1) Had a closer look at the BioMapAI paper in Nature Medicine that is getting a lot of media coverage.

The research group of Derya Unutmaz (@DeryaTR_) and Julia Oh at The Jackson Laboratory created an impressive rich dataset and analyzed it using a deep neural network. @DeryaTR_ 2) They tracked 153 ME/CFS patients and 96 age- and gender-matched controls over a period of 4 years.

The dataset includes:

- 48 standard blood parameters
- mass spectrometry of 958 metabolites in plasma
- immune cell profiling
- gut metagenomics of stool samples

1) An impressive dataset on ME/CFS was just published by the research team of Ian Lipkin.

They tested multiple proteins and metabolites in 56 ME/CFS patients and 51 controls before and after exercise and cytokines in response to mimics of viral, bacterial, and yeast infection. 2) Let's start with the cytokine response. The researchers measured this after exposure to antigens that mimic:

- a fungal infection (HKCA)
- a bacterial infection (LPS)
- a viral infection (poly I:C)
- superantigens (SEB) which triggers a nonspecific T-cell response

1) The Dutch research agency ZonMw announced a list of new Long Covid studies that will receive funding. The total budget was approximately €6 million.

There are some interesting projects that will also be relevant to #MECFS. 2) A study led by dr. Rob Wüst from Amsterdam University will study immune cell infiltration on muscle tissue and mast cell activation during post-exertional malaise. Focus is on how immune cells affect muscle recovery.

1) The Canadian research group of Alain Moreau published a big study on Sphingomyelin phosphodiesterase acid-like 3B (SMPDL3B) as a potential biomarker for ME/CFS.

Unfortunately, it seems that the results could simply be due to sex differences and contraception use... 2) As a recap, here are their main findings.

Figure 2.A shows that SMPDL3B levels in plasma were significantly elevated in the Canadian ME cohort of 249 patients compared to 63 healthy controls.

1) A research team at the University of Surrey are studying the electrical properties of white blood cells in ME/CFS.

They reported that after salt treatment, these proporties change differently in ME/CFS donors compared to healthy controls and patients with multiple sclerosis. 2) This research followed up on the famous nanoneedle findings. In 2019, the team of Ron Davis found spectacular differences between ME/CFS patients and controls in the electrical impedance of white bloods cells. The effect was clearest after 1.5 hours.

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…