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

BMJ tweet promoting the article.

 

An obvious concern is that they are 'all roads lead to' either because they are closed-minded on treatment options and/or have very few that they just adapt the narrative to fit the condition to it being useful for, rather than the other way around of observation--> ideas of what would help.

I think we also need to note that BPS is NOT psychology (quite the opposite actually, even if they try and use the 'halo effect' of another area they are not them in methodology, approach or open-mindedness).

So having psychosomatic sewn into discussions would end up in negotiation tactics where purely because of some stupid idea of 'share and compromise' instead of collaborate to work out a package that is correct, effectively stymies good psychologists access - because you end up with the medics saying 'OK you can have that bit' to be seen to be fair. Which is nonsense of course.

Why would one hogging niche ideology get automatically given more space at a table that all of the other schools of psychology - would it not be appropriate for us to look at all the schools and say they get 1/10th representation within that on the psychology side?

So many questions that need to be tackled on this type of question quite specifically. It does need some direct discussion I think, given how a false framing tends to occur it would be useful for us to take a moment and stand back and think 'what is the objective frame' here so that we can at least even cite 'what is fair, even, or balance' if they try and make claims 'in the name of' those arguments.

 

I wonder if the UK is heading towards a situation where LC ends up being neglected (because acknowledging its full extent is seen as too costly), and ME finally gets some recognition as serious disabling illness?

 

I have thought that ME/CFS might (at last) be getting some helpful/informed attention - thanks in no small part to Savid Javid --- I've been thinking of asking my MP to ask a Parliamentary Question - I seem to recall something about a quality in Science Research Government body (or some such) recently appearing (courtesy of Savid?) ---- so maybe welcoming Savid's informed approach and asking that action is taken to ensure that Government funded research contains objective controls. I haven't read Savid's speech - so maybe we're way past that stage.

There are folks much better placed to comment but I think it's interesting that Nath is saying that a lot of Long Covid looks like ME/CFS, so there may be an opportunity for ME/CFS to piggy back/access funding via Long Covid.

For all that, I'm concerned that those with Long Covid will be neglected in terms of research, treatments [EDIT - benefits]++++

 

There was a picture recently (on social media/Facebook?) of Javid and the Chris Ponting et al (funding for DecodeME/GWAS stands out as an extremely rare +ve decision). I've a feeling the Crawley's +++ might not be on Javid's invite list ---- about time.

 

Just checked Hansard (official record of Parliament - in this case the Commons - 12th May) and it's there - search the "Whole Day" PDF for (EDIT) "Sajid"!

Haven't figured out how to get Sean O'Neill's article about his daughter - in case anyone has a suggestion (I scan subscribe & unsubscribe though).

 

When you have a Minister who cares about something (it's personal) it would be an extremely unwise official who tried to derail that ---- want a transfer/early retirement/or reshuffled to somewhere unattractive --- well derail something a Minister (personally) wants done and these (normally unattractive) options could very well be available/imposed!

[EDIT] But yes, danger is someone who doesn't care will be the new Minister - normal service!

 

"If you have mild or moderate ME/CFS, you should be offered cognitive behavioural therapy (CBT)."

where in the new guidelines does it say this!?

I thought it was available for those who want it; ie request it.

Is this a way of keeping ME under LTCs/MUS in IAPT?

 

If Mr Javid and Co are serious about shaking things up this looks like the place to start!
It seems to date from just after the NICE announcement?

 

If anyone wants the Sean O'Neill article then PM me [someone provided me with a link].

 

It is possible to 'Register' with the Times to access 2 full articles a week for free.

I can't remember how I did it, I think I clicked on 'subscribe' and there was an option to register by just giving your email address.

Note, a friend was registered to get the 2 free articles a week, then later subscribed for a few months, but when she unsubscribed she couldn't get back in to just register for the 2 free articles.

 

‘Doctors need to start believing us’: This is what ME patients say Sajid Javid needs to change

"ME patients are campaigning for their voices to be heard after the health secretary said treatment of the illness would be changing"

https://inews.co.uk/inews-lifestyle/me-patients-sajid-javid-needs-to-change-1655018

 

Merged thread

‘Doctors need to start believing us’: This is what ME patients say Sajid Javid needs to change

https://inews.co.uk/inews-lifestyle/me-patients-sajid-javid-needs-to-change-1655018

 

Yes, I just looked it up on PressReader (which I access for free online with my county library membership). It was in the Daily Mail on 24/05/22 by GP Dr Martin Scurr:

Spoiler: Large image of Daily Mail article

The same edition also had an article on Long Covid by John Naish, warning against visiting quacks who claim they can cure it (but sadly no mention of Chalder et al):

Spoiler: Large image of another Daily Mail article

This is the end of the article, with a sensible quote from David Strain:

Shame the article doesn’t mention ME/CFS but good otherwise.

 

My bolding.

I'm not sure there is much evidence for any of this, as stated, and I've not heard any for the bit I bolded, in fact this is the first I am hearing about it - I would have thought that, if it was true, then it could be used to easily screen out those who definitely didn't have smaller adrenal glands as definitely not having ME - but I'm fairly sure it's total and absolute BS.

So not a surprise to find it in the DM.



Subsequent discussion on a study of adrenal glands has been moved here:
Small adrenal glands in chronic fatigue syndrome: a preliminary computer tomography study, 1999, Scott et al

 

I have posted this here because it relates to Sajid Javid's announcement but @CRG has posted some interesting details on https://www.s4me.info/threads/medical-research-council-funding-to-2025.27917/#post-421639

I have been in contact with my MP over the last few months with concerns over ME funding and he has been in touch with Lord Kamall. He has sent me the response he's received from Lord Kamall dated 9th May just before he posted Sajid Javid's statement on 12th May.


The Rt Hon Sir Edward Davey MP
By email to: edward.davey.mp@parliament.uk

9 May 2022

Dear Sir Edward,

Thank you for your further correspondence of 8 April on behalf of your constituents xxxxxxxxxxxxxxxxxx about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) research funding.

I am grateful to you for raising your constituents’ continuing concerns.

The Government funds research into ME/CFS through the National Institute for Health Research (NIHR) and the Medical Research Council (MRC) through UK Research Innovation. The NIHR and the MRC both welcome high-quality applications for research into all aspects of ME/CFS. It is not usual practice for the NIHR and MRC to ring-fence funds for particular topics or conditions. However, in the case of ME/CFS, the MRC has offered fellowship grants since 2003. Applications are currently encouraged that have a focus on the underpinning mechanisms of ME/CFS in adults, children and young people, with priority areas including immune dysregulation, pain, improved sub-phenotyping, and stratification of ME/CFS. In total, the Government has funded £2.4million of research into ME/CFS in the last three financial years. ( my bolding)

The Government does recognise that ME/CFS is an under-researched condition. In 2020, the NIHR and MRC came together to fund the world’s largest genome-wide association study on ME/CFS. The £3.2m study, DecodeME, will analyse samples from 20,000 people diagnosed with ME/CFS prior to the pandemic to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. It will also investigate an additional 5,000 people diagnosed since 2020, most likely following infection with COVID-19. DecodeME is a partnership between biomedical scientists at the University of Edinburgh, ME/CFS charities, and people with lived experience of ME/CFS. It is hoped that the outcomes of this study will aid the development of diagnostic tests and targeted treatments.

The NIHR, MRC and the Chief Scientist Office of the Scottish Government have also funded the charity Action for ME, to undertake a Priority Setting Partnership through the James Lind Alliance to set out the top ten research priorities. This work is due to be published shortly.

In regard to your constituents’ concerns about research into long COVID, COVID-19 is a new disease and therefore it is not yet clear what the physical, neurological, psychological and rehabilitation needs will be for those experiencing the long-term effects of the virus. Just as the NHS rapidly provided specialist care for acutely ill COVID-19 patients at the start of the pandemic, it is now responding sensitively and effectively to long COVID.

In October 2020, NHS England and NHS Improvement (NHSE&I) announced £10million to support its five-point plan for supporting people with long COVID. In April 2021, a further £24million of funding was announced to ensure the continued running of long-COVID clinics and to open additional services. NHSE&I has published guidance to help local healthcare services set up these clinics, and there are now 90 specialist clinics operating in England.

On 15 June 2021, NHSE&I published a new ten-point plan and announced an additional £100million expansion of care for patients with long COVID. This will increase existing long-COVID treatment and rehabilitation services, enhance the management of long COVID in general practice services and establish 14 paediatric hubs to coordinate care for children and young people.

I hope this reply is helpful.

LORD KAMALL


The information on long covid seems to be about funding of serviceS not research.

I'm not familiar with the fellowship grants which are encouraging what sounds like biomedical research??? ? The £2.4 million in the last 3 years - anyone know what?

" The Government does recognised that ME is an under researched condition". - well we need something doing about that but the recognition is important. When will we get substantial increases?

A lot of hope is lying on Decode ME. Is it funded well enough develop diagnostic tests and treatments.?

In. https://www.s4me.info/threads/medical-research-council-funding-to-2025.27917/ there is more discussion of funding.

 

Great work on getting Ed Davey to write to Kamal - it's important that both Kamal and Javid are the focus of continuing polite questioning -it's quite possible that Kamal would be in post longer than Javid.

Re: MRC Fellowship Grants - I can't locate the figures but my recollection is that post 2011 there were two grants where ME/CFS was mentioned. Again memory failure/can't locate the data but I think both were for the kind of work that e.g Carmine Pariante does - so on the edge of psych/bio but not outright BPS.

The £2.4 million is (I think) the MRC share of the DecdodeME funding - the balance of the £3.2mn being made up by the NIHR. Very unlikely that £3.2 would include work on tests, treatments etc, and given the kind of study it is there wouldn't be any way to even cost what might be needed - it's very much looking over the horizon and it may produce all sorts of surprises.

 

Thank you @CRG . I am lucky that Ed Davey is a responsive MP. He has spent time learning the issues in ME and decided himself to write to Lord Kamall in response to a letter from me to him. I believe he has now written again.

I will be glad when we hear details of more research funding.