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

The problem with patient involvement I see is simply thebureaucracy. As a referee I now have evaluate the patient involvement pages as well as the science. As hotblack says nobody really knows what good patient involvement requires. When you have forty pages to fill in you tend to give up.
 
Jonathan Edwards said:
The problem with patient involvement I see is simply thebureaucracy. As a referee I now have evaluate the patient involvement pages as well as the science. As hotblack says nobody really knows what good patient involvement requires. When you have forty pages to fill in you tend to give up.
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Forgive me, I do not understand the "referee" part you mentioned.
 
Andy said:
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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Can you link to that discussion? Was this about specifically funding panels, or more generally patients being part of PPI groups in individual research projects?
As to not making the process public in advance of announcement, I assumed this was at the request of the funding organisation.
 
Trish said:
Can you link to that discussion? Was this about specifically funding panels, or more generally patients being part of PPI groups in individual research projects?
As to not making the process public in advance of announcement, I assumed this was at the request of the funding organisation.
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It was mainly in discussions about the CMRC/MERC PAG and their role in Forward ME: https://s4me.info/threads/united-kingdom-news-from-forward-me-group.16000/page-15#

There were people arguing that such representatives should not be anonymous.
 
Trish said:
Can you link to that discussion? Was this about specifically funding panels, or more generally patients being part of PPI groups in individual research projects?
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The latest discussion on the topic started here.
Trish said:
As to not making the process public in advance of announcement, I assumed this was at the request of the funding organisation.
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Sure, which I cover in my comment
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.
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Part of the discussion is here, I posted about it there but I think it was being discussed by others elsewhere before that. It was about an organisation being part of Forward-ME and contributing to policy making and advice to government without people in the organisation being identified. There was concern that it was not known for sure what the representatives stood for, what they believed, complicated by ithe organisation being the CMRC patient advisory group when people like Crawley were office holders of the CMRC. Also, that the members had been selected for one job, and were carrying out a different job.

Andy said:
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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I think there is a substantial difference between research project evaluation and policy making. Also, in the case of the S4ME members of the research panel, people know what this forum stands for. They should know that the people who were selected/endorsed by the committee were judged to be sufficiently knowledgeable about ME/CFS and ME/CFS science to do a good job in quite a narrow task.

The roles of the two groups are very different.

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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There is a very good infographic overview of PPI - inputting at various levels which I can't find at moment as router is playing up and I'm stuck with phone .
It may have been SOLVE who produced it.
When I find it I'll see if I can upload / link
 
mariovitali said:
A question for those involved : S4ME members will be anonymous. Will we know at least how many of them voted against or in favour of a proposal?
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I would imagine that, as seems typical for grant reviewing processes, that the decisions of all reviewers will remain anonymous, but I could be wrong in this specific situation. Typically you only announce which grants get funding. You don't announce which projects didn't receive funding, who applied and who voted for who.

I would think that some people would also not apply for funding if it was made public which proposals don't receive funding and you'd get less researchers that do reviews if they end up on a blacklist of "this researcher rejected my proposal so I will reject his in the future" . Similar to how companies don't write LinkedIn posts on who they rejected for their new job.
 
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Can I just clarify for those protesting about not knowing in advance.
The funding organisation is running the project. It is up to them to declde when to make information about the process public, not the forum.

The forum committee was invited to nominate people who we thought would be suitable for this specific role. Those nominated who agreed to be considered made written applicitions to the funding body and 3 were appointed to be on the panel, and the other 2 were appointed to work with them and step in if any of the 3 are unavailable. Part of this process was the promise of anonymity for those appointed.

Just imagine for a moment if the 5 names were made public. We would have people speculating about their forum identities, and some of them perhaps being approached to support particular projects.

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.

MeSci said:
? Why would we be pleased about that?
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You should all be very pleased I didn't put myself forward - I'm too old, too sick to take part in zoom meetings and most importantly, too out of touch with the current biomedical research. The people appointed have all demostrated in forum discussions that they are very good at reviewing biomedical research.
 
Many thoughts coming and going, forgive me if I am posting too much.

My understanding is that members from the S4ME will be making sure that a given proposal :
(i) has a sound study design ?
(ii) see whether the proposal itself is worth looking into (e.g.) "effect of cold exposure on post-exertional malaise"

From my POV, is it right to assume that S4ME members do not have the necessary knowledge to either vote in favour or against the topic discussed in (ii) but they can comment on (i), its study design ?

Also, would applicants get feedback on why their application did not move forward?
 
mariovitali said:
A question for those involved : S4ME members will be anonymous. Will we know at least how many of them voted against or in favour of a proposal?
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That's not up to the forum to decide, but I suspect that's not something that normally gets published.

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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Surely the main thing is their suitability for the role. I don't want to encourage guessing games, and it's not my information to share anyway - and I don't know the answer for some of them, and nor should I.
 
mariovitali said:
Many thoughts coming and going, forgive me if I am posting too much.

My understanding is that members from the S4ME will be making sure that a given proposal :
(i) has a sound study design ?
(ii) see whether the proposal itself is worth looking into (e.g.) "effect of cold exposure on post-exertional malaise"

From my POV, is it right to assume that S4ME members do not have the necessary knowledge to either vote in favour or against the topic discussed in (ii) but they can comment on (i), its study design ?

Also, would applicants get feedback on why their application did not move forward?
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I don't think this is how it's going to work.

As I understand it, we (S4ME members) won't have any direct 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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