1) 🇧🇪 In Belgium, the Federal Knowledge Centre (KCE) published a 144-page report on ME/CFS. It measured the healthcare needs and priorities of ME/CFS patients (shown in the graph below) and recommends investments in research and specialist centres for ME/CFS.

1) We have written an article with more background information on the €7.5 of European funding for #MECFS. 👇 While a historic achievement, one project can not undo decades of underfunding. Our goal is a long-term support for ME/CFS research. europeanmecoalition.com/e-7-5-millio...

1) 🇪🇺 Good news! The European Union has awarded € 7.5 million for a big ME/CFS consortium that will study biological mechanisms in hundreds of patients. This is a major milestone for ME/CFS research in Europe.

In April @ukbiobank.ac.uk stopped all researchers from accessing their Research Analysis Platform. In May they indicated they would “provide a more specific timetable in early June”. Until access is restored @decodemestudy.bsky.social analysis is stalled. We will keep all participants informed.

1) 🇷🇸 The University Clinical Center of Vojvodina, in Serbia, followed up on 20 female ME/CFS patients for 16 years. This is probably one of the longest follow-up studies in the field.

1) 🇩🇪 The results of the German rehabilitation program for ME/CFS have been published. Unfortunately, the results are rather bleak: there was no improvement on multiple outcomes. A closer look at the main findings...

An argumentation theorist's ethnographic case study about the Cochrane review on ME/CFS raises, I think, structural implications for journals like Cochrane's. My latest post @plos.org absolutelymaybe.plos.org/2026/06/24/v...

1) 🇯🇵 A Japanese group published their hypothesis of Long Covid. They suspect SARSCoV-2 causes a reactivation of another virus (HHV-6B) in the olfactory bulb where it produces a protein (SITH-1) that reduces acetylcholine levels in the brain. Let's have a closer look...

1) 🇺🇸 The Research team of Nancy Klimas in Florida has received a $ 3 million grant from the National Institutes of Health (NIH). Their study will investigate whether exposure to toxic mold affects symptom severity and the immune system in ME/CFS patients.

1) 🇬🇧 The ME Association published results of their new TIMES survey among 1028 adult ME/CFS patients. Women had a greater symptom burden than men. DecodeME previously reported something similar, namely that women have more symptoms and comorbidities than men.

1) 🇳🇱 A large study in the Netherlands found that 17% of people with Long Covid left the workforce, compared with 9% of controls who never had LC. Productivity loss was up to three times higher.

A new philanthropic initiative called 'Intercept' will invest $500 million in preventatives and air cleaning technologies to combat respiratory infections. Hope this will also have an effect on postviral diseases such as ME/CFS and Long Covid. www.interceptfund.com

1) 🇳🇴 A Norwegian study replicated the finding that ME/CFS patients have more extracellular vesicles (EV) than healthy controls. This may point to increased cellular communication.

1) 🇳🇿 A survey in New Zealand among 333 ME/CFS and Long Covid patients found that half of the respondents had experienced food insecurity in the past 12 months.

Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of June 15 - 21. s4me.info/threads/news... This week's highlight - WE&ME Projects announcement! www.weandmecfs.org/weme-projects/ #MEcfs #PwME #LongCovid #PwLC

1) A PET study from the Mayo Clinic found hypometabolism, particularly in the occipital lobe (at the back of the head), in 40 Long COVID patients. Unfortunately, there were no direct control participants. Values were compared to age- and gender-matched data from a database.

So good to see proper studies like this of treatments, even if the studies show the treatments don't help. This helps the science, and saves PwME expanding energy and money on treatments with poor results. Research can focus on subgroups that might benefit.

1) A randomised trial of immunoadsorption in 40 Long COVID patients unfortunately found no significant effect on multiple outcomes. This is similar to the ME/CFS trial reported at the Berlin conference this year.

Foundations doing what the state and national researchers should be doing. And proving of course that advancing #ME research it is not only a matter of funds but simple willingness to follow the science and decades of patients experience.

1) The WE&ME Foundation has launched a major international call for ME/CFS research in collaboration with the Science for ME forum. It aims to fund 7 projects with a budget of €120,000-180,000 per project. The stage 1, short proposal, deadline is 25 August 2026.

1) This review found that people with ME/CFS are profoundly impacted by stigmatisation and that it also affects their social circles, such as friends and family. The most frequently identified issue was stigmatising experiences by healthcare professionals and physicians.

1) In 2007-2010, the Netherlands experienced one of the biggest Q-fever epidemics ever recorded. This new study shows that more than 10 years later, the quality of life of people with Q-fever fatigue syndrome remains consistently reduced.

1) Watched this presentation by Dr. Steve Gardner from PrecisionLife. Their genetic analysis suggests that ME/CFS is highly polygenic and heterogeneous. They are using their data to make drug repurposing trials more effective, for example on GLP-1 receptor agonists.

1) 🇰🇷 There's another preprint by a single author (Junhyun Lee) analysing the DecodeME genetic dataset. It found substantial genetic correlations with Irritable bowel syndrome and depression, and a link with inhibitory neurons from the Descartes Human single-cell atlas.

1) 🇧🇪 Researchers from Leuven and Hasselt university published a protocol for an extensive ME/CFS study. It includes cytokine measurements, MRI and PET scans, gut microbiome analysis, and salivary cortisol following a stress test.

1) A research collaboration including Theoharis Theoharides and Nancy Klimas reports dramatically elevated levels of MMP-9, an enzyme that components of the extracellular matrix. They previously reported similar results in Long Covid but I have doubts about their reliability.

The study has now been published in the Journal of Translational Medicine. 👇 link.springer.com/article/10.1...

1) There is now also an paper on caring for patients with (very) severe ME/CFS. The guide describes how care should be adapted, from nutrition and personal hygiene to communication and dealing with energy limits and stress.

1) Some thoughts on this new paper and what it means for 2-day cardiopulmonary exercise testing (CPET) protocol in ME/CFS. For a long time, this was one of the most valuable and replicated findings in ME/CFS research, with patients failing to replicate their objective exercise values.

Some argue that these negative results are due to using the Fukuda criteria. 👇 Yet, many previous 2-day CPET studies that reported significant effects also used the Fukuda criteria as inclusion. See an overview here: s4me.info/threads/card...

1) The results of Benjamin Natelsons two-day exercise study have been published. This work was supported by an NIH grant. They tested 58 ME/CFS patients and 25 matched controls but did not find any differences. There was no decline in exercise measures on the second test.

1) In this interview with David Tuller, Prof. Chris Ponting gave more info about the SequenceME & Long Covid project that received £4.75 million from the UK government. It will measure the whole genome of ME/CFS patients in high resolution so that rare mutations can be found.

1) Action for ME is launching the PRIME ME/CFS Research Involvement Hub. It aims to create the world’s first network of at least 100 people with lived experience of ME, supported and trained in Patient and Public Involvement (PPI) to work alongside researchers.

Interesting to add to the mix that in the fibro study with similar findings they went even further saying mast cells were mediating between those aabs and tissue tamage! Take out mast cells and even with pathogenic aab, no damage...

1) Impressive paper from Iwasaki’s lab pointing at autoimmunity in a subgroup of Long Covid patients. They replicated previous experiments of antibody transfer causing symptoms in mice. A couple of findings that stand out…

1) An NIH study found that ME/CFS and Long Covid patients have reduced levels of norepinephrine and its metabolites in the cerebrospinal fluid. The norepinephrine reduction correlated with clinical measures such as fatigue, handgrip strength, and general health.

📢 Join the PRIME ME/CFS Research Involvement Hub! Today, PRIME have launched their new ME/CFS Research Involvement Hub which aims to build a virtual network of people with lived experience of ME and match them with research projects to help shape the delivery of those projects.

1) There’s an interesting lead in the ME/CFS genetic data: the eccentric medium spiny neuron (eMSN), a cell type in the brain discovered only a couple of years ago. All based on preliminary findings, but the data looks rather interesting.

1) Interesting blog by Siebe: - "How I learned to doubt a paper" He explains how he gradually became more skeptical of claims on ME/CFS and Long Covid in scientific publications and learned to focus on methodology, replication, statistical analysis etc.

1) 🇫🇷 A French study measured sleep quality in patients' home environment using a wrist accelerometer and sleep diaries for 7 days. Despite having more regular bedtimes, the 38 ME/CFS participants showed more variability in their sleep quality than the 38 controls.

1) Researchers from the Department of Psychiatry and Psychotherapy in Leipzig highlight that evidence for psychological factors in ME/CFS and Long Covid remains limited and speculative. They warn that psychologising these conditions carries significant risks.

1) Independent researcher Paolo Maccalini published an impressive paper implicating synaptic function in specific brain regions in the pathology of ME/CFS. It’s based on three major genetic studies, including DecodeME. The most replicated signal was for glutamatergic synapses.

1) A randomized crossover trial found that both ivabradine and the beta-blocker propranolol were effective at lowering heart rate in patients with POTS. There wasn't a clear effect, though, on symptoms or functional capacity.

1) With genetic evidence pointing to the brain, there is renewed interest on the S4ME forum for the buspirone tests done in the 1990s. A couple of small studies found an increased prolactin response in ME/CFS patients but these findings were never studied further.

Thanks to my mum for getting everything ready for our family #TeaPartyForME2026 on #BlueSunday2026 (on Sun) We’re doing it in aid of @irishmecfsassoc.bsky.social www.idonate.ie/fundraiser/B... but other worthy charities are available (see the-slow-lane.com/donation-pages ) #MEcfs #CFS #BlueSunday

1) 🇪🇸 A new Spanish study measured autoantibodies against adrenergic and muscarinic receptors in 59 patients with ME/CFS, 96 Long Covid and 36 healthy controls. The results show a large overlap, questioning whether these antibodies are involved in ME/CFS pathology.

Good news!

1) 🇳🇱 The Dutch research agency ZonMw announced € 1.5 million in funding for 4 new Long Covid studies. It includes a project by Dr. Rob Wüst that will investigate physical changes (muscle, blood, autonomic function) in people with severe Long Covid who are homebound.

the number of people disabled by ME and LC is massive. It is a crisis. We need more money than this invested. When we say #MillionsMissing we mean it. #MEAwarenessDay

1) 🇬🇧 Good news from the UK: the government is investing 4.75 million pounds in the study "Sequence ME & Long Covid" It will allow the sequencing of 6000 ME/CFS samples previously collected through DecodeME. The project is led by the University of Edinburgh and Action for ME.