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

[mariovitali]

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.

It depends on the members Professor @Jonathan Edwards . Certain members are indeed very capable to identify inconsistencies in study design but these same members cannot (and may I say should not) decide as to whether we should focus to -as an example- mitochondria. Perhaps other members do have this knowledge but the problem is that we do not know which were chosen.

So I am basically asking -since we cannot know who these members are- what kind of questions these members can answer. If the chosen members have only mathematical / computational knowledge and have no idea about biology and despite this they can decide as to whether mitochondria should be investigated then that is a big problem.

 

[Jonathan Edwards]

I don't understand all these negative comments. S4ME has been invited to give its input into an existing funding body. Do we turn that down? If the funding body's choice of advisors is not perfect do we just back off or do we take the opportunity to inject some sense into things?

As a retired immunologist who has also worked in neuroscience I fully recognise that a number of members here who have no formal medical training are very capable of providing an incisive critique of any grant application on ME/CFS. Some better than I could. We have been steeping ourselves in the science for nearly a decade. People here are as well trained as anyone professional. In fact the professionals need to make sure their socks are pulled up, as Chris P has admitted.

Is there a whiff of sour grapes here?

Bring it on. This is the sea change we have all been wanting for too long.

 

[OrganicChilli]

I have no interest in PPI involvement or medicine (I'm just here for a breakthrough announcement) but I do wonder why the committee didn't ask for applications and then chose from those applications instead of selecting people behind closed doors? I think the Willing and Available thread is a great idea, but many members have probably missed it or forgotten about it.

 

[Jonathan Edwards]

So I am basically asking -since we cannot know who these members are- what kind of questions these members can answer.

We live in the real world @mariovitali. We are making a lot of progress. We have a committee of dedicated and highly intelligent people who know what they are doing. Some things in life don't have the sort of answers you get out of a computer programme. You learn to trust people who are good at doing stuff. We have people who are very good at doing stuff. (And as I said, none of this involves me, it is about patient participation.)

And if we say no thanks, where does that get anybody?

 

[Felis Catus]

It depends on the members Professor @Jonathan Edwards . Certain members are indeed very capable to identify inconsistencies in study design but these same members cannot (and may I say should not) decide as to whether we should focus to -as an example- mitochondria. Perhaps other members do have this knowledge but the problem is that we do not know which were chosen.

So I am basically asking -since we cannot know who these members are- what kind of questions these members can answer. If the chosen members have only mathematical / computational knowledge and have no idea about biology and despite this they can decide as to whether mitochondria should be investigated then that is a big problem.

But no one can know what proposals are going to be received at the time of forming the committee. Maybe all projects are going to be about mitochondria, maybe none will be. If anything, it's good to have a diversity in the committee, so people can look at the proposals from different perspectives.

I can't fully understand your criticism as it seems to imply unrealistic standards.

 

[Utsikt]

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.

And that was answered in the info: they will be able to vote on the decisions the panel will make, which is anything related to the approval of the grants.

If they do not have a medical background can they *really* suggest that given the biology and previous findings, looking at mitochondria is relevant?

They will have to look at the references for the proposal and see if those appear to be okay. Some of them might have been discussed here and elsewhere already.

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.

I don’t think that’s how it works. Everyone votes on everything. We don’t require politicians to be experts on every topic they decide on, and I don’t see how this is different.

And what’s to stop the «experts» from being biased? We see poor studies getting funding all the time, decided by so-called experts.

I think the best we can do is to get people that have demonstrated a good judgement in general. And I don’t see any reason to think the 3 people would not have that based on the recruitment process. I’m much more worried about Putrino for example, he’s been involved in some questionable studies before.

 

[Nightsong]

On the anonymity question I think the discussion on the other threads pertained more to advocacy organisations involved in the UK DHSC process / national delivery plan. I think that organisations involved in political decision-making that could affect all UK patients' lives at that level should be accountable to those whom they're claiming to represent. That would not necessarily mean naming every patient representative - but several organisations involved in that plan just do not engage with the broader patient community at all, and are fundamentally unrepresentative and unaccountable.

It's a completely different matter when it comes to whether three individual patient members of a private funding organisation's review panel should be anonymous if they wish to be. Of course they should be afforded that opportunity.

Looking through the call specification it looks as though considerable thought has gone into not only the level of patient involvement but research integrity & ethics issues.

Most patient involvement in research more generally seems to remain tokenistic, and often limited to ancillary matters such as reviewing the wording of patient-facing materials. From my reading of the announcement, though, this sounds as though it is the complete opposite of tokenistic, and instead puts well-informed patients at the heart of decision-making.

Nothing is ever as perfect as we would wish it to be. The real question is whether the process will benefit significantly from the presence of patients who are S4ME members & who, presumably, have a good understanding of the strengths & weaknesses of the biomedical research landscape. I'm quite sure that it will, not least because I think the committee will have chosen wisely.

To me this seems like a very welcome development.

 

[Utsikt]

I have no interest in PPI involvement or medicine (I'm just here for a breakthrough announcement) but I do wonder why the committee didn't ask for applications and then chose from those applications instead of selecting people behind closed doors? I think the Willing and Available thread is a great idea, but many members have probably missed it or forgotten about it.

My speculation is that they approached the committee and asked them for recommendations and/or to reach out to members they thought would be interested in, able to, and qualified to participate.

I’m sure there are more people that could have been involved, but I’m also sure the ones that are involved now are more than good enough and they only needed 5.

Nothing like this happens in open calls. It’s just too messy. I don’t see the issue here.

 

[mariovitali]

I don't understand all these negative comments. S4ME has been invited to give its input into an existing funding body. Do we turn that down? If the funding body's choice of advisors is not perfect do we just back off or do we take the opportunity to inject some sense into things?

My comments are not meant to be negative. I am hoping to bring useful criticism. Did you see anything in my comments suggesting that this should be turned down? Not my intention

As a retired immunologist who has also worked in neuroscience I fully recognise that a number of members here who have no formal medical training are very capable of providing an incisive critique of any grant application on ME/CFS.

Yes, we are trying to understand the scope of the critique that these unknown PPI members can do. I do not wish to know who they are, but I would surely like to know whether they have the necessary knowledge to suggest that a given medical target should or should not be pursued.

Some better than I could. We have been steeping ourselves in the science for nearly a decade. People here are as well trained as anyone professional. In fact the professionals need to make sure their socks are pulled up, as Chris P has admitted.

Is there a whiff of sour grapes here?

Bring it on. This is the sea change we have all been wanting for too long.

I believe that there is no reason to dramatise things. So here is my suggestion and comments :

-A member of the PPI with good statistical knowledge / study design knowledge should not be able to decide whether a given research target should be pursued. He/she should do all necessary checks and suggestions in order to ensure the proper design of the study. He/she can also propose research targets, given findings. It should be the job of Maureen Hanson, if the target in question is -as an example- metabolism to decide.

-A member of the PPI with a biology background should be able to comment, propose and perhaps decide whether a given biological target should be pursued.

 

[ChronicallyOverIt]

mitochondria should be investigated then that is a big problem.

Right now we have magnetic hat studies getting funding from one of the lead researchers, Putrino. Not that he’s used this groups money for that but that just where Putrino is at with his research.If there can even be slight voice of reason to sway into biological research we’re winning.

This is win guys, also in the scheme of things this is a small amount of funding where we already get zero say in any other research direction. Now we get some, heck there’s even a thread for research proposals on this site. Put forward your ideas if you want something researched!

 

[OrganicChilli]

My speculation is that they approached the committee and asked them for recommendations and/or to reach out to members they thought would be interested in, able to, and qualified to participate.

I’m sure there are more people that could have been involved, but I’m also sure the ones that are involved now are more than good enough and they only needed 5.

Nothing like this happens in open calls. It’s just too messy. I don’t see the issue here.

I'm not saying they should have chosen more than five people, I'm saying they should have chosen those five people from a number of applicants. I'm sure they are qualified, but I find the lack of transparency problematic. The same five people might have been chosen regardless of the process, but this wouldn't come as a surprise announcement to everyone else.

 

[Hutan]

Will everything about this funding call be perfect? No, certainly not. But, in both organisations, there is openness to hearing criticisms and to making improvements. Is it a relatively small sum of money? Yes, but it is something, and a relatively smalll sum well spent is much more useful than a large sum squandered.

What I can say about the patient representatives is that each of them is deeply committed to good science as a key way to achieve better futures for people with ME/CFS, each has spent a lot of time reviewing ME/CFS literature and has a demonstrated capacity to evaluate it. I know they will put the work in to evaluate the proposals carefully, because the outcome matters to them. @Sly Saint, the committee did particularly consider ensuring there were female representatives, and there is geographical diversity.

With three voting patient representatives and some excellent people in the four researcher representatives, I am sure that there will be good decisions made. Part of the agreement with WE&ME is that the forum committee will be consulted should there be changes to the composition of the panel, so there will be input on the panel going forward. WE&ME and the forum committee are aligned in wanting good outcomes for people with ME/CFS as quickly as possible.

In a previous proposal evaluation process I was involved with, run by a well funded government organisation, some of the 'consumer representatives' knew nothing about ME/CFS, they had no background in ME/CFS. One consumer representative's main contribution about a proposal that she was assigned to evaluate, was to note that she had googled 'Professor Andrew Lloyd' and that 'he seems to be very well respected'. Some of the researcher representatives had clearly not put any time into reading the proposals and knew little about ME/CFS.

I know that this WE&ME process will be enormously better than that government process. But, as mentioned, the success of the fund depends on the quality of the proposals submitted. The fund now needs forum members to help ensure that there are good proposals to consider.

I can understand members' wish that there had been an application process to select the patient representatives put forward to WE&ME. I would need to go back and look at the timeline, but I think there were logistical issues that made that impossible. I think it is something that could hopefully be improved if something like this was done again.

 

[Jonathan Edwards]

I would surely like to know whether they have the necessary knowledge to suggest that a given medical target should or should not be pursued.

Anyone who has hung around this forum for a while and who makes regular impactful contributions (i.e the likely people) will either have the necessary knowledge or know how to go about finding it. A referee never relies entirely on their own knowledge. They know who to consult if needed. They comment on the aspects they are confident about. Peer review uses several opinions in the expectation that focus will vary. I think questions like this are just unrealistic.

So here is my suggestion and comments :

But your suggestions are predicated on some ideal intellectual world where you can actually compartmentalise these things. The whole point of science is that it tries to find ways forward that nobody has thought of before and nobody knows who is most likely to think of. Human brains do not fit in to pigeon holes. If they did then the scientific community woud have solved ME/CFS without patients needing to be involved. The fact that the patients are driving the agenda shows just how haphazard th whole thing is. We have people on the forum with no molecular biology training who are motoring ahead with the MB analysis across several projects. You might as well say that Michaelangelo's pictures should only be assesed by someone who also hold their brush in the left hand. Life is not like this.

 

[EndME]

-A member of the PPI with good statistical knowledge / study design knowledge should not be able to decide whether a given research target should be pursued. He/she should do all necessary checks and suggestions in order to ensure the proper design of the study. He/she can also propose research targets, given findings. It should be the job of Maureen Hanson, if the target in question is -as an example- metabolism to decide.

-A member of the PPI with a biology background should be able to comment, propose and perhaps decide whether a given biological target should be pursued.

What are you proposing? Should sleep studies be straight-out declined because there are presumably no sleep experts in a given panel? What about a metabolic study that is outside of the area of expertise of a given metabolic expert?
If proposals are decided by single individuals how do you ensure a good process that isn't inherently flawed?

 

[Kitty]

I find the lack of transparency problematic.

But the committee wasn't able to tell members about the project. That was clearly a key part of the deal. How would you invite members to apply for positions you can't tell them about?

I don't see anything here that's outside the scope of normal practice.

 

[Trish]

Yes, we are trying to understand the scope of the critique that these unknown PPI members can do. I do not wish to know who they are, but I would surely like to know whether they have the necessary knowledge to suggest that a given medical target should or should not be pursued.

Given that the 5 people are all forum members and all have ME/CFS and were selected for their demonstrated capacity to review biomedical research papers helpfully, and the funding body decided to appoint them all to the panel and reserve group, I think we did the best we could with the invitation to nominate people. We were not asked to advertise the role on the forum, and the funding body did not advertise for applicants. This was their chosen way of finding suitable people with ME/CFS to contribute to the panel decision making.

I'm sure the panel members will all read the applications carefully and discuss in detail before voting. I think it's great they wanted to have some expert patients on the panel. They will be able to contribute to both the discussion of the scientific study proposal and to give expert views on whether the proposals demonstrate good understanding of relevant factors of things like patient recruitment, roles intended for PPI's in the research and things only people who understand ME/CFS well can contribute. They wlll also be well aware of any suggestions that are being made on the forum of avenues worth researching.

To those protesting aspects of this, I wonder whether you know the names of the panel members of other ME/CFS research funders. I have no idea who chooses how to spend the MEA, AfME, MERUK, SolveME and other charities research funds. Nor do I know whether they have any people with ME/CFS on their funding panels, let alone whether any patient reps have good knowledge of the current research picture.

 

[Peter T]

No system is perfect, but this seems a great step forward. Hopefully it works well and all involved learn from the process.

The better it works, the bigger the chance that future schemes work even better.

 

[SugarSquared]

@Sly Saint, the committee did particularly consider ensuring there were female representatives, and there is geographical diversity.

I'm not the person mentioned here, but I am very happy to hear this. This is really important.

But, as mentioned, the success of the fund depends on the quality of the proposals submitted. The fund now needs forum members to help ensure that there are good proposals to consider.

I look forward for opportunities to help with this.

 

[Utsikt]

I'm not saying they should have chosen more than five people, I'm saying they should have chosen those five people from a number of applicants. I'm sure they are qualified, but I find the lack of transparency problematic. The same five people might have been chosen regardless of the process, but this wouldn't come as a surprise announcement to everyone else.

And how would you realistically have gone about arranging that in what is essentially a pilot project?

Fluge and Mella didn’t do a broad and open recruitment for their Dara pilot. Is that an issue as well?

The priority was to get good people. I have full confidence they achieved that. Isn’t that good enough this time around?

If this becomes a regular thing I’m sure they’ll work on a process to enable more people to register their interest.

 

[mariovitali]

What are you proposing? Should sleep studies be straight-out declined because there are presumably no sleep experts in a given panel? What about a metabolic study that is outside of the area of expertise of a given metabolic expert?
If proposals are decided by single individuals how do you ensure a good process that isn't inherently flawed?

The idea here is that a trained medical professional has a better capacity to understand areas he does not know than a non-professional could.