UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

The short duration of post holding is a long standing feature of UK Government - The case for keeping ministers in post longer and it would be a mistake to overly invest expectation in the contribution of a single Health Secretary (for non UKers - Government hierarchy puts 'Secretary' above 'Minister').

The exigencies of the current political situation probably mean that Javid is in post until the next election, however although we know the final date by why which a General Election must be held - 24 January 2025, the Prime Minister can choose any date prior to that and the somewhat febrile state of UK politics may mean an election sooner rather than later. There is though the possibility that Javid will be in post for a further 2.5 years which would seem to bode well for ME/CFS standing in the Department of Health.

Continuity of support depends on two things - agreement across the political spectrum that key priorities will remain in place beyond any change in Parliamentary arithmetic, agreement within Government that key priorities cannot be disproportionately negatively affected by Treasury decisions.

Agreement across the political spectrum requires consistent effort and I think only ForwardME is in a position to provide that, however once it has become clear what substance there is to Javid's proposals, letters to the main political opposition Parties - Health and Treasury spokeswomen/men from individual orgs (including S4ME ?) asking them to commit to long term support of Javid's initiative would be appropriate.

The UK Civil Service (the permanent staff who make the Government work) is generally competent, impartial and not corrupt, given a clear political lead it will follow and stick to that course until told by Government to change it. The main vulnerability for service departments like Health is from the Treasury which holds the purse strings and can wreck anything at the stroke of a pen. Once there is a clear cost implication of what Javid is proposing, a public campaign to have broad Government support for the proposals, including from the Treasury, might help secure Health department commitment in the face of what are likely to be increased budget constraints in the run up to the election whenever that comes.

I don't doubt that Javid is sincere in his concern but it's important not to be seduced by a well constructed and highly polished political story only half of which is about health. The meaty half (everything about ME/CFS is 'proposals' so meatless) is the Health Secretary being 'dynamic', 'sympathetic', 'caring', 'a family man' etc - just the sort of stuff his PR team would recommend following some less than sympathetic revelations a few weeks ago. Politics can be like social media - "if you are not paying for the product, you are the product".

 

A counterpoint to the points CRG makes is that this statement means I can write to my MP (Kit Malthouse, current Minister of State for Crime and Policing) with some actual hope that it will be received with something other than either deafening silence or a meaningless brush off.

 

True, but what cheers me is that NICE had already decided to do the right thing, and they're one of the bodies that will actually drive this. Javid's intervention is really important, but it's the clinicians, researchers, and funding bodies who'll need to deliver. He's given the sled a good enough shove to get some real momentum going, which is what we needed.

 

Re-tweeted by Edzard Ernst:

Millions Missing Finland on Twitter: "Iso-Britannian terveysministeri ⁦@sajidjavid⁩: "ME-sairaudesta ei tiedetä tarpeeksi, ilman parempaa ymmärtämystä potilaat jäävät paitsi elintärkeästä hoidosta ja tuesta. Olen päättänyt, että näytämme tietä tällä alalla.” ⁦@STM_Uutiset⁩ https://t.co/L6UycVJjRz

Machine translate by deepl:

"UK Health Minister @sajidjavid: 'Not enough is known about ME, without better understanding patients will miss out on vital care and support. I am determined that we lead the way in this area."

(Again apologies for just popping in /only saw Ernst latest Tweets now so no idea whether he tweeted another than the Finnish language version...)

 

Radical change should naturally exclude those who built the thing that needs to be radically changed. If it's serious, they will be banned, have nothing to contribute anyway.

 

Followed your suggestion and also tagged in Frances Ryan so

 

Looks like there was some improvement but it still says
"The [NICE] advice urged doctors to stop offering patients graded exercise therapy (GET).

The controversial therapy — which charities say suggest it's psychological — involves doing increasingly more exercise to build-up a tolerance for carrying out physical activity.

Health chiefs also advised against the routine use of cognitive behavioural therapy (CBT) — commonly used to treat anxiety and depression. "

 

If it was deliberate then the intention may be to neon light "pharmacological" - the subtext being "that's where we need research". Notable numbers inflation - 250k top end estimate for the UK becomes an absolute, and the long accepted 17million globally becomes 30m - surely a nice round 50 million can't be far off ?

 

This is a bit picky but…

I wish they had said, for “for too long people with ME have struggled to get their disease appropriately researched or even acknowledged.”

I would have preferred them to say “Yet there are no diagnostic tests and no effective treatments.” Saying “no effective pharmaceutical treatment” implies there may be some effective non-pharmaceutical treatments.

Sajid Javid’s statement was better when he said: “…there are currently no known cures or treatments for the condition...” (https://questions-statements.parliament.uk/written-statements/detail/2022-05-12/hlws23)

Having said that, I’m pleased the letter was published and I’m very grateful for all the positive work Sonya has done recently.

[Crossed with @Trish]

 

I suspect 'the thing' is that headway on things that help, and I mean the PSP already licensed meds stuff rather than 'management strategies' that involve asking others to be considerate, needs to come pretty quickly. Along with sorting out the info on the illness.

It's slowly reducing the gap between reality level of illness and perception level (at the moment people fill expectation-gap with all sorts for their own reasons) and having a few non-fictional 'can-dos' for the medics and patients would transform the conversation.

I like the idea of the 'Stage 1-4 model' for describing it the more I think, for numerous good reasons. The 'it can get worse' isn't defined well currently. And remedying myths or gaps on recovery/worsening and what rest/over-exertion can consist of and its consequences so that this message is taken seriously (stomp on the trying to sneak in stress or anxious as replacements there) given its the counterintuitive to current edicts causing cart before horse issues (which is why I have big issues with BACME style 'holistic treatments' tweaks).

There are a few prongs to the contempt of human nature, and how far and deep it spreads. I think one is that people have short shrift for anything past a very short window/chronic (just fix it and stop going on).

It has also been minimised. I think they mightn't think 'the illness' psychosomatic but worse disrespect the person for not recovering from and getting on with it because of the 'staging/severity' issue ie being 'too ill/useless for what they expect'.

And yes the push of 'holistic' (I hate that term, another hidden snide used for 'over-anxious' currently) - because medicine has been told where that gap exists 'the mind' accounts for. It's being fed by the bucket in workplaces that send overworked people to yoga etc. Hence I'm no fan of the BACME style clinics replacing GET with 'holistic' bringing in anxiety instead of exertion (and functional support) type ideas to muddy waters.

 

That’s a good letter and a helpful one too.

I think Stephen Holgate created the CMRC with the best intentions, but, for a while , he didn’t always listen to the wisest voices.

He refers to a transformation in 2018. That was when Esther Crawley stepped down as deputy chair and was replaced by Chris Ponting. It coincided with a big shift in the way they behaved (and I suspect there was a lot of work in the background by many people in the run up to this). https://mecfsresearchreview.me/2018/03/27/republished-the-cmrc-embraces-the-biomedical/The CMRC embraces the biomedical – ME/CFS Research Review

ADDED I gather that Stephen Holgate played a critical role in winning funding for DecodeME.

 

And yet he also accepted that a change of approach within the CMRC was needed (i.e. moving away from the BPS researchers such as Crawley) and he played a large part in ensuring that DecodeME was funded. In the few interactions I've had with him he has only ever been welcoming to me, and given my connection with such a hotbed of patient militancy as this forum i doubt I would have even met him if he still supported that view.

Cross posted with Simon.

 

It’s encouraging if Sir Stephen is now on the right side, and I’m grateful to him if he has played a significant role in moving things forward. I also appreciate that he may have created the CMRC with the best intentions, but the fact is that he made some serious errors of judgement. The letter he co-signed to the Independent in 2012 praising SW’s “pioneering research” was a hammer blow to many patients, as was his reliance on SW’s advice when setting up the CMRC. (See also: https://www.researchgate.net/public...igue_syndrome_Understanding_a_complex_illness).

If he now agrees with Javid that there are no treatments for ME/CFS, then he is effectively admitting that he was wrong. Whatever positive influence he is now having, I hope he will have the courage and humility to acknowledge his mistakes and apologise. In my view that would not only help to heal some wounds but also to accelerate progress. I for one would be pleased to forgive him.

 

Wessely's reply when Holgate asked him for advice on the appointees to the CMRC:

Simon Wessely replied “First of all, it looks very good...... can’t see many ommissions (sic).
I would probably sprinkle one or two scientists/researchers not particularly connected with CFS into the mix myself.
Experimental psychologist perhaps, joe, do you know one?....” Simon Wessely’s suggested researchers were redacted.
Stephen Holgate replied “Wow! This is terrific, Simon – thanks so much. I will add your suggested names. Kindest regards, Stephen”


When someone figuratively speaking kicks me in the bollocks I don't forgive them because they haven't kicked me in the bollocks recently.

 

I've had a quick scan through the second link but just read the first few comments from him. They seem OK in context - could you point me to the bits where there are issues?