International Declaration in Support of Research and Drug Development for ME/CFS and Long COVID Berlin, 1 September 2025

[SWAlexander]

The International Declaration signed by leading experts in the field of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and Long COVID calls for a global collaborative effort to substantially expand biomedical research and drastically advance the development of curative treatments. The declaration was announced on 12 May at the International ME/CFS Conference 2025 in Berlin by Prof Carmen Scheibenbogen (Charité – Universitätsmedizin Berlin). The declaration has since garnered growing international support and has been signed by 65 international scientists and medical experts (as of 1 September 2025).

The Declaration recognises the growing public health crisis posed by ME/CFS and Long COVID and underlines the urgent need to advance biomedical research and drug development efforts globally. Highlighting the moral, medical, societal and scientific imperative to increase research efforts to uncover the disease mechanisms underlying ME/CFS and Long COVID, it calls on governments and international bodies to prioritise research funding on both diseases. The signatories explicitly outline the need for more clinical trials and translational studies to investigate potential treatment options, including repurposed drugs. They also call on pharmaceutical and biotechnology companies to be more actively engaged and incentivised to invest in research and drug development.

The Declaration also mentions the need for the research community to engage in active partnerships with patient communities, incorporating lived experience into study design, outcome measures, and the delivery of medical care. Furthermore, it calls upon medical education systems to reflect the current knowledge of ME/CFS and Long COVID in their curricula, empowering health care professionals to provide up-to-date medical care to patients.
More at: https://declaration.mecfs-research.org/en/declaration

 

[Wishful]

It's a bit difficult to develop drugs when they have no idea of ME's mechanism. There might be hundreds of "works for a few individuals but does nothing for the rest" treatments, but I don't see that as something to invest large amounts of limited resources into. Until there's a definite finding about how ME works, or a "works for most PWME who have tried it" treatment, I think the main beneficiaries will be those researchers and companies that are best able at milking the government.

Declarations are nice, but is there anything about this one that will actually accomplish anything for PWME?

 

[Rufous McKinney]

works for most PWME who have tried it" treatment

but we can't try most of these possible treatments which at least reduce some symptoms: ..........Our insurers deny coverage for off label, etc etc etc. It's all off label. Same as how there "is no treatment for COVID" because: COVID just appeared. We therefore cannot know anything about treatments.

I"ve not tried most Pharma pills that have scientific reports indicating they helped at least a sub set of ME people.

 

[BrightCandle]

Every one that seems to come to this disease and the scandal of its treatment always thinks:
- That the authorities just aren't aware and if they knew they would do something
- That the facts and knowledge will change how patients are treated by medicine and government.

They know, have known for decades and just don't care. Treating people this way is intentional. You can't fix prejudice with facts, even exposing it doesn't work either as we have seen with racism by state entities. Fact is the only real route forward is for scientists to some how crack this difficult to understand diseases core pathology on a shoe string budget, that is the only option. Which is why I know it wont be solved in my remaining lifetime, I doubt anyone suffering this disease today will see this solved. Starving it of funding has been the way for 80 years and I see no sign of that changing.

 

[Wishful]

but we can't try most of these possible treatments which at least reduce some symptoms

The point is that some number of people have tried these treatments, and only a few reported benefits. If 1/10 people had benefits from cumin, that would be worth further research. If it's 1/100, that might be worthwhile too, depending on the magnitude of the benefits. If it's 1/10000, is that worth the investment? Limited resources are reality, so it's a question of which is the best investment.

 

[Wishful]

Which is why I know it wont be solved in my remaining lifetime,

That's why I'm more hopeful of random discoveries than research guided by committees of people who don't have ME. Imagine if my accidental discovery of cumin as a PEM-blocker (and cure) actually worked for a significant percentage of PWME. There's a possibility that someone in some undeveloped tropical location would come across a treatment for ME--some leaf or bark or bug bite. Unfortunately, while that might occur, it's unlikely that the person would be aware of ME, and that other people would like to know about this treatment.

There's also the possibility that new developments in technology will provide an unexpected breakthrough. Imagine a new type of microscope that reveals a previously undiscovered cellular mechanism, which an ME expert will see as an obvious explanation for ME. AI could find connections that are ignored by humans, since the humans have "known for decades" something that is actually false. Maybe a new plastic or additive will get released to market and amazingly turn out to treat ME. Maybe they'll roll out 7G phone service, and PWME will report remissions. While those possibilites are remote, I think they have more likelihood of providing benefit than a declaration. How effective have other declarations been in history?

 

[cfs since 1998]

It's a bit difficult to develop drugs when they have no idea of ME's mechanism. There might be hundreds of "works for a few individuals but does nothing for the rest" treatments, but I don't see that as something to invest large amounts of limited resources into. Until there's a definite finding about how ME works, or a "works for most PWME who have tried it" treatment, I think the main beneficiaries will be those researchers and companies that are best able at milking the government.

Declarations are nice, but is there anything about this one that will actually accomplish anything for PWME?

"No idea" is completely false and in addition, many drugs get approved without knowing how they work.

 

[Mary]

It's a bit difficult to develop drugs when they have no idea of ME's mechanism.

That's the whole point of research which the declaration is calling for - to find out ME's mechanism and treatments, etc. Whether or not the declaration has the intended effect remains to be seen, but it certainly can't hurt and might help.

Furthermore, it calls upon medical education systems to reflect the current knowledge of ME/CFS and Long COVID in their curricula,

This alone would make the declaration worthwhile if it spurred medical schools to include ME/CFS and Long Covid in their curricula.

 

[Mary]

Declarations are nice, but is there anything about this one that will actually accomplish anything for PWME?

We don't know but there's one way to find out.

 

[SWAlexander]

Wishful, may I suggest that you consider sending your comments directly to the ME/CFS Research Foundation, as they may value your input.
Here is their email address: contact@mecfs-research.org

 

[Wishful]

"No idea" is completely false

I don't think so. There are theories about ME's mechanism, but AFAIK, none validated, so none known. Some theories might be more likely than others, but it's still just guessing. There have been some number of treatments based on theories, which failed when tested.

I'm not against the goals of the declaration. I just don't see it as likely to have much effect.

 

[Oliver3]

I don't think so. There are theories about ME's mechanism, but AFAIK, none validated, so none known. Some theories might be more likely than others, but it's still just guessing. There have been some number of treatments based on theories, which failed when tested.

I'm not against the goals of the declaration. I just don't see it as likely to have much effect.

It's not ' guessing' it's the scientific method.
And that's how all research abd medicine is.
Not many if any illness are truly understood but there are treatments that improve patient well being, even when mechanisms not fully understood.
So your desire for absolute certainty is virtually never ever seen in science. All we ever have is an expanding knowledge of ideas and theories.
That goes for cancer treatments, diabetes, cardiovascular issues.
There is plenty of research pointing in specific regions.
Your ignorance of them doesn't mean hard work hasn't been put in

 

[Wishful]

Okay, none validated to the point where it's more than just another dead end. For example, the theory that ME is due to a chronic viral infection, yet the studies haven't found such infections. They can extend the theory indefinitely by claiming its hidden against the previous methods, but that doesn't mean that it's a known mechanism. Some present theories seem a bit more plausible, and worthy of further investigation, but not to the point worth investing billions in trying to develop a drug for. If a theorized mechanism has an existing drug that would be adequate for testing the theory it's certainly worth trying with one or two patients to see whether it's worth a larger trial. I just don't see any of the present theories as being strongly supported enough by evidence to be worth major investments in drug development. Not that my opinion matters, since it is the drug companies that will make that judgement, regardless of how many people sign a declaration.

 

[Oliver3]

Okay, none validated to the point where it's more than just another dead end. For example, the theory that ME is due to a chronic viral infection, yet the studies haven't found such infections. They can extend the theory indefinitely by claiming its hidden against the previous methods, but that doesn't mean that it's a known mechanism. Some present theories seem a bit more plausible, and worthy of further investigation, but not to the point worth investing billions in trying to develop a drug for. If a theorized mechanism has an existing drug that would be adequate for testing the theory it's certainly worth trying with one or two patients to see whether it's worth a larger trial. I just don't see any of the present theories as being strongly supported enough by evidence to be worth major investments in drug development. Not that my opinion matters, since it is the drug companies that will make that judgement, regardless of how many people sign a declaration.

Dude, the scientific method has been applied to m.e. . Your decontextualising and denigrating ideas. Science is always a process of standing on the shoulders of giants.
Have we cured cancer in every patient.
Have we cured heart disease? No . Therefore we don't full understand the disease pathology.
We know there's an inflammatory issue in m.e., we know there are tissue issues, we know about the propensity towards th2 autoimmunity, we know there's problems I'm the endothelium, we know mitochindria are affected etc etc.
You might find it difficult, but this is how humans pull apart and treat illnesses.
Your exaggeration and denigrating of work dine is ridiculous.
Every illness exploration has gone through ' false starts'. But they're not false, they're knowledge postulated then tried , tested and proved or disproved.

It seems like you have a ridiculous need for certainty. That never happens in life. Nothing is certain.
Ideas are overturned all the time. New discoveries about the immune system occur almost weekly.
I don't know why you post on here. It's always the same thing. You don't believe anything. Everyone is wrong. Except you.

Maybe create a start up with your dazzling ideas

 

[SWAlexander]

Your decontextualising and denigrating ideas

I can't help but wonder if HE is the same person who emailed me and responded to my message without understanding the term "assertion", while completely ignoring the readily available empirical evidence.

 

[Wishful]

I can't help but wonder if HE is the same person who emailed me

Nope.

 

[Wishful]

You don't believe anything.

We all have different thresholds for accepting claims. One person will read about a study on just a few subjects and consider the results to be absolute proof. Others will read about a large study but not be impressed by results that while possibly statistically significant, don't seem large enough to explain the symptoms. I haven't seen any studies that convince me that those "we know"s you listed are actually valid for the majority of PWME. For every study showing one of those existing, there seems to be another showing that they didn't exist. I doubt that the actual decision makers about investing in drug development judge those positive studies to be strong enough. Which of the recent studies is going to convince Pfizer to invest in developing a drug for that target?

 

[joshualevy]

I think @Wishful 's comment about each person having different thresholds for accepting claims is very on-target.

But I also think that the declaration we are discussing is a "nothing burger". A bunch of ME/CFS researchers and people interested in ME/CFS research published a statement saying there should be more ME/CFS research. What could be more trite?

There is one piece of meat in the declaration: they want more cure/treatment focused research (and presumably less mechanistic research, although they are very careful not to say that!) There are two ways to interpret this statement.

One is, we want more money for cure/treatment research and the same amount for mechanism research. That is just we want more money and is trite. Everyone knows you want more money.

The second is, we want to shift the focus of research (and the money) from mechanism to cure/treatment. That is policy, and is not trite, but I agree with @Wishful again that this is premature. Not because there are no mechanistic studies done to date, but because there are too many different mechanistic ideas out there, all of which are lightly and poorly supported by the evidence. In my opinion, we are too early for a policy statement saying it is time to shift research targets.

 

[BrightCandle]

They haven't really got very far with pathology so far, the disease is a jumble of oddities many of which don't seem to replicate and no one has a clue where it all points to as the cause. So I think what this is mostly about is getting sufficient funding to start trying some drugs they think will work as tracers to see if it can tease out more about the disease. I don't think we know we understand the core of this disease until we can effectively treat something, those theories have to be tested and we have no end of theories and few have been sufficiently tested.

 

[Oliver3]

Absolute rubbish from wishful. He's admitted previously he doesn't even read the literature out there. So he has zero idea.
I don't agree that we are clueless. I don't understand the point of negating the work done.
As I've pointed out, we haven't beaten ANY disease hardly.
Of course I'm frustrated as the rest at the slow pace but there's loads of work in m.e abd long covid converging on the same areas of pathology. To say that's not existing is disingenuous