Great to see a huge #fibro study!

Interesting German research with some objective measurements: Evidence of clinical and brain recovery in post-COVID-19 condition: a three-year follow-up study Free full text: academic.oup.com/braincomms/a... “Our study revealed an overall slow but evident clinical improvement” #LongCovid #PASC

New Polish study which also involved some UK researchers: "The gut microbial composition is different in chronic fatigue syndrome than in healthy controls" www.nature.com/articles/s41... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

“Placebo was considered more effective for functional than non-functional disorders by healthcare professionals, but not by patients” Interesting. Gives information on how professionals view functional disorders. I believe a FND diagnosis => Find New Doctor 1/

#CFS #ChronicFatigueSyndrome #MEcfs

#chronicillness #invisibleillness #hiddenillness #Spoonie #spoonies

New @davetuller1.bsky.social video interview: Yale’s Akiko Iwasaki @virusesimmunity.bsky.social on the Keystone Symposium, the Debate on Viral Persistence, and Related Issues www.youtube.com/watch?v=nJTa... Linked post: virology.ws/2025/09/26/t... #LongCovid #PASC

"I believe a FND diagnosis => Find New Doctor" Excellent. #healthcare #COVID #MECFS #MillionsMissing

1) A new review reports an association between endometriosis and ME/CFS. Patients with ME/CFS were approximately 2.5 times more likely to have endometriosis, while ME/CFS was 2.8 times more common in endometriosis patients than in controls. But there are some big caveats.

1) This lecture by Prof dr Vivienne Matthies-Boon is a good introduction to the problems with the biopsychosocial (BPS) model and the harms it has caused in the ME/CFS community.

Switzerland is putting in place one of Europe’s first national strategies specifically dedicated to improving care and research for ME/CFS and Long Covid www.europeanmealliance.org/news-Q32025-... #mecfs #Longcovid #EuropeanMEalliance

2/ @thesicktimes.org article includes a section on this: --- "So what should people with Long COVID do if they receive an FND diagnosis that does not explain their medical concerns? Here are a few tips:" --- Image is a summary of the responses #LongCovid #POTS #MEcfs #CFS #PwME

"Long COVID is not FND, but some patients are getting diagnosed with it. Here’s what to do if it happens to you" (Sept 26) by @davetuller1.bsky.social thesicktimes.org/2025/09/26/l... There are some references to ME and generally it seems just as relevant to those with ME/CFS #LongCovid #MEcfs 1/

A legal challenge to force the UK government to fund specialist health services for ME/CFS has 20 hours to go. This seems like a good thing to support, for those who can afford to. www.crowdjustice.com/case/justice...

🧵 (long!) justice4me.uk update: sent to donors yesterday: "Having taken legal advice, thanks to your donations, we have instructed our lawyers to proceed with a letter before claim to the Department of Health and Social Care (DHSC). This does not mean there will be a claim (an application to 1/10

And don’t wait for them to start hacking up a lung! People can spread airborne diseases like COVID and flu *before* they start showing symptoms.

#LongCOVID community, please share: I am working on an audio story and am hoping to speak with people who have tinnitus or hearing loss following a COVID infection. Please message me if you are open/ interested in speaking with me. Thank you!

A nice message that ME Research UK @meresearchuk.bsky.social have been sharing today on social media following our recent donation to their research fund #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

1) During his presentation at the 2025 Fatigatio conference, Prof. Bhupesh Prusty argued that physiologically, ME/CFS patients look similar to healthy individuals until they are put under stress.

1) Prof. Carmen Scheibenbogen's talk at the 2025 Fatigatio conference was mostly about off-label therapies in Germany. But at the end she also talked about new treatment trials they have planned to pursue the hypothesis that ME/CFS is caused by antibodies.

1) There's a new review on the impact of ME/CFS. It concludes that "ME/CFS imposes a substantial health, social and economic burden of disease" but argues that its true burden may be even higher because many patients likely remain undiagnosed.

Interesting to read this press release on a new US study that used objective testing: "While it may go unnoticed, loss of smell may linger for years after COVID-19" www.eurekalert.org/news-release... Paper: dx.doi.org/10.1001/jama... #LongCovid #hyposmia #Coronavirus #COVID #smell #anosmia

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PASC

You'd think more chefs and restaurant staff would wear masks instead of risking their livelihood.

I struggle with pacing every damn day of my life. But like everyone else with ME, I have no choice - if I don’t do it, my illness gets worse, sometimes permanently. Pacing is a deeply tedious management strategy but until there’s more proper research, it’s pretty much all we have.

Important new international #fibromyalgia study: "The genetic architecture of fibromyalgia across 2.5 million individuals" www.medrxiv.org/content/10.1... Someone on an ME/CFS forum has said: "I see some familiar genes from DecodeME*: RABGAP1L, OLFM4, DCC" *Similar ME/CFS study #Fibro #FMS #FM

Really important topic. It’s a great day to donate to @thesicktimes.org. Nowhere else is gathering this critical information for people who have Long Covid—or anyone who might get it, which a new NIH incidence study says is at least 1 in 20 people who get Covid.

2/ "I am not the first author to suggest never-words for illnesses such as Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome, & other complex chronic illnesses. The fact that the Lee et al2 and the Smyth & Blitshteyn..." bsky.app/profile/tomk... #chronicillness #LongCovid #MEcfs

"Never-Words for Patients With Invisible Illnesses – Liza Di Leo Thomas, MD" From: When We Don’t Have All the Answers: #LongCOVID and the Need for Humility in Medicine www.ochsnerjournal.org/content/25/3... #invisibleillness #LongCovid #chronicillness #hiddenillness #ChronicIllnesses

We're delighted to again support @meresearchuk.bsky.social & their important research. Thanks to all our donors & fundraisers + others who have supported us in any way See next message for more details #TogetherWeAreStronger #MEcfs

🌍 No. 54 of the ME Global Chronicle is published! It contains highlights from the past 3 months of ME events around the globe. meglobalchronicle.wordpress.com/2025/09/24/f... meglobalchronicle.wordpress.com/2025/09/24/t... With contributions by @colleensteckel.bsky.social & many more. #MEcfs

Free raffle: 2025 IACFS/ME Virtual Conference Tickets Drawing Sponsored by Dabdoub Law Firm docs.google.com/forms/d/e/1F... Each ticket is worth $250 USD #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid

Congratulations to Margaret Parlor, president of the National ME/FM Action Network, on receiving the King Charles III Coronation Medal "given to people who have made a significant contribution to Canada" www.mefmaction.com/images/stori... #MyalgicEncephalomyelitis #MEcfs #CFS #PwME

Scottish government: Funding long COVID [& ME/CFS] services www.gov.scot/news/funding... Comment: sounds like the focus will be on cheap, rehab approaches (which have repeatedly shown poorer effectiveness in ME/CFS) rather than physician-led services #LongCovid #MEcfs #CFS #PwME

I am so vexed at the missed opportunity here. That so-called service at Astley Ainsley is awful. They did nothing but make me worse, then issue a discharge letter lying and telling my GP I had all the tools I needed to recover fully. Psychological crap peddlers of the lowest tier.

. @davetuller1.bsky.social : More on Cochrane mess. In a June post, the exercise review author acknowledges the findings "may not apply" to those diagnosed with more recent ME/CFS definitions.This inadvertent admission makes it clear why a new review is absolutely needed virology.ws/2025/09/25/t...

. @amyarthur.bsky.social describes what life is like when you're chronically ill [with ME] & autistic from @actionforme.bsky.social www.actionforme.org.uk/resource/div... "It’s given me language to use with the people around me to explain how I’m feeling" #MyalgicEncephalomyelitis #MEcfs #CFS #PwME

The NIH in the US have highlighted a recent ME/CFS study they funded: "Overactive immune responses in ME/CFS" www.nih.gov/news-events/... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mhornig.bsky.social

1) Researchers translated the DePaul Symptom Questionnaire for Post-Exertional Malaise (DSQ-PEM) into German. But the paper is mostly useful for showing how the general population and Long Covid patients score each of the PEM items of the questionnaire 👇

Diagnostic criteria in the influential NICE guidelines on ME/CFS (from UK) (2021) www.nice.org.uk/guidance/ng2... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

"Advice for people with suspected ME/CFS" from the influential NICE guidelines on ME/CFS (from UK) (2021) www.nice.org.uk/guidance/ng2... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

One week to go. On the Facebook event, 1 person has said they are going & 8 have marked themselves down as interested. Apart from that, two others have told us they hope to/plan to go with another being a maybe. #MEcfs #PwME #CFS

Today's #ThereForME blog shares findings from a mini survey. We asked carers and clinicians with experience supporting people with v severe ME whether the Health Secretary should commission a service for v severe ME - and if so, what it should look like. Link in next post 👇

1) 🇳🇴 A new Norwegian study looked at the health and economic impact on caregivers of people with ME/CFS. ME/CFS strengthening traditional gender roles: female caregivers worked less and males more. All caregiver groups experienced increased personal health problems.

I thought this FB post was interesting. I know women have cut their hair short because of the maintenance; this might be an option for some. www.facebook.com/permalink.ph... #MEcfs #Spoonie

#ME #Disability #Psychiatry #Biopsychosocial @meassociation.org.uk @longcovidsupport.bsky.social @thelancet.com @nhsengland.bsky.social @georgemonbiot.bsky.social @profstevegriffin.bsky.social @davidjoffe64.bsky.social @drjoepajak.bsky.social

From China: "PASC patients increasingly depended on the visual cortex to compensate for deficits in executive function during [working memory] tasks" onlinelibrary.wiley.com/doi/10.1002/... Screenshot from latest Science for ME weekly update #LongCovid #PASC

From the US: Characterisation of a persistent SARS-CoV-2 infection lasting more than 750 days in a person living with HIV: a genomic analysis www.thelancet.com/journals/lan... Screenshot from latest Science for ME weekly update #LongCovid #PASC

5/ Vilde has posted the following background information on my Facebook page. Some people there had commented that her institutional support level was a bit unusual: www.facebook.com/TomKindlonME... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

4/ “Since June, Vilde Lepsøy has been wearing a smartwatch to measure her basic fitness. She has also regularly answered questionnaires. On September 30,she will receive the first injection of either daratumumab or a placebo drug” #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME