1) In this old study from 2005, researchers induced catastrophic thinking in their participants and then recorded their pain intensity after immersing their hand in ice water. Catastrophizing didn't have any influence on pain.

1) A large genetic study of anxiety disorder found 58 independent risk variants. Two of the signals were similar to those of DecodeME in ME/CFS: - Neuronal growth regulator 1 (NEGR1) on chromosome 1 - BTN3A2 of the butyrophilin family of genes on chromosome 6

This is really interesting, it ties in with my doctor's findings of low cortisol and adrenal dysfunction. I hope this leads somewhere positive for us all x

1) Dr. Felipe Correa da Silva shared more info about the first 10 brain autopsies from the Netherlands. In this new thread, we made a brief summary of his presentation.

Fascinating preliminary finding: Correa-da-Silva et al. see a near-complete loss of CRH-neurons in 5 postmortem brain samples of people with #MEcfs, not seen in many controls. A corresponding loss of cortisol in the cerebrospinal fluid was also observed. www.youtube.com/watch?v=30Dk... (7-13mins)

1) 🇩🇪 Scientists and clinicians based at institutions located in Germany can apply for the 2026 research funding programme of the ME/CFS Research Foundation. €2 million is available for new research projects. The deadline for submitting proposals is 30 April 2026.

1) 🏴󠁧󠁢󠁷󠁬󠁳󠁿 Researchers from Cardiff University followed-up on their findings on complement activation in Long Covid. In this new study, they found differences in the lectin pathway and suggest it might explain endothelial damage and persistent coagulopathy in LC.

👍👏

Now published in the journal PLOS One: Ryback et al. Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis/chronic fatigue syndrome or control serum. journals.plos.org/plosone/arti...

1) The Dutch NMCB research consortium held its General Assembly. Researchers of multiple ME/CFS studies reported their current status and findings. Here are a couple of things that caught our attention...

1) Top AI researchers have developed a new model called 'AlphaGenome' that helps us understand how DNA works and how instructions translate into proteins and biological differences. This might be useful in understanding the DNA results of DecodeME and the pathology of ME/CFS.

1) A Long Covid clinic in Ohio reports that of the 277 patients studied, 75% had fatigue as a primary or co-primary complaint. Yet only 16% met the Institute of Medicine (IOM) criteria for ME/CFS.

Not for #MEcfs but for rheumatoid arthritis: Successful clinical trial of vagus nerve-mediated neuroimmune modulation: www.nature.com/articles/s41.... Question asked by Eric Topol and Kevin Tracey is: Can this be successfully applied to other diseases? bsky.app/profile/eric...

Right as I was getting sick with Long Covid (still sick with Covid), I felt like my nervous system was on fire for about a day. It was bad enough to wake me up when it started. Interesting to see this theory.

1) Reading this old hypothesis by Michael VanElzakker on how infection of the vagus nerve might cause symptoms similar to ME/CFS. This nerve passes on info about what's happening internally in the body. So an infection there might cause constant and severe sickness symptoms.

1) 🇩🇪 Researchers from Munich tested microcirculation in the eyes of Long Covid patients. They weren't interested in eyesight, but used the eye to study circulation and endothelial function in the brain. They call it a "accessible surrogate of cerebral microvascular function"

1) Dr. Danilo Buonsenso in the Lancet Infectious Diseases: "... prevention of infection alone will not be enough to reduce the public health impact of long COVID. Finding a cure for long COVID needs to become a top research and health-care priority."

1) Peter Novak's dysautonomia clinic in Boston reports that ME/CFS and Long Covid patients have increased rates of: - reduced cerebral blood flow (ca 90%) - small fiber neuropathy (ca 50%) - postural tachycardia (ca 20%) and hypotension (ca 15%) - preload failure (ca 90%)

1) A new publication in Nature found that approximately 10% of people in the UK biobank have DNA of the Epstein-Barr virus in their blood and that this is associated with various autoimmune (lupus, rheumatoid arthritis) and respiratory diseases such as COPD.

1) Todd Davenport and his colleagues from the Workwell foundation published new data on 2-day exercise testing in patients with Long Covid. These showed reductions in workload and VO2 max on the second test, similar to ME/CFS patients.

1) 🇦🇺 Australian researchers measured connectivity between brain regions during a cognitive task. They put healthy controls, ME/CFS patients and Long Covid patients in a powerful 7 Tesla MRI scanner. The controls showed increased connectivity, while the patients did not.

1) "...While studies on biopsychosocial factors in physiologic disorders like POTS can be informative, they can also be weaponized by those who continue to erroneously believe that patients with POTS have abnormal behavioral, emotional and coping mechanisms..."

Ich freue mich sehr, zwei aufgezeichnete Vorträge - nämlich von @buechnerronja.bsky.social und mir - über die Schäden der Psychologisierung von #LongCovid, #MECFS, #MCAS und #PAIS zu veröffentlichen. 1/3 t.co/oUB8P8zovZ

1) This graph from the German ME/CFS Research Foundation shows the ca. €4 million in funding they collected since 2022 and how they've spent the money. Administrative costs are borne by the founder, so pretty much all donations go to ME/CFS research.

Prof. Ponting’s new study will test if an ME/CFS biomarker panel is feasible based on measurements of proteins in the blood. The research is funded by ME Research UK 👇 www.meresearch.org.uk/research/pon...

1) A follow-up study of more than 2000 Long Covid patients at the University College London Hospitals shows that only one-third achieved satisfactory recovery (>75% of best health). Rather disappointing results.

1) 🇧🇪 A small Belgian study reports that patients with ME/CFS and FM might have abnormalities in the opioid system. They found that the opioid receptor genes were more often methylated, suggesting that these patients might be less sensitive to this type of pain relief.

Congrats to @PlzSolveCFS for lifting these ME/CFS researchers up!

1) Reminder: the Horizon Europe work program for 2026-2027 includes a call on post-infection long-term conditions. It has a budget of 6-8 million per project and seems ideally suited for ME/CFS and Long Covid research. The opening date is 10 February 2026.

This would have been straightforwardly good news when Jeanne Marrazzo was still leading NIAID. Harder to say now but maybe good at least to move ME and LC away from the division Walitt is in.

1) Solve ME/CFS (@PlzSolveCFS) has made an overview of researchers who were supported by a Ramsay grant and went on to win millions of research funding from other institutions. So, the support of Solve might have acted like a stepping stone to bigger grants.

Some good news: ME/CFS is explicitly mentioned in the new NIAID vision. 👇 Hopefully, this will lead to more funding opportunities for ME/FS research in the US.

1) From the new NIAID vision: "The NIAID will foster research to better understand long-term post-infectious and non-infectious inflammatory syndromes, such as long COVID, chronic Lyme disease, myalgic encephalitis/chronic fatigue syndrome, and adverse events after vaccination"

1) A small in-depth study found B-cells from ME/CFS patients to have more lipids. The authors write:"To our surprise, ME/CFS LCLs exhibited an accumulation of lipids including fatty acids" This could indicate a metabolic deficit or differences in B-cell signalling and receptors

1) 🇦🇺 Australian researchers claim they have found a "robust biomarker" for ME/CFS, namely a dysfunction of an ion channel in Natural Killer cells. Unfortunately, there are also a couple of limitations to the study.

The German ME/CFS and LC research community is stepping up its game. With funding granted and studies planned, Germany is a sign of hope as the US research outlook remains uncertain.

UPDATE: The German Ministry of Research (BMFTR) announced that it is funding a phase II study on Uplizna (Inebilizumab). It targets the CD19 marker present on B-cells during most of the maturation process (see graph below). Source: www.bmftr.bund.de/DE/Forschung...

1) In a Bulgarian study, 65 ME/CFS and 54 Long Covid patients showed similar immune alterations when compared to healthy controls. They had lower NK and CD8+ T cells, but increased inflammatory cytokines such as IL-6 and TNF.

1) In the coming years, we will likely get an answer to a frequently asked question: Is ME/CFS caused by auto-antibodies? Looking forward to the HLA-results from DecodeME, the Norwegian daratumumab study and sham-controlled trials on immunoadsorption.

1) ME/CFS patients often reported problems with their working memory. This review examined 34 studies that used cognitive tests to investigate this. The effect was quite large for verbal working memory, while no clear effect was found for visual memory.

1) This new theory by Resa Pretorius and colleagues focuses on endothelial dysfunction in ME/CFS and Long Covid. The endothelium is the layer of cells that forms the inner lining of blood and lymphatic vessels.

1) Disappointing to see: this paper reports a prevalence "chronic fatigue syndrome (myalgic encephalomyelitis (CFS/ME))" of 11.2% among healthcare professionals in North Africa. This figure is unrealistically high. It looks like they misinterpreted ME/CFS as a form of fatigue

Hier is de pagina als je geïnteresseerd bent in je op te geven als donor, ze zoeken expres mensen met ME/CVS www.hersenbank.nl/hersendonati...

You can read about pre-registering to donate your brain post-mortem here: braindonorproject.org/chronic-fati...

1) With both symptoms and genetic evidence pointing to the brain, should the ME/CFS community do a coordinated push for brain banks and autopsy studies? The ongoing post-mortem studies in the Netherlands and the UK will give us a glimpse of how feasible and useful this is.

In this review, the pooled prevalence of Long COVID (≥1 symptom persisting ≥6 months) across 14 prospective studies was 18%. (haven't read all these studies - looks like the Xie 2024 Veterans Affairs study is pulling the estimate down). www.mdpi.com/2227-90...

1) This hypothesis paper argues that herpesviruses aren't either active (lytic replication) or passive (latency) but that there's a third state called 'abortive lytic replication' where the virus is active but doesn't replicate itself. They suspect this plays a role in ME/CFS.

Not sure if this is a good or bad thing for ME/CFS research...

Description from Science for ME update: “ME/CFS Science Blog has published a review of the most interesting ME/CFS studies in 2025, including DecodeME, the daratumumab trial, autopsy findings from the Netherlands, & most extensive study on antibodies in ME/CFS to date” #MEcfs #CFS #PwME

1) 🇨🇳 A Chinese study looked at the mycobiome, the fungi living in the human body, in 59 ME/CFS patients and 59 controls. Patients had, for example, more Aspergillus and less Candida.