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

Science For ME

Science For ME

Forum Announcements
The forum committee is very pleased to announce a collaboration with the well-respected ME/CFS foundation WE&ME. We've been excited about this for a while; it's great to be able to share this news with you.


An international research fund and an early stage researcher award
WE&ME has launched a new research call worth over €1 million in total funding, supporting around seven biomedical ME/CFS projects. It is expected that some of the teams awarded funds in this first process will receive further funds in a second process in two years.
See the WE&ME website for more information - here. Short proposals need to be submitted by 25 August 2026.

WE&ME has also announced the Emerging Leader Award, providing two awards of EUR 5,000 each to early stage researchers actively working on ME/CFS and related illnesses - see here. The application deadline is October 2026.


Patient involvement
Members of the Science for ME community were involved in shaping the call and will also play a major role in the review and jury process. The Science for ME committee nominated the patient panel members, three out of the seven voting panel members. We have a further two non-voting forum representatives taking part in the process and available to step in should any of the voting patient members not be able to carry out their duties. The panel membership is confidential. However, the committee is satisfied that the panel is well qualified and will make very good recommendations about which projects should be funded.


Ongoing collaboration
The forum committee hopes that this is the beginning of a fruitful collaboration with WE&ME, supporting new ideas and new researchers in ME/CFS research.

The forum committee has entered into a memorandum of understanding to support WE&ME in these projects, including by promoting the research fund. This agreement does not affect members' ability to express their views on the forum about any organisation, research team or research. The voting patient panel members and backups have the option to receive payment for their work.


How you can help
We hope that forum members who are in a position to donate to research will consider supporting this initiative - donate here.

Please share the news of the call for research proposals with good researchers, both those already working on ME/CFS and others who can bring new expertise and ideas to the field. High quality proposals will help ensure the success of the research fund. Patient participation is one of the evaluation criteria of proposals - successful applicants will go beyond tokenistic patient participation. We hope many forum members will be involved in the submitted research proposals in some way.


Thanks
Many thanks to the WE&ME Foundation for their ongoing commitment to supporting good ME/CFS research and to ensuring that people with ME/CFS are part of the process. Thanks also to the team at the Vienna Science and Technology Funds (WWTF) who have been doing much of the work to pull these funding opportunities together, notably Ben Missbach. Particular thanks to the forum member and person with ME/CFS who is part of the WE&ME Foundation who helped us get the collaboration started and to the forum members and researchers who agreed to be part of the fund's evaluation panel.
 
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Science For ME said:
Members of the Science for ME community were involved in shaping the call and will also play a major role in the review and jury process. The Science for ME committee nominated the patient panel members, three out of the seven voting panel members.
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When you say that “members of S4ME … will also play a major role in the review and jury process,” do you mean the three voting panel members, or will there be open discussion of the proposals on the forum?

Science For ME said:
We hope many forum members will be involved in the submitted research proposals in some way.
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Can you clarify what this means, especially if regular members do not play a role in reviewing and voting on proposals?

All in all, this is really exciting! It makes me so happy to have found this forum that allows close collaboration with researchers. It gives me hope and purpose.
 
SugarSquared said:
When you say that “members of S4ME … will also play a major role in the review and jury process,” do you mean the three voting panel members, or will there be open discussion of the proposals on the forum?
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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.
 
A reminder about a facility that we created earlier in the year, but that could do with some attention:

Science For ME said:
A new facility - the Willing and Available thread

The forum committee sometimes is requested to suggest members, often at short notice, for tasks such as talking to the media, helping a researcher plan their research or helping a research funder evaluate research proposals. The forum and other organisations are often looking for people to help them in their work. Some researchers may be keen to collaborate with other researchers in a particular field.

We have therefore set up a trial thread where people can tell us about their skills and interests in research and advocacy roles and collaborations.

You can check it out here:
2026: Willing and Available - Registry of members interested in advocacy and research roles
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We know that members have excellent skills, talents and knowledge, some from their pre-illness life and some hard won, after illness. If you think you could help with advocacy or research, in some way in either a voluntary or paid capacity, you are welcome to tell us about yourself. Obviously, think carefully about what you do and don't want to share with the world.

The forum committee is not making promises that anything will come of posting on the thread, but we thought it was worth trialling the idea. We hope it is a way to help people connect in useful ways.
 
This sounds like a good plan, but I was quite surprised when I saw mention of S4ME in the funding announcement yesterday because I hadn't heard anything about the forum's involvement.

Are the S4ME members who have been involved in the call and who will be on the panel remaining anonymous?
 
InitialConditions said:
This sounds like a good plan, but I was quite surprised when I saw mention of S4ME in the funding announcement yesterday because I hadn't heard anything about the forum's involvement.

Are the S4ME members who have been involved in the call and who will be on the panel remaining anonymous?
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My understanding is that it is normal practice for the identities of members of panels deciding on which projects get grants are not normally published. I assume this is to prevent lobbying of panel members. Also they will presumably use their real names in panel deliberations, and forum members selected may not wish their real names to be identified with their forum names.

So the committee can't reveal who has been selected.

As a committee member I can tell you I'm very happy that the people chosen will do a great job. You'll be pleased to hear I'm not one of them.
 
The scientific advisory board are named on the website but normally such a board would delegate refereeing most of the time to anonymous individuals. The situation for patients is different and I assume they will remain anonymous. I can see real problems if prominent members of an open discussion forum were named.
 
wallfish said:
Would this criterium risk excluding otherwise valuable research, or discouraging researchers from participating?
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I’d hope not. To me it seems like a nice mix of requiring some basics any project would need (a solid proposal from a researcher, ethics approval, etc) with other requirements we’d all want (good diagnostic criteria for me/cfs, inclusion of PEM, open data) and actual patients on the panel. Beyond that it’s encouragement of things like severely affected people and co-design and co-authorship and involvement and discussion on the forum here, etc so it doesn’t become forced or box-ticking in a rigid way, but things which the funders/panel value so are encouraged.

There’s some more info on what patient participation looks like in the funding documentation. It seems flexible but clear it’s important. A good balance IMHO.

What counts as meaningful patient involvement?
Involvement that goes beyond participation as study subjects. Examples include co-design of research questions and protocols, advisory roles during the project, contribution to dissemination, and co-author-ship where appropriate. Tokenistic involvement will be assessed negatively
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And here too under evaluation criteria, there’s also a lengthy section on patient involvement in that document.
Patient involvement: Is the involvement of people with ME/CFS meaningful and beyond participation as study subjects? Is the involvement feasible for the patients?
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wallfish said:
Would this criterium risk excluding otherwise valuable research, or discouraging researchers from participating?
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How would reasonable levels of patient participation exclude research or discourage researchers from participating?

I don't know about the rest of the world but the UK governmental funders are becoming more and more insistent that patient participation is a requirement in any research study, so any researcher discouraged by the idea of patient participation is going to find funding ever harder to obtain.
 
wallfish said:
What could patient participation look like? Would this criterium risk excluding otherwise valuable research, or discouraging researchers from participating?
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That's a good question, and a reasonable concern.

(Adding, to answer Andy's question, it might be a team with a very technical innovative focus and no previous experience of ME/CFS, analysing data from a biobank or existing genetic data. They might not see the utility of engaging with people with ME/CFS, and think it is all too hard.)

As @hotblack noted, WWTF have given some links to documents with ideas for patient participation. We are fortunate that the person managing the fund for WWTF has a track record in encouraging patient participation. I hope that if there was a research team with no previous knowledge of ME/CFS and no idea how to do some meaningful patient participation, they will get contact WWTF and/or Science for ME.

One fairly easy approach might be for the research team to talk with their national ME/CFS organisation, share their project with them and get feedback. They might have an agreement for the national ME/CFS organisation to help with recruitment or a plan for the team to make presentations to members of the organisation about the work. The idea is to try to move everyone involved forward in knowledge of ME/CFS and in science.
 
Another thought just occurred to me, throwing the question back a little, what do people here think patient participation could mean? What is your idea of good patient participation? There’s no right answer I think but maybe the community can help provide ideas that researchers may read and take up? We’ve had some discussion and threads in the past, maybe it’s a good opportunity to revisit?
 


"Since I've been asked repeatedly, and because I want to express my gratitude to the people and researchers involved, here is the panel for the latest WE&ME funding call.

The jury consists of 7 members in total: 4 researchers, Maureen Hanson (Metabolism), Chris Ponting (Genetics), Michal Tal (Immunology), and David Putrino (Neuroscience), as well as 3 patient representatives, with an additional 2 patient representatives serving as backups. The patient representatives from Science for ME will remain anonymous and were nominated by the Science for ME committee.

I want to again express my sincere thanks to everyone who agreed to take this on and contribute their time, expertise, and judgment to the process. It is deeply appreciated."
 
Science For ME said:
Patient involvement
Members of the Science for ME community were involved in shaping the call and will also play a major role in the review and jury process. The Science for ME committee nominated the patient panel members, three out of the seven voting panel members. We have a further two non-voting forum representatives taking part in the process and available to step in should any of the voting patient members not be able to carry out their duties. The panel membership is confidential. However, the committee is satisfied that the panel is well qualified and will make very good recommendations about which projects should be funded.
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I find it somewhat surprising that when there were extensive arguments from various forum members, including committee members, earlier this year for patient representatives to be named and therefore 'accountable', the representatives of the forum on this patient panel are anonymous.

And I'm also surprised that the general forum membership does not seem to have been informed or consulted on even the broad strokes of this plan. I obviously understand confidentiality prior to the announcement and committee capacity would have made that challenging but I don't think it would have been impossible - obviously happy to be pointed towards any discussion thread that I might have missed.
 
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