1) This year, there were reports of 7 autopsies of ME/CFS patients, showing a dramatic reduction in CRH-producing neurons. This info was shared at the IACFS/ME conference, but the results still haven’t been published yet. Similar findings have been found in type 1 narcolepsy.

1) The graph below gives an overview of treatments targeting autoantibodies in Long Covid and ME/CFS. Efgartigimod = Vygart Rovunaptabin = BC007 The authors conclude that "to date, no AAbs have been conclusively proven to be pathogenic in PCS or ME/CFS."

1) Elizabeth Worthey's group published their findings on rare gene mutations in ME/CFS patients. Unfortunately, the evidence seems a bit underwhelming. Only 31 individuals were screened and it's unclear if the mutations found are truly pathogenic.

#LongCovid #ME #POTS

1) Dr. Jarred Younger has registered his trial of Low Dose Naltrexone, which will start next year. It uses a remote design so that people can participate from anywhere in the United States. Participants must be between the ages of 8 and 65 and meet ME-ICC criteria.

Reminder, #MEcfs researchers: all consented data from @decodemestudy.bsky.social is available to researchers, including individual-level genotypes and symptom questionnaire responses institute-genetics-cancer.ed.ac.uk/decodeme-the... Summary stats & questionnaires available: osf.io/rgqs3/files/...

1) Oliver Sacks, the neurologist known for his detailed case studies, seems to have fabricated and lied in many of his publications. This includes famous books such as 'The Man Who Mistook His Wife for a Hat' and 'Awakenings' on patients with encephalitis lethargica.

Bit disappointed in this superficial review by the group of Warren Tate in what seems to be a predatory journal. Looks like we are not the only ones with that assessment, see comments on S4ME: www.s4me.info/thread...

1) Iwasaki's group has published a historical review of post-infectious syndromes. Infections are traditionally viewed as having two outcomes: you either die or fully recover. But there are reports of post-acute sequelae after multiple infections, not just after COVID-19...

Excited to share our new paper in @eclinicalmed.bsky.social: www.thelancet.com/journals/ecl... In this retrospective cohort study, we examined 147,595 individuals with FND. We investigated the prevalence of adverse life events nd psychosocial stressors, and how these relate to FND presentations.

Dr. Chris Armstrong, the Director of OMF’s Melbourne ME/CFS Collaboration, and his team recently published a paper on their work looking at which genes were most impactful to metabolites in #MECFS and which were most impactful in controls. 👉Read more: ow.ly/ast150XG0rz.

1) A randomized trial from Boston shows that nicotinamide riboside supplementation (2000 mg/day) probably doesn't improve Long Covid symptoms such as fatigue or cognition. It increased NAD+ levels substantially (as intended), but there was no similar improvement in symptoms.

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"

1) Prof. Ronald Davis gave a hopeful message during the last OMF’s Directors' talk. He said that the few ME/CFS patients who have been cured seem totally normal, so it appears that the disease does not cause degenerative damage to the body...

Physiological response is an involuntary, automatic, internal process that is stimulated by something like stress or infection. Symptoms are how a person experiences those internal changes in a clinically observable way. In #MECFS research, it’s important to monitor both.

Ron Davis: "One very important thing is that if the patients that have been cured , they are totally normal. So this disease does not appear to cause damage to the body as some diseases might like a heart attack or a stroke... youtu.be/H_GUUtxZD78?...

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.

People with #MECFS and #longcovid need hope, information, and support. People need help from people who understand these conditions, like Raelan Agle www.youtube.com/watch?v=zvGk...

Cognitive behavioural therapy for the treatment of chronic fatigue syndrome in adults – a meta-analysis www.frontiersin.org/journals/psy...

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.

Interesting that this Canadian study found upregulated genes involved in neuronal differentiation and development. DecodeME and the Snyder preprint also pointed in that direction (although using other genes and approaches).

1) New preprint from the Stanford group of Ron Davis. They looked for 185 human viruses, and found traces of 17 viruses in patients or controls. "Surprisingly", the authors write "more viruses were found in the healthy controls than in the ME/CFS patients."

For patients with Long Covid: you can now participate in a remote treatment trial of tirzepatide (a GLP-1 inhibitor also known as zepbound). The study is organized by Scripps Research and aims to enroll 1000 participants.

Preventive effect of vaccination on long COVID in adolescents with SARS-CoV-2 infection Immune memory more rapidly contains and clears infections, thereby reducing amplitude and time of immune responses, reducing risk of secondary effects. www.sciencedirect.co... 1/6

Looks like this trial actually showed that HBOT likely doesn't work in ME/CFS. They excluded 7/37 participants who dropped out They do not compare results to a control group Participants received 40 sessions And still, the improvement was only 6.3 points on the SF-36 PF scale

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.

Interested in ME/CFS research? Want to do a PhD with @aryback.bsky.social, @avakhamseh.bsky.social, @sjoerdvbeentjes.bsky.social & @cgatist.bsky.social? Then apply for a *funded* Future Medicine PhD Fellowship. See: www.findaphd.com/phds/project... Please contact us to discuss before applying.

1) 🇮🇳 Colchicine, an anti-inflammatory drug used to treat gout, was found to be ineffective for Long Covid. A placebo-controlled trial in JAMA Internal Medicine found that "colchicine did not improve functional capacity, respiratory function, or inflammatory markers."

1) A pilot study tested transcranial magnetic stimulation in 15 ME/CFS patients. It's a non-invasive treatment that repeatedly uses magnetic fields to influence brain activity. The hope is that it helps to recalibrate dysregulated neural networks.

1) The research team of Leonard Jason has published the DSQ-PEM-2, a new short questionnaire to assess post-exertional malaise (PEM). It includes extra questions about multiple PEM triggers, delayed onset, and prolonged recovery. But there are also some issues...

1) It doesn't happen very often that an ME/CFS paper gets retracted. But the journal Food Science & Nutrition just retracted a study that claimed certain lipids contribute to the development of ME/CFS. It suggested that "dietary choices can potentially mitigate the syndrome."

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.

1) We’ve just published our second instalment on the DecodeME results, this timing zooming in on the genes associated with ME/CFS.

📚Been writing a book for the past 3 years about the science of pain & how to heal. I'm nervous AF but also know that the time has come for change- ESPECIALLY with all the pain in the world right now. Please spread the word & share with anyone who might need it 🙏🏼💥 www.amazon.com/Tell-Me-Wher...

Autonomic phenotyping, brain blood flow control, and cognitive-motor-integration in Long COVID and myalgic encephalomyelitis/chronic fatigue syndrome: A pilot study www.sciencedirect.com/science/arti...

Upcoming talk for the disability & chronic pain community on the science of pain and how to heal with @birdability.bsky.social - talk is free & accessible to all 💥💥💥 When: Mon 10/20 @ 7pm ET/4pm PT Where: birdability.org Join us!! 🙏🏼 #medsky #neuroskyence #disability #scisky 🧪

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.

www.researchsquare.com/article/rs-7... Quantification of fibrinaloid clots in plasma from pediatric Long COVID patients using a microfluidic assay

1) The Physios for ME team published a randomized trial on pacing with a heart rate monitor. It included 32 patients with ME/CFS and 15 with Long Covid. A brief breakdown of the main results 🧵

There must be well over 100 ME/CFS biomarker studies, all claiming success – but none have been replicated. And that's probably no better bet for forgetting media coverage either – it makes such a nice story (every time).

1) There's a new ME/CFS study that is getting a lot of attention in the media. It focuses on epigenetics: how genes are switched on or off by folding DNA in a different way. You genetic code itself is fixed but the expression of genes can change by environmental factors.

The research used to claim reliability of a ME/CFS blood test has important limitations, shown here. www.theguardian.com/society/2025...

1) We’ve written an article about the DecodeME results: what the study measured, what the results show, and why its findings are important.

Most of the information in the article is incorrect. The ELISA test is only inaccurate for early lyme. For late lyme it's 100% accurate. The clinic seems to use a lot of unproven, unscientific tests and treatments.

It doesn't help, does it. Really sorry for the girl and her family. We have a Reality Check page which mentions that T-spot tests have been shown not to be useful. www.lymediseaseaction.org.uk/about-lyme/r... NB some late Lyme cases can test -ve if immunosuppression, or early inadequate treatment.

1) A major genetic study on fibromyalgia just came out with DNA samples from 50.000 patients and 2.5 million controls. Most of the hits point to the brain and several implicated genes (RABGAP1L, OLFM4, DCC) were also found in the DecodeME study on ME/CFS.

It was 86% for people with a post-Covid condition

I is for Irritable Bowel Syndrome (IBS).  Our free leaflet has more information on IBS in people with ME/CFS: https://meassociation.org.uk/literature/items/stomach-irritable-bowel-symptoms/  #pwME #MECFS #IBS #IrritableBowel

🇪🇪 Does anyone know any ME/CFS patient organisations from Estonia? If you are an ME/CFS patient in Estonia, could you perhaps reach out to us at [email protected]? Many thanks in advance!

1) A large US study on 301 ME/CFS patients reports that 97% had at least one autonomic symptom. We think this conclusion is a bit misleading. 🧵