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Science for ME (S4ME) @s4me.info · 28/09/2026

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 21 - 27 Sep 2026

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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 21/09/2026

The S4ME forum has started a thread for members to share stories of their ME/CFS journeys in up to 10 sentences: s4me.info/threads/your... The WE&ME foundation will ask some contributors if they can use their stories for advocacy. This is my story. Please consider sharing yours on @s4me.info

Once an academic scholar and keen sportsman, my ME/CFS symptoms came on suddenly in 1992 when I was a 19 year old student, following tonsillitis, suspected glandular fever and two courses of antibiotics. The transition from someone who was essentially well and able to participate in normal activities to someone who was very obviously unwell and incapacitated was marked and sudden. However, I suspect that there may have been something wrong with me prior to that as I had been unusually tired and prone to infections for a few years, along with unidentified problems in my knee and shoulder, which had limited my ability to run and play racket sports.

After struggling to live independently on and off for about 18 months, I returned to live with my parents fulltime in 1994. If I had known then what lay ahead, I would not have been able to cope, and I don’t know if I would still be alive. For about seven years I was almost completely bedridden, in excruciating discomfort, urinating into a bottle and eating meals in bed. Now aged 53 I am mostly housebound and cared for by my 80 year old mother in a wheelchair adapted annexe on the side of her house.

One can be philosophical about loss and incapacity – about absence – but there is no philosophy that can overcome the presence of extreme physical discomfort and pain; of constantly feeling unwell. I am luckier than many people with my diagnosis in that some of my family and friends have been extremely supportive, and I have had some kind and helpful doctors, but like most people with ME/CFS I have also been let down, mistreated, ridiculed and abused, both personally and institutionally.

Love, solidarity and productivity, however limited, help to get me through the days, but I’m not sure that I could keep going without hope – hope of scientific understanding and a better quality of life.

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Science for ME (S4ME) @s4me.info · 20/09/2026

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 14 - 20 Sep 2026

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Science for ME (S4ME) @s4me.info · 13/09/2026

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 7 - 13 Sep 2026

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Science for ME (S4ME) @s4me.info · 06/09/2026

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 31 Aug - 6 Sep 2026

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Tom Kindlon @tomkindlon.bsky.social · 27/08/2026

. @actionforme.bsky.social 's PRIME webinar on Post-exertional malaise (PEM) is now available www.youtube.com/watch?v=Ad2R... s4me.info/threads/fact... Screenshot from @s4me.info update #MEcfs #LongCovid #PwME #PostExertionalMalaise #PEM @profmarkfaghy.bsky.social @sunsopeningband.bsky.social

Action for ME PRIME webinar on Post-exertional malaise (PEM) is now available on YouTube. It starts with an excellent presentation by Maree Candish based on the forum's PEM fact sheet. Other presentations are by Marjon Wormgoor and professors Faghy, Davenport and Hanson.
Video | Fact Sheet | Thread

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Science for ME (S4ME) @s4me.info · 30/08/2026

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 24 - 30 Aug 2026

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ME/CFS San Diego @mecfssd.bsky.social · 18/08/2026

@s4me.info Severe & Very Severe ME/CFS Care Fact Sheet: annual specialist assessment, home-based specialist nursing, prevention of deterioration, disability/education assessment, adaptations, & nutritional support. s4me.info/docs/Managem...

s4me.info

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Science for ME (S4ME) @s4me.info · 23/08/2026

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 17 - 23 Aug 2026

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Science for ME (S4ME) @s4me.info · 17/08/2026

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 10 - 16 Aug 2026

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Science for ME (S4ME) @s4me.info · 14/08/2026

New Fact Sheet from the Science for ME (S4ME) Forum: "Management of severe and very severe ME/CFS" s4me.info/threads/fact... This is the fourth fact sheet published by the S4ME forum. I'll post links to the other three in the replies. 1/4 #MEcfs #SevereME #PwME #S4ME

s4me.info

Fact Sheet 4: Management of severe and very severe ME/CFS

Fact Sheet 4: Management of severe and very severe ME/CFS Published August 2026 Link to pdf: https://s4me.info/docs/Management of severe and very severe MECFS.pdf Discussion thread: Fact sheet #4 - M...

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Science for ME (S4ME) @s4me.info · 09/08/2026

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 3 - 9 Aug 2026

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Science for ME (S4ME) @s4me.info · 02/08/2026

Our latest News in Brief summary (in two parts this week) has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of July 27 - Aug 2. s4me.info/threads/news... #MEcfs #PwME #LongCovid #PwLC

s4me.info

News in Brief - July 2026

This thread has a Science for ME 'News in Brief' post for each week in July 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.

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Science for ME (S4ME) @s4me.info · 02/08/2026

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 27 Jul - 2 Aug 2026

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Science for ME (S4ME) @s4me.info · 26/07/2026

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 20 - 26 Jul 2026

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ME/CFS San Diego @mecfssd.bsky.social · 21/07/2026

PRIME @actionforme.bsky.social Webinar 3 on PEM: Free webinar July 30 featuring talks on the @s4me.info community perspective, PEM pathophysiology, trial design in ME/CFS and LC, clinical approaches, and molecular signals of PEM. www.actionforme.org.uk/prime-worksh...

actionforme.org.uk

PRIME workshop on post-exertional malaise (PEM)

Join our third PRIME online workshop on Thursday 30th July to learn more about post-exertional malaise (PEM).

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Science for ME (S4ME) @s4me.info · 19/07/2026

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 13 - 19 Jul 2026

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Science for ME (S4ME) @s4me.info · 12/07/2026

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 6 - 12 Jul 2026

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Science for ME (S4ME) @s4me.info · 05/07/2026

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 29 - July 5. s4me.info/threads/news... #MEcfs #PwME #LongCovid #PwLC

s4me.info

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Science for ME (S4ME) @s4me.info · 05/07/2026

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 29 Jun - 5 Jul 2026

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Science for ME (S4ME) @s4me.info · 28/06/2026

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 22 - 28. s4me.info/threads/news... #MEcfs #PwME #LongCovid #PwLC

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Science for ME (S4ME) @s4me.info · 28/06/2026

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 22 - 28 Jun 2026

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

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 15 - 21 Jun 2026

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Solve M.E. @solveme.bsky.social · 17/06/2026

📢A proposed federal rule could let the government cancel active #MECFS research mid-study when political priorities change. The public comment window closes July 13. Take action: ow.ly/J5EP50ZcpV0 How to submit a public comment: ow.ly/Oq6150ZcpUZ Please share! #MEAwarenessHour

Urgent alert about a government rule threatening to halt ME/CFS research with a July 13, 2026 deadline to act.

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Tom Kindlon @tomkindlon.bsky.social · 14/06/2026

Can every infection become a chronic disease? san.com/cc/can-every... @scienceforme.bsky.social weekly update summary: The article asks if the true burden of infectious diseases is larger than previously anticipated. Interviews with among others Ziyad Al-Aly and Amy Proal. #LongCovid #MEcfs

san.com

Can every infection become a chronic disease?

During the pandemic, long COVID emerged as a medical curiosity. Now, it is changing how scientists think about infections.

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Science for ME (S4ME) @s4me.info · 14/06/2026

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 8 - 14 Jun 2026

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Science for ME (S4ME) @s4me.info · 07/06/2026

🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 1 - 7 Jun 2026

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Science for ME (S4ME) @s4me.info · 31/05/2026

🧵 of highlighted #MECFS and #LongCovid research papers being discussed this week on the Science for ME forum. 25 - 31 May 2026

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Science for ME (S4ME) @s4me.info · 31/05/2026

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 May 25 - 31. s4me.info/threads/news... Become a forum member if you'd like to join the discussion! #MEcfs #PwME #LongCovid #PwLC

s4me.info

News in Brief - May 2026

This thread has a Science for ME 'News in Brief' post for each week in May 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.

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Science for ME (S4ME) @s4me.info · 30/05/2026

Forum maintenance is complete and the Science for ME Forum is now back online.

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Science for ME (S4ME) @s4me.info · 30/05/2026

Reminder: Scheduled forum downtime will start soon. I'll post here when the forum is back online.

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Science for ME (S4ME) @s4me.info · 29/05/2026

Reminder: Tomorrow (May 30) starting at about 2 pm EDT (UTC-4) the Science for ME forum will be unavailable for a short time (about an hour or so) due to scheduled maintenance. @mecfs@fedigroups.social @longcovid@fedigroups.social #MEcfs #LongCovid #Science4ME

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Science for ME (S4ME) @s4me.info · 24/05/2026

🧵 of highlighted #MECFS and #LongCovid research papers being discussed this week on the Science for ME forum. 18 - 24 May 2026

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Science for ME (S4ME) @s4me.info · 23/05/2026

Please note: On Saturday, May 30, starting at about 2:00 pm EDT (UTC-4), the Science for ME forum will be unavailable for a short time (about an hour or so) due to scheduled maintenance. #MEcfs #LongCovid #Science4ME

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Science for ME (S4ME) @s4me.info · 17/05/2026

🧵 of highlighted #MECFS and #LongCovid research papers being discussed this week on the Science for ME forum. 11 - 17 May 2026

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