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

Hutan said:
Thanks for the question. Consideration of the proposals has to be done in a closed process. One reason for that is so that researchers can protect their ideas up until they are funded.

Before the awarding of funds
But yes, there are the three members of S4ME with ME/CFS, along with the two backup members. All five will have access to the proposals and can discuss them together, and with the four researcher members.

More than that though, the members of the panel will be reading comments here, looking to see what people have thought about a researcher's track record, reading what members think are research priorities and what people think about specific hypotheses.

Other ways that patient members can get involved is to talk to their favourite researchers and help them to come up with a great proposal, including helping them work out how to meet the patient involvement criterion. Obviously, we hope that forum members who are researchers will think about submitting a proposal. If researchers want to work with a team on preparing a proposal, the forum can provide a private subforum for them and suggest some members for the team to help them think through issues.

After the awarding of funds
Once the announcements of funding have been made, the forum is available as a resource for the funded researchers. They don't have to use it, but we hope they will. We very much hope that they will keep readers of the forum informed as their project progresses. They might want to come here to talk over issues they are facing, with the community on a public thread, or a members only thread, or in a private forum.
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Thanks for the comprehensive answer! That all makes sense. I wish the committee with the work ahead.
 
Yann04 said:
In the sense that working towards figuring out this disease everyone would benefit from more data sharing and knowledge of who is currently studying what
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Absolutely agree. It’s a tricky balance I guess. You’ll hopefully be pleased to see this, I was, having the data as open as possible so people can check, interrogate and reuse is more important to me than sharing the idea in advance. At least in our current non utopian world :)
What are the expectations regarding open research data?
Data must be FAIR (Findable, Accessible, Interoperable, Reusable), machine-readable, and deposited in a trusted, discipline-appropriate repository such as MAP ME/CFS or a comparable alternative. Data should be released no later than the publication of corresponding results, and no later than twelve months after project end where no publication results. Justified exceptions, for example for patient privacy or sensitive cohorts, must be well argued in the Open Science Statement.
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I object to Putrino being on this and also probably Tal as well.

Putrino is not a neuroscientist and Tal is doing a pointless let’s measure everything study.

And also Hanson has some biases toward enteroviruses.

How do we know that Putrino won’t push for more magnet hat studies since his colleague owns the company?



“The jury consists of 7 members in total: 4 researchers, Maureen Hanson (Metabolism), Chris Ponting (Genetics), Michal Tal (Immunology), and David Putrino (Neuroscience),”

@Jonathan Edwards how does Tal’s background look to you re “immunologist”?

talresearchgroup.mit.edu

Publications — Tal Research Group

talresearchgroup.mit.edu talresearchgroup.mit.edu

talresearchgroup.mit.edu

Our Team — Tal Research Group

talresearchgroup.mit.edu talresearchgroup.mit.edu
 
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I absolutely don’t want to reopen the debate but I have a tiny question on anonymity, if a forum member who was selected by WE&ME wished to, could they disclose it in the forum under their forum pseudonym? Or are they not allowed to reveal it?

Sorry if this was mentioned somewhere up thread and I missed it. I think I read the whole thread but in brain fog mode.
 
I’m just going to put this here in case others are curious about the timeline this is all happening on. I’m so excited, but I have to manage my expectations haha.
(From WE&ME’s Projects page)

Timeline​

  • Call launch: 15th of June 2026
  • Stage 1 short proposal deadline: 25th of August 2026, 2pm CET
  • Stage 2 full proposal deadline (by invitation): 10th of November 2026, 2pm CET
  • Expected funding decision: mid-December 2026
  • Project start: from January 2027
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I think this is brilliant news. It is exactly what the next step for S4ME should be. It provides direct input to the peer review process from here and it also provides a funding mechanism that people can donate to that we can have confidence in. I have not personally been involved in any of this but have reason to think it has been very well set up.

Utsikt said:
I have general concerns about anonymous panels for grants.
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Context is crucial here. Anonymity on panels involving peer review by other researchers is very problematic and should be dismantled. But this is different. A patient representative has nothing to gain in terms of getting grants themselves - no conflict of interest. They are entitled to anonymity and in the context of modern social media I see that as crucial for some people.

I don't think this is any way comparable to patient representation on working parties, either. Patient members on review boards are not claiming to represent the needs of a patient community and advising on health policy. They are giving an individual opinion on the quality of a scientific project, informed by their position as someone with personal experience.
 
Jonathan Edwards said:
Context is crucial here. Anonymity on panels involving peer review by other researchers is very problematic and should be dismantled. But this is different. A patient representative has nothing to gain in terms of getting grants themselves - no conflict of interest. They are entitled to anonymity and in the context of modern social media I see that as crucial for some people.
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I agree about patients, I should have distinguished between those and researchers/academics to make that clear.
 
These questions may have been missed, I think they are important ones and for this reason I am reposting it here :

a) Is it correct to say that S4ME PPI committee members do not have the necessary knowledge to either vote in favour or against a given study goal (e.g. investigate how cold exposure may be beneficial for ME patients)

b) What kind of decisions will they be taking regarding a proposal ? e.g. Ensure that it is properly designed? What else?
 
mariovitali said:
These questions may have been missed, I think they are important ones and for this reason I am reposting it here :

a) Is it correct to say that S4ME PPI committee members do not have the necessary knowledge to either vote in favour or against a given study goal (e.g. investigate how cold exposure may be beneficial for ME patients)
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How would you define «necessary knowledge»?
mariovitali said:
b) What kind of decisions will they be taking regarding a proposal ? e.g. Ensure that it is properly designed? What else?
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It says they have voting rights. I assume that’s for all decisions the panel will make.
 
Utsikt said:
How would you define «necessary knowledge»?
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The necessary medical knowledge to decide as to whether a proposed medical target may indeed hold fruitful findings.

Utsikt said:
It says they have voting rights. I assume that’s for all decisions the panel will make.
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"All decisions" means that these members have the medical knowledge to do so. Do they have it?
 
mariovitali said:
The necessary medical knowledge to decide as to whether a proposed medical target may indeed hold fruitful findings.



"All decisions" means that these members have the medical knowledge to do so. Do they have it?
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Let's say the patients were an ex neurologist, immunologist and rheumatologist.

Does an ex rheumatologist have necessary medical knowledge (by your definition) to assess a project proposal in neurology? Can the hypothetical trio assess a project proposal made by an endocrinologist?

Can you describe a hypothetical member who would fit the bill?
 
So the committee for S4ME has chosen 3 + 2 patient representatives that have a minority standing for a 1 million fund allocation, that will be conducted secretly, in exchange for advertising and endorsing WE&ME.
Jaybee00 said:
First line of Putrino bio:

Dr. David Putrino is an Official Medical Provider for Red Bull’s Sponsored Athletes in North America.

Not lying.
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His name is on a document for Long Covid where a third of its contents is dedicated to various forms of exercise, including for those with very severe ME/CFS. I don't think he should be anywhere near patients let alone on a board choosing future research.
 
mariovitali said:
The necessary medical knowledge to decide as to whether a proposed medical target may indeed hold fruitful findings.
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mariovitali said:
"All decisions" means that these members have the medical knowledge to do so. Do they have it?
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Who says all members on a panel that decides on research funding need the same medical qualifications anyways? Wouldn’t knowledge about study design, statistics, the field in general, common mistakes, the needs of participants, and more be relevant in that contex? How would you realistically get access to that if everyone also had to have medical «knowledge», whatever that means?

Do you think Ponting has the medical knowledge when his focus is on genetics?

What about Putrino?
Jaybee00 said:
First line of Putrino bio:

Dr. David Putrino is an Official Medical Provider for Red Bull’s Sponsored Athletes in North America.

Not lying.
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It also says he has a PhD in neuroscience.
ETA:
I was awarded a Ph.D. from the University of Western Australia in 2008 for my work studying the neural control of reaching under the supervision of Soumya Ghosh.
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David Putrino, Ph.D.

I was awarded a Ph.D. from the University of Western Australia in 2008 for my work studying the neural control of reaching under the supervision of Soumya Ghosh. Clinically, I have worked with patients in hospitals and private practices in the US, UK, and Australia. As a neuroscientist, I have...
burke.weill.cornell.edu burke.weill.cornell.edu
 
mariovitali said:
a) Is it correct to say that S4ME PPI committee members do not have the necessary knowledge to either vote in favour or against a given study goal (e.g. investigate how cold exposure may be beneficial for ME patients)
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No it is not correct. I don't think we are talking about committee members anyway. S4ME members have shown themselves very able to find out what they need to know even if they don't have it at their fingertips. I don't see why this question is raised.
 
Utsikt said:
Who says all members on a panel that decides on research funding need the same medical qualifications anyways? Wouldn’t knowledge about study design, statistics, the field in general, common mistakes, the needs of participants, and more be relevant in that contex? How would you realistically get access to that if everyone also had to have medical «knowledge», whatever that means?
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Yes, the "study design" bit was part of my question earlier. I specifically asked what kind of decisions these PPI members will be able to take. If they do not have a medical background can they *really* suggest that given the biology and previous findings, looking at mitochondria is relevant?

Should a statistics guy have an opinion on that or should he stick only to the necessary statistical tests, sample size etc ? This is what I am asking. I hope it is clear now.
 
mariovitali said:
The necessary medical knowledge to decide as to whether a proposed medical target may indeed hold fruitful findings.

"All decisions" means that these members have the medical knowledge to do so. Do they have it?
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These seem like very natural questions to me. Is it generally fair for a rheumatologist to compete for a grant against a neurologist where the jury consists of people that are neither? As an example: Jeroen den Dunnen was recently awarded an NWO grant to study ME/CFS. It is my understanding that for NWO grants every single discipline applies, that means you have biologists, medical researchers, mathematicians, chemists, quantum physicists, material scientists etc applying for grants. The review board then makes decisions based on all available evidence and quite often none of those will be working in your speciality and you’ll be lucky if they work in an aligned speciality. The goal is still to be able to make an informed decision about a subject matter even if not everybody is an expert on a given matter. In general nobody knows who is on such a board and the whole process is anonymous. I find it highly unlikely that anybody on that review board for the NWO grant had any expertise in ME/CFS and I guess we'll never find out.

Here we have the situation that a medical organisation specialised in ME/CFS has written out a proposal that will be judged by both patients and researchers with expertise in the field of ME/CFS and which has mandatory requirements such as PEM, open science, non-tokenistic PPI. That already seems entirely novel to me. I wouldn’t expect everybody on such a board to be able to fully understand every detail of every study, just how 99% of people cannot understand everything about DecodeME, but I would hope that they are informed enough to make good decisions that lead to funding worthwhile studies.

It should not be forgotten that on this forum we typically discuss problems in studies that everybody that is informed can see after just reading the abstract and these are already the studies that have gotten funding and passed peer review.
 
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