1) Finally had a look at the new trial of Rapamycin, an FDA-approved drug that is used an immunosuppressant to prevent organ rejection.

86 ME/CFS patients were included in a pilot trial and received a low dose of rapamycin of 6 mg once per week. 2) How did the Simmaron Researchers came to Rapamycin?

They first found that ME/CFS subjects had elevated levels of the early autophagy protein ATG13 and that these were heavily phosphorylated.

1) A new Norwegian study tested more than 6000 proteins in the serum using aptamers (small pieces of DNA or RNA that can bind with specific targets such as proteins).

751 proteins showed a significant difference between ME/CFS patients and controls. 2) This aptamer method has been tried before in two ME/CFS studies but these had small sample size of 20 patients or less.

This Norwegian study had 54 ME/CFS patients who were recruited from the Rituximab and Cyclophosphamide trials.

1) A fascinating new hypothesis on ME/CFS by prof. Emeritus Jonathan Edwards and colleagues.

Well worth a read as it provides some fundamental thinking about what we know about ME/CFS and what might explain the syndrome. 2) Age profile: Edwards et al. note that the incidence of ME/CFS rises steeply in teenage years. Onset rarely occurs under the age of 10.

This steep early rise reminds them of seronegative spondyloarthropathies (likely T cell-mediated) and systemic lupus (autoantibody-mediated).

1) This new paper by Van Campen & Visser shows an impressive separation between two groups of ME/CFS patients with POTS. 2) Cardiac output and cerebral blood flow (CBF) were measured using doppler flow velocity during a tilt test.

The biggest group (2/3rds of patients) had moderate heart rate increases but showed a strong relation between CBF reduction and the reduction in cardiac output.

1) One of the most interesting ME/CFS studies of 2025 this far, from the research teams of Hanson (Cornell) and Snyder (Stanford). 👇

A neural network on rare genetic variants, found 115 ME/CFS risk genes. 2) The authors used 3 cohorts in this study: one from Stanford, one from the UK ME/CFS biobank (CureME) and one from Cornell.

The first two were used as discovery cohort (247 ME/CFS cases, 192 controls), the latter as testing cohort (36 cases, 21 controls).

1) Another interesting study Gemma Samms and Chris Ponting.

They looked closely at data on ME/CFS in the UK biobank and found that some of these may not be very reliable. 2) Take for example self-reported diagnoses. Participants to the biobank could report serious illnesses in a verbal interview with ‘chronic fatigue syndrome’ as one of the recorded options.

1) What it's like to become an adult with ME/CFS? I think this Australian study captures the most important themes quite well. 2) For example:

- The struggle between becoming an adult and remaining dependent on family members because of illness.

- The disbelief by doctors which cause an erosion of trust in the medical profession, and in yourself because your experiences are constantly questioned.

1) The data from a large survey of 8804 people with ME/CFS or Long Covid was just published in BMJ Open. The ME Association organized the survey. 2) For more than a third of respondents, it took more than 2 years to get an ME/CFS diagnosis since first noticing symptoms (we've made the graph below to make it a bit easier to see the data).

For 13%, it took more than 10 years to get a diagnosis.

1) Interesting article about the German ‘Miracle’ study.

The project received ca. 2.5 million in funding to study neutrophil granulocytes and HDL in ME/CFS patients. 2) Neutrophil granulocytes cannot be easily cultured and must be examined immediately after removal and isolation.

The researchers, led by Dr. Alexander Dejaco at the University of Regensburg, suspect that these cells may play a key role in ME/CFS.
nachrichten.idw-online.de/2025/01/22/ukr…

1) Interesting study with somewhat surprising results:

Mendelian randomization shows no sign of a causal relationship between major depressive disorder (MDD) and (self-reported) ME/CFS. 2) Previous studies noted that MDD and ME/CFS have symptom overlap and frequently co-occur. Some suggested that MDD might be a risk factor of ME/CFS.

Those studies, however, are based on correlation and cannot exclude confounders and determine causation.

1) Here it is, our overview of the most interesting ME/CFS studies of 2024.

If you think we’re missing an important one, feel free to post it as a comment below 👇
mecfsskeptic.com/2024-looking-b… 2) A recent preprint used data from the UK Biobank and showed that there are many differences in the blood between ME/CFS patients and controls.

Their analysis suggests that these differences are not due to inactivity or deconditioning.

1) In the process of reviewing the most interesting ME/CFS-studies of 2024.

I think this one ranks top of the list: Beentjes et al. 2) The authors used data from hundreds of 40-69 year olds ME/CFS patients from the UK biobank and thousands of controls. They controlled for sex, age and activity level and tested blood markers, proteomics and metabolomics,

medrxiv.org/content/10.110…

1) Martha Exck and colleagues did a large online survey of 2,125 patients with ME/CFS and 1,800 with Long COVID on what interventions they find useful or harmful.

The study was partly supported by the Open Medicine Foundation (OMF) 2) Let’s start with the caveat that social media surveys like this have a large response bias and cannot tell us which treatments work or not, you need randomized controlled trials for that.

But it still shows some interesting things.

1) Some background on the ongoing Cochrane saga...

Before 2019, several patients and researchers pointed out flaws in the exercise review for CFS and asked these to be corrected or withdrawn.

https://twitter.com/TomKindlon/status/1868678714533597490

2) It was Cochrane itself that came up with the initiative of writing an entirely new review with a new protocol, author group, an advisory panel, etc.

1) This Belgian trial tested a combination of symptom-contingent pacing and dietary advice for Long Covid patients. The control group received standard physiotherapy.

Unfortunately, the intervention was not effective. 2) The primary outcome was 1-minute sit-to-stand repetitions which showed a non-significant difference of -0.97 [-3.70, 1.75]. The authors defined a minimally clinically important difference as 3 repetitions.

1) The California Emerging Infections Program has a surveillance program for ME/CFS called STOP ME/CFS (Surveillance to Optimize Protocols for Early Identification and Subgrouping of ME/CFS). 2) STOP ME/CFS involves annual surveys to identify patients with an ME/CFS-like illness among Kaiser Permanente Northern California (KPNC) 's 4.5 million members.

The program published this preprint in collaboration with people from the CDC.
medrxiv.org/content/10.110…

1) There are quite a lot of problems with this review of interventions for Long Covid.

First of all, the authors did not actually do any meta-analysis yet. The abstract does not make this very clear, but each of the reported outcomes reported is based on 1 study (n_trials = 1).

https://twitter.com/EricTopol/status/1861922439753540047

2) The repeated statements on physical and mental health rehabilitation (that it improves depression, quality of life, and recovery) are all based on 1 trial: the REGAIN study.
pubmed.ncbi.nlm.nih.gov/38325873/

1) Which ME/CFS studies did the National Institutes of Health (NIH) fund in 2024?

We published a new blog post that briefly describes all projects.
mecfsskeptic.com/nih-funding-fo… 2) One of the most interesting studies takes place at Columbia University. It uses a smartphone app where patients can enter their symptoms and whether they are having a good or bad day.

1) The German agency for research BMBF has published the results of their call for proposals on ME/CFS. Approximately € 15 million is going to 7 projects and research networks over the period 2024-2027. 2) There is one individual project called FAME which receives € 1.75. It is led by Dr. Bettina Hohberger and will study the role of autoantibodies against G protein-coupled receptors in ME/CFS patients.
gesundheitsforschung-bmbf.de/de/fame-funkti…

1) The results of the FITNET-NHS trial have just been published, the biggest randomized trial for children and adolescents with ME/CFS.

Here’s a brief overview of its main results.
mecfsskeptic.com/fitnet-nhs-a-s… 2) 314 participants were randomized to receive either FITNET (online cognitive behavioral therapy) or Activity Management. Both interventions were delivered remotely and lasted 6 months.

1) New blog post on hypermobile Ehlers-Danlos Syndrome (hEDS) and hypermobile spectrum disorder (HSD).
mecfsskeptic.com/heds-and-hyper… 2) Epidemiological studies show no clear relationship between hypermobility and symptoms such as chronic widespread pain, which questions the validity of these diagnoses.