Science for ME online forum
LightNews LightNews
scienceforme.bsky.social
Science for ME online forum
@scienceforme.bsky.social
1.8K followers 27 following 510 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.
Posts Replies Media Videos
Pinned
scienceforme.bsky.social
Science for ME online forum @scienceforme.bsky.social · 7d
Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Jan. 5 - 11.

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

www.s4me.info/threads/news...
News in Brief - January 2026
This thread has a Science for ME 'News in Brief' post for each week in January 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
Reposted by Science for ME online forum
tomkindlon.bsky.social
"Media Baffled by Wheelchair ‘Miracles’ Because They Don’t Understand #Disability"

fair.org/home/media-b...

"The distance from the entrance to the gate at larger airports is about a mile, an impossible distance for many with #MECFS"

#LongCovid & the Covid pandemic is mentioned as is #POTS

1/
FAIRNESS & ACCURACY IN REPORTING Challenging media bias since 1986. January 12, 2026 Media Baffled by Wheelchair ‘Miracles’ Because They Don’t Understand Disability Justine Barron Photo of somebody being pushed in a wheelchair in an airport
January 17, 2026 at 9:37 PM
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 Jan. 12 - 18.

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

www.s4me.info/threads/news...
News in Brief - January 2026
This thread has a Science for ME 'News in Brief' post for each week in January 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
January 18, 2026 at 10:23 PM
Reposted by Science for ME online forum
tomkindlon.bsky.social
5-page 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
-References

#MEcfs #CFS #pwME #LongCovid

1/
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.
January 11, 2026 at 12:40 PM
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 Jan. 5 - 11.

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

www.s4me.info/threads/news...
News in Brief - January 2026
This thread has a Science for ME 'News in Brief' post for each week in January 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
January 11, 2026 at 8:07 PM
Reposted by Science for ME online forum
tomkindlon.bsky.social
Description from Science for ME update:
“ME/CFS Science Blog has published a review of the most interesting ME/CFS studies in 2025, including DecodeME, the daratumumab trial, autopsy findings from the Netherlands, & most extensive study on antibodies in ME/CFS to date”
#MEcfs #CFS #PwME
mecfsskeptic.bsky.social ME/CFS Science @mecfsskeptic.bsky.social · 19d
1) We’ve just published our review of the most interesting ME/CFS studies of 2025.

It feels like this year, we’ve made a significant step towards understanding the pathophysiology of ME/CFS.

A brief overview of the studies that caught our eye.
January 4, 2026 at 1:50 PM
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 Dec. 29 - Jan. 4.

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

www.s4me.info/threads/news...
News in Brief - January 2026
This thread has a Science for ME 'News in Brief' post for each week in January 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
January 4, 2026 at 10:36 PM
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 Dec. 22 - 28.

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

www.s4me.info/threads/news...
News in Brief - December 2025
This thread has a Science for ME 'News in Brief' post for each week in December 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
December 28, 2025 at 8:37 PM
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 Dec. 15 - 21.

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

www.s4me.info/threads/news...
News in Brief - December 2025
This thread has a Science for ME 'News in Brief' post for each week in December 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
December 22, 2025 at 2:07 AM
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 Dec. 8 - 14.

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

www.s4me.info/threads/news...
News in Brief - December 2025
This thread has a Science for ME 'News in Brief' post for each week in December 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
December 14, 2025 at 9:57 PM
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 Dec. 1 - 7.

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

www.s4me.info/threads/news...
News in Brief - December 2025
This thread has a Science for ME 'News in Brief' post for each week in December 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
December 8, 2025 at 1:56 AM
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. 24 - 30.

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 30, 2025 at 11:17 PM
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. 17 - 23.

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 24, 2025 at 12:02 AM
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. 10 - 16.

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 16, 2025 at 11:18 PM
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