[UK] A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform

https://psp-me.co.uk/campaign-strategic-approach-mecfs-research/

The proposal (attached) can be supported via the 'Support the campaign' button on the above linked page.

 

Additional documents:

(i) Letter from ME researchers to funders
(ii) Letter to MRC and NIHR leadership
(iii) Strategic Research Funding - Parliamentary Briefing

 

I don’t have much context here. What are they actually proposing?

They could have done without the last part.

 

I think it’s one of those memes that people have seen repeated so many times that they just become an agreed upon truth no matter what the data says.

Like “25% of people with ME are housebound or bedbound.”

 

It is not clear to me what is actually being proposed. Which is why I didn't join in on the working group I guess. I am not clear what 'Hubs' are.

I have also had a conversation with someone who has signed who expressed the same uncertainties - if not rather more baldly.

I think events will overtake this. It may do no harm but we don't want white elephant millstone hanging around the necks of those actually making progress.

 

Great to see a joint campaign from various ME charities

 

@Adrian what stops the money from being wasted like what they did in the US for covid?

 

The letter from the 9 researchers is especially interesting, particularly around the challenges with MRC. Open criticism of reviews as "highly inappropriate" is unusual & the mention of a reviewer stating that there "is a universal treatment" for ME/CFS makes me wonder to what extent psychobehaviouralist reviewers are still trying to squelch research that doesn't conform to their worldview:

 

I understand why they want to mention LC, but saying that 50 % with LC also has ME/CFS is simply wrong. Those numbers are from reports from specialist clinics and they can’t be generalised. There really is no excuse for mistakes like that.

It would have been more then enough to say that the number of people with ME/CFS is increasing due to frequent covid infections.

 

That seems a key point. People working together. Both researchers and charities.

 

I don’t mind negative results and that’s not what I meant to imply by «wasted». In my mind, resources are «wasted» if they didn’t have a chance at producing results to begin with.

So my concern is: how do they intend to make sure that the money is spent on things that has the potential to provide us with a better understanding of ME/CFS?

 

The proposal looks to be requesting "strategic investment" funding for a research consortium to build a research platform structured like the one the MRC did recently fund for Mental health. https://www.mentalhealthplatform.ac.uk/
Structurally it's based on a hub and spoke model.
It makes sense to go with a structure they approve of.

Individual research centres would each be focussed on a PSP theme with a lead institution platform hosting a data repository and handling the much needed common research framework , environment, infrastructure and processes eg PPI etc as depicted in the organisational diagram.

While it's not a massively detailed paper, it's intended as a concept proposal not a final detailed requirement specification. It's job is to paint enough of a picture of the concept to proceed to the next stage where the details get thrashed out.

The concept that is there seems quite clear to me and process wise it doesn't make sense to specify every detail at a the very first preliminary proposal stage until there is a commitment to funding, as it would be wasted effort and things constantly change.

I find it very reassuring that all three of the lead charities are joined up and behind this and the team at decode are involved.

I think it is a tangible proposal that could be a very good solution to address the delivery plans extremely empty research chapter action list.

I see it as a positive proactive step forward by the charities and very much hope that the ME and LC community get behind it and it is effective in piling more pressure on the government to actually do something constructive to help us rather than just make empty platitudes.

 

My concern is that it sounds like its goal is creating and maintaining a bureaucracy. Politicians like that, since they can point to it as progress, even if there are no scientific advances. Some structure can be good, to prevent waste, but the wrong structure is waste in itself. Will the government use input from researchers who have made credible efforts to look for the mechanism of ME, or will they cherrypick researchers who will give input convenient for the bureaucrats?

 

Let’s be honest, the UK government spending review is coming up and this could be setting budgets for multiple years for many organisations including those that fund research. There’s also other events like the 10 year health plan and of course Delivery Plan for ME/CFS around the same time.

Look at the timing of this in that context. This is what effective lobbying groups do.

 

How much funding are you hoping / asking for?

 

Yes, it's good that they've decided to publically challenge funders on this.