UK: Secretary of State for Health and Social Care met with ME/CFS researchers Nov 2021

Very much so, which is very heartening. The BPS eminence brigade's influence revolves around cosying up to the the influence brokers, and being distanced from them will make them mad as hell.

I like the original version. It tells the BPS brigade that their sham research is now discounted as not worthy of even being called research. They will be mad as hell about this also.

 

The Minister will get thousands of requests for meetings; to accept one it needs to be important. I wonder if those (particularly Conservatives) on the APPG(s), or others with influence, have highlighted concerns and this is the outcome ---- important to get this message across.

We need to get it translated into meaningful action.

EDIT - it might be a good time to get the wish list out e.g. @Jonathan Edwards has set out how MRC got a panel together (including Jonathan) to identify promising research areas. The outcome was the GWAS study (Chris Ponting). So that's an example of an ask - re-run that MRC think tank.
The other question is how to get the message across i.e. that this (X, Y, ---) is what the patient community want?
@Simon M

 

I think this was solely down to the DecodeME study - a bright shiny bauble of cutting edge research which is the kind of thing Javid would see as important, I doubt that ME/CFS itself was particularly of interest although there might have been some thought around distancing the SoS from the controversy of the Guideline delay. I wouldn't interpret this one off as a major change within the Department, more like the Queen coming to visit a School - it gives kudos by association but only fleetingly.

Equally the absence of any BPS presence, while it gives a nice schadenfreude hit for us, may only be circumstantial - they simply have no irons in the tech heavy research fires that excite politicians. It's a measure of how BPS star is falling but not that the BPS crowd has been consigned to the outer darkness; for example if the costs of Long Covid become too monstrous then BPS sponsored victim blaming may once again become politically useful.

Of course Javid's interest is a good thing but there is an element for us of a hostage to fortune - ME/CFS is politically important so long as it is the subject of big money research but that leaves us with two problems, first the money stream has to be kept going, which in turn depends on results, second actually helping patients may rely on a lot of mundane science slog which also needs funding. So best remember that politicians are often fickle, that their interest may be self serving and as individuals their presence may be short lived.

 

Maybe they should take up cooking. Mashing spuds instead of data.

 

I still think we should write out our letter to Santa ---- whatever we want done ---- a re-run of the MRC group which led to the GWAS study or whatever.

I hadn't realised that Javid was interested in this stuff--- the DecodeME study - a bright shiny bauble of cutting edge research which is the kind of thing Javid would see as important.

Yes, --politicians are often fickle --- I recall a funny story of how a Minister (now deceased) would set off in the chauffeur driven car, in the morning, with a number of speeches i.e. for the various invites --- it transpired that he couldn't be relied upon to read the right speech to the audience!

 

Yes, political motivations invariably loom large, which is why the eminence brigade have always had the upper hand until now, given it was effectively their NICE guideline they could always point to, as supporting low cost non-treatments for ME/CFS patients, non-entitlement to benefits, etc. All things to win favour with the power brokers. Small wonder they are so deeply p*ssed off at losing that leverage, and tried so very hard to prevent the new guideline being released.

Who cares what benefits the new guideline means for patients, when there are so many and so much personal interests at stake!

 

Ever since Harold Wilson's 'White Heat of Technology speech 60 years ago, bright & shiny has been a standard for positive imagery for ministers to associate themselves with, so Javid isn't special in that sense. Equally the standard view in Westminster is to avoid health controversies because there's rarely a win to be had, SOS for Health is pretty much seen as a poison chalice so any ambitious politico if stuck with the Health portfolio is going be very careful about their day to day image. Javid has twice sought leadership of his Party, so fair to say he is ambitious.

With the changes to UK industry over the six decades since Wilson's speech, Health Tech is now one of only a few sources of UK built "bright & shiny" and Javid has not been slow to associate himself with it - albeit in one case somewhat controversially.

Link Sajid Javid under pressure over AI shares after promoting NHS use of technology
https://www.independent.co.uk/news/uk/politics/sajid-javid-artificial-intelligence-nhs-b1960811.html

Link NHS to receive nearly £250m for tech to tackle record waiting list backlog
https://www.standard.co.uk/news/uk/...hen-powis-sajid-javid-government-b964891.html

Link Sajid Javid calls for the UK to ‘level up’ digital health inequalities
https://www.healthcareitnews.com/news/emea/sajid-javid-calls-uk-level-digital-health-inequalities

Link Using the power of technology to make the world a safer and healthier place
https://www.gov.uk/government/speec...to-make-the-world-a-safer-and-healthier-place

Of course Sajid Javid may have a specific interest in ME/CFS but I think we need to see some evidence of that overriding 'tech as image' before placing any hope for more than a passing interest from the current SoS.

 

Some more random thoughts-

The DecodeME study stands out as an example of how the system works effectively --- an expert group was formed, to identify promising research areas, and the outcome was the DecodeME study. So you have DecodeME (Chris Ponting) and (the recently rehabilitated) Action for ME (Sonya Chowdhury) in the Twitter picture --- virtue signalling ---- the system isn't broken.

I've no evidence that the debacle elsewhere, e.g. continuing to fund flawed studies which tell us nothing (PACE +++), contributed to this meeting/photo opportunity. However, if concerns were raised, e.g. via APPGs, then the Minister (from his view point) has provided a more +ve interpretation of what is going on.

 

Just noticed in this weeks news item* that Professor Karl Johan Tronstad, one of those who met Savid Javid, has publicly challenged the use of "type of escalating training method that is often referred to as GET after the English term "graded exercise therapy"."**

*Professor Karl Johan Tronstad has written an opinion piece for a news site about research. He explains why exercise is making ME patients deteriorate and why GET should not be used a treatment approach.
Opinion piece here (in Norwegian) Thread here

**
https://forskersonen.no/cellebiolog...l-at-trening-gjor-me-pasienter-sykere/1936411