BMJ: Activists demand more funds for ME research

[Shadrach Loom]

Thanks. I find it a bit puzzling though - has any quality ME/CFS grant request ever been submitted to WT ? Seems a bit odd to complain about the org not doing anything if the usual process of asking for support hasn't been explored.

I’m a bit baffled too. If I got a letter beginning “we demand” from a group of people who claimed that “we are all connected” I’d file it alongside threatening but essentially ignorable correspondence from TV Licensing and other oddballs. Especially if it contained some red string.

 

[Jonathan Edwards]

I know that grants have been put in to Wellcome and turned down. People like Luis Nacul and Amok Bansal will have been trying Wellcome as well as other sources.

It makes sense to me to target Wellcome. Unlike the MRC, which has to appear scrupulously even-handed, being government funded, Wellcome has always been in a better position to pick target diseases as and when it chooses. It also has had a fairly regular turnover of directors since the days of Bridget Ogilvie. Wellcome is very much part of the in-crowd network and it will have been supplied with reviewer opinions from the BPS brigade but things could change. Something like Long Covid could change things. If Anthony Fauci says openly that Long Covid is a disaster and like ME then maybe someone at Wellcome might think the same.

The MRC made a specific effort to get something biomedical up and running and that panned out as an agreement that DecodeME was a good bet. It is now Wellcome's turn.

 

[Shadrach Loom]

I know that grants have been put in to Wellcome and turned down. People like Luis Nacul and Amok Bansal will have been trying Wellcome as well as other sources.

It makes sense to me to target Wellcome. Unlike the MRC, which has to appear scrupulously even-handed, being government funded, Wellcome has always been in a better position to pick target diseases as and when it chooses. It also has had a fairly regular turnover of directors since the days of Bridget Ogilvie. Wellcome is very much part of the in-crowd network and it will have been supplied with reviewer opinions from the BPS brigade but things could change. Something like Long Covid could change things. If Anthony Fauci says openly that Long Covid is a disaster and like ME then maybe someone at Wellcome might think the same.

The MRC made a specific effort to get something biomedical up and running and that panned out as an agreement that DecodeME was a good bet. It is now Wellcome's turn.

But they aren’t accountable to the public and have discretion to spend their loot as they wish, so surely the sensible approach is targeted engagement and relationship-building rather than mass public lobbying of a named individual.

 

[Jonathan Edwards]

But they aren’t accountable to the public and have discretion to spend their loot as they wish, so surely the sensible approach is targeted engagement and relationship-building rather than mass public lobbying of a named individual.

Is a named individual being lobbied?

I am not sure how you go about 'targeted engagement' or 'relationship-building' when there is nobody there in the system to do it. Relating to what? Wellcome staff have an infinite queue of people wanting to engage and build relations every day of the week. That will include people like Stephen Holgate lobbying for ME. Jumping up and down (metaphorically) in a public space seems to me just as likely to be productive.

 

[Shadrach Loom]

Is a named individual being lobbied?
.

One Alyson Fox. That’s the person to whom we are encouraged to address our demands.

Jumping up and down (metaphorically) in a public space seems to me just as likely to be productive.

Relieved to hear that the jumping need only be metaphorical, but if the likes of Holgate are regularly pleading our cause, then my worry is that attempts to shame Wellcome into action would be counter-productive.

 

[CRG]

Even noting that Nacul and Bansal were turned down, I still find the approach a bit of head twister - WT is a relatively open organisation offering £16bn in grants over the next decade with a nominal £1bn per defined scheme: Find a scheme with at least one scheme a reasonable fit for ME/CFS research:

"Wellcome Discovery Awards

This scheme provides funding for established researchers and teams from any discipline who want to pursue bold and creative research ideas to deliver significant shifts in understanding that could improve human life, health and wellbeing.
Duration of funding:

Usually 8 years, but may be less for some disciplines, and may only be longer if held on a part-time basis.
Scale of funding:

You should ask for the resources you need for your research programme – see the 'What we offer' section on this page. You will need to justify this in your application."

Is the argument that ME/CFS research projects should get a free pass when it comes to 'justification', or that WT should alter its financial planning for a £1.6bn annual spend to give something extra to ME/CFS, because 'that's fair' ? Or is the argument seriously that 'they've got £29bn - give us some of that" ? Maybe the accountants left a couple a £mil in petty cash ?

Lets hope the jumping up and down has worked - but I find it hard to reconcile the approach with the target, it just seems too mismatched.

In the end Welcome is only going to fund research in which it has confidence, it's only going to fund researchers it has confidence in, and its only going to fund projects that fit with its corporate ambition. Maybe WT is sham-able over ME/CFS neglect, though I don't see how it has any corporate responsibility but there have to be good projects to be funded, with researchers able to provide convincing applications which meet WT's corporate principles.

 

[It's M.E. Linda]

paywalled (?)
Demonstrators in London’s Parliament Square last week called for hundreds of millions of pounds missing from research into myalgic encephalomyelitis to be restored to the condition.

The campaigners, including Alex Chalk and many other MPs, illustrated ME’s connections to other …

https://www.bmj.com/content/379/bmj.o2548.full

I obtained a full pdf which my Braincell is absolutely refusing to transfer into the forum. The full BMJ article is much better than the heading (see thread title) implies:

“Demonstrators in London’s Parliament Square last week called for hundreds of millions of pounds missing from research into myalgic encephalomyelitis to be restored to the condition.

The campaigners, including Alex Chalk and many other MPs, illustrated ME’s connections to other chronic illnesses by linking themselves with red threads. The demonstration also heard from expert speakers, who discussed their research work and the intersection between ME and long covid.

One of the speakers, Douglas Kell, a professor at Liverpool University, said, “If adequate research funds had been invested in ME research in previous decades, as people with ME have asked for, we would have been in a much better position to help people with long covid.”

One of the event’s organisers, Denise Spreag of #MEAction UK, said, “We are asking all our supporters, people with ME, and people with other complex chronic conditions to start this campaign by lobbying the Wellcome Trust—which has approximately £29bn of funds—to commit significant funding to ME. It has been neglected, ignored, and stigmatised for far too long.”

Spreag said that studies had shown that up to 80% of cases of ME were associated with infection with viruses ranging from influenza and Epstein Barr (glandular fever) to Ebola.”

 

[Binkie4]

I seem to have got adrift of the Parliament Square demonstration. I would have asked my MP to go/ send a representative/ informed him of it happening.

I really seem to have been asleep aka dealing with medical appointments while this was being planned, happening and reported on but have a big gap in knowledge about this. Do we have Doug Kell's speech on here? I've just taken a quick look and haven't found it.

Is there a thread on lobbying the Wellcome Trust and what is happening here? Yes- there is . @Andy posted a link ( below) which I found. I haven't yet read it fully but it's helpful to know what the various strands of advocacy are pushing.

https://www.meaction.net/2022/09/04/samples-letters-emails-to-wellcome-trust/

edit: do we have any feedback on how this red thread campaign is going. The letter from MEAction proposing it was dated Sept 4th.

 

[Arnie Pye]

BMJ: Activists demand more funds for ME research

Couldn't the BMJ just have said "Patients" instead of "Activists"? The constant undermining of and digs at people with ME is really annoying.

 

[NelliePledge]

Activist/campaigner I have no problem with these words. I think this article is ok it makes clear the activists/campaigners include broad selection of MPs researchers.

 

[It's M.E. Linda]

do we have any feedback on how this red thread campaign is going. The letter from MEAction proposing it was dated Sept 4th.

There were some tweets posted by MEAction Network U.K. 25 October on the ‘red thread’ campaign.
I should imagine that their U.K. volunteers are recovering from organising the event (I don’t think they have many, and the vast majority have ME).