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

@CRG's comment came up just after I pressed send, but I was just writing to Dr Nina Muirhead about another matter and took the opportunity to enquire if this is something they could consider.

 

Hope 4 ME & Fibro Northern Ireland report on Facebook

"Dr. William Weir, Medical Advisor to Hope 4 ME & Fibro Northern Ireland has accepted special invitation from Sajid Javid, U.K. Secretary of State for Health & Social Care, to be a vital member of new ‘Rethinking M.E.’ Westminster Parliamentary Group."

https://www.facebook.com/Hope4MEFib...CBgDjr5EC1ec158xboi7G52bP34YjUJs3LPSAxAj4GGhl

 

It's a matter of how it's done. If DfME have good journalistic contacts, there's no harm in them saying "look at this Parliament event, shame it was buried, any chance of a resurrection ?" That's very different from doing a formal complaint and simply p******g everyone in the news room who'll never talk to you again except under duress.

 

I have been off the forum for a few days, but I can say there was press lined up for Wednesday, but the Partygate stuff scuppered some of that.

 

Full text:

Patients with myalgic encephalomyelitis (ME) can expect to see more research and support for the condition, which “has been neglected for far too long,” England’s health and social care secretary has said.

Speaking at the launch of a report by the All Party Parliamentary Group on Myalgic Encephalomyelitis on 25 May,1Sajid Javid revealed that one of his own relatives had had her life severely affected by ME, and he pledged to tackle the lack of research on the condition. He will co-chair a round table of international experts next month to help set this research strategy.2

A lack of understanding about the condition and the absence of a proper test to diagnose it meant that patients with ME, including his relative, had been let down by the NHS, he said.

Within weeks his relative had gone from being an active 12 year old—interested in sports, captain of her school netball team, and doing well academically—to one who struggled with fatigue and low energy. Doctors were unable to explain her illness or offer any treatment and had diagnosed ME.

“I just really felt like the clinicians weren’t doing their job—well, certainly not well enough—because it felt like it was like the default option,” said Javid. “When you just can’t really find out what the true cause is, let’s just call it ME/CFS [chronic fatigue syndrome]—that’s a sort of convenient bucket—and let’s just leave that child in that bucket.”

Medical shift
Unable to cope with the demands of a full school day, his relative found that her schoolwork suffered. She was held back a year and, now aged 18, has been detached from her friendship group, who have moved on to university and the workplace.

“There’s really no end in sight to this, and that’s the most frustrating and most worrying thing of all, for her and for her parents,” said Javid—“and that can’t be right.”

Although he told patients attending the launch that he could not “promise miracles” in finding a treatment, he pledged a new cross government approach to supporting people with ME, which would encompass not only healthcare provision but also education, work and pensions, and local government.

The all party parliamentary group’s report, Rethinking ME,1 says that the research focus on long covid provides an opportunity to develop a better understanding of causes and treatments for other conditions that may develop post-virally, including ME.

Collaborative research projects could “finally put an end to the narrative that these conditions are psychological in nature,” it says, adding that long covid research funded by the National Institute for Health Research should include groups of patients with ME as comparators.

The report also highlights last year’s publication of the National Institute for Health and Care Excellence’s clinical guideline on ME/CFS3 as “a turning point” that “sets the precedent for a medical shift away from a problematic behavioural or psychological understanding of ME and towards a more holistic biomedical or physiological understanding.” The report’s primary recommendation is “to ensure that the new guideline is swiftly implemented in full by relevant health services.”

Health service commissioners should also ensure cooperation between ME and long covid clinics to maximise patient benefit, the report advises.

References

1. ↵
   All Party Parliamentary Group on Myalgic Encephalomyelitis. Rethinking ME. May 2022. https://appgme.co.uk/wp-content/uploads/2022/05/Rethinking-ME-a-report-by-the-APPG-on-ME-2022.pdf
   
   
2. ↵
   1. Torjesen I
   . NICE sets out steps NHS must take to implement ME/CFS guidelines. BMJ2022;3771221.doi:10.1136/bmj.o1221 pmid:35577360
   FREE Full TextGoogle Scholar
3. ↵
   1. Torjesen I
   . ME/CFS: Exercise goals should be set by patients and not driven by treatment plan, says NICE. BMJ2021;375:n2643. doi:10.1136/bmj.n2643 pmid:34716175
   FREE Full TextGoogle Scholar

 

Hopefully things get better for her soon.

On a purely political note, there's some indication of a relatively high rate of natural recovery for teenagers, so possibly a chance of recovery coinciding with some random treatment being tried, and this potentially influencing Javid's views.

 

Have you been invited @Jonathan Edwards? If not, would you be receptive to an invitation?

Do we know anything about how the expert selection process for Javid’s Group works? Does anyone know if there is a way for S4ME to make any suggestions?

IMO the NICE guideline carries more weight because the committee included people with a range of views, who eventually came to a consensus (despite 3 people resigning after singing up to the draft). It might be better to have at least some BPS people included so that their arguments can be heard openly, challenged and exposed, instead of having them lobbying privately and then complaining that the action plan is all wrong because they were excluded from the process.

I also think it’s important to include non-BPS experts who will be candid about how little we actually know. Too often people who recognise the problems with BPS research make the mistake of overstating what is known on the biomedical side, and it would be concerning if Javid was misled about that too.

 

Replying to both questions, no, I don't. To be honest, my assumption is that the question of who is to be invited has probably been decided on already.

 

Agree, the whole thing has intrigued me for a while about the BBC. I think in the more general too it is a worthy discussion to have (with this as an example within that) - but probably as a new thread and maybe a members only one as well/at first if only because it gives muggy brains the ability to back and forth to formulate how we might describe it/what is going on etc.

It's always been an unusual entity in a few ways, is under the cosh for certain things etc. There may be a 'way' things need to be 'gone about' etc. with them - I don't know, but it would be good to pool member's ideas, experiences/knowledge etc?

 

Yes and Javid telling the story we saw the 2min clip of I wondered was whether him realising that there needed to be 'more' around just 'we launch the report'. It's difficult to know because I didn't see the rest and we'd all be sensitive to privacy needs of someone etc

 

It might be better to ask journalists to cover the roundtable session.

 

And, speaking mainly only from recent few years noticing it particularly, even with MPs' interest there is always a 'big general news' that most see as 'vital' and 'more important', as if we are supposed to understand (rather than them realising nothing will ever be done if that is how they categorise it).

However, for most illnesses that will be the situation and as people note there are health and science editors and I don't know whether any of the 'news' was in those areas ie what the excuse for it not still being covered from that 'specialist topic' angle is. It may be - and this is me trying to think productively rather than being apologist (ie its an open question) - that working with to better understand what the issue is in case tweaks and better knowledge of how things work could transform interest that if someone is happy to chat there is more to be gained.

 

I’m repeating myself here but it would concern me if not enough emphasis was put on the need for a huge increase in the quantity and quality of research to develop diagnostic tests and effective treatments. I would despair if services were reformed to implement the GL while high-quality research continued to be neglected.

 

To me this is a very complex idea/question/concept that also probably could do with its own discussion at this stage. Really focusing on where we are now and trying to unbundle the 'maths' of it to see if that really is true/the case or we've just been conditioned by their own PR etc. I'd like this one to have its own focused (ie on this point in time, and not in 'the general' and drifting into covering old ground) thread at some point soon?

 

I have a concern that who is located in clinics directly influences this also. If you have a load of people offering CBT on the sly and just therapists then you don't have the on-the-ground training up and insight for clinicians and scientists to actually meet those with ME.

And of course if those sorts of things are all that is offered then we have the same issue of it getting minimised because it's the vicious circle of being more con than pro/accessibility for the most severe. And I think understanding that spectrum and whether/how people move up and down it is important. It's also important for recruitment and trust is going to be a big part of that.

Even worse the risk is that as a supply-led service that is so useless to those actually with ME they end up bums on seats with 'fatigue' or other non-ME again as the fatigue clinics did, so they think when they talk about their experience that they have knowledge when they are talking about a different cohort.

How can there be a wellspring of research if for some reason the very areas that this is needed in are being kept out of clinics/meeting patients and only GPs and physios maybe OTs are in touch. How can scientists or clinicians come up with useful theories without being able to see patients in an organised way? How do methodologies change to be appropriate etc (like Physios for ME attempts at exertion research) without attracting in those who are curious and observational.

This is where case studies of historical make-up and throughput of how knowledge developed for other conditions would be useful - and whether those clinics were a big driver of it.

 

I don't believe this would be good. The BPS people would probably avoid open debate and conflict and instead misrepresent their own work and views, only to then later launch an attack in the press to try and force what they want.

They are totally untrustworthy and unable to enter into relationships that are based on trust and honesty. I would get censored for calling it what it is but it doesn't change the clear pattern of behaviour.

Their presence is likely to be an obstacle. If they are excluded, they have no one but themselves to blame for it and need to learn to live with the consequences of their untrustworthy conduct.

 

No, but I would be receptive to an invitation.
I agree that a range of views would be useful. I worry that those who over-egg the biomedical evidence will drag the process off. in the wrong direction - like allowing off-label drug usage etc.

I doubt that would help. Nobody else thinks that they have anything to offer. They have had their chance to address ME/CFS and shown that they do not have the necessary skills.

 

The BPS gang has always presented their position in an absolute non-negotiable way: only psychology is allowed (let's spare the lie where they pretend otherwise, it's completely insincere). They are the only ones who only allow their own research as valid. They are the ones with an extremist position, and they they naturally excluded themselves by adopting militant, hostile, behavior towards us and science. All projected on us, of course.

The BPS research has been going on for 3 decades. Of all the things I hate in this debate it's this being completely misrepresented, the hubris of demanding that they should be allowed to continue "researching" what they have been doing for 3 decades. Their time is done, there is nothing else to research with their approach, so much that everything they've done in the past decade has already been done dozens of times, sometimes hundreds.

They took a radical position because they had the power to force it. That painted them in the extremist corner. They can stew in there, it's not as if they can't keep doing everything as is, just with a lot less funding. It literally makes no difference, they don't innovate, don't use technology (an interactive pamphlet is not technology, just a different medium) and they don't scale up because it destroys their ability to lie, none of their work can stand to scrutiny, that's why they only do small studies anymore, PACE taught them there is no benefit to it.

So literally they can't even use more funding because the entire premise of their work doesn't allow it: they can't lie about it if the effort is large enough to be rigorous and scientific. So they can keep doing their small useless studies over and over for decades, it's clear that no one cares what they do with their budgets, has any expectations beyond an endless cycle of identical pseudoresearch.

 

The NHS page about ME still has CBT top of the list of treatments !

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

they have a lot to do…