Sign in

ME/CFS research

@cfsresearch.bsky.social
529 followers 84 following 1.1K posts

Interested in research into ME/CFS/MECFS, FND and related conditions. medium.com/@cfs_research

PostsRepliesMedia
Reposted by ME/CFS research
Tom Plender @tomplender.bsky.social · 28/09/2026
1/ conversion disorder and deconditioning/illness beliefs model have been a simplistic disaster, ME/CFS should be under neuro immunology, not the pseudoscientific dustbin of 'psychogenic illness' - www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
1174
ME/CFS research @cfsresearch.bsky.social · 24/09/2026
Pretty skewed and unhelpful article, as usual.
000
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 20/09/2026
1) The team of Andreas Goebel was the first to transfer autoantibodies of fibromyalgia patients to mice (similar studies later followed in Long Covid). In this paper, they tested rozanolixizumas: a drug that lowers circulating antibody levels. A brief summary of the results 👇
2189
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 18/09/2026
1) A genetic analysis of the UK Biobank found 7 ME/CFS hits that were replicated in another cohort such as the All of Us cohort. One signal matched with expression of the gene CLYBL in the putamen brain region. But there are many caveats. None replicated in DecodeME.
4296
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 17/09/2026
1) The pharma company BioVie announced the results of the phase 2 trial of their drug Bezisterim for Long Covid. Although the primary analysis showed no significant effect, an analysis in subgroups with a great symptom burden suggested an improvement. A brief breakdown 👇
1238
Reposted by ME/CFS research
Jon Stone @jonstoneneuro.bsky.social · 13/09/2026
Scamvougeras and Castle express the view that FND should be framed ONLY in psychiatric terms in a new article @CogNPsychiatry zurl.co/pSx1u My reply explains why I think this historical - and dualistic - approach is wrong: zurl.co/OAcPN
183
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 14/09/2026
1) There's a new consensus statement on ME/CFS diagnosis and assessment by 19 experts. The table below shows some of the objective tests they recommend for various symptom domains including a standing test, polysomnography, actigraphy, CPET, NK cytotoxicity, etc.
33511
Reposted by ME/CFS research
Chris Ponting @cgatist.bsky.social · 14/09/2026
📢 New ME/CFS genetics preprint from the Beentjes/ Khamseh/ Ponting groups NB: Not DecodeME We discover 7 genetic associations to ME/CFS that are independently replicated in UK Biobank and/or All of Us ME/CFS case/control status required multiple lines of evidence www.medrxiv.org/content/10.6...
ME/CFS cases (or controls) were defined using multiple lines of evidence in 2 independent UK Biobank cohorts, and 1 independent All of Us cohort. We needed to restrict genetic ancestry to Europeans to minimise the chance of spurious associations. Next, we used TarGene to estimate the effects of genetic variants on ME/CFS risk. Finally, we replicated 7 variants that were both significant in a Discovery GWAS, and in one of two Replication GWAS.
23820
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 11/09/2026
1) This study found that ME/CFS patients often have too low blood and low red blood cell volume. But surprisingly, these measures weren't related to orthostatic intolerance as measured by a lean test. This suggest that hypovolemia isn't the main reason for orthostatic problems.
34816
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 01/09/2026
1) Many patients with orthostatic intolerance do not meet the require heart rate increase of POTS criteria. This new expert consensus paper argues that that this group deserves more recognition, including a separate diagnosis and ICD-code.
33312
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 29/08/2026
1) New blog article: the hormone prolactin rises much higher in ME/CFS patients after taking buspirone than in controls. This is one of the most replicated findings in the field but for years this line of research was abandoned.
mecfsscience.org
Increased prolactin response to buspirone - ME/CFS Science
Multiple studies have found an increased response of the hormone prolactin to the drug buspironeContinue readingIncreased prolactin response to buspirone
34016
Reposted by ME/CFS research
Steve Hudson @dustcircle.bsky.social · 16/08/2026
Why one of the most common #braindisorders is also one of the most misunderstood The story of functional #neurologicaldisorder is beginning to turn a corner. www.fastcompany.com/91590677/fun...
fastcompany.com
Why one of the most common brain disorders is also one of the most misunderstood
The story of functional neurological disorder is beginning to turn a corner.
044
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 15/08/2026
For people interested in details of this study on brain scans and hypoxia in ME/CFS. One of the authors wrote a very thoughtful reply to comments about the study on the S4ME forum. Read the discussion here: s4me.info/threads/expe...
s4me.info
Preprint - Experimental hypoxia to probe neuro-metabolic and vascular dysregulation in ME/CFS: a multimodal proof-of-concept MRI study, 2026, Bader et al.
Now, when exposed to the simulated hypoxic conditions, the Lac/tCr ratio increases less than healthy controls, this could mean there is a lesser capacity for additional compensatory glycolysis to be g...
0226
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 14/08/2026
1) 🇦🇹 Interesting study that tested brain blood flow and metabolites under experimentally induced hypoxia (they gave ME/CFS patients less oxygen while lying under the MRI scanner). The idea is that this might reveal brain differences during a stressor.
1327
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 13/08/2026
1) Unfortunately, another negative result for immunoadsorption for Long Covid. A small trial that focused only on patients with elevated levels of antibodies against β1/β2-adrenergic and/or M3/M4-muscarinic acetylcholine receptors found no improvement in objective outcomes.
1247
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 12/08/2026
1) 🇺🇸 A new paper in Nature shows that viral reactivation is common in COVID-19, associated with severity and not primarily a consequence of immunosuppression. The association with Long Covid, however, was far from clear.
12810
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 08/08/2026
1) 🇩🇪 In the CoCo-Fakt study at Cologne and Ausberg, patients with Long Covid reported doing more and more intense physical activity than controls who had COVID-19 but no long term symptoms. The researchers expected the opposite.
2105
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 06/08/2026
1) 🇺🇸 A new NIH study argues that the fatigue experienced by ME/CFS patients likely has a central (in the brain) rather than a peripheral (in muscle) origin. They put patients in an MRI scanner and recorded electromyography during grip strength exercises. A brief breakdown.
1288
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 04/08/2026
1) Had a closer look at this randomised trial on pacing from earlier this year. It tested an app, warning system, and wearable device to help Long Covid patients pace, but unfortunately, it didn't have an effect on post-exertional malaise (PEM) and other symptoms.
1147
ME/CFS research @cfsresearch.bsky.social · 22/07/2026
Systematic review of randomized clinical trials for the treatment of long COVID syndrome scholarlycommons.gbmc.org/jchimp/vol16...
scholarlycommons.gbmc.org
Systematic review of randomized clinical trials for the treatment of long COVID syndrome
Background: There is a critical need for interventions for long COVID. Our aim was to conduct a systematic review on the efficacy and safety of different interventions in patients with long COVID. Met...
020
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 21/07/2026
1) We wrote a new article on cell and tissue analysis using genetic data. For ME/CFS, the results strongly point to neurons. One of the top hits is the medium spiny neuron, located in a region deep inside the brain called the striatum.
mecfsscience.org
Cell and tissue enrichment in ME/CFS - ME/CFS Science
By matching DNA results with gene expression databases researchers can determine the tissues and cellContinue readingCell and tissue enrichment in ME/CFS
25630
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 17/07/2026
1) 🇧🇪 A Long Covid study from Brussels tested if the 6MIST, a relatively simple exercise test, is a valid alternative to the 2-day cardiopulmonary exercise testing (CPET) that has been used to measure PEM. In brief, the answer was no.
2287
Reposted by ME/CFS research
Gillian Branstetter @gbbranstetter.bsky.social · 15/07/2026
RFK Jr. asked the National Institute of Health to dedicate $5 billion (!) to finding a link between vaccines and autism. "That would have dedicated more than a tenth of the NIH’s annual budget to investigating a hypothesis already refuted by scientists worldwide."
reuters.com
Inside RFK Jr.’s push to dismantle decades of U.S. vaccine policy
Insider accounts reveal the scale of the health secretary's ambitions to curb childhood immunizations and unearth a link between vaccines and autism.
28139341495
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 14/07/2026
1) A new randomized trial in Long Covid patients tested Temelimab, a drug that targets a potentially pathogenic protein (HERV-W ENV) from endogenous retroviruses. Unfortunately, the results are pretty clear: Temelimab had no beneficial effect.
3307
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 13/07/2026
1) 🇮🇹 An Italian hospital showed reduced nerves in the gastric lining of Long Covid patients compared to controls. It was a preliminary study though, with only 12 patients and 8 controls.
Figure1. Gastric mucosa denervation in Long-COVID-19 patients. The panel shows 
gastric mucosa denervation in Long-COVID-19 patients in the fundus in A and C and compared to controls.
1196
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 11/07/2026
1) 🇬🇧 The results of the big STIMULATE-ICP study are in. It tested three repurposed drugs in hundreds of Long Covid patients: - colchicine: an anti-inflammatory - famotidine and loratadine: antihistamines - rivaroxaban: an anticoagulant Sadly, all three had poor results.
1247
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 10/07/2026
1) "SARS-CoV-2 antigens circulate in plasma up to one year after infection in a minority of individuals, regardless of whether they develop Long COVID or not, and become rarely detectable later on."
22412
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 30/06/2026
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...
25017
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 18/06/2026
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.
1365
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 13/06/2026
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.
1214
Reposted by ME/CFS research
FND Portal @fndportal.bsky.social · 11/06/2026
FND Action is literally run by people with FND and family members of people with FND. Yes, actual disabled people! They put their names + photos on the website and social media. You should be ashamed at spreading this conspiracy theory nonsense - to say nothing of the stigmatizing of FND.
241
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 08/06/2026
The study has now been published in the Journal of Translational Medicine. 👇 link.springer.com/article/10.1...
link.springer.com
Hyperbaric oxygen therapy improves clinical symptoms and functional capacity and modulates thalamic connectivity in ME/CFS: a prospective cohort study - Journal of Translational Medicine
Background Hyperbaric oxygen therapy (HBOT) has been proposed as a treatment for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), but evidence remains limited. This study evaluated its cli...
2154
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 08/06/2026
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.
2267
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 04/06/2026
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.
2209
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 03/06/2026
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.
3157
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 03/06/2026
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...
2102
Reposted by ME/CFS research
Climate, Ecology, War & More: Dr. Glen Barry BigEarthData.ai @bigearthdata.ai · 28/05/2026
Scientists thought brain inflammation was driving long COVID but the scans told a different story ->ScienceDaily | More on "Long COVID brain inflammation research" at BigEarthData.ai | #Science #Covid
sciencedaily.com
Scientists thought brain inflammation was driving long COVID but the scans told a different story
Long COVID has often been suspected to involve ongoing inflammation in the brain caused by SARS-CoV-2 infection. Scientists have explored this theory as a possible explanation for symptoms such as fatigue, brain fog, anxiety, and depression. However, direct proof has remained limited. To investigate the issue more closely, researchers at the University of Turku in Finland used advanced brain imaging techniques to examine people with long COVID who continued to experience symptoms long after infection. "We did not observe evidence of widespread brain inflammation in patients with long COVID when compared to healthy controls," says Professor of Neuroimmunology and InFLAMES Research Flagship group leader Laura Airas, who led the study. Comparing Long COVID Patients With Healthy Volunteers and MS Patients The study included 14 people with long COVID, 11 healthy participants, and 13 individuals with multiple sclerosis (MS), a neurological disease known to involve inflammation in the brain. All participants underwent PET scans designed to detect neuroinflammation, along with magnetic resonance imaging (MRI) scans to evaluate brain structure and changes in white matter. Researchers also analyzed blood samples for biological markers associated with damage to neurons and supporting brain cells. Compared with patients who had MS, the long COVID group...
001
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 20/05/2026
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.
1296
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 18/05/2026
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.
Screenshot of the paper: "Biological Insights from Genome-Wide Association Studies and Whole Genome Sequencing of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"
15926
Reposted by ME/CFS research
Simon McGrath @simonmcg.bsky.social · 18/05/2026
4 key things about the new £4.7m ME/CFS DNA study DNA uses 4 chemical letters — A, T, G and C — to encode the instructions to build and run a human. The genome contains 3 billion of these letters. 1️⃣ This study uses full genome sequencing to read all of them, while DecodeME…
12113
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 17/05/2026
9) Link to the study: Uppal et al. A Randomized Crossover Trial of Ivabradine, Propranolol, and Placebo in Postural Orthostatic Tachycardia Syndrome. www.jacc.org/doi/10....
181
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 15/05/2026
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.
Graph showing large overlap in adrenergic and muscarinic autoantibodies between ME/CFS patients, Long Covid patients, and healthy controls.
4258
Reposted by ME/CFS research
Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 13/05/2026
An excellent blog by @simonmcg.bsky.social which explains what the £4.75 million that the UK government has given to Sequence ME and Long Covid will be used to do: mecfsresearchreview.me/2026/05/12/d... You can donate to the study here: www.actionforme.org.uk/research-cam...
mecfsresearchreview.me
DNA sequencing study to help pinpoint biology of ME gets £4.7m
The UK government has given nearly £5 million to fund full sequencing of the DNA of 6,000 people with ME using the best available technology. This will help scientists home in on what is really dri…
12413
Reposted by ME/CFS research
Institute of Genetics and Cancer @uoe-igc.bsky.social · 12/05/2026
@cgatist.bsky.social leads DecodeME at IGC: “By deeply sequencing the complete genomes of 6,000 DecodeME participants using advanced long-read technology, this project will allow us to pinpoint individual genes disrupted in ME/CFS, moving beyond broader chromosomal signals identified to date."
0106
ME/CFS research @cfsresearch.bsky.social · 08/05/2026
Low-Dose Naltrexone: What is the Evidence? A Narrative Review link.springer.com/article/10.1...
link.springer.com
Low-Dose Naltrexone: What is the Evidence? A Narrative Review - Advances in Therapy
Naltrexone is prescribed off-label at low doses, typically 0.5–6.0 mg, for a variety of therapeutic indications. This review evaluates the clinical evidence for low-dose naltrexone (LDN). A literature...
020
Reposted by ME/CFS research
ME/CFS Science @mecfsscience.org · 02/05/2026
1) There's a new review on Long Covid by Mark Faghy and (many familiar) co-authors. I wanted to zoom in on their section on post-exertional malaise (PEM). I'm a bit skeptical, for example, about their statement that 50-80% of Long Covid patients experience PEM.
13810