2026 WE&ME Research Project - a research fund in collaboration with Science for ME
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OrganicChilli
Senior Member (Voting Rights)
That's exactly what happened. They assessed candidates based on their posts. I'm not sure if you're deliberately misunderstanding what I'm saying. Of course it doesn't mean they went through each message, the selection was based on overall impression.
The status quo is selecting candidates in a closed process as opposed to having a call for applications. At the very least they missed people who might also have been interested. Maybe they had good takes, but haven't posted recently. The current process introduces recency bias.
Did they the dara trial have PPI? I don't know. Are you talking about patient recruitment? I'm not going to read up on it now, but I assume they didn't ask someone to nominate suitable patients. They said they were running a trial and people put themselves forward. The opposite of what happened here.
Nobody would be doxed. The committee creates a post and anyone who's interested can message them privately. Out of all applicants they pick 5 people and still have the option to invite others who they think are suitable but didn't come forward (maybe they missed the post).
I understand there were certain constraints, but I don't think the current process is ideal and it can be improved in the future. I do agree that perfect should not be the enemy of good though.
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Jonathan Edwards
Senior Member (Voting Rights)
My understanding is that this first call is for small projects and that those that look good will be eligible for more substantial support.
Small grants have a place in the funding scheme. They are most appropriate as ways to stretch or expand funding for a 'tide-over' period, which often arises early in a programme development. In some ways 'discretionary' pots of money either held by the research group or funding partners are ideal for this job, rather than project grants, but it is reasonable to expect applicants to propose a module of work and personnel even for small bites like this. It is a long time since I was putting in grants but my impression is that researchers are familiar with this sort of set up and welcome it because it provides flexibility and continuity and in particular allows early stage projects to get to a point where bigger funding is justified.
Jonathan Edwards
Senior Member (Voting Rights)
Doesn't that work out the same as assuming that everyone might be interested and picking 5 people and seeing if they are - which is presumably what happened?
OrganicChilli
Senior Member (Voting Rights)
It involves picking the top five most active posters over the past 6 or so months.
Jonathan Edwards
Senior Member (Voting Rights)
I think our committee are a bit more sophisticated than that - don't you?
No it doesn't. Most members of the committee have been members for several years, some of us from the start nearly 9 years ago. We considered anyone we are aware of who has contributed significantly to meaningful and in depth discussion of a range of biomedical research posted on the forum over the years and who is still involved. Their activity level over the last 6 months didn't enter the consideration.
Remember too that this is not the only way pwME can contribute to research. Each project funded will need to have a PAG. Some researchers may join the forum to discuss their projects. Anyone can put themselves forward to be patient reps on other funding bodies. How about if you're in the UK approaching the MEA to volunteer to be on a funding panel if they have any patient reps. They could do with some knowledgeble ones judging by recent mistakes like the PROMS rubbish.
Of course I understand some people feel left out or would have liked a chance to apply. Maybe if money is raised for another round of funding another year they will do it differently.
I also won't be a party to the deliberations of the judging panel. I would love to be in on the discussions, but I accept that can't be because applicants need confidentiality.
I wonder whether some of the discontent expressed on this thread comes from a misunderstanding of the nature of the WE&ME foundation. I admit I haven't followed all the background to it, but my understanding is that this is a foundation set up and run by private individuals using a large contribution of their own money.
They want this money to go to the best possible projects researching ME/CFS so they set it up as a foundation which others can donate to, and invited people to be scientific advisors. They also needed people with appropriate knowledge of ME/CFS research to be the judging panel for research proposals. They invited the 4 professionals who have been named.
They also knew S4ME as a good place for high quality discussion of research between patients and scientists and wanted expert patients on the judging panel too. They decided to ask the forum committee to nominate suitable people and find out if they were willing to be considered to join the panel to help with wording the funding call and to help judge the research proposals along with the professionals on the panel.
Since they had decided to keep the call for research proposals confidential until they had the judging panel set up, and could announce the call, they couldn't advertise widely for panel members and had no obligation to do so.
The title of this thread is
"2026 WE&ME Research Project - a research fund in collaboration with Science for ME."
I think this may have misled some members into thinking we have been secretly involved in setting up and managing the fund, and that it is a joint project between our committee and the WE&ME founders. This is not the case. All our involvement so far has been to nominate some panel members at their request.
We hope this may lead to more involvement such as researchers receiving funds deciding to get involved here and tell us about their research and ask for feedback, but there is no obligation on them.
They want this money to go to the best possible projects researching ME/CFS so they set it up as a foundation which others can donate to, and invited people to be scientific advisors. They also needed people with appropriate knowledge of ME/CFS research to be the judging panel for research proposals. They invited the 4 professionals who have been named.
They also knew S4ME as a good place for high quality discussion of research between patients and scientists and wanted expert patients on the judging panel too. They decided to ask the forum committee to nominate suitable people and find out if they were willing to be considered to join the panel to help with wording the funding call and to help judge the research proposals along with the professionals on the panel.
Since they had decided to keep the call for research proposals confidential until they had the judging panel set up, and could announce the call, they couldn't advertise widely for panel members and had no obligation to do so.
The title of this thread is
"2026 WE&ME Research Project - a research fund in collaboration with Science for ME."
I think this may have misled some members into thinking we have been secretly involved in setting up and managing the fund, and that it is a joint project between our committee and the WE&ME founders. This is not the case. All our involvement so far has been to nominate some panel members at their request.
We hope this may lead to more involvement such as researchers receiving funds deciding to get involved here and tell us about their research and ask for feedback, but there is no obligation on them.
And professional input is the input of 4 professionals. I don't understand your point. Is it a complaint or are you pleased there is some patient input?
OrganicChilli
Senior Member (Voting Rights)
Maybe, maybe not. Without transparency around criteria we'll never know. What's done is done, but it simply wasn't an ideal approach.
Utsikt
Senior Member (Voting Rights)
No, they committee of S4ME probably didn’t go through posts for this purpose, and I’m pretty sure WE&ME didn’t either.
From my understanding, the 5 people were asked based on the overall impression by the committee. I assume they just asked themselves to list names of possible candidates and then picked 5 of those based on how they remember them.
Sure there’s some recency bias, but that will always be the case. The people that are more active now would also be more likely to see any announcement. You’re wishing for a world that doesn’t exist.
There were no public announcements of recruitment for the dara pilot as far as I’m aware. My guess is that they looked through old applications and maybe asked around. One of the participant worked at their hospital, even though I don’t know if that’s how they got connected.
I don’t know about formal PPI, but they have lots of connection for informal PPI if they need it.
If WE&ME was told to contact Utsikt by DM here, they’d know my username, and then they’d know my real name when I have to give them that.
If the S4ME committee passed on my contact info, the committee would have to know my name.
I don’t see how people could demonstrate their «capabilities»based on S4ME contributions without doxing themselves.
OrganicChilli
Senior Member (Voting Rights)
Nothing wishful about it, just basic requirements.
Nothing about people registering their interest vs the current process compromises anonymity. The way WE&ME get in touch with candidates would remain exactly the same. The only thing that differs is that people know in advance that the foundation is looking for patient experts.
ME/CFS Science Blog
Senior Member (Voting Rights)
Can anyone explain how people registering their interest would have changed anything? As Jo already argued the committee probably assumed everyone was interested before making a choice. So is it mainly about resumes and official qualifications not being considered?
Utsikt
Senior Member (Voting Rights)
As I have explained, there is no way to recruit based on S4ME contributions without one of either the S4ME committee or WE&ME knowing both the name and username.
The only way is if the applications go directly to WE&ME with no involvement of S4ME, but that would be like WE&ME putting out an open call, and only assessing the applicants based on the info they themselves provide. Which defeats the whole purpose of collaborating with S4ME on finding good candidates.
Jonathan Edwards
Senior Member (Voting Rights)
That sounds like the talk of a constipated government committee. The choosing inclinations of the committee are totally transparent to those of us who have shared discussion with them over many years. I am pretty sure they value nous, not bibliometrics. And so they should. If people are unimpressed by the priorities of the committee they can volunteer for the job and work their backsides off for the rest of us, as the current committee do for no reward.
I can see the value in discussing all this but it surprises me that people are not more aware of how much compromise human interaction involves if it is to get anywhere.
OrganicChilli
Senior Member (Voting Rights)
Which I did, twice, fyi and there was no interest. Not as a moderator though, don't worry. I certainly don't accept the excuse of the overworked committee.
Kitty
Senior Member (Voting Rights)
As has already been made clear, the choice was to take part on WE&ME's terms—it's their project, their money, and their offer to involve members was a generous one—or decline the invitation.
As I understand it, the S4ME committee didn't design the process and had no say in how it was run. If that's correct, trying to imply they could have chosen to do it differently is a mischaracterisation. One that I find pretty uncomfortable.
Felis Catus
Senior Member (Voting Rights)
Sorry, I might've missed something. Couldn't people just message the committee to nominate themselves and be judged based on their posts?
The committee picks the candidates and gives them WE&ME contact details with instructions how to title the email and what to put in the text to ensure it's coming from a committee chosen member rather than someone faking it.
So no one has both the name and forum username.
If people are concerned that the committee had been partial and chosen their favourites over better candidates, I don't see how that would've changed if members could've nominated themselves or other members.
This is off topic for this thread.
You and anyone else, if eligible, are welcome to stand for committee at the next election. I find your comment about the committee's overwork unhelpful.
Sometime people volunteer offering specific skills or roles that aren't needed at that time. We do need someone to write UK news items for the news in brief if you are interested. Please contact me by DM if interested in the latter.
Sometime people volunteer offering specific skills or roles that aren't needed at that time. We do need someone to write UK news items for the news in brief if you are interested. Please contact me by DM if interested in the latter.
Utsikt
Senior Member (Voting Rights)
It seems like it’s me who might have been missing something.
I have been assuming that S4ME would send a list of either user names or full names. But S4ME giving the people a code word would solve it, assuming there is no further contact between S4ME and WE&ME about the participants.
So then it’s just about an open application maybe resulting in some different people being chosen, even though all of them would be qualified regardless of which process was used.