Felis Catus
Senior Member (Voting Rights)
I think people here are analysing genetic data because that's what they can do at home unlike wet lab experiments.
2026 WE&ME Research Project - a research fund in collaboration with Science for ME
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Jonathan Edwards
Senior Member (Voting Rights)
I don't see anyone on the forum having a preference for genetic studies per se. It is just that we have some data worth analysing at this point in time. There is also a clear case for a WGS study, which SequenceME will cover. Beyond that I see the interest shifting to what these or other genes might be doing in either immune or nervous systems or elsewhere. But not in any way exclusively. We have also been talking about JAK inhibition, T cells, B cells, NK cells, lipids, prolactin responses and all sorts. And everything to do with regulation is gene expression anyway. Different sets of experimental tools do not equate to different sets of theories.
Jonathan Edwards
Senior Member (Voting Rights)
That document seems to focus specifically on 'patient-led-research' which to me looks like a rather dubious idea built around registries and gathering patient reports. We have had some rather unhelpful stuff on drugs from a 'patient-led' research team already.
To me, PPI can cover a whole range of things, all worth at least considering. This particular WE&ME initiative looks like one really good way of doing things, but one that is rather unusual because of the unusual context.
Yes, personally I see all of this as a non issue as well. I doubt historically people are becoming members of S4ME because of a particular affinity towards one subject.
There is a lack of good data in the field of ME/CFS that reliably points somewhere, with the reliable findings almost all being negative results that don't pinpoint to something rather than away from something and we now have some new good data coming from genetic studies where one doesn't have to worry about one set of causative problems, that is usually troubling, and which can be built upon even if it is hard to know what it could suggest specifically.
But I can understand why people might think differently and I think it's good that they can air out their thoughts, as it is always the case on here.
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MrMagoo
Senior Member (Voting Rights)
*obligatory “not a scientist” disclaimer
It seems to me from what I’ve read on the thread that it’s standard practice for these panels to exist, and for them to be anonymous.
Therefore the choice is either that this panel includes some anonymous members from S4ME or from somewhere else.
Therefore the real-world choice is “do you want people approached and selected anonymously from S4ME or not?”
It seems to me from what I’ve read on the thread that it’s standard practice for these panels to exist, and for them to be anonymous.
Therefore the choice is either that this panel includes some anonymous members from S4ME or from somewhere else.
Therefore the real-world choice is “do you want people approached and selected anonymously from S4ME or not?”
MrMagoo
Senior Member (Voting Rights)
Furthermore, having only had the experience of panels making assessments of non-research things, it’s never really the case that each member has to be an expert.
An example of this would be a jury in a court case.
I think a panel who is looking at a proposal for funding is deciding yes or no to a proposal put in front of them.
If it’s a proposal for say a CPET trial, then having people with a genetics background doesn’t mean they will convince the whole panel that it shouldn’t happen because it’s not genetic based and only genetics should be studied, in their view.
They are not being asked “please design a trial based on your personal knowledge” unfortunately, S4ME is not at quite that point yet!
An example of this would be a jury in a court case.
I think a panel who is looking at a proposal for funding is deciding yes or no to a proposal put in front of them.
If it’s a proposal for say a CPET trial, then having people with a genetics background doesn’t mean they will convince the whole panel that it shouldn’t happen because it’s not genetic based and only genetics should be studied, in their view.
They are not being asked “please design a trial based on your personal knowledge” unfortunately, S4ME is not at quite that point yet!
The idea would have been to make an announcement on s4me for members interested in serving on the panel to apply. If it has to be anonymous then the committee is not obliged to disclose who they chose.
MrMagoo
Senior Member (Voting Rights)
I thought that was why the Willing and Able thread was set up now though?
Yann04
Senior Member (Voting Rights)
Yes. I sympathise with people who would have wanted more transparency or ability for forum members to chime in before decisions were made. Or have a public application.
But as far as I understand none of this was a choice by the committee, they did the best with the terms they were given. Given they basically were told to have a complete information blackout. So most of what people are asking for genuinely couldn’t have happened with this arrangement. So I don’t think frustration towards the committee is warranted here.
I’m frustrated with how academia works and how it structurally prevents more information transparency. But I think this We&Me initiative is also a major step forward and am very grateful to both We&Me, the committee members, and those who applied for the PPI role. I think we shouldn’t forget this is a major step forward both for proper PPI in ME/CFS and for the forum.
I found @rvallee ’s messages to be reassuring as well.
It was a condition put by WE&ME that we do not publicize anything about it until they announced it.
Panel deliberations will also be confidential from the committee, we will have no input into their process.
So "patient input" actually refers to the input of 5 patients. Very interesting.
Kitty
Senior Member (Voting Rights)
Yup, that's what I was trying to say in my long winded way.
The panel won't be asked to discuss the merits of particular directions of research, they'll be evaluating specific project proposals. The amounts of money the foundation can make available means those projects are likely to be asking quite tightly focused questions.
Utsikt
Senior Member (Voting Rights)
I didn’t say it had anything to do with Fluge and Mella. It was an example of non-transparent recruitment to a new project that everyone seems to be fine with.
Defend what status quo?
And what exactly is the problem with recruiting participants confidentially for this specific purpose?
There is no way someone are going to go through hundreds or thousands of forum messages to assess the «suitability» of potential participants.
This would also require anyone involved to dox their username to WE&ME because they’d be speaking to them under their real name.
At the risk of repeating myself: the goal of the recruitment process was to get candidates that were good enough. I have full confidence the process achieved that.
Kitty
Senior Member (Voting Rights)
Yep, five times more than we usually get. And they all have access to a vast resource of patient experience across every severity, presentation and length of illness, as well as dissections of hundreds of previous papers.
Very few researchers ever get access to patient input of this breadth and quality, and it's fantastic that WE&ME has recognised its importance.
Thank you for answering.
I think you could have made a generic call for proposal reviewers and not said anything about the specific funder in this case.
I don't know how this translates to a breadth and quality of access to patient input, but oh well.
"I think a panel who is looking at a proposal for funding is deciding yes or no to a proposal put in front of them."
Jonathan Edwards
Senior Member (Voting Rights)
Researchers already have that - by coming on the forum and discussing ideas. As broad and as high quality as one could want.
The WE&ME arrangement is specifically about selecting small grant proposals. These proposals have to have the option of confidentiality at this stage. Plagiarism of proposals is a problem.
Patient involvement in standard grant review panels will always be limited in number because grant review panels are limited in number due to confidentiality amongst other things.
Other than that the specifications for example state:
- "Meaningful involvement of patients and/or patient representatives is mandatory. Patient perspectives must be integrated along the research cycle. Patient advisors or representatives should be active participants in the project team. "
- "WE&ME Foundation treats people with lived experience as research partners, not only as study subjects. The WE&ME Foundation cooperates with S4ME on patient involvement. Every proposal must include a Patient Involvement Plan describing how patients or patient representatives will be engaged across the project lifecycle following best-practice examples like https:// https://sites.google. sites.google. com/nihr.ac.uk/pi-standards/home om/nihr.ac.uk/pi-standards/home. We encourage the engagement with dedicated patient organisations as part of the larger project consortia."