2025: looking back on a year of ME/CFS research

[ME/CFS Science Blog]

We've published our review of the most interesting ME/CFS studies in 2025. Feels like it was a fruitful year where we made some modest progress, mostly because of DecodeME. interested in hearing what others think and if perhaps we missed an important paper.

Here's the link to the full blog article:
https://mecfsscience.org/2025-looking-back-on-a-year-of-me-cfs-research/

And here's the shorter summary that we shared on social media:



1) We’ve just published our review of the most interesting ME/CFS studies of 2025.

It feels like this year, we’ve made a significant step towards understanding the pathophysiology of ME/CFS.

A brief overview of the studies that caught our eye.

2) The biggest piece of the puzzle comes from DecodeME and the genetics study by Mark Snyder’s team at Stanford. Both pointed to the brain and neuronal communication.

3) Maureen Hanson’s group published the most extensive study on antibodies in ME/CFS to date, but found null results. Same with Ronald Davis’ search for viruses.

4) A study from De Vlaminck’s lab measured circulating RNA in plasma, which comes from different cells and tissues across the body. If a virus is hiding somewhere, these free RNAs might reveal its presence, but no such clues were found.

5) Lipkin’s team did find evidence of a heightened innate immune response to superantigens and Audrey Ryback replicated an increase in Immunoglobulin Heavy Variable IGHV3-30 on B-cell receptors.

6) The Dutch team of Rob Wüst compared ME/CFS patients to people who underwent 60 days of strict bed rest as part of a NASA experiment. ME/CFS patients did not show some of the hallmark features of severe deconditioning, such as muscle atrophy.

7) Hanson’s group also measured more than 6000 proteins before and after two exercise tests. The most interesting differences were found after a 24h recovery period and showed downregulating of neural and immune pathways in ME/CFS.

8) A replication study of ‘something in the blood’ experiments showed no effect: muscle cells exposed to patient sera didn’t have higher oxygen consumption

9) A conference presentation of 7 autopsies of ME/CFS patients reported a strong reduction in CRH-producing neurons, similar to what was reported in type I narcolepsy.

A metabolic/genetics study also pointed to differences in how the stress system works in ME/CFS.

10) The most interesting treatment trial of 2025 tested daratumumab. This treatment targets long-lived plasma cells that produce antibodies. A Norwegian pilot study of 10 patients showed promising results.

11) For more info and links to the studies, check out the full article on our blog:
https://mecfsscience.org/2025-looking-back-on-a-year-of-me-cfs-research/

If we missed a major ME/CFS study in 2025, feel free to share it in the comments below.

 

[Yann04]

Great article. Really appreciated the inclusion of null results as well. Thank you so much for doing these every year.

Just a tiny formatting thing

In 2025, we got another one of these studies from Spanish researchers. They exposed

 

[OrganicChilli]

I agree, great summary. There's a small typo towards the end "The Norwegian and the Scheibenbogen group both have plants to trial drugs that target CD38 and plasma cells."

 

[Robert 1973]

We just published our review of the most interesting ME/CFS studies of 2025 and shared it in this thread:
2025: looking back on a year of ME/CFS research | Science for ME

Excellent, as always. Thank you.

A couple of typos and language suggestions:

It’s likely fitting the corners and outer layer: we cannot yet see what the puzzle is, but we’re starting to get a glimpse of what it will show.

“Likely” seems to be typo but I would rephrase something like: “It’s like fitting the corners and edges of a jigsaw puzzle: we can’t yet see what the picture is, but we’re starting to get a glimpse of what it might be.”

DecodeME is the largest ME/CFS study ever conducted; more than 15.000 in the United Kingdom participated by sending their DNA through the mail. Their genetic code was compared to that of 250.000 control participants.

15,000 and 250,000

Unfortunately, this didn’t pan out as the phase III rituximab trial showed; patients on the drug fared no better than the control group.

I struggled to understand this paragraph when I first read it. You could put a comma before “as” but I would rephrase it something like: “Unfortunately, the phase III Rituximab trial didn’t pan out as hoped”

 

[Kitty]

15,000 and 250,000

Use of full stops and commas in numerals is reversed in Europe, so it's correct in the Science Blog's home country.

 

[Yann04]

Use of full stops and commas in numerals is reversed in Europe, so it's correct in the Science Blog's home country.

Perhaps it could be changed to “250’000” which is also common in europe (or atleast here in switzerland) but prevents confusion for people who are used to “.” meaning a decimal.

 

[Kitty]

Perhaps it could be changed to “250’000” which is also common in europe (or atleast here in switzerland) but prevents confusion for people who are used to “.” meaning a decimal.

I wouldn't change it, to be honest. It's correct, and even if the convention's unfamiliar, most readers would grasp that it isn't a full stop. People don't tend to write whole numbers to three decimal places.

 

[ME/CFS Science Blog]

Just a tiny formatting thing

There's a small typo towards the end "The Norwegian and the Scheibenbogen group both have plants to trial drugs that target CD38 and plasma cells."

A couple of typos and language suggestions:

Thanks everyone. I've corrected the spelling errors.

 

[Utsikt]

The antibody theory of ME/CFS appears to be as stuck as the hunt for pathogens.

Is this correct? Is it supposed to be «autoantibody»?

 

[Creekside]

I see several negative findings. The question is: will that result in fewer studies continuing to look for the things that weren't found that are needed to support theories important to some people's careers?

 

[Utsikt]

If all of these experiments show negative results, then the antibody theory would take a big blow and become unlikely.

The same as above - is the intention to talk about antibodies or autoantibodies?

If any of these does show an effect, however, it would be another big piece of the puzzle. A real breakthrough.

I’d argue negative results would still be a breakthrough because it would tell us we need to look elsewhere.

 

[V.R.T.]

The same as above - is the intention to talk about antibodies or autoantibodies?

I’d argue negative results would still be a breakthrough because it would tell us we need to look elsewhere.

I agree negative results are important but as I understand it a breakthrough means a significant positive result that changes understanding of a disease.

 

[Utsikt]

breakthrough

I thought it just meant a sudden, substantial and important increase in knowledge.

But yes, it’s probably more common to use about positive findings.

 

[ME/CFS Science Blog]

The same as above - is the intention to talk about antibodies or autoantibodies?

Autoantibodies are just antibodies that target one of your own proteins, rather than a pathogen. So think it's also correct to just say 'antibody theory'.

I’d argue negative results would still be a breakthrough because it would tell us we need to look elsewhere.

Yes but with negative results there will never be 100% certainty that a hypothesis is refuted so suspect that some group will not give up on it. A bit like the Japanese group that wants to trial Rituximab again.

 

[Utsikt]

Autoantibodies are just antibodies that target one of your own proteins, rather than a pathogen. So think it's also correct to just say 'antibody theory'.

Sure, but can’t antibodies still be involved without autoimmunity? And if the studies have primarily been looking for autoantibodies, then only that subset of antibodies have given negative or inconclusive results.

 

[Sean]

Negative (null) results are just as important as positive results. The only important questions about a study are 1) is it relevant, and 2) is it well conducted.

I would write 250.000 as 250 000.

Yes but with negative results there will never be 100% certainty that a hypothesis is refuted so suspect that some group will not give up on it. A bit like the Japanese group that wants to trial Rituximab again.

Positive results have a comparable problem if they are false, which they sometimes are. The story of the psycho-behavioural dominance of ME/CFS for decades based on their positive 'results' is a clear warning about that.

Thanks for this excellent round up of the year in ME/CFS science.

 

[ME/CFS Science Blog]

Sure, but can’t antibodies still be involved without autoimmunity? And if the studies have primarily been looking for autoantibodies, then only that subset of antibodies have given negative or inconclusive results.

What kind of antibody theory are you thinking of then for this distinction to matter, the FcγRI hypothesis by Jo?

In the later section we also focus on CD20, CD38 and immunoadsorption trials, so these would affect all antibodies.

 

[Utsikt]

What kind of antibody theory are you thinking of then for this distinction to matter, the FcγRI hypothesis by Jo?

Something like that, yes.

In the later section we also focus on CD20, CD38 and immunoadsorption trials, so these would affect all antibodies.

Yes, I just got confused by the inconsistent use of antibody vs autoantibody, because the disease mechanisms would be quite different.