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

Violeta said:
Are we allowed to know if those chosen actually have ME/CFS?
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It's in the announcement.

Science For ME said:
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.
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Violeta said:
Many of us are asking for transparency.
Is that too much to ask for?
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Yes, in some cases it is too much to ask. As I've explained, the project is run by the funding body, not by S4ME.

Can I ask you in return, why do you think there should be transparency?

Have you considered carefully the impact on the patient members of the panel in having their real names revealed, and probably inevitably being tied to their forum names? Who would benefit from the names being public? Is it possible that none of those willing to take on this task on our behalf would have felt able to be involved if their names were going to be made public? Might we end up with less suitable people if only those willing to be 'outed' were appointed? Do you not trust the committee?
InitialConditions said:
As i understand it, we (S4ME members) won't have any input and won't see the proposals. The 4 S4ME PPI members on the panel will be part of the peer-review process.
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No of course we won't see the proposals. Applications for research funding are always confidential before decisions are made.
 
Science For ME said:
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.
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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?
 
Trish said:
I must say I'm surprised that there is some negativity about this process. Can't we just be pleased that the value of the forum is recognised by a funding body, and that we have 5 people with ME/CFS willing and able to put the time and effort into the work involved.
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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!
 
Chandelier said:
The core idea that researchers will work in public on refining their studies with the help of this forum seems groundbreaking to me.
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Great that you are enthusiastic. I don't think the above is quite what is envisaged. Researchers are not obliged to use the forum at all, though we hope they will.
This is what Hutan has explained:

Hutan said:
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.
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Hutan said:
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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Trish said:
Yes, in some cases it is too much to ask. As I've explained, the project is run by the funding body, not by S4ME.

Can I ask you in return, why do you think there should be transparency?

Have you considered carefully the impact on the patient members of the panel in having their real names revealed, and probably inevitably being tied to their forum names? Who would benefit from the names being public? Is it possible that none of those willing to take on this task on our behalf would have felt able to be involved if their names were going to be made public? Might we end up with less suitable people if only those willing to be 'outed' were appointed? Do you not trust the committee?
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So WE&ME asked for anonymity?

Who is on the committee?

Apparently even some people on the committee did not want anonymity.

"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."
 
Hutan said:
It is my experience and understanding that members of evaluation panels are often anonymous, mostly to ensure there isn't pressure put on the members to favour certain projects when awarding funding. I had thought that all of the members of the WE&ME panel were going to be anonymous, not just the patient members.
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I have general concerns about anonymous panels for grants. The main worry is that there is no accountability or transparency, so they can in theory just decide what they want. I understand the concerns about lobbying, but there are no guarantees that they are going to behave neutrally in the first place. We know these things go wrong all the time, otherwise the BPS crowd wouldn’t get any funding.

That being said, anonymity is the norm and we can’t change it after the fact.

And the purpose of requiring identities to be known would be to increase the quality of the decision and the trust in it. If the S4ME committee are happy with the people, I trust their judgement, so revealing their identities is not really needed in this case.
Sly Saint said:
Re the representatives: I appreciate that they should be allowed to be anonymous, but are we allowed to know what gender they are , what nationality and how long they have had ME/CFS?
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That’s potentially identifying information, so I hope not if they are supposed to have anonymity.
 
Violeta said:
Apparently even some people on the committee did not want anonymity.

"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."
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This was answered already:
https://s4me.info/threads/2026-we-m...oration-with-science-for-me.50731/post-700319
 
Trish said:
Great that you are enthusiastic. I don't think the above is quite what is envisaged. Researchers are not obliged to use the forum at all, though we hope they will.
This is what Hutan has explained:
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The full document says this:
Note: If invited to submit a full proposal, you will have the opportunity to partake in an open discussion on the S4ME forum to receive feedback from patients and carers. This will be a unique opportunity to bring your proposal to the next level and avoid tokenistic approaches. S4ME will make sure that the discussion will be fair.
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So no obligation, like you said. If they want to keep their projects secret there won’t be any open discussions. Although I hope some of the researchers would be willing to discuss things in more general terms.
 
If my identity were to be made public I wouldn’t get involved with any project in any capacity. The sort of targeting people get, either by other individuals who disagree with something or indeed the way in which governments use information to decide things like eligibility for benefits is well known. It would just not be worth the hassle.

I’m all for transparency but it also needs to be balanced with privacy and protection of sick and vulnerable people, if not we are in effect excluding people from being included in these sorts of processes.
 
Utsikt said:
So no obligation, like you said. If they want to keep their projects secret there won’t be any open discussions. Although I hope some of the researchers would be willing to discuss things in more general terms.
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The document also makes it clear that token PPI will be seen negatively.

Just to return to the point I made previously, I like that things are a bit loose here. If they’re too tight things could be a checkbox exercise or sanitised. The fact there is disagreement here, as there always is, shows what S4ME can bring. No researcher is obliged to get involved and nobody here is obliged to anything either. There will be debate, there will be disagreement, there will be discussion. Hopefully people and the projects will benefit from that. It seems to me very much along the lines of what some here have been hoping for for a long time.

We have some great examples of PPI but some elements are always behind closed doors, look at even those examples we often hold up to see that. Selection of who is involved is not a public vote and publicity of involvement vsries, decisions are made in meetings none of us ever see. That seems to be as @Utsikt says the norm, or at least common.

I’m not aware of any funding like this for ME/CFS research, at this scale, that has involved encouragement of and use of a community and forum like this in this way. Maybe I’ve missed it if so? Maybe it’ll work out, maybe it won’t, and I’m sure there will be hiccups along the way. But I’m really excited to see what projects come out of this and we as a community can do together and what we can contribute to them.
 
hotblack said:
If my identity were to be made public I wouldn’t get involved with any project in any capacity. The sort of targeting people get, either by other individuals who disagree with something or indeed the way in which governments use information to decide things like eligibility for benefits is well known. It would just not be worth the hassle.

I’m all for transparency but it also needs to be balanced with privacy and protection of sick and vulnerable people, if not we are in effect excluding people from being included in these sorts of processes.
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I think hotblack's comment is important. This forum is set up to provide a safe space for pwME that does not require anyone to reveal their real identity. I have no idea of the real names or gender of several forum staff and committee members. I know what I need to know about them - that they are willing and able to contribute constructively to running the forum and to forum discussions.
 
I think this is fantastic news though I was a little taken aback since when I first read the WE&ME announcement I thought it would be like anyone on the forum being able to input on a members only thread. So the couple PPI members chosen from the forum is great as well, but I felt a little confused for a bit haha.

I totally understand it’s common practice to keep projects confidential at first in science. Though I think it’s a bit of a shame to be honest. 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. But I understand that the very competitive and somewhat IP heavy way academia is structured means researchers are worried about their project ideas being “stolen”. I just perhaps want a world where your project ideas being used by someone else is seen as a complimemt.

Anyways I sort of got off topic sorry. A massive congratulations to those who organised this behind the scenes. I’m ecstatic that the forum is finally starting to get the recognition it deserves and people from the forum will be able to have a significant say in how a very significant chunk of money gets invested into our future. :party::balloons:
 
Trish said:
Surely the main thing is their suitability for the role.
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There are more women than men with ME/CFS, diagnostic criteria varies from one country to another, and recent diagnosis could mean they are not representative of ME/CFS patients. If they are being selected purely because of their 'scientific know-how' then that is a completely different scenario. (sorry, I've not worded that very well, just trying to explain. Again, I completely get the anonymity bit).
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hotblack said:
I’m all for transparency but it also needs to be balanced with privacy and protection of sick and vulnerable people
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True, and "transparency" is always contingent on balancing legitimate interests.

If members would like to be more involved in making decisions like this, they can stand for election to the committee. Those who don't stand—and hands up, I'm one of 'em!—know that decisions have to be made by those who do.

In this case, the committee had the choice to accept the conditions of the collaboration, or decline the invitation to take part. There's nothing unusual about that, and I'm glad they accepted.
 
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