iiinova — where your digital self keeps evolving

ME/CFS Science @mecfsscience.org · 29/09/2026

4) Researchers can submit requests to the registry for projects in which people with severe and severe ME are to be included. Looks like 762 people have already registered, most from Germany.

172

ME/CFS Science @mecfsscience.org · 29/09/2026

1) An initiative worth sharing: The Severe & Very Severe ME Research Registry. It's a website that provides access to research for severely and severely affected ME/CFS patients from Germany, Austria and Switzerland (DACH region).

33616

ME/CFS Science @mecfsscience.org · 20/09/2026

4) The authors wanted a crossover study to compare the same patients on the drug and on placebo. This was difficult because antibody levels take time to recover. Therefore, they came up with a complex 3 arm design with run-in and run-out periods (see overview below).

170

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

ME/CFS Science @mecfsscience.org · 18/09/2026

3) They found 1268 cases meeting this ME/CFS definition, which they could compare to more than 100.00 controls (who didn't have ME/CFS and reported good or excellent health). As the plot below shows, they found multiple DNA differences between the two groups.

170

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

ME/CFS Science @mecfsscience.org · 17/09/2026

6) BioVie, however, points to results of subgroup analyses. If they restrict the comparison to participants who had a high symptom score at baseline, they did find effects favouring Bezisterim (but still with large confidence intervals).

180

ME/CFS Science @mecfsscience.org · 17/09/2026

4) The main results are given in the table below. It shows standardised effects for 22 outcomes, expressed in standard deviations (a common heuristic is: 0.8 is large, 0.5 medium and 0.2 small) No outcomes showed a statistically significant effect for the drug versus placebo.

190

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

ME/CFS Science @mecfsscience.org · 14/09/2026

8 ) A bit more about the document: it's a consensus statement by 19 multidisciplinary experts. Each had a minimum of 10 years of clinical or research experience in ME/CFS. Looks like it was set up by the Polish team of Pawel Zalewski.

181

ME/CFS Science @mecfsscience.org · 14/09/2026

3) They recommend starting with a low-risk evaluation using some validated questionnaires (see screenshot below). Examples are the SF-36 for physical functioning or the DSQ-2 to assess post-exertional malaise. They have worked out ME/CFS thresholds for each tool.

2102

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

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

ME/CFS Science @mecfsscience.org · 05/09/2026

10) Interestingly I found no coloc match for the regions around the genes DCC (PP.H3 = 80%) and OLFM4 (PP.H3 = 85%). I've posted the full analysis (including my attempt at SuSiE-coloc that allows for multiple causal variants) here: s4me.info/threads/th...

1112

ME/CFS Science @mecfsscience.org · 05/09/2026

9) Another interesting region is above the genes DARS2 and RABGAP1L. The signal also looks similar but the colocalization analysis wasn't confident about it. I suspect there might be multiple separate signals at play here.

190

ME/CFS Science @mecfsscience.org · 05/09/2026

1) I looked at the big genetic study on fibromyalgia (Kerrebijn et al. 2026) and how well it correlated with findings for ME/CFS in DecodeME. Using European samples, the correlation was quite big: rg = 0.75. A brief discussion of the implications 👇

2379

ME/CFS Science @mecfsscience.org · 04/09/2026

1) A new paper on ME/CFS is getting media attention: it's about how the chromosomes containing our DNA are folded. These 3D structures can influence the expression of genes. Unfortunately, I don't think this study warrants all the attention...

24016

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

ME/CFS Science @mecfsscience.org · 31/08/2026

1) Very sad news that Jo Cambridge has passed away. She was a Prof. in rheumatology who pioneered B-cell depletion therapy in autoimmune diseases together with Jonathan Edwards. But she also did several useful studies on ME/CFS and was much loved in the community.

13812

ME/CFS Science @mecfsscience.org · 30/08/2026

1) 🇳🇱 In the Netherlands, ME/CFS patient and advocate Anil Van Der Zee was appointed Knight in the Order of Orange-Nassau. It's an recognition of his outstanding contribution to society, a very high honour.

19832

ME/CFS Science @mecfsscience.org · 29/08/2026

I've changed one plot (the Majeed 1996 data) to better show that the difference isn't due to outliers. This study also combined male and females, which might explain the bigger overlap between groups compared to other studies.

0191

ME/CFS Science @mecfsscience.org · 29/08/2026

Thanks. The Majeed data combines male and female patients which probably explain the overlap. Suspect if they were analyzed separately, there wouldn't be overlap. Also see this boxplot by forestglip of the same data showing that it's not just about the outliers s4me.info/threads/hypo...

150

ME/CFS Science @mecfsscience.org · 29/08/2026

5) The studies are all small (< 30 ME/CFS patients) but the effect is large, was found by multiple authors, and wasn't anticipated in advance. Other hormones like cortisol or growth hormone don't show the same difference.

181

ME/CFS Science @mecfsscience.org · 29/08/2026

4) In ME/CFS baseline levels of prolactin are normal but they rise much higher in the hours after taking buspirone than in controls, included those with another illness such as depression. The graph below shows some individual datapoints.

281

ME/CFS Science @mecfsscience.org · 28/08/2026

Here's a screenshot of the abstract. They used 20 biobank cohorts and found (only) 10 genome-wide significant loci, 6 of which have not been previously reported. 60% were consistently detected across all cohorts.

080

ME/CFS Science @mecfsscience.org · 26/08/2026

The ISLC-PAIS Conference in Amsterdam started today. Will not be able to follow unfortunately but look forward to hearing more about this presentation by Martin Broberg from Finland. It says they did a genetic meta-analysis with more than 46,000 ME/CFS patients worldwide.

2267

ME/CFS Science @mecfsscience.org · 19/08/2026

1) The Science for ME forum has published a factsheet on the "Management of severe and very severe ME/CFS." It was written by Professor Emeritus Jonathan Edwards and various forum members. Looks like a useful reference for ME/CFS patients and their carers. A brief summary 👇

12211

ME/CFS Science @mecfsscience.org · 17/08/2026

2) The treatment consists of repeated cycles of hypoxic and hyperoxic exposure. So patients get periods with too much and too little oxygen using the HypoxBreath device, which dynamically adjusts the fraction of inspired oxygen. (Image below taken from hypox-breath.com/en/)

170

ME/CFS Science @mecfsscience.org · 17/08/2026

1) 🇩🇰 Looks like there's a new ME/CFS trial in Denmark called 'REenergizeME'. It will test intermittent hypoxiahyperoxia treatment (IHHT) in 104 female patients selected using the international consensus criteria. It includes FUNCAP and several objective outcomes.

1278

ME/CFS Science @mecfsscience.org · 16/08/2026

2) The genes associated with ME/CFS were enriched in several of these synaptic categories. Here's what the main result looks like. The table shows the names of the categories, the number of genes, and the P-values associated with them.

180

ME/CFS Science @mecfsscience.org · 16/08/2026

1) Many of the genes linked to ME/CFS in DecodeME point to neural synapses. We therefore did an analysis using SynGo, a large database of synaptic genes. Experts in the field grouped these genes into multiple categories based on their location or biological function.

1309

ME/CFS Science @mecfsscience.org · 15/08/2026

6) The award is meant to recognize the commitment of early-career researchers. The ME/CFS field is highly underfunded, so it takes a strong dedication to take on a pioneering role. The award signals that this dedication is valued and appreciated.

160

ME/CFS Science @mecfsscience.org · 15/08/2026

1) The WE&ME Foundation has created an 'Emerging Leader Award'. It recognises outstanding early-career researchers who combine scientific excellence with meaningful engagement in ME/CFS or related post-infectious diseases. The application deadline is 15th October 2026.

22611

ME/CFS Science @mecfsscience.org · 14/08/2026

4) Let's start with the cerebral blood flow, measured using arterial spin labelling (ASL). Here, the differences weren't very clear. There was a trend toward lower increases in blood flow during the second hypoxia test, but not across all regions.

1100

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

ME/CFS Science @mecfsscience.org · 13/08/2026

5) The graph below shows the daily step count of the 18 participants as recorded by a smartwatch. There was no significant improvement. It's a bit curious, though, that the starting step count was so high (9029 steps per day). This contrasts with their low Bell score of 39.8.

3100

ME/CFS Science @mecfsscience.org · 13/08/2026

3) Immunoadsorption was performed over one week (on days 1, 2, 3, 5, 7) using the LIFE 21® apheresis device. The treatment did what it should do: antibodies against β1/β2-adrenergic and M3/M4-muscarinic acetylcholine receptors decreased spectacularly (see graph below).

160

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

ME/CFS Science @mecfsscience.org · 12/08/2026

5) The paper notes, however: "Upon evaluating viral reactivation during the acute stage of COVID19, no significant relationship was found with PRO groups." So there was no link between viral reactivation during acute infection and Long Covid.

190

ME/CFS Science @mecfsscience.org · 12/08/2026

2) This was a major study with 1,154 participants hospitalized with COVID-19 across 20 US hospitals between May 2020 and March 2021. Viruses were detected in blood, nasal swabs, and lung and airway fluid (in patients who were intubated).

1100

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

ME/CFS Science @mecfsscience.org · 10/08/2026

1) 🇨🇦 Disappointing to see that McMaster University is sponsoring a trial of the Lightning Process for Long Covid. The study isn't blinded and only uses subjective outcomes such as fatigue questionnaires so its results will be biased by expectations and therapist instructions

25612

ME/CFS Science @mecfsscience.org · 08/08/2026

5) For example of the Long Covid patients, 60% had a severe infection compared to 23.8% in the control group, quite a notable difference. LC patients also had a longer duration of their acute COVID-19 infection. These were much bigger differences than for physical activity.

130

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

ME/CFS Science @mecfsscience.org · 07/08/2026

4) They also have data on distal skin temperature. There isn't much in the paper on what this represents, but perhaps a measure of blood flow to the extremities? Results were similar in patients and controls except that the former had more intradaily variability.

160

ME/CFS Science @mecfsscience.org · 07/08/2026

3) All measurements were taken during a seven-day period in the summer months (June to September). The actigraphy shows a similar pattern in patients and controls, but with a lower mean activity level in patients.

160

ME/CFS Science @mecfsscience.org · 07/08/2026

1) 🇪🇸 A Spanish study measured light exposure using the ActTrust wearable device in 100 ME/CFS patients and 56 healthy controls. Patients had lower average light exposure, reduced amplitude, and greater fragmentation of the light–dark cycle.

1174

ME/CFS Science @mecfsscience.org · 06/08/2026

4) The authors used the Dimitrov index as a measure of muscle fatigue. It reflects a shift from high frequencies toward low frequencies in the electrical signal. The controls had the expected increase in the Dimitrov index, while ME/CFS patients did not.

180

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

ME/CFS Science @mecfsscience.org · 04/08/2026

8) The results are shown below: there was basically no improvement in PEM scores. Secondary outcomes (mental health, severity of problems in usual activities, anxiety and depression, fatigue, and breathlessness) did improve but equally in both groups.

160