2026 WE&ME Research Project - a research fund in collaboration with Science for ME

[Kitty]

I would surely like to know whether they have the necessary knowledge to suggest that a given medical target should or should not be pursued.

I'm not convinced anyone knows that for sure.

This is about evaluating the quality of applications for research projects, not the likelihood of the applicants identifying the underlying problem in ME/CFS. If they were being scored on that, research would grind to a halt altogether because it's an impossible call to make.

Panels look at whether the applicants are qualified to apply, whether their proposal fits the grant parameters, whether their question is a reasonable one to pursue, and whether their methods are likely to lead to it being answered meaningfully. The process needs a group of people with knowledge, insight and experience in different areas—one of them is whether a project design is accessible enough for participants with ME/CFS.

 

[rvallee]

Yes, me too.

It's not as if there's a history of the committee making outlandish or poorly-advised choices that went against the interests of this community or the wider patient body. Quite the opposite, in fact.

I would be one of the first people to have issues with this in most cases, and I did in our discussions, but ironically another part of why it happened this way is because S4ME allows our members to be anonymous, and there are real concerns with being identified as a member on the forum, especially for people with the right expertise. Despite much-vaunted headlines about it, ME/CFS remains as controversial as it's ever been, and not everyone wants their post history, which is largely public, to expose them.

So it was a choice between respecting the process that WE&ME set out, and they have a good track record so far, or not, and aligning with how our community works, which allows and protects anonymity. Deliberations will be held privately by the selected members, but their decisions will be public. We will be able to judge how it all works out.

I also see a difference in how accountable a public process is done, and how a private foundation operates. WE&ME does not set policy, it funds and facilitates research with their own funds. I wouldn't have the same comfort with a public process where the intent is to set or change health care guidelines. There have been forum members involved in the NICE guideline process, and although they were identified, we all respected that the deliberation process involved confidentiality, and so did they.

It's not ideal, but it wouldn't have been decided this way without WE&ME having a strong record, and you can be sure that if this changes, so would our evaluation of being part of this.

 

[Hutan]

@mariovitali

Drawing on my limited experience of these processes again -
There are typically lots of proposals, and assessors only have so much time. So the proposals are initially allocated out to the people who are most likely to have some relevant knowledge. So, a mitochondria study might be allocated to a team of a researcher representative who is an expert on mitochondria and a consumer representative. They look at it in depth and make a presentation on it to the whole group. Then there is discussion. Then the whole group scores the proposal against set criteria.

So, use is made of expertise, and the view of the person with expertise may be persuasive. However, others get a limited chance to consider things and highlight problems.


I suspect for this fund that the patient representatives will actually all want to look at lots of studies and will be willing to put the time in to doing that. They have a private forum where they can discuss the proposals prior to evaluation meetings. As @Jonathan Edwards notes, the patient representatives will be able to carefully consult with others in order to gain some knowledge where necessary.


The structure for this fund is a two stage process. Short proposals are submitted first, so researchers don't have to waste a lot of time if their idea doesn't fit with what the fund is after. Maybe there are 30 short-listed proposals. Then there is a period when researchers write their detailed proposals. This structure has another advantage - it gives the panel time to develop knowledge relevant to the short-listed proposals.

 

[Comet]

I'm so grateful to everyone involved in this. Really proud of you all!

 

[OrganicChilli]

And how would you realistically have gone about arranging that in what is essentially a pilot project?

Fluge and Mella didn’t do a broad and open recruitment for their Dara pilot. Is that an issue as well?

The priority was to get good people. I have full confidence they achieved that. Isn’t that good enough this time around?

If this becomes a regular thing I’m sure they’ll work on a process to enable more people to register their interest.

What are you on about? This has nothing to do with Fluge and Mella.

It's good enough this time around, but it's a point worth flagging and I find it quite odd you defend the status quo so vehemently. WE&ME share responsibility as they decided to do this behind closed doors.

There's not much to arrange. Prime ask people for their motivation and what they can bring to the table in their PPI questionnaire. This includes severe people so they are happy with a few sentneves. For this project you can ask for a bit more. Just treat it like any other job application and cross-reference it with forum contributions.

 

[rvallee]

Is there a whiff of sour grapes here?

Bring it on. This is the sea change we have all been wanting for too long.

I don't mind it, it's very healthy considering how much of what has been done to us has happened in secret behind closed doors, and how often it comes up in discussions. The main difference here being the nature of this being a private foundation putting their own fund, not a governing body whose work will influence policy. If this were a public process funded by a government, it would be very different.

I am on the more radical end of radical transparency, but I also accept how some of those things are done. As far as I'm concerned, nothing has been compromised. We've had healthy discussions with WE&ME that involved making it clear we a not providing token representatives, and they have so far showed being serious and willing to deliver on that.

Maybe we will change our minds after it's done. I doubt it.

 

[mariovitali]

I'm not convinced anyone knows that for sure.

This is about evaluating the quality of applications for research projects, not the likelihood of the applicants identifying the underlying problem in ME/CFS.

Does "quality of applications" here include the area of investigation? If not, Thank you and this answers my question.

 

[MrMagoo]

? Why would we be pleased about that?

For @Trish ‘s sanity and workload!

 

[Kitty]

Does "quality of applications" here include the area of investigation?

It would have to be relevant, but it doesn't serve scientific progress to put a block on areas of investigation. It's so much more nuanced than that.

For instance, a crucial clue could be found in areas of study that appear to have been done to death already, because no one asked the question in quite the right way.

Also, it's possible—maybe even likely—that we already have part of the answer to what goes wrong in ME/CFS. It's just that a link hasn't been made, or it has only been approached from a direction that doesn't allow you to see it.

Arguably, the intelligence of the questions matters more than the area of investigation.

 

[Ash]

fwiw, I‘m so thrilled to hear that my favorite ME foundation is joining forces with S4ME!

The core idea that researchers will work in public on refining their studies with the help of this forum seems groundbreaking to me.

This to me is the best news of the year!
Thank you so much to all parties involved for making this happen!

Yeah I'm also excited about this development!

 

[MrMagoo]

I think it sounds great, and really good for S4ME.

Sounds like there are a lot of versions of PPI, some definitions would help. I know there is a lot of variation in roles (and influence).

 

[Ravn]

This is superb news! Just what I needed to hear as I’m descending into yet another episode of PEM

I’ve only skimmed this thread but I’m a bit surprised at the level of negativity. Sure, it’s not perfect but let’s not make perfect the enemy of good. I see this as a big step towards lifting the standard of ME/CFS research

I’d have liked to see a good statistician or methodological expert on the panel of experts rather than Putrino, but hey he might learn something from interacting with the patient reps (hope lives eternal)

Concern about the patient rep selection seems to centre on transparency and technical skills

On the former, yes, in an ideal world everything would be transparent but we’d have to wait an awfully long time for that perfect world to eventuate. In the world we actually live in anonymity for this type of role is how things are done and, sadly, likely necessary, too (risk of lobbying, abuse, etc) and the alternative would be worse. WE&ME could have chosen anyone they like, also anonymously, and we’d have even less idea about them. And looking at the mixed bag of their expert panel choices that would have been hit and miss. I trust the S4ME committee’s judgement on putting good people forward. Admittedly I'd dearly love to know who they are but I accept other concerns weigh more heavily

As for technical skills, typically these aren’t what patient reps are expected to contribute. More things like are a proposal’s plans for recruitment or inclusion of severe patients realistic, does a questionnaire make sense, that sort of thing. I’m confident the selected reps are more than capable of this. Additionally I’d be very surprised if they didn’t also bring significant knowledge of methodological pitfalls as the committee would have chosen people with a solid track record on S4ME

So all in all a big step in the right direction. Now we just need to get some really good proposals for them to assess

 

[Jaybee00]

I have no interest in PPI involvement or medicine (I'm just here for a breakthrough announcement) but I do wonder why the committee didn't ask for applications and then chose from those applications instead of selecting people behind closed doors?

Can someone from the Committee please answer this question directly with a short response?

Thank you.

Transparency is always better as it fosters trust.

Also I do worry, that because a lot of members on here love and have expertise in genetic studies that there will be bias in ranking genetic studies higher.

Continued genetic studies is great if you want druggable targets by the year 2060. How did all the myriad of genetic studies help to find a cure for Alzheimer’s, our closest related disease?

 

[ChronicallyOverIt]

I don't think anyone is really pushing for more genetic studies other than SequenceME which has already been partially funded, and this new group/collaboration is not targeting that. SequnceME is about the top of the top you can go for genetic studies, there's to as my knowlege not really a point in doing a smaller full read sequencing when SequenceME will be so much more powerful.

Along with I don't think anyone here is expecting gene editing therapies from SequenceME which you might be referencing as a "2060 goal". These genetic studies are for pathway identification, not CRISPR/Gene editing therapies. We've been looking for a long long time and ME/CFS seems to be hiding in a system that is very hard to measure, finding that pathway will be much easier if you can narrow that down with SequenceME data. We are already somewhat doing this with the DecodeME data (thanks to the experts here), but right now DecodeME is like the hay stacks and SequenceME will be finding the needles.


I'm not an expert in Alzheimer's but it is to my understanding the exact opposite, that "fake data" around amyloid plaques were chased for the last 30 years due to bad studies and out right lies by some top researchers, which is why most therapies, especially MaAbs have failed. Scientists were pressured to align their findings with the dominant amyloid hypothesis to secure grants and publish papers, kinda sounds familiar to mitochondrial framework of ME/CFS? Sometimes zooming 10,000ft out, while it takes time, is the right thing to do.

Opinion | The Devastating Legacy of Lies in Alzheimer’s Science (Published 2025)

Fraud in research needs to end.

www.nytimes.com

 

[mariovitali]

Looking back at what has been discussed, I agree with @Jaybee00 .It would be better if the committee have asked for applications instead of selecting people behind closed doors.

I also believe that the involvement of patients in such a way is groundbreaking. I really like the fact that @Hutan and @forestglip (member list non inclusive) look through studies and identify weak points. I do not know if they are in the PPI committee but I would sure vote for them. However, I wouldn't want them to decide whether a given biological target (e.g. efferocytosis) should be investigated or not. This should be the job of an immunologist.

I am also concerned about what @Jaybee00 mentioned about having a bias in ranking genetic studies higher. I would like to finally have an answer as to whether ME is mainly a brain disease -given the latest MAGMA analyses- and my guess is that WE&ME organisation will be looking at this soon given the latest developments with the S4ME involvement.

As with other topics discussed, I am happy that this thread is accessible by everyone outside of the forum. Best wishes for a fruitful effort on this journey. I hope it is an unbiased one.

 

[Midnattsol]

I don't think it's possible for a panel of this size to be able to have expertise in all areas. Even large funding bodies such as the Research Council of Norway struggle to have the "right" expertise to assess studies.

The Norwegian research news site Khrono has had numerous articles and opinion pieces published on this topic recently because of complaints about assessments from the research council, some of the things suggested that would make the process better is that the persons involved in the assessment at least is familiar with the field in question. I think we can safely assume all panel members from S4ME is familiar with the field of ME research, if not necessarily the acute details that would make a specific research question in immunology more viable than another.

I'll collect some links from the debate later and post them here (or maybe a new thread on research assessments in general?).

 

[ME/CFS Science Blog]

Great that WE&ME is doing this! It says the call is funded entirely by them, and with 7 x €150,000, that would be around one million euros that they put in. It feels like recognition of S4ME, that they are involving multiple members in the jury that decides how this money will be spent.

Is there anyone or any groups we should be contacting to see if they are interested in the funding call? Should we discuss this here or in a new thread?

I think this is a good idea. The jury is one thing, but ultimately the quality of the research will largely be determined by the applications they receive. I hope calls like these can lure new research groups and ideas into the field.

However, I wouldn't want them to decide whether a given biological target (e.g. efferocytosis) should be investigated or not.

I think the problem is that applications from different fields need to be weighted against each other, and nobody is an expert in all these fields. So how does one decide between a high-quality metabolomic, immunological, and neurological study? Think the only solution is a panel with different expertises, including people with the disease.

 

[Jonathan Edwards]

For me the bottom line is that patient members here are way, way, way ahead of the medical and scientific communities in terms of overall perspective and, moreover, are far less likely to have vested interests in particular avenues. It is a no brainer. S4ME is a very unusual organisation dealing with an unusual disease but that is the way things are.

 

[EndME]

I am also concerned about what @Jaybee00 mentioned about having a bias in ranking genetic studies higher. I would like to finally have an answer as to whether ME is mainly a brain disease -given the latest MAGMA analyses- and my guess is that WE&ME organisation will be looking at this soon given the latest developments with the S4ME involvement.

As with other topics discussed, I am happy that this thread is accessible by everyone outside of the forum. Best wishes for a fruitful effort on this journey. I hope it is an unbiased one.

I think this is a valid concern that you are certainly not alone with. I think bias amongst panel members should always be a concern, at every organisation, which is why a broad panel specialised on ME/CFS seems sensible. Genetic studies are probably the currently the most discussed topic on S4ME and many prominent voices on S4ME think it is at least a large part of the way forward and some members have dived quite deep into genetic studies, so it doesn’t seem unlikely to me that a bias towards a preference of genetic studies could arise out of that. On the other hand there might also be "deeper knowledge" on the subject matter, should such patients have been selected. Other people on S4ME might have a much stronger preference towards for example large therapeutic trials, which seem to be explicitly excluded from the call (https://www.weandmecfs.org/wp-content/uploads/2026/06/2026_05_WE-ME_Projects-Call_A4-2.pdf).

With Chris Ponting on the panel there is at least one researcher with serious expertise on the specific subject matter of genetics. One could argue that being a geneticist himself he might be biased towards preferring genetic studies himself but I would hope that should he make the suggestion that a study is horribly designed and cannot yield anything fruitful and can reason so logically, that unless there are other arguments that counter these, a suitable decision would be make that is not blinded by the personal beliefs of the panel members, just as I would hope it would apply to other areas, be it the magnet hats that have been mentioned or whatever else.

Let's focus on what we (S4ME members) can do. This is a step in the right direction with regard to PPI and the funding process. I am sure the patient reps will do a good job. I am always pro-transparency, but as this PPI initiative involves a closed peer-review process, anonymity is probably a necessity.

Is there anyone or any groups we should be contacting to see if they are interested in the funding call? Should we discuss this here or in a new thread?

Yes, who do we know? We've got @jnmaciuch, @James Cox, @DMissa, @MelbME, @chillier, @trudeschei, online here (who else?), and I think we've discussed other research groups in the past that we thought would be good to have in the field (I may be misremembering but did @Snow Leopard mention someone?), can anybody think of someone?

 

[MSEsperanza]

Fantastic news.

Thank you to everyone involved.