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Reposted by Temme Tacsume

Science for ME (S4ME) @s4me.info · 21/06/2026

Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of June 15 - 21. s4me.info/threads/news... This week's highlight - WE&ME Projects announcement! www.weandmecfs.org/weme-projects/ #MEcfs #PwME #LongCovid #PwLC

weandmecfs.org

WE&ME Projects • WE&ME Stiftung

Scope of the Call This call is open to research teams that aim to advance our understanding of the biological mechanisms of Myalgic

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Reposted by Temme Tacsume

Suzanne Forbes aka Slurketta @suzanneforbes.bsky.social · 05/06/2026

Dear Germany/Austria #MECFS community, I have an urgent question for a Severe sufferer in Göttingen DE. We are looking for a doctor/ doctors who can arrange/prescribe the tube feeding or Künstliche Ernährung. The patient is only 21 and severely malnourished. #severeME

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Reposted by Temme Tacsume

Nick Brown @steamtraen.eu · 27/05/2026

I've been asked to help investigate several possibly fake clinical studies in Rheumatology. Some of the evidence is likely to be purely statistical, but some will require subject matter expertise. Does anyone know anyone in this field who might be interested in helping with integrity questions?

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Elana Levin @levin.bsky.social · 13/05/2026

the number of people disabled by ME and LC is massive. It is a crisis. We need more money than this invested. When we say #MillionsMissing we mean it. #MEAwarenessDay

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Reposted by Temme Tacsume

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 13/05/2026

An excellent blog by @simonmcg.bsky.social which explains what the £4.75 million that the UK government has given to Sequence ME and Long Covid will be used to do: mecfsresearchreview.me/2026/05/12/d... You can donate to the study here: www.actionforme.org.uk/research-cam...

mecfsresearchreview.me

DNA sequencing study to help pinpoint biology of ME gets £4.7m

The UK government has given nearly £5 million to fund full sequencing of the DNA of 6,000 people with ME using the best available technology. This will help scientists home in on what is really dri…

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Reposted by Temme Tacsume

Tom Kindlon @tomkindlon.bsky.social · 12/05/2026

"Major funding secured for Sequence ME & Long Covid, a DecodeMe project" (11 May 2026) "...£4.75m from the UK government..." www.actionforme.org.uk/major-fundin... The webpage includes more information on the project #MEcfs #PwME

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Phase 1 – Project Mobilisation (2 years)
-Building partnerships and securing funding for the next stages of the study
-Define Long Covid case criteria and gather expressions of interest for participation in the Long Covid arm of the study

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Phase 2 – ME/CFS sample sequencing (1 year)
sequencing 6000 ME/CFS samples- previously collected through DecodeME

Future phases (subjective to funding)

- Analyse data & compare versus controls
- Recruit 9k+ Long Covid participants & obtain their DNA
- Sequence & analyse additional 3k ME/CFS samples
- sequence & analyse 9k Long Covid samples

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Reposted by Temme Tacsume

Tom @desater.bsky.social · 12/05/2026

I was asked if I could use PastPuzzle’s reach to raise awareness about this terrible and overlooked disease. Of course! Join in on the daily history game and spread the word to your friends and family: www.pastpuzzle.de #mecfs #pastpuzzle #history #mecfsawareness #mecfaawarenessday

A square infographic with a dark background featuring a pale man lying on his side on a large brown pillow. He is wearing a sleep mask and heavy noise-canceling earmuffs, illustrating extreme sensitivity to light and sound.
The text at the top reads:
"When did the WHO first classify ME/CFS?"
Followed by the subtitle in italics: "The illness that likely affects more than 40 million people worldwide."
At the bottom, there is a grey call-to-action button that says: "GUESS THE YEAR IN FOUR ATTEMPTS!"
Small text at the very bottom credits the image: "Picture: Lea Aring and Deutsche Gesellschaft für ME/CFS".

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Temme Tacsume @tem-me.bsky.social · 10/05/2026

Let's hope there will be more good science like this for David Tuller to report in the near future. #ME/CFS #BetterScience

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Temme Tacsume @tem-me.bsky.social · 10/05/2026

Glad to see David Tuller's crowdfunding finally reached the goal again. Congratulations! And only now I realize there's a Wikipedia page on this excellent scientist, journalist and ally for people with #ME/CFS : en.wikipedia.org/wiki/David_T...

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Reposted by Temme Tacsume

ME/CFS Science @mecfsscience.org · 06/05/2026

1) 1) Interesting interview of Dr. Audrey Ryback by David Tuller. Her recent study showed that there are likely two age peaks for when people get ME/CFS. It helps to characterise ME/CFS as a unique clinical entity.

Screenshot of interview of Audrey Ryback by David Tuller on bimodal onset patterns in ME/CFS.

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Reposted by Temme Tacsume

Simon McGrath @simonmcg.bsky.social · 21/03/2026

Patients were central to the team that found ME/CFS is most likely to start in the teens and early middle age. Two age peaks is unusual for any disease and might help unravel ME's causes. academic.oup.com/ooim/advance... 1/ team credits to follow

academic.oup.com

Incidence age is bimodal for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, with higher severity burden for early onset disease

Abstract. Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome (ME/CFS), is a disease of uncertain origin. Studies of Norwegian health records have sugge

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ME/CFS Science @mecfsscience.org · 17/04/2026

David Tuller is a journalist/researcher who has written a lot of valuable analyses on the PACE trial and psychosomatic approaches to ME/CFS and Long Covid. He has, for example, pointed various flaws in research on exercise and CBT. You can support his work here 👇

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David Tuller @davetuller1.bsky.social · 04/04/2026

Now Trudie Chalder says "recovery from CFS" through CBT doesn't mean absence of symptoms and getting back to regular life but is more about accepting and coming to terms with chronic illness. Huh??? Isn't that acknowledging that CBT doesn't really produce "recovery"? virology.ws/2026/04/03/t...

virology.ws

Trial By Error: Professor Chalder Downgrades Definition of "Recovery" | Virology Blog

By David Tuller, DrPH President Trump’s words and actions are routinely mind-boggling but never surprising, given past experience. The same is true of paper ...

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David Tuller @davetuller1.bsky.social · 17/04/2026

Berkeley's final crowdfunder for Trial By Error has almost reached 150 donations and 25% of the goal!!! crowdfund.berkeley.edu/project/49720

crowdfund.berkeley.edu

Trial By Error: Final (Berkeley) Chapter 2026

Help UC Berkeley raise $75,000 for the project: Trial By Error: Final (Berkeley) Chapter 2026. Your gift will make a difference!

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