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

For those not aware, Ed Davey is a carer for his son, John, who has “an undiagnosed neurological condition which means he can’t walk or talk.” (See: https://www.eddavey.org/about)

He discusses it at some length here: https://podcasts.apple.com/lt/podcast/sir-ed-davey/id1475913485?i=1000552640021

 

I've been wondering if e.g. Chris Ponting could use some more funding and with Sajid in post --- might be a good time to ask! Anyone in touch with Chris?

I'm no expert but DecodeME is about identifying the genetic basis - genes that increase risk and/or protect. I'm hoping that DecodeME will help to identify biomarkers but that's down the line.

 

I'm mindful that politics is not a subject for these forums but for those outside the UK (or those in it for whom the daily news is unbearable) who may not be aware, there is to be a no confidence vote on the UK Prime Minister by his Conservative Party colleagues Ballot win Boris Johnson doesn't mean political escape .

The relevance of this for PwME is that the position of Sajid Javid as Health Secretary is now less certain, and underlines the fragility of depending on a single politician to take ME/CFS forward in the UK. There should be no immediate change in Health Secretary and Javid could stay in place for another two years - but it is possible that there will be a change of Prime Minister which will in due course involve a reshuffle of Ministers which in turn may or may not see Javid move, or if the current Prime Minster survives the confidence vote he may feel a need for more urgent and/or extensive reshuffle than was previously the case, and that may or may not see Javid move. The is also the possibility that the UK will have a General Election sooner rather than later the outcome of which is not at all predicable.

The hope has to be that what Javid has set in motion can continue if he is moved elsewhere or there is a change in Government.

 

At least even if Said Javid moves one sooner rather than later at least he has stated his position very publicly and that is on the record. If subsequent ministers seek to change direction, Javid’s words can be cited and they hopefully would feel the need to have good evidence to defend their actions.

 

The problem I think is not that there would be a change of direction but that a new incumbent would simply not be interested, signaling to Civil Servants and NHS management that the priority for action on ME/CFS is reduced.

Just for the record - following yesterday's vote the Government stays intact for now but there's no let up in the febrile nature of current UK politics however it looks like Javid will be able to see through his ME/CFS initiative to the 'report back' phase, which should mean the hoped for changes get some solidity in the Health and Social Care Department.

 

Yes, this is their modus operandi. They can't win actual debates where people get to put their own thoughts across in response, so they rely on the least transparent methods they can -- where they have the most control over what is said.

I am pretty sure the RCs will be involved in the process. Politically, they would have to be. But we can hope that the right people are put in the room to speak honestly and forthrightly with them.

And it would be an awful irony, when *some* (and I stress that word) LC groups have intentionally chosen to distance themselves from ME. But, I think, in the end, any gain for us will help them (though not necessarily vice versa).

Also, I wouldn't put too much hope on the DHSC thing just yet. As others have said, politicians can change roles and new priorities arise. Politics is nothing if not fickle.

The one good thing is that there is cross-party support for the new GLs. So someone else might pick up the mantle if it comes to that.

This is definitely from CG53. The new GL suggests only discussing it with patients, if they need psychological support.

 

I think that long covid is being used as a trojan horse by the same individuals, as well as it obviously being a big prize in itself.

Two bites at the cherry so to speak by them realising that the ME guidelines were perhaps long gone they've been fighting tooth and nail to delay, delay and compromise it as far as possible ahead of the long covid one. Then demand more compromise at each stage of implementation.

People like Lynn Turner Stokes (rehab) suddenly appearing in feedback for ME guidelines because they've heard the LC one will need to be 'consistent' or in a similar vein made that obvious. If the centres starting to deliver for both ME and LC wasn't writing on the wall enough.

LC gives them more of a soapbox and if the numbers and money and political spotlight outshines ME still, and the prize is yet to be won (guidelines) and influences both. I think that is why it looks so different atm. I'd be highly surprised if LC decisions and set-ups aren't basically what ME patients end up with on the non-pharmaceutical side?

 

Hi, this may sound like a random question on this thread, but it’s not..

Out of interest, is anyone aware of any current practicing UK Neurologists who have shown genuine interest and understanding of ME?

I know there will be a long list of those who we wouldn’t suggest, and I want to keep it on subject, but any decent ones that folks are aware of, could you let me know, please?

Thanks

(ps mods, if you feel this post should sit somewhere else, please let me know - there is some method in my madness of posting here)

 

Short and unhelpful answer is "no".

The difficulty is not so much around "genuine interest and understanding of ME" but what a Neurologist (or any other specialist) is paid to do. If a specialist is not contracted to see ME/CFS patients then they will not be on a referral list and there would be no obvious route by which the GP gatekeeper could direct ME/CFS patients to them. Also not every specialist is involved in research, and their capacity to become involved in a research project will be limited by their contractual obligations.

So there's a chicken and egg problem - Neurologists only see ME/CFS patients in the absence of a defined referral route (CFS clinics etc), neurology can only offer exclusion of known conditions, which frustrates the Neurologists, there's no money for them to explore further and even those who are free to engage in research will see little value in ME/CFS as an area of research when there is so much else demanding the attention of neurology. I know there are many poor reports from patients on their contacts with Neurologist but there are structural problems, at least in the UK, why neurology has been dead ground for ME/CFS patients.

There may well be UK Neurologists who have a genuine interest and understanding of ME/CFS but will have only very limited opportunity to 'show' that. I'm aware of one neuro Consultant and Registrar team that was seeing ME/CFS patients 15+ years ago - the Registrar is no longer in the UK and the Consultant is now the head of a regional epilepsy unit.

 

The missing piece in new treatment guidelines and research priorities for ME/CFS

In the UK, more than 250,000 people have Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) [1], a devastating illness that is estimated to cost the British economy £3.3 billion per year [2]. Although ME/CFS has long been maligned, three recent publications herald a dramatic change in the way it will be understood and treated in the UK.

As Ingrid Torjesen explains in her article 'Health secretary pledges more ME/CFS research as he reveals that relative has condition', the new NICE Guideline for ME/CFS [1] encourages a shift away from psychological and behavioural treatments. Consistent with this, research priorities published last month [3] call for a focus on biological mechanisms, diagnostic tests, and the development of medical treatments. Finally, the recent All-Party Parliamentary Group (APPG) report [4] outlines clear expectations of, and support for, a transformation in the way ME/CFS is addressed in research, clinical practice, and social care.

Largely ignored in all three documents, however, are unpaid carers (known outside the UK as family carers or family caregivers). The vast majority of people with ME/CFS rely on their families for care and many of those families have been the driving force behind the changes to research and treatment that are now unfolding.

https://www.bmj.com/content/377/bmj.o1341/rr

To discuss this go to this thread:
Unpaid carers are the missing piece in treatment guidelines and research priorities for ME/CFS, 2022, O’Dwyer et al

 

Saul Berkovitz is a neurologist interested in ME/CFS, working at the Royal National Hospital of Integrated Medicine.

 

Thanks Jonathan, appreciate the reply.

 

Also at least one involved in the PSP process.

 

I think it's perhaps just a reflection that of the pwME who do have carers, they are unpaid friends and family, and may have to do an awful lot.

Then there's the issue of patients who are carers and face stigma and disbelief as a result of FII and the like.

I wouldn't focus too much on it. I think it's just to recognise that the impact goes beyond pwME. Also, it might be a pet peeve of someone involved in the DHSC process.

 

My parents are my carers without whom I would have been very much dead. But more than anything they just want a treatment for my disease. I can imagine it being a bigger problem for carers that aren't as well off as my parents though.

 

Was excited about this until I read his profile. Herbs and acupuncture. https://www.uclh.nhs.uk/our-services/find-consultant/dr-saul-berkovitz

 

Hm, it seems his field of expertise are allergies rather than neurology?

 

He is trained as a neurologist.
His interests in complementary medicine certainly make things complicated. Looking at the UCLH webpage I wonder if he has stopped doing the CFS clinic because it does not seem to be mentioned.