Science for ME online forum
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scienceforme.bsky.social
Science for ME online forum
@scienceforme.bsky.social
1.8K followers 27 following 500 posts
We are an independent, patient-led, international discussion forum (www.s4me.info) for people with ME/CFS and the carers, clinicians, scientists and advocates who support us.

This account is maintained on a part-time basis by patients.
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scienceforme.bsky.social
Science for ME online forum @scienceforme.bsky.social · 5d
Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Nov. 3 - 9.

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

www.s4me.info/threads/news...
News in Brief - November 2025
This thread has a Science for ME 'News in Brief' post for each week in November 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
scienceforme.bsky.social
Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Nov. 3 - 9.

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

www.s4me.info/threads/news...
News in Brief - November 2025
This thread has a Science for ME 'News in Brief' post for each week in November 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
November 9, 2025 at 7:59 PM
scienceforme.bsky.social
Our latest News in Brief post (in 2 parts this week) has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Oct 27 - Nov 2.

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

www.s4me.info/threads/news...
News in Brief - October 2025
This thread has a Science for ME 'News in Brief' post for each week in October 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
November 3, 2025 at 12:36 AM
scienceforme.bsky.social
Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Oct. 20 - 26.

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

www.s4me.info/threads/news...
News in Brief - October 2025
This thread has a Science for ME 'News in Brief' post for each week in October 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
October 26, 2025 at 9:03 PM
scienceforme.bsky.social
Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Oct. 13 - 19.

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

www.s4me.info/threads/news...
News in Brief - October 2025
This thread has a Science for ME 'News in Brief' post for each week in October 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
October 20, 2025 at 3:16 PM
Reposted by Science for ME online forum
tomkindlon.bsky.social
5-page @scienceforme.bsky.social post-exertional malaise ( #PEM ) fact sheet
www.s4me.info/docs/PEM_Fac...

Headings:
-Characteristics of PEM
-Symptoms of PEM
-Exertion and other PEM triggers
-Effects of exertion that are not PEM
-Living with PEM
-Examples of PEM
-Research on PEM

#MEcfs #CFS #PwME
Logo: Science for ME: Where science and ME/CFS community meet Post-exertional malaise (PEM) Key points  People with ME/CFS have episodes when they are much more ill than usual following physical or mental exertion. This is called post-exertional malaise, or PEM.  PEM is a hallmark of ME/CFS and is important for diagnosis  Activities like a short walk or reading a few pages may trigger PEM. For the most severely ill, even chewing may trigger it. For many, light, sound and other sensory stimuli also trigger PEM. Often it is the combined effect of all activities and stimuli over a day or more that triggers PEM.  PEM usually starts hours or a day or two after it is triggered and can last for hours, days, weeks or longer. During this time, a person cannot do as much as usual and needs to rest.  There is no effective treatment for PEM.  PEM is not the same as the fatigue and muscle soreness anyone can experience after more activity than usual.
October 11, 2025 at 4:46 PM
scienceforme.bsky.social
Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Sep 29-Oct 5.

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

www.s4me.info/threads/news...
News in Brief - October 2025
This thread has a Science for ME 'News in Brief' post for each week in October 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
October 5, 2025 at 11:07 PM
Reposted by Science for ME online forum
tomkindlon.bsky.social
Description from the Science for ME @scienceforme.bsky.social weekly update:

0A clear article explaining how a genome wide association study gives pointers to what may be causing ME/CFS, takes a closer look at some of the DecodeME findings and describes next steps.”
#MEcfs #PwME #CFS
mecfsskeptic.bsky.social ME/CFS Science @mecfsskeptic.bsky.social · Oct 4
1) We’ve written an article about the DecodeME results: what the study measured, what the results show, and why its findings are important.
October 5, 2025 at 11:51 AM
scienceforme.bsky.social
Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Sep 22-28.

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

www.s4me.info/threads/news...
News in Brief - September 2025
This thread has a Science for ME 'News in Brief' post for each week in September 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
September 28, 2025 at 11:26 PM
scienceforme.bsky.social
Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Sep 15 - 21.

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

www.s4me.info/threads/news...
News in Brief - September 2025
This thread has a Science for ME 'News in Brief' post for each week in September 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
September 21, 2025 at 11:02 PM
scienceforme.bsky.social
Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Sep 8-14.

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

www.s4me.info/threads/news...
News in Brief - September 2025
This thread has a Science for ME 'News in Brief' post for each week in September 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
September 14, 2025 at 9:12 PM
scienceforme.bsky.social
Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Sep 1 - 7.

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

www.s4me.info/threads/news...
News in Brief - September 2025
This thread has a Science for ME 'News in Brief' post for each week in September 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
September 7, 2025 at 10:25 PM
Reposted by Science for ME online forum
meassociation.org.uk
The ME Association are pleased to announce that we have awarded Decode ME the Howes-Goudsmit Award 2025 for their extensive work and commitment to their genome-wide association study.

Find out more: https://meassociation.org.uk/ir3e

#MECFS #pwME #SevereME #MyalgicE #DecodeME #HowesGoudsmitAward
The ME Association awards Decode ME the Howes Goudsmit Award 2025 - The ME Association
The ME Association are pleased to announce that we have […]
meassociation.org.uk
August 29, 2025 at 10:11 AM
Reposted by Science for ME online forum
decodemestudy.bsky.social
As we move into the next phase of our study, we would like to say a huge thank you. Going forwards, we will no longer be able to respond to emails & check social media.

Stay up to date through our email list - sign up at the bottom of our new homepage: shorturl.at/46QSk
DecodeME graphic. In the centre it says 'Thank you' in white cursive writing and beneath it 'from DecodeME'.
August 29, 2025 at 10:25 AM
scienceforme.bsky.social
Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Aug. 25 - 31.

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

www.s4me.info/threads/news...
News in Brief - August 2025
This thread has a Science for ME 'News in Brief' post for each week in August 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
August 31, 2025 at 9:43 PM
scienceforme.bsky.social
Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Aug. 18 - 24.

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

www.s4me.info/threads/news...
News in Brief - August 2025
This thread has a Science for ME 'News in Brief' post for each week in August 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
August 24, 2025 at 8:49 PM
scienceforme.bsky.social
Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Aug. 11 - 17.

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

www.s4me.info/threads/news...
News in Brief - August 2025
This thread has a Science for ME 'News in Brief' post for each week in August 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
August 17, 2025 at 10:23 PM
scienceforme.bsky.social
Our latest News in Brief post has headlines & links to further reading for #MECFS & #LongCovid news, advocacy, and research for the week of Aug 4 - 10.

Don't miss the news about the #DecodeME initial DNA results!

There's also news about #SevereME Day, Aug 8.

www.s4me.info/threads/news...
News in Brief - August 2025
This thread has a Science for ME 'News in Brief' post for each week in August 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
August 10, 2025 at 7:44 PM
Reposted by Science for ME online forum
tomkindlon.bsky.social
For anyone scientifically-minded, an in-depth discussion on @scienceforme.bsky.social of the new #DecodeME paper, including discussion of how it does/doesn’t fit into other evidence from the field:

www.s4me.info/threads/init...

#MEcfs #PwME
Preprint - Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, Boutin et al
[Additional line breaks added] ABSTRACT Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a common, poorly understood disease that has no effective treatments, and has long been under...
www.s4me.info
August 6, 2025 at 11:41 PM
Reposted by Science for ME online forum
tomkindlon.bsky.social
5-page @scienceforme.bsky.social post-exertional malaise ( #PEM ) fact sheet
www.s4me.info/docs/PEM_Fac...

Headings:
-Characteristics of PEM
-Symptoms of PEM
-Exertion and other PEM triggers
-Effects of exertion that are not PEM
-Living with PEM
-Examples of PEM
-Research on PEM

#MEcfs #CFS #PwME
Logo: Science for ME: Where science and ME/CFS community meet Post-exertional malaise (PEM) Key points  People with ME/CFS have episodes when they are much more ill than usual following physical or mental exertion. This is called post-exertional malaise, or PEM.  PEM is a hallmark of ME/CFS and is important for diagnosis  Activities like a short walk or reading a few pages may trigger PEM. For the most severely ill, even chewing may trigger it. For many, light, sound and other sensory stimuli also trigger PEM. Often it is the combined effect of all activities and stimuli over a day or more that triggers PEM.  PEM usually starts hours or a day or two after it is triggered and can last for hours, days, weeks or longer. During this time, a person cannot do as much as usual and needs to rest.  There is no effective treatment for PEM.  PEM is not the same as the fatigue and muscle soreness anyone can experience after more activity than usual.
July 30, 2025 at 5:27 PM
Reposted by Science for ME online forum
valebodi.bsky.social
A 5 pages fact sheet on #PEM, the cardinal and core symptom complex of #ME/CFS www.s4me.info/docs/PEM_Fac...
By @scienceforme.bsky.social
www.s4me.info
July 30, 2025 at 7:46 PM
scienceforme.bsky.social
Our latest News in Brief post has headlines & links to further reading for #MECFS, #LongCovid, and related news, advocacy and research for the week of July 28 - Aug 3.

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

www.s4me.info/threads/news...
News in Brief - July 2025
This thread has a Science for ME 'News in Brief' post for each week in July 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
August 3, 2025 at 10:40 PM
scienceforme.bsky.social
Our latest News in Brief post has headlines & links to further reading for #MECFS, #LongCovid, and related news, advocacy and research for the week of July 7 - 13.

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

www.s4me.info/threads/news...
News in Brief - July 2025
This thread has a Science for ME 'News in Brief' post for each week in July 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
July 13, 2025 at 9:51 PM
scienceforme.bsky.social
Our latest News in Brief post has headlines & links to further reading for #MECFS, #LongCovid, and related news, advocacy and research for the week of June 30 - July 6

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

www.s4me.info/threads/news...
News in Brief - July 2025
This thread has a Science for ME 'News in Brief' post for each week in July 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
July 6, 2025 at 9:21 PM
scienceforme.bsky.social
‪Our latest News in Brief post has headlines and links to further reading for #MECFS, #LongCovid, and related news, advocacy and research for the week of June 16 - 22.

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

www.s4me.info/threads/news...
News in Brief - June 2025
This thread has a Science for ME 'News in Brief' post for each week in June 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
June 22, 2025 at 6:47 PM
Reposted by Science for ME online forum
tomkindlon.bsky.social
"What is ME/CFS?": 4-page factsheet created by members of the Science for ME Forum @scienceforme.bsky.social (February 2025)

s4me.info/docs/WhatIsM...

Takes a conservative approach e.g. with regard to prevalence.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Logo: Science for ME: Where science and ME/CFS community meet What is ME/CFS? Key points  ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is an illness that has a substantial, often severe impact on people's lives and is usually long-term.  It affects about 1 in 250 people, including children.  Symptoms include feeling ill and exhausted, difficulty staying standing or sitting up, pain, and problems thinking or concentrating.  Physical or mental activity can be followed hours or days later by a long-lasting worsening of the illness. This is known as post-exertional malaise.  ME/CFS makes it difficult or impossible to keep a job, attend school, or have a social life. Some people with the illness are housebound or bedbound.  There is no known cause or effective treatment. Some people with ME/CFS improve over time, but others worsen. Full recovery is uncommon except in teens and children and in the early stages of the illness.
June 17, 2025 at 9:14 PM