In your opinion, what has changed, if anything, in ME/CFS research in the last 10 years? If it has, what do you think was the catalyst?

[Chandelier]

I think for ME/CFS was important the XMRV saga. The results were negative but I think it was from this moment that the things got very slowly better for ME/CFS future.

Thank you for mentioning this.
I had to look the backstory up and noticed we haven’t had a thread for that paper yet.

 

[justlxsa]

From a german perspective, in Germany there has been a lot of change in the last 10 years.

While Prof. Scheibenbogen‘s work is often doubted/ criticized on here, she remains (in my opinion) Germany‘s biggest factor for this change.
She started seeing ME/CFS patients in Berlin almost 20 years ago- and for many many years she probably was the only public figure speaking out and advocating for us.

For example, when I became ill in 2020, I knew that I had ME/CFS 3 months after symptom onset because of her many articles and interviews and youtube videos.

Alongside with patient organizations and COVID which led to many many more ME/CFS patients, the game changed.

Many people became involved in advocacy, there are now likely 20 ME/CFS patient organizations in Germany like Liegendemo, Deutsche Gesellschaft für ME/CFS, Fatigatio, etc. (in my opinion there are too many).

Step by step funding became available.
The NKSG.
Then Through the BMG (care and treatment center- projects) and now the National Decade against post infectious diseases.

And also the ME/CFS Research Foundation and more allocation of private funding.

It remains to be seen how groundbreaking or not the „Decade“ will be.

 

[Silip]

I have only been ill since 2022, so I am still relatively new to the history of ME/CFS — although, in my experience, every month spent severely ill can sometimes feel like several months in the moderate stage, simply because the level of suffering and restriction is so extreme.

I often wonder what ME/CFS research was really like before 2020. My own research only began in March 2025, when I finally understood what was happening to me.

At the time, I kept coming across the same names and the same hypotheses: the Davis family, the Itaconate Shunt, Klaus Wirth’s work around mitochondrial dysfunction, viral persistence with Putrino, PolyBio and others. I completely missed the whole BC007 episode — and, looking back, perhaps that was not such a bad thing.

I have the impression that 2025 was an important year. There was DecodeME, the work published by Fluge and Mella and several other studies that I found particularly interesting, including the study involving autopsies of the brains of severely affected patients.

But one question keeps bothering me, and perhaps it is a naive one : why do some of the best-known researchers sometimes seem to pursue their own particular avenue almost independently of what is happening elsewhere ?

I was struck, for example, by how little attention DecodeME sometimes seems to receive in the public discourse of otherwise highly influential researchers: Scheibenbogen, Wirth, Davis, PolyBio, West, Putrino, Iwasaki, Lipkin, Klimas... I remember reading an interview with Nancy Klimas and getting the impression that she remained very focused on her own therapeutic trials — Sipavibart, probiotics, and so on — without really integrating what DecodeME might change in the way the disease is understood.[........]

I think the answer for this is partly what you describe in the part of your post I am not quoting here and partly it's a little different for each researcher.

Scheibenbogen for example, with all due respect for her advocacy work, is absolutely trapped by her autoimmunity and b-cell ideas; I can't imagine her paying more than passing attention to anything else before she has either proven that some people profit of the treatments she suggested for the last 10 years or money for such trials dries out.

Wirth doesn't just have a theory but also has his own company and pharmaceutical products he's trying to secure funding for, I can't imagine him being interested in things not tied to his products.

Davis is, with all due respect, very old and doesn't have much funding compared to Scheibenbogen, Polybio or even Klimas, so I think he is rather limited in what he still is able to do and his own projects seem to absorb him completely.

And some other researchers never really looked into ME/CFS beyond a vague "phenotype" of long COVID, they often also don't seem to be far-sighted enough to understand the implications of DecodeME.
Their primary motivation also doesn't seem to be the production of solid science and evidence, but to get anything into people's hands as quickly as possible so they no longer feel so help- and powerless themselves—whether that's Rapamycin, HbOT, LDN or some trendy gadget and no matter of it really works or doesn't. And if that's your goal DecodeME isn't really of much interest for you.

So I think there are various reasons why some of the best known researchers don't seem to give the findings of DecodeME much attention.

 

[justlxsa]

Wirth doesn't just have a theory but also has his own company and pharmaceutical products he's trying to secure funding for, I can't imagine him being interested in things not tied to his products

I can’t comment on this any further- but I know for a fact that Wirth is interested in ME/CFS as a whole, not just in his company and products.

It’s just that this is his lead- and he thinks he could be right. I‘m pretty sure he still reads all the literature and studies and preprints.

 

[dave30th]

And I think I'm right in saying that @Tom Kindlon was instrumental in getting Dave involved

Well, his work had a big impact on me!! What happened here was that I needed to figure out a narrative structure to tell the story of the trial. It was so complicated and I needed to find an effective way to keep people reading, given the length. (I'm sure many couldn't get through the whole thing.) Tom's work had left a paper trail across many years in letters to journals, articles, etc that could be cited and quoted to help move the story along. So I chose him as a "protagonist" of sorts through which to build a narrative. And luckily, Tom was willing to trust me and go along with it, and spend lots and lots of his time and energy talking with me. I'm sure the effort took a lot out of him but I was enormously grateful for his input.

 

[Silip]

I can’t comment on this any further- but I know for a fact that Wirth is interested in ME/CFS as a whole, not just in his company and products.

It’s just that this is his lead- and he thinks he could be right. I‘m pretty sure he still reads all the literature and studies and preprints.

Yes, I probably didn't word this correctly. What I meant wasn't that he personally isn't interested in the literature or other ME research in general, but that I am pretty sure he doesn't plan to pursue other leads not tied to his company in the near future. Furthermore when I read his papers and thoughts I always do this while keeping in mind that he has a product to sell.

This isn't necessarily only a bad thing, as long as someone plans that his product undergoes a serious scientific process I'd say people trying to get involvement from pharma and attract investment in ME research from outside the traditional humanitarian circles is something I like to see.

 

[Sean]

So I think there are positive changes. But it’s led by a dedicated few. Plenty of others refuse to look at the evidence.

Nor at the serious persistent methodological issues plaguing the field, or at least one prominent, long dominant wing of it.

 

[DMissa]

I moved from one field to another as the data dictated.

this is relieving and makes me feel less like a fish out of water.