Funding of ME/CFS research in the UK

That’s perfect. Hard-hitting and digestible.

I’ve been thinking a lot recently about political messaging, and the how the key messages we want to get across could be framed to suit specific narratives.

Most patient advocacy is pro-NHS and anti-austerity by default, so perhaps it misses the opportunity to offer a bone to chew on for MPs who like to fulminate against producer capture and vested public sector interests. The “CBT GET Scandal” would appeal to them as a story of squandered money, malfeasance at the hands of privileged experts, and so on. The narrative could be better tailored to that audience, and communicated more directly and individually.

And there are other ways the story could be spun for the different political tribes in Westminster. There are probably six or seven to consider. The workload would be manageable. All it takes is to decide what the really important messages are (ME Action nails them, I think) and then a workshopping process could tailor each of them to suit the simple, naive stories which cut through to each tribe’s target voters.

After that, it’s just a matter of sorting the 900 or so plausible contenders in the next GE by the most appropriate message, and matching them to constituents from the ME patient community.

 

I’m just thinking about what the community could do. I’d like to be more involved, but I’m not planning to do anything solo.

The question about how to balance targeted narratives with APPG efforts, which by their nature are consensual, is an interesting one. I’m not a public affairs person, but I’m adjacent enough to that area to find out. I think that it’s manageable, though, and when narratives achieve genuine cut-through they tend to become more politically neutral, politicians being essentially weathercocks.

 

No point in 1) in my seat, hence the underlying idea. I’ve pursued 2) with a note to ME Action.

 

That's a very efficient way of targeting effort - there's no point in contacting candidates in a GE who are a) never going to win, or b) represent a Party that will have no impact in the forthcoming Parliament. Personalising contact is important, a letter needs to come from someone who is on the electoral register in the specific constituency, and should to convey (in the friendliest way) that the constituent will be watching the performance of the elected MP, and will be following up their concerns re: ME/CFS after the election.

When crafting a letter to a candidate there's some etiquette to take on board. At the point the election is called everyone who intends to stand, including any current MPs, becomes immediately a 'prospective parliamentary candidate' (PPC), once Parliament is suspended and the formal campaign begins, they become an 'official candidate'.

Prior to the formal campaign - usually just four or five weeks in the run up to election day, most new candidates will have already been adopted as a 'prospective parliamentary candidate' several months or even a year or more in advance, and as a PPC will have a contact address put up on social media. Once the formal campaign begins contact will be via an official campaign office with a named agent - this address may not become available until the last minute, leaving only a short time to get a letter in - and at a time when the candidate is already into the hectic pace of campaigning.

It's much more likely a letter will be read by a new candidate at the PPC stage than it is in the melee of the formal campaign where the chances are it will be dealt with by a campaign team member, so following local Parties on social media to watch out for announcements on who PPCs are is useful, and in terms of communicating, engaging early is probably the best strategy.

Although the date for the next UK election is May 2024, there are changes going through Parliament that may make that date more uncertain and a General Election may far more imminent. Also there are plans to reduce the number of Constituencies from 650 to 600 which will impact on candidate selection, it's not clear whether these changes will happen in the next 26 months. Basically it's not to early to start preparing.

 

They listed the Pariante, Goldsmith and Risdale awards, what's missing is the direct support via the NIHR Specialist Biomedical Research Centre, but the apportionment of salary and oncosts for Chalder, Pariante and Risdale(?) directly to ME/CFS research is difficult to account for and probably would have required an FOI, I'd guess that even if the report authors were aware of the Biomed Centre funding set up, that they would have considered an FOI part of their brief. And in any case the Biomed Centre may simply not keep data on how internal establishment costs are apportioned by illness type and would reasonably cite the disproportionate costs of having to collect that data.

In terms of the overall argument, not including the Biomed Centre costs didn't in any way undermine the central argument of the report - that ME/CFS is woefully underfunded in comparison to other diseases which was the important thing.

 

Difference between Briefing Paper and Briefing Note - the ideal for the latter = single page A4 at 14point type face. In this case ME/CFS is peripheral to the central issue which is "use of public funds: fairness of distribution and effective use thereof, plus a couple of add ons: gender discrimination and biased decision making in a public body" - it's always easier to tell a story the listener wants to hear than the one we want tell especially when ours is so damn long.

 

@CRG and I have been attempting to raise the issue of funding for low/very low quality research*.

I've also written to the APPGs i.e. asking them to challenge Government funding for low/very low quality research - typically unblinded studies with subjective outcome criteria (questionnaires) - there are a few studies which use objective outcome criteria (actimetry - FitBit type devices).

I'm also involved in EMEC** this group was formed with the assistance of ME Action - in particular Ben HsuBorger. There are a number of ME Action UK groups.

I think groups are the way to go and your skill set exemplifies why (you understand how to lobby); however, I think groups can be frustrating (agreeing actions etc.). If it doesn't work out then possibly move on to another one.

You'll find a lot of excellent analysis here - the median (or whatever you want to call it) seems to be very high. Probably shouldn't have put that in!

*https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/page-3#post-409155

**https://europeanmecoalition.com/

 

I'd be inclined to act now. Sajid Javid Secretary of State for Health and Social Care* has been making the right noises** "We need to do more on ME/Chronic Fatigue Syndrome. There’s been a real lack of research over many years".

Sajid also met with Professor Chris Ponting [Genetic Study "GWAS" - funded by MRC(?)] - seems to be by far the best funding decision made in the UK & possibly anywhere [EDIT - Jonathan was part of the MRC expert group that identified GWAS as a promising area]. So he may be picking up the cues that the BPS bunch are a risk and also supporting high quality research.

Also, MPs in post now will want to make an impact and opposing funding for low/very low quality research is (as I think you've pointed out) an easy way to make an impact.

*https://www.s4me.info/threads/uk-house-of-lords-house-of-commons-questions.707/page-26#post-400745
*https://www.s4me.info/threads/uk-house-of-lords-house-of-commons-questions.707/page-26#post-395490

 

This* was pointed out to me earlier - I couldn't access the Times article [subscription required]. Given Sajid's personal interest it seems a good time to raise the community's concerns. E.g. that poor quality research, i.e. unblinded and with subjective outcome criteria, shouldn't be funded.

I also recall that Chalder has been making some noises about the quality of research needing to improve - possibly Sajid's responsible for Chalder suddenly seeing the light (partially anyway) --- also suggests that Sajid is someone to work constructively with - your original instinct!

@CRG

*"Sajid Javid has a family member with ME and this was the reason for his actions:

https://www.thetimes.co.uk/article/relatives-suffering-triggered-sajid-javids-me-crusade-6th2nv6wl


“Sajid Javid’s radical new approach to the debilitating condition myalgic encephalomyelitis was shaped by his experience with a family member.

The health secretary told The Times yesterday that a close relative suffered with ME, which affects at least 250,000 people in the UK and for which there is no diagnostic test, universally effective treatments or cure.”

AND

He also replied to Sean O’Neill of The Times on Twitter who lost his daughter because of ME:

https://twitter.com/user/status/1525425034751266818

 

We have a thread on Javid's announcement here, UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

 

Graham talks about a spreadsheet and database in this old post, does anybody know if copies of these are held anywhere else? Not that I intend using them but thought I'd ask in case somebody could have a use for them.