“Wikipedia represents something unprecedented: the only major platform on which truth emerges through transparent debate, rather than algorithmic opacity or corporate interests. Every edit is logged, every discussion archived” Use the Wikipedia app. 🧪 #Knowledge www.nature.com/articles/d41...

From Sweden: SARS-CoV-2 Infection Is Associated With an Increased Risk of Hospital-Treated Infectious Mononucleosis due to EBV: National Register-Based Cohort Study onlinelibrary.wiley.com/doi/10.1002/... Screenshot from latest Science for ME weekly update #LongCovid #PASC

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.

A brilliant review of a big year for ME/CFS research from this extraordinary blogging team. DecodeME results and lots more, including areas with less promising results eg antibodies & viral persistence. Plus the positive clinical trial pilot for daratumumab.

Previously, I posted that Na-ion batteries were likely to reach Li-ion battery energy density faster due to the prior advances and experience from Lithium work. Well, that’s appears to be the case. 🧪🔌💡☀️💨💧🔋 www.uh.edu/news-events/...

1) Prof. Scheibenbogen announced that the biopharma company Sanofi is willing to support a drug trial on ME/CFS led by the Charité. Sanofi also expressed an interest in gaining a better understanding of the disease and its mechanisms.

1) This factsheet for medical professionals received a lot of response and discussion. Some people felt it was dismissive of several findings in the ME/CFS field, so I want to give some more background and context.

🇳🇴 Patients from Norway have created a petition to encourage the government to provide funding for the Daratumumab study and to strengthen future biomedical research efforts in ME CFS. You can sign the petition here:

9-year anniversary of reanalysis paper on recovery in £5m #PACEtrial, with data the PACE team fought so hard to keep to themselves. Shows recovery rates in all trial arms were low, using the criteria the PIs promised in their own protocol tandfonline.com/doi/full/10.... #MEcfs #CFS

1) This interesting short paper showed that the immune cells of Long Covid patients had a stronger response to viral mimics than controls. They produced more type I interferon.

1) The ME Association in the UK announced that it will invest £1.1m into the Rosetta Stone study. The study will compare the immune profile of ME/CFS and Long Covid patients, with 250 patients in each group.

Excellent thread summarising an important review of post- infectious syndromes that goes way beyond ME/CFS and long Covid

Question: of all medical conditions and diseases*, which one's presentation do you think is most similar to ME/CFS? * Excluding overlapping syndromes such as fibromyalgia, Long Covid, POTS, MCAS, hEDS, etc., which are equally poorly understood.

1) 🇳🇱 This Dutch study tested subcutaneous lidocaine in 103 Long Covid patients. The paper reports multiple improvements, but there are several caveats: - 29% dropped out - no placebo control group - physical component scores showed few improvements A brief breakdown...

It seems so silly but it’s really uplifting to see a celebrity fundraise and advocate for #MECFS Mark Bonnar posted this 2 days ago. He’s still fundraising for @actionforme.bsky.social as part of the Big Give Christmas Challenge. I’ll link the video below

1) 🧬 New results from the LOCOME project. It applied the combinatorial analytics of PrecisionLife on data from DecodeME. The 259 genes that were most associated with ME/CFS pointed to "neurological dysregulation, inflammation, cellular stress responses, and calcium signaling"

A study on 1.7 million people in Hong Kong shows superior hybrid immunity to Covid in people who got vaccinated before infection vs. people who got infected first. "Our findings are a direct rebuttal to arguments for natural immunity," the authors write. doi.org/10.1016/j.va...

1) Dr. Michael Peluso will lead a big ME/CFS project called CHIME. The infrastructure first built for HIV, then used for Long Covid in the LIINC study, will now also help with studying pre-pandemic ME/CFS The research will focus on gut biopsies and PET-CT scans.

1) 🇸🇪 A database study from Sweden reports that patients with a registered Long Covid had higher rates of depression and anxiety in 2019 (before Sars-Cov-2) than controls. There are, however, several possible explanations for these findings.

1) Had a look at this paper on 'The clinical relevance of Mast Cell Activation in ME/CFS'. Unfortunately, it's almost fully based on self-reported data and questionnaires. There are still almost no studies that looked deeper into MCAS in ME/CFS using proper biological tests.

📢 Exciting news! Today, we are proud to launch the Overlapping Illness Alliance, a coalition of charities working to improve recognition, care and support for those living with complex, overlapping conditions.

We recently launched our Big Survey! 🎉 We’ve already had over 2000 responses - thank you to everyone who’s taken part so far 🧡 Take part, read our FAQs, and find out more here: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/

Can anyone provide social media help setting up a bluesky account & Facebook page to reach #PwME like me, for someone who doesn't understand social media. Advice would be for great, also freelancing. It's for a friend, but I'd be the contact. Ideally, running the accounts as well (would be basic).

ME Association LDN trial update: this is well advanced. 208 people recruited, 123 dosed, 50 have had their 1st MRI scans & 39 both. The research team expect to complete recruitment very soon, with all participant activities completed by February next year. meassociation.org.uk/2025/10/upda...

1) More excellent work by the WE&ME Foundation. They have created ME/CFS fellowships: 6-month research stays with funding of up to € 40,000. The call is co-funded by the WWTF (a big non-profit in Vienna dedicated to research and science) and has a total budget of € 200.000.

"The guidelines will make it very clear that ME/CFS is a physical illness. The guidance is to support people with the psychological impact of living with a long-term, debilitating, physical condition. "

Hi all I'm doing a birthday fundraiser (big birthday coming up next week). It's for the Daratumumab trial which is really exciting, via Joan Crawfords just giving page. I think this has huge potential and needs a proper clinic trial. Please share #mecfs www.justgiving.com/crowdfunding...

1) Reading this review on fatigue in other diseases: it's notable how it manifests early in the illness (often before diagnosis), how it's often poorly explained (correlates poorly with pathology markers), yet is reported to be one of the most disabling symptoms.

UK: NIHR/MRC Showcase event for post acute infection conditions research www.eventbrite.co.uk/e/nihrmrc-sh... Screenshot from latest Science for ME weekly update #MEcfs #LongCovid #CFS #PwME

www.theguardian.com/society/2025... @theguardian.com PLEASE correct this misleading headline – your article repeatedly states it's the total number of steps you take, NOT hitting a particular daily count that matters. The opposite of your headline.

Thank you, ME/CFS blog, for these brilliant summaries and insights. If you are interested in ME/CFS research, and what's important within it, take a look (and consider following them).

1) We watched the 2025 Stanford Symposium on ME/CFS and summarized many of the presentations. While it's great to see so many talented people focusing on ME/CFS, we also noted that a lot of research is focused on hypotheses that are not yet supported by strong evidence.

5) The most interesting presentations were those that collected a lot of novel data without a particular hypothesis, such as the whole-body PET scans by Dr. Michell James. IMHO, we need more data and measurements, less theory and speculation.

Great summary of striking work that: 1 Brings experts using cutting edge technology on other diseases to ME/CFS. 2 Finds bio action in many tissues eg brain, spinal cord, muscles, crucial if there's not much to to find in the blood. 3 Looks in living bodies, not samples in the lab

1) The most interesting presentation during the 2025 Stanford symposium was on PET scans of the entire body. Dr. Michelle James explained that they found a striking pattern with more TSPO signal in various muscle groups of ME/CFS patients, such as the thigh and shoulders.

Interesting, elegant study suggesting a possible reason #longCovid is more common among women. For Covid infected mice, prolonged cognitive problems (measured e.g. by maze tests) – a 'proxy' for long Covid- were more common among females. As was a stronger immune response. Relevant to ME/CFS?

This is exactly what we need – scientists from other fields bringing their expertise to their bear. The usual brilliant summary from ME/CFS Science. Who point out the cardiac issues seen in the model might mean this gene isn't relevant to ME/CFS.

Poignant sequel to Rilke’s poem The Panther by Veronica Ashenhurst who has severe ME/CFS: www.westtrestlereview.com/wtr_septembe...

1) Remember the intramural NIH study about effort preference in ME/CFS? Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.

“Most of the people I’ve seen with #MECFS are so much sicker than my cancer patients.” Dr. Fridbjörn Sigurdsson, a former medical oncologist now focused on ME/CFS, speaking at the 2025 @investinmeresearch.bsky.social conference. Thanks to @mecfsskeptic.bsky.social for finding the clip.

1) 🇬🇧 For ME/CFS patients in the UK only: Action for ME has opened its 2025 Big Survey! Last time, it had more than 4000 respondents, but hopefully this one will be even bigger. The deadline for submitting your response is 27 January 2026.

Free talks at the IACFS/ME Conference for everyone! (no ticket/ purchase necessary) Link: nova.zoom.us/webinar/regi... Copied from a new email from the IACFS/ME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

1) 🇬🇧 The NIHR and MRC are hosting a free showcase event for research on post-acute infection conditions, including ME/CFS and long COVID. It takes place in London on November 6, 10 am - 4:30 pm GMT.

The secret to the naked mole-rats’ extraordinarily long life may lie in subtle changes to just four amino acids, researchers report in Science. https://scim.ag/3IUquTb

It's the Action for ME 5-yearly Big Survey: - How has ME affected your life? – How has the NHS treated you? – Had Social care provided what you need? – has ME hit your finances, and that of those who support you? Provide answers for researchers and future campaigns. 48 Qs, but we have till Jan.

The Big Survey is now live! It has been such a privilege to get to work on this with such a wonderful, inspiring team at @actionforme.bsky.social, including our brilliant Patient and Public Involvement Group, made up of people with lived experience of ME and Long Covid.

Welsh Senedd Debate on Severe and Very Severe ME – 15th October - POSTPONED to 26th Nov.   Adam Price, MS, was due to lead the Members Debate on Severe and Very Severe ME tomorrow in the Welsh Senedd (Parliament), but on Sunday he suffered a close family bereavement.  1/4

"The UK Medical Research Council recently awarded £800,000 over four years to PRIME, a partnership between Action For ME and the University of Edinburgh" www.youtube.com/watch?v=1dgK...

Reminder: The DecodeME team want to do a related genetic study with the samples they have collected already but unfortunately don’t have the funding yet: megenetics.org.uk/our-projects... #MEcfs #PwME #CFS

2) PRIME is a collaboration between the University of Edinburgh, the ME Genetics Centre of Excellence, and Action for ME, who will ensure that people with lived experience of ME/CFS are at the centre of the project.