2026: Science for ME reviewer nomination project, in conjunction with WWTF and WE&ME

[butter.]

I have never argued it’s easy to find people to do it. Just that there should be a minimum standard. You can’t expect anyone to judge the scientific excellence of someone if they do poor trials themselves. The vetters must be vetted themself, otherwise the poor methodology will continue to flourish. The next step could be to involve S4ME or others with similar expertise when creating the jury.

I might be overly optimistic, but I hope some of the better researchers would find some appeal in helping out a funder that really want’s to get things right, and where there is a real possibility of achieving it.

You have not said that, but your post implies, at least to a degree, that if WWTF had just tried harder they would have satisfied your demands. But you can't really know that. We all want "better" jury members, it's not a demand issue, but a supply issue first, in my experience.

 

[Hutan]

I think there's a good argument for giving everybody involved in this a chance to learn and improve. It will soon become clear which foundations and research funders, which researchers, which jury members are able to do that.

Hopefully, there can be a virtuous circle, with all the parties, including patients and their families, donors and charities, contributing to an environment where the ME/CFS research infrastructure becomes increasingly professional, productive and capable of attracting and supporting great researchers.

The next step could be to involve S4ME or others with similar expertise when creating the jury.

That has already happened! WWTF and WE&ME proactively worked with S4ME to find jury members for the 2026 WE&ME international fund. And notably, members of those organisations are here on the forum, observing the discussions and potentially being influenced by them.

 

[Utsikt]

You have not said that, but your post implies, at least to a degree, that if WWTF had just tried harder they would have satisfied your demands. But you can't really know that. We all want "better" jury members, it's not a demand issue, but a supply issue first, in my experience.

It was not my intention to say that they could have solved it by working harder. Rather it was that maybe putting certain people further down the list would have been a good idea. But I can’t know who they asked first.

That has already happened! WWTF and WE&ME proactively worked with S4ME to find jury members for the 2026 WE&ME international fund. And notably, members of those organisations are here on the forum, observing the discussions and potentially being influenced by them.

That’s great!

I think there's a good argument for giving everybody involved in this a chance to learn and improve. It will soon become clear which foundations and research funders, which researchers, which jury members are able to do that.

I have no doubt that WWTF and WE&ME are very eager to do things right, regardless of what it entails. And everyone should get opportunities to do better and to learn. But some will insist on continuing doing things their way, and we can’t afford to humor them anymore.

Hopefully, there can be a virtuous circle, with all the parties, including patients and their families, donors and charities, contributing to an environment where the ME/CFS research infrastructure becomes increasingly professional, productive and capable of attracting and supporting great researchers.

I really hope so as well. I really like WWTF and WE&ME’s commitment to long term possibilities with follow up calls. They are trying to fund things that will last.

 

[duncan]

This is such a solid development.

I just hope persistence is given its due. After all, how do you look for viruses with crap diagnostics, or, where I live, for viruses that can be chronic - and even kill - with NO diagnostic?

That doesn't even touch upon the bacteria and parasites with a tropism for brain tissue that science has demonstrated can persist, but which have been banished to the sidelines because of medical politics - not science.

 

[OrganicChilli]

I just hope persistence is given its due.

I, for one, would like to be cured in this lifetime, but each to their own. I hope someone prevents Putrino from misusing funds to go on a viral persistence goose chase. It is unbelievable that this guy shows up everywhere.

 

[duncan]

I hope someone prevents Putrino from misusing funds to go on a viral persistence goose chase.

Ah. It's good to be smart.

 

[duncan]

I, for one, would like to be cured in this lifetime, but each to their own.

Yeah, I suppose I would prefer to wait.

 

[Sean]

I wouldn’t mind having people with different ideas about how to approach the problem. But that’s different from having people that have repeatedly shown that their bar for what passes as «good research» simply isn’t high enough.

ETA: if you asked all of the staff of S4ME about which project they think should be prioritised, you’d get all different answers. But everyone would still agree that the science has to be done right.

It should be in the interest of WWTF to select panel members that are able to ensure that funding isn’t wasted on what are dead ends by most reasonable standards, or on projects that can’t generate data of high enough quality to be able to guide future projects.

This.

I have no specific preference for what particular science should be done. But I do demand that it is

1. relevant, and​

​

2. done to the highest possible technical and ethical standard, and​

​

3. that a robust and safe minimum standard must be met before any study results can become applicable in clinical practice or policy advice.​

These conditions are non-negotiable, in my view.

It is a very sad and disturbing state of affairs that these conditions even have to be overtly stated and asked for. But here we are.