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

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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;377:eek:1221.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
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BMJ tweet promoting the article.
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strategist said:
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.
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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.
 
strategist said:
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?
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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]++++
 
rvallee said:
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.
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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.
 
Caroline Struthers said:
Is there a non paywalled link for the previous article about Sajid Javid's announcement?
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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).
 
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chrisb said:
The minister may pull the lever, but is it connected to anything?
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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!
 
Sbag said:
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…
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Specialist treatments
There are a number of specialist treatments for ME/CFS.

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

CBT is a talking treatment that can help you manage ME/CFS by changing the way you think and behave.

Your CBT therapist will ideally have experience of dealing with ME/CFS and treatment will be offered on a 1-to-1 basis.

Using CBT does not mean ME/CFS is considered to be a psychological condition. It's used to help people with a variety of long-term conditions.
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"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?
 
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FMMM1 said:
Just checked Hansard (official record of Parliament - in this case the Commons - 12th May) and it's there - search the "Whole Day" PDF for "Savid".

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).
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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.
 
Merged thread

‘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

When Gigi Joseph-Garrison was 16 years old, she found herself in hospital. She could barely move and was given a feeding tube because she couldn’t eat. The doctor assigned to her case told her she had an eating disorder. But she believed that the diagnosis was wrong.

Joseph-Garrison, now 20, had developed myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome or ME/CFS. When she first went to her GP about it, she actually suggested the ME diagnosis, having done some research online.

From that point, she quickly deteriorated. “It went from quite mild ME to extremely severe ME, I couldn’t eat any food, it was just too much energy”, she says. That’s when the now-20-year-old was admitted to hospital.

Having already been misdiagnosed with the eating disorder, the doctor insisted that ME was a mental illness, rather than a physical one, and tried to have Joseph-Garrison sectioned. “It was the worst thing I’ve ever experienced,” she says.

She experienced photophobia (sensitivity to light), which is common among ME patients. “It was searing, horrific pain for hours on end,” she says. “[The doctor] would force me to sit up and my body was very weak and couldn’t do that easily.”

He also instructed physios to see her twice a day. “It was an insane amount of exercise for someone who just needs rest,” she says. “It could have killed me.”
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https://inews.co.uk/inews-lifestyle/me-patients-sajid-javid-needs-to-change-1655018
 
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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:
Daily Mail said:
IN MY VIEW... ME needs better research and care

I WAS delighted when Health Secretary Sajid Javid recently announced a push for more research and better care for patients with myalgic encephalomyelitis (ME).

For years, doctors tended to view the illness as having its roots in a psychological, rather than biological, cause. But the more time I spent with patients, the more obvious it seemed to me that they had a seriously misunderstood condition.

While the exact cause is still not clear, we know now that ME is a physical disorder, and if psychology and emotion come into the picture it is only as a result of being so ill (and so wrongly diagnosed).

In ME patients, there are abnormalities in the way their muscle cells function, so when they exercise, less energy is supplied to the muscles, as opposed to the increase seen in healthy people. There’s also evidence their adrenal glands — which produce adrenaline and cortisol, hormones critical for wellbeing, energy and immunity — are much smaller.

For the 250,000 UK patients who suffer from this disabling illness, better understanding — and new treatments — can’t come soon enough.
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2D9C0845-A90A-45E8-BFC5-025C59A22157.jpeg



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):
449A5BFE-4828-4738-945D-C895EBE14765.jpeg

This is the end of the article, with a sensible quote from David Strain:
Daily Mail said:
Professor Banerjee says there is still a lot of mystery surrounding long Covid. ‘It’s definitely a syndrome but we haven’t fully defined it yet,’ he says.

‘We have potentially several different diseases within a disease. We’re not quite there yet with knowing the mechanisms — or the medications to use.

‘Patients are understandably getting frustrated and feel that we are not moving quickly enough. And because there has been a gap in provision of long Covid treatment, some private companies have been quick off the block to sell things that purport to fill it.

‘But we should be really worried about anyone who says they fully understand long Covid and have a curative treatment for it, because there is no evidence for that yet in global scientific communities.’

Dr david Strain, a senior clinical lecturer at Exeter University Medical School, is also working to find new ways to diagnose and treat long Covid.

He warns: ‘These private clinics have popped up because at the moment no one knows what the proper treatment is. But if you see a clinic that offers to cure your long Covid, then they are lying.’

‘No one can offer a cure for long Covid because we don’t even know what long Covid is doing to people yet — let alone how we can fix it.’
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Shame the article doesn’t mention ME/CFS but good otherwise.
 
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In ME patients, there are abnormalities in the way their muscle cells function, so when they exercise, less energy is supplied to the muscles, as opposed to the increase seen in healthy people. There’s also evidence their adrenal glands — which produce adrenaline and cortisol, hormones critical for wellbeing, energy and immunity — are much smaller.
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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
 
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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.
 
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Binkie4 said:
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.
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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.
 
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