Lmst

Comment period is open for NIH-funded long covid clinical trials in their RECOVER-TLC program.

Of special interest to me is the stellate ganglion nerve block. Luke Liu, a pain medicine doc in Anchorage, pioneered SGBs (injection of lidocaine in the neck) for long covid. My late partner Beth Mazur & I traveled to Alaska in 2022 & worked with Luke. 1/2

#LongCovid #medicine #MEcfs #research

https://fnih.org/our-programs/recover-tlc-will-advance-long-covid-research/recover-tlc-clinical-trials/

Chart showing 4 NIH-funded clinical trials for long covid - GLP-1 receptor agonists (in protocol development), low-dose naltrexone (public comment period), barcitinib (recruiting), stellate ganglion nerve block (moving to public comment period).

Habt ihr mal versucht eine*n Jugendliche*n mit schwerem #MECFS und schweren psychischen Problemen, auf deren/dessen Wunsch hin (!), in einer KiuJu-Psychiatrie unterzubringen? Hahahahahahahahahahahaha! Einige werden völlig widersinnig eingewiesen und wir müssen sie wieder rausklagen (!), 1/3

#MECFS Wir betreuen Menschen mit Fußhebeschwäche.
Menschen, die im Rollstuhl sitzen, weil sie nicht mehr laufen können.
Menschen, denen Kot und Urin am Bein herunterlaufen, weil sie inkontinent sind.
Menschen, die mit einer Magensonde ernährt werden, weil sie nicht schlucken können.
Menschen, die ihre Augenlider nicht öffnen können, weil diese nicht mehr ansteuerbar sind.
Menschen, die ihre Hände nicht am Steuer des Autos halten können, weil offensichtlich die Muskulatur versagt.

Aktuell geht's mir nicht gut. Die Dysautonomie ist gerade besonders stark, merkwürdige Symptome rund um die Uhr.

Und das ausgerechnet in einer Woche, in der inoffiziell der Frühling erste Vorboten schickt.

Naja. Ich kann es nicht ändern und muss geduldig bleiben.

#MECFS #Dysautonomie

#InsideHealth on #BBCRadio4 is interesting this morning... for anyone with #MECFS #LongCovid... talking about research... where they are actually starting to understand what happens in the body...

“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.

The Science for ME forum has posted the latest News in Brief (Feb. 16 - 22), a weekly summary of ME/CFS and Long Covid news plus upcoming events:

https://www.s4me.info/threads/news-in-brief-february-2026.48741/#post-676171

@mecfs @longcovid

#MEcfs #LongCovid #ChronicIllness #Science4ME

Science for ME
Where Science and Community Meet
www.s4me.info

Habe mir jetzt nach vielen nachgrübeln tolle Accessoires für meinen Rollstuhl gekauft und bin echt happy das lila hätte ein bisschen dunkler sein können aber so komplett kann man es sich doch nicht aussuchen
Die bauchtasche soll Mittwoch ankommen die rollstuhldecke in einer Woche #disabled #mecfs

Foto von einer lilanen bauchtasche wie groß ist und viele Fächer hat

Bild von einer rollstuhldecke mit blumenmuster in lila Tönen

3/
“But as the 2015 documentary Forgotten Plague reveals, a bad disease name leads to a lack of scientific and cultural interest, the lack of interest means less funding for research, less research means we are unlikely to understand the disease, and the lack of understanding leads to a lack of treatments”
#mecfs @mecfs

2/
‪“The harms of the biopsychosocial model include placing severely ill and disabled patients in psych wards and pressing them into exercise regimes that made their health considerably worse. Social services have even taken sick children from their families for fear that the parents are confirming their child’s belief in a phantom illness‬”

@mecfs #mecfs

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

Last quote:

"Research into ME/CFS needs to be better funded everywhere as we pursue standardised treatments based on a better understanding of its pathophysiology.

The COVID-19 pandemic left millions more people in the throes of severe and untreatable immunological illness."

"And solving the puzzle of ME/CFS may yield unexpected benefits—the more we learn about conditions like these, the more we will understand other medical problems"

@mecfs @longcovid

#MEcfs #LongCovid #CovidIsNotOver

There is no reason that the story of this disease should be any less morally or medically compelling than the story of HIV/AIDS. Research into ME/CFS needs to be better funded everywhere as we pursue standardised treatments based on a better understanding of its pathophysiology. The COVID-19 pandemic left millions more people in the throes of severe and untreatable immunological illness. Many of them will never regain any semblance of a normal life. Whatever time and money is saved in the short term by ignoring this problem will eventually cost us more in material and moral terms. And solving the puzzle of ME/CFS may yield unexpected benefits—the more we learn about conditions like these, the more we will understand other medical problems that may be related in ways we cannot currently apprehend. The Epstein-Barr virus has already been implicated in MS and Alzheimer’s.

But we first have to admit that these conditions physically exist. As George Monbiot has observed, “[T]here are very large numbers of people suffering to an absolutely outrageous extent … with very long term conditions that have absolutely horrendous impacts on their well being, and the fact this is not one of our very top medical priorities is itself a massive scientific scandal.” Such is the sad and curious case of the chronic fatigue syndrome.

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.

ME/CFS research is badly underfunded:

"Despite decades of evidence of ME/CFS’s biological roots, life-saving medical research and treatment has been hindered by the lingering view among doctors, researchers, and the general public that the disease is simply a product of the patient’s attitude and imagination.
...
In 2024, just US $10–13 million was earmarked for research into ME/CFS, and the total was even lower in 2025."

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

@mecfs @longcovid

#MEcfs #LongCovid #Research

Despite decades of evidence of ME/CFS’s biological roots, life-saving medical research and treatment has been hindered by the lingering view among doctors, researchers, and the general public that the disease is simply a product of the patient’s attitude and imagination. Although major public-health agencies now acknowledge the existence of ME/CFS, and although the disease is estimated to cost the US between US$18–50 billion a year in lost labour and medical expenses, it still receives very little research funding. In 2024, just US$10–13 million was earmarked for research into ME/CFS, and the total was even lower in 2025. (For context, in fiscal year 2022, Parkinson’s disease received US$259 million in research funding from the NIH.)

In 2015, a landmark report by the National Academy of Medicine revised the prevailing position of public-health agencies by acknowledging that ME/CFS is a severely disabling multi-system disorder of the body and brain that devastates millions of lives in the US and around the world.

RE: https://disabled.social/@tomkindlon/116120038995804732

Doctors need ME/CFS education!

"The explosion of ME/CFS cases during and after the COVID-19 pandemic appears to confirm a longstanding hypothesis that the condition usually emerges from an immune insult that attacks the nervous system."

"A literature review in 2020 found that between a third and half of all general practitioners in the UK do not even consider the disease to be a distinct clinical condition, and those that do have no idea how to treat it"

@mecfs
@longcovid

#MEcfs #LongCovid

#MEcfs

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