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.

The Open Medicine Foundation has been sharing around the following message on social media #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

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 👇

"the persistence of long COVID symptoms across varying follow-up durations highlights the long-term burden of these conditions and the need to better understand long COVID physiology" academic.oup.com/ofid/article... Screenshot from latest Science for ME weekly update #LongCovid #PASC

From Australia: "the cohort with persistent long COVID reported almost no improvement in overall symptomatology between the 3- and 6-month timepoints" www.cambridge.org/core/journal... Screenshot from latest Science for ME weekly update #LongCovid #PASC

From the US "this study...found that Paxlovid treatment during acute COVID-19 had no effect on subsequent PASC incidence." journals.plos.org/plosmedicine... Screenshot from latest Science for ME weekly update #LongCovid #PASC

From Germany: Exploratory study on autoantibodies to arginine-rich human peptides mimicking Epstein-Barr virus in women with post-COVID & myalgic encephalomyelitis/chronic fatigue syndrome www.frontiersin.org/journals/imm... Screenshot from Science for ME weekly update #MEcfs #LongCovid

Hope they get the required amount!!

Google translation of an article on an interesting #MECFS drug trial that is about to start in Norway www-nettavisen-no.translate.goog/nyheter/vild... Sadly they still haven't reached the amount required to fully do this study. People can donate here: www.me-foreningen.no/om-oss/stott... #PwME

Google translation of article on an interesting ME/CFS drug trial that is about to start in Norway www-nettavisen-no.translate.goog/nyheter/vild... Sadly they still haven't reached the amount required to fully do this study. People can donate here www.me-foreningen.no/om-oss/stott... #MEcfs #PwME

If you’re living with #MECFS, #LongCOVID, or want to volunteer as a ‘healthy control’ for medical research studies, becoming an AusME Registry participant is the simplest way to get involved in research! Sign up today and make a difference! zurl.co/FE9c2

Virtual Support Groups for Carers & Supporters 🌿 Are you supporting someone living with #MECFS or #longcovid? Emerge Australia’s virtual #supportgroups offer a safe space to connect with others Next groups start October 2025 – zurl.co/VYsjh

Healthy volunteers signing up to the #AusMERegistry & donating blood to the #ausmebiobank give researchers the vital comparison data they need to uncover the biology behind #mecfs & #longcovid and discover effective treatments 👉 zurl.co/W6BsH zurl.co/YEf22

MassME is proud to sign on to this letter encouraging subgroup tracking and analysis in the NIH RECOVER TLC clinical trials for Long COVID. massmecfs.org/advocacy/nat... #massmecfs #MEAction #SolveMe #openmedicinefoundation #batemanhornecenter #renegaderesearch #redefiningmecfs #corecommunity

Fighting health misinformation starts with education! DSN created a free beginner's guide to evaluating medical research for anyone wanting to critically assess studies without a science background. https://dysautonomiasupport.pulse.ly/9wgutnswoi #research #healthliteracy #dysautonomia #education

🇮🇸🇳🇴 The #MECFSResearchRegister is growing! With Norway and Iceland, projects and researchers from two more countries are now available. 🌐 Our goal: to make ME/CFS research visible, promote collaboration among researchers, for more 🔬 progress for millions of patients.

🚨 Interview on the report "The rising cost of Long COVID and ME/CFS in 🇩🇪": With @JamesEDaniell & @JohannesBrand98 ( @risklayer ) we talk about results 📊, implications 🌍, and political demands 🏛️. 🔗 https://mecfs-research.org/costreport

🚨 Interview zur Studie "Häufigkeit & Kosten von ME/CFS & Long COVID in 🇩🇪": Mit @JamesEDaniell & @JohannesBrand98 ( @risklayer ) sprechen wir über Ergebnisse 📊, Implikationen 🌍 und politische Forderungen 🏛️. 🔗 https://mecfs-research.org/costreport

Great @thesicktimes.org article on 3 upcoming #LongCovid trials on JAK inhibitors. PLRC did patient engagement and helped shape 1 of the 3 here, REVERSE-LC (baricitinib) led by @weselymd.bsky.social — who also used our scorecards for patient engagement! thesicktimes.org/2025/08/05/t...

Check out the newest anthology from @pillowwriters.bsky.social!!! We just heard some powerful samples from the anthology. A portion of your purchase goes to support #MEAction! US Amazon link: a.co/d/5zSkg8U UK Amazon link: amzn.eu/d/6fb8HeO Canada Amazon link: www.amazon.ca/Near-Life-Ex...

Many of us depend on #telehealth, but essential telehealth provisions expire on Sept 30 in the US. @meactnet.bsky.social has a script to call/email your representatives re a bill to preserve telehealth: www.meactions.org/telehealth Please advocate by Sept 29th! #MEAction #pwme #disabilityrights

1) A new paper by the Scheibenbogen group reports that ME/CFS and Long Covid patients have more antibodies that target proteins with arginine-rich (poly-R) sequences. Examples are: - the neuronal antigen SRRM3 - the ion channel SLC24A3 - the TGF-b signalling regulator TSPLY2

1) Interesting presentation by Dr. David Fajgenbaum. He suffered from a rare and life-threatening inflammatory disorder (Castleman disease) and found a FDA-approved drug (Rapamycin) that helped him go into remission. He's now looking to repurpose drugs for other diseases.

WatchME for iPhone and Apple Watch v2.8 now available To help #pwME with daily pacing iOS 17 | watchOS 10 Free. No data collected. apps.apple.com/app/watchme/...

1) Had a look at this recent paper in BMJ Public Health that reports that generalized joint hypermobility (GJH) is a risk factor for Long Covid. Some critical comments 🧵

1) A new genome-wide association meta-analysis of hEDS found two significant hits: - one on chromosome 2 that points to the gene ACKR3 - one on chromosome 8 that is less clear but might point to the gene KCNV1.

Clip from ITV Border News (19 Sept) about the powerful upcoming exhibition Lives We Cannot Live by Jeremy Jeffs (@jeremy-jeffs.bsky.social), shining a light on life with #MECFS. Highly recommended if you’re in London - Oxo Tower Gallery, 24–28 Sept

BBC Radio Cumbria (8 mins): Fiona Sadler speaks with farmer Andrew Jackson and his wife about featuring in Lives We Cannot Live, a photo exhibition about #MECFS by Jeremy Jeffs (@jeremy-jeffs.bsky.social) - London Oxo Tower Gallery, 24–28 Sept youtu.be/ylcuLlvfubk?...

The results of this new study adds further support to the hypothesis that low level neurological inflammation, caused by the immune response to the initial infection, is involved in Long Covid. https://meassociation.org.uk/pnzw #pwME #MECFS #LongCovid #PostCovidSyndrome #CognitiveDysfunction

S is for Sore Throat.  For more info on sore throats in ME/CFS, and how you can manage this symptom, visit: https://meassociation.org.uk/medical-matters/items/symptom-sore-throat-mecfs/  #pwME #MECFS #MyalgicEncephalomyelitis #SoreThroat

1/2: T is for Temperature dysregulation (thermoregulation).  For more information of issues with temperature in ME/CFS, visit: https://meassociation.org.uk/medical-matters/items/temperature-regulation-me-cfs/ #MECFS #pwME #TemperatureChanges #HeatSensitivity

U is for Unrefreshing sleep.  For more info on unrefreshing sleep, and recommended sleep management techniques, download our free leaflet: https://meassociation.org.uk/literature/items/sleep-management/  #pwME #MECFS #MyalgicEncephalomyelitis #UnrefreshingSleep #SleepIssues

1/2: V is for Visual disturbances.  For more info on the visual disturbances people with ME/CFS can experience, visit: https://meassociation.org.uk/medical-matters/items/symptoms-vision-me-cfs/  #pwME #MECFS #EyePain #DryEye #LightSensitivity #VisualFatigue

ITV Border News: Watch the segment (0.06.10) on catch up here: www.itv.com/watch/news/c...

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...

Metabolic neuroimaging of myalgic encephalomyelitis/chronic fatigue syndrome and Long-COVID journals.lww.com/immunometabo... Screenshot from latest Science for ME weekly update #LongCovid #MEcfs

" @thesicktimes.org spoke with twelve people who went to rehabilitation clinics in Germany...patients feel pressured to partake in exercise-based therapies that can make their disease worse." thesicktimes.org/2025/09/16/g... Screenshot from Science for ME weekly update #LongCovid #MEcfs

Denmark: A debate about how it's both wrong and harmful to define ME as a functional disorder sundhedspolitisktidsskrift-dk.translate.goog/debat/10608-... sundhedspolitisktidsskrift-dk.translate.goog/debat/10613-... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME 1/

Am 21.09. ist Tag der Dankbarkeit 💙 Alle Spenden über betterplace.org (max. 50€ pro Spende) werden an diesem Tag verdoppelt – bis 100.000 € Matchingbudget aufgebraucht sind. 👉 Jede Unterstützung hilft #MECFS & #LongCOVID Forschung.

Sept 21 is Gratitude Day 💙 All donations to our project via betterplace.org will be matched on this day – until the €100,000 matching budget is used up. 👉 Every contribution supports #MECFS & #LongCOVID research.

From ME Research UK: A review published in ACS Pharmacology & Translational Science explored the potential role of type 2 diabetes medication - metformin - in the treatment of ME/CFS and #longCOVID. tinyurl.com/3km7txhn This is not a recommendation, discuss medications with your doctor. #MEcfs

From ME Research UK: Dysfunction of natural killer cells (immune cells that can destroy infected cells) has frequently been implicated in ME/CFS. The findings of a recent study exploring gene variants (alleles) further support the role of these immune cells in ME/CFS tinyurl.com/4hyb7cns #MEcfs #CFS

From ME Research UK: Seven new research projects across two consortia have been announced as part of the Netherlands 28.5 million euros 10-year ME/CFS programme - tinyurl.com/uzeb2an6 What a difference when political will directs a sea-change in ME/CFS research funding. #MEcfs #PwME #CFS

Small study (38) finds(just about) clinical significance that Solriamfetol, a drug for narcolepsy, improved fatigue in #pwme. They used the Fatigue Symptom Inventory which is a bad 1-10 measure all about fatigue. Its not open access, but I suspect there are issues and limited improvement.

On Linkedin, psychiatrist Michaela Bauer from Switzerland wrote a short review of a study specifically about men and their experience with ME/CFS. www.linkedin.com/posts/michae... (There’s a translation button underneath) Alternative link: www.s4me.info/threads/a-ph... #MEcfs #PwME #CFS

The pillow writers group has published a new collection called Near-Life Experiences: The Pillow Writers Anthology, Issue 2. This ebook is available on Amazon. All proceeds go to #MEAction @meactnet.bsky.social www.s4me.info/threads/meac... #PwME #MEcfs #CFS

The UK All-Party Parliamentary Group for ME/CFS minutes of the Sept 11 meeting are available. Few MP's were able to attend. Their focus is on delivery of the Government's plan, despite recognising its shortcomings appgme.co.uk/wp-content/u... #MEcfs #PwME #CFS

Same cartoon with added medical reference. The link is in the ALT+ Justice4ME #Plan4ME @ashleydaltonmp.bsky.social @davetuller1.bsky.social @decodemestudy.bsky.social @tomkindlon.bsky.social @bmhughes.bsky.social @alastaircampbell2.bsky.social @whitneydafoe.bsky.social @longcovidadvoc.com

Action for ME’s Annual report and accounts are available. They highlight their role in DecodeME, their medical advice services, and ongoing advocacy www.actionforme.org.uk/resource/act... #PwME #MEcfs #CFS

(UK) “John Milne MP and cross party parliamentarians write to Wes Streeting with concerns about the ME/CFS strategy” www.libdemvoice.org/john-milne-m... In Liberal Democrat Voice #MEcfs #PwME #CFS