c March 10

Topics:
News, advocacy & articles
Coming events
Research news & commentary
& Published research

https://www.s4me.info/threads/news-in-brief-march-2025.43011/#post-594364

@mecfs @longcovid

Science for MENews in Brief - March 2025This thread has a Science for ME 'News in Brief' post for each week in March 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman....

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 7h

Tom Kindlon @tomkindlon@disabled.social

2/
Longer version of that extract:

"ME/CFS and PCC have similar, profound impacts on HRQoL [health-related quality of life] that warrant access to multidisciplinary disability and social support services."

#PASC #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@mecfs @longcovid @covid19 @novid@chirp.social @novid@a.gup.pe @auscovid19 #LongCovid

**Tom Kindlon** @tomkindlon@disabled.social · 7h

Tom Kindlon @tomkindlon@disabled.social

mtDNA deletion m.8753_16566 with < 10 % heteroplasmy in muscle and isolated complex-V dysfunction misinterpreted as chronic fatigue syndrome over 21-years

https://www.sciencedirect.com/science/article/pii/S1807593225000304?via%3Dihub

Case report of a patient with ME/CFS & ATP6 gene deletion in some muscle cell mitochondria.

#MECFS @mecfs

www.sciencedirect.commtDNA deletion m.8753_16566 with < 10 % heteroplasmy in muscle and isolated complex-V dysfunction misinterpreted as chronic fatigue syndrome over 21-years

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 7h

Tom Kindlon @tomkindlon@disabled.social

"Viewing the educational module early in training years is a ﬁrst step to broadening awareness of ME/CFS and potentially impacting future health care providers’ knowledge, attitudes, and beliefs about this and related postinfectious syndromes."

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis
@mecfs

**Tom Kindlon** @tomkindlon@disabled.social · 9h

Tom Kindlon @tomkindlon@disabled.social

NIH (USA):

A recording of the January 14 ME/CFS Advocacy Call is now available. It features a scientific presentation by Vikram Chib, PhD, and Agostina Casamento-Morales, PhD.

https://www.youtube.com/watch?v=M2WDDNeMKxE

#MEcfs #CFS @mecfs

YouTubeNIH ME/CFS Advocacy Call - January 14, 2025By NIHNINDS

**Tom Kindlon** @tomkindlon@disabled.social · 9h

Tom Kindlon @tomkindlon@disabled.social

The International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME) is calling on researchers to submit abstracts for their 2025 Research & Clinical Conference. The submissions deadline: May 5, 2025, at 5 PM ET.

https://www.linkedin.com/pulse/iacfsme-2025-conference-prepare-amazing-abstract-submission-iacfsme-vwk3c/

#MEcfs #CFS #PwME @mecfs

www.linkedin.comIACFS/ME 2025 Conference: Prepare an Amazing Abstract for Submission!Here are some tips to keep in mind when preparing your research abstract for submission to the 2025 IACFS/ME Research and Clinical Conference. Remember that the deadline for submissions is May 5, 2025, at 5 PM New York City time.

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · 10h

10h

Tom Kindlon @tomkindlon@disabled.social

11/

From "Shame, Psychology and ME" by Richard and Katharine Cheston

#MEcfs #CFS @mecfs

CBT model of ME (CBM)
⦁ “CFS may begin with a viral infection, which leads to symptoms such as fatigue or pain, which cause a sufferer to rest and become fearful of activity …. whereby avoidance behaviours lead to anxiety and depression, which exacerbate physiological and mental deconditioning” (Geraghty et al., 2019 based on Sharpe, 1993, 2007)
⦁ Led to two specific types of intervention
⦁ Graded exercise (“making fixed incremental increases in the time spent being physically active”)
⦁ NICE (2007) guidance - CBT addressed underlying causes of ME – it was a cure
⦁ Patient surveys show strong evidence of harm caused by GET (focused on avoidance) rather than pacing (listening from your body)
⦁ NICE 2021 – reassessed evidence – found quality “ranged from low to very low quality”.
⦁ Revised guidance - no longer recommended GET and changed role for CBT from curative to supportive/adjunctive.

**Brian Vastag** @brianvastag@sciencemastodon.com · 19h *

19h *

Brian Vastag @brianvastag@sciencemastodon.com

Oh, I'm on the front page of Rolling Stone right now, kinda. Guess I picked a bad moment to look at my phone. Don't be me. Don't look at your phone lol.

Photo is from #MEAction protest at White House, Sept. 2022, right after Biden said the pandemic was over.

Thanks @justyourluck for posting this.

#LongCovid #MEcfs #journalism

https://www.rollingstone.com/culture/culture-features/long-covid-five-years-1235296375/