The All Party Parliamentary Group on ME launch their new report, Rethinking ME, today

Countrygirl

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Today, the All Party Parliamentary Group on ME launched their new document Rethinking ME.

It can be downloaded from here: https://appgme.co.uk/?fbclid=IwAR1MoM4zjGEwzPQPEq1FP3KPZuH-iCEnSZaCu0BK1cKIwOsB3wXX6a-4uBY

Here is a summary of the report:

Myalgic Encephalomyelitis (ME), also sometimes referred to as Chronic Fatigue Syndrome (CFS), is a profoundly debilitating, chronic condition that affects multiple systems within the body.


The physical symptoms of ME, such as extreme pain, post exertional malaise, and cognitive dysfunction, make ME “as disabling as multiple sclerosis, systemic lupus erythematosus… and other chronic conditions”. Consequently, people with ME require high levels of service provision to be able to manage their condition well and live the lives they wish to.


This report looks at key areas of service provision where sensitivity to the nature of ME is required. These areas were investigated over the course of five APPG evidence sessions and in further correspondence with ME patients and relevant stakeholders:

(1) Biomedical Research and Research Funding
(2) Condition Diagnosis, Symptom Management and Medical Services
(3) Children and Young People with ME
(4) Welfare and Health Insurance-based Benefits
(5) COVID-19 and the ME community.


Across each area, the ME APPG discovered that a lack of understanding of the physiological nature of ME, and the challenges faced by people with ME, is widespread amongst health professionals and the general public. At present, many services fall short of the standard required to ensure that people with ME can access a prompt and accurate diagnosis and effective condition management. Misunderstandings and a lack of consensus on how to define and categorise the condition compound the medical challenges faced by people with ME and further hinder access to support in areas including social care, welfare, education and employment.


The removal of GET as a treatment for ME is a particularly meaningful step for the ME community.


The recent publication of the new National Institute for Health and Care Excellence (NICE) guideline on ME/CFS has the potential to bring about noteworthy progress with regards to medical care for people with ME. The removal of graded exercise therapy (GET) as a treatment for ME is a particularly meaningful step for the ME community. This decision followed many years of campaigning by people with ME who called out the detrimental effects of GET despite opposition from an influential minority within the medical profession.


It is evident that the voice of the ME community is beginning to be heard within health policy and decision-making. This development comes at a time when, amongst the general public, there is a new appreciation of what it is like to live a life in lockdown and a growing awareness of long COVID, a condition which significantly overlaps with ME. These factors have contributed to a growing momentum for transformation in the way that people with ME are treated in the UK.


Whilst the release of the new NICE guideline brings the prospect of meaningful change for people with ME, we have seen with other conditions, such as endometriosis, that a positive revision of the NICE guideline does not necessarily result in swift positive change to the standards surrounding condition diagnosis, treatment, and management. Therefore, the ME APPG is seeking a firm commitment from the NHS, UK and Devolved Governments that the new NICE guideline on ME/CFS will be swiftly adopted and implemented in full across the UK.


To ensure full implementation of the guideline recommendations, the ME APPG recommends that the UK and Devolved Governments each facilitate a comprehensive review of the adequacy of ME service provision falling within their jurisdiction.


The ME APPG recognises that even though the new NICE guideline goes some way to improving quality of life for people with ME, there are further issues that people with ME experience which the guideline does not, and cannot, address given its sole aim is to set out foundational principles for medical care. People with ME require major cultural and policy change to take place within all professions associated with their care and support. Accordingly, the ME APPG recommends that strategies are developed in each of the four UK nations to transform our society’s approach to ME. The APPG also makes a series of supplementary recommendations which are summarised on page 8 and expanded upon in further detail within Chapters 1 - 5.
 

BrightCandle

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Definitely a major culture change in medicine is going to be necessary and significant implementation pressure to force the NHS into a position where ME patients are not mistreated. Its not even begun yet, the NICE guidelines have changed nothing on the ground for me so far and they need to provide a mechanism to report doctors refusing to comply with the guidelines,.
 
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Man imagine if this was in place everywhere for all conditions.! Would be great
my state in the US may set up Centers of Excellence for Long COVID. (if this new bill gets passed, which I suspect it will).

But what are Centers' of Excellence? Good Question: seems to mirror something New York State (or was it City?)..did after all the high covid they had. But what treatments actually exist?
 
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But what are Centers' of Excellence? Good Question:
Here is a link to the site showing: three new LONG HAUL CLINICS....in the New York Area.

This is VERY bizarre.

If you look at this page, you'll see that they seem to have created a very lovely physical facility. There is just not any mention of how you'd actually treat long COVID but considerable discussion of lighting and special doors.

https://www.perkinseastman.com/projects/covid-19-centers-for-excellence/
 
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Here is a link to the site showing: three new LONG HAUL CLINICS....in the New York Area.

This is VERY bizarre.

If you look at this page, you'll see that they seem to have created a very lovely physical facility. There is just not any mention of how you'd actually treat long COVID but considerable discussion of lighting and special doors.

https://www.perkinseastman.com/projects/covid-19-centers-for-excellence/
I guess once treatments exist they'll do them there..? In Australia centres of excellence are normally research institutes so maybe it's something like that.. LC research.? And clinical trials?
 

BrightCandle

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Man imagine if this was in place everywhere for all conditions.! Would be great
If the complaints system worked then we could utilise that, but the NHS closes ranks more than the UK police do when it comes to complaints. I really couldn't believe it when I made my first complaint about mistreatment how they were willing to modify my record and their records to cover their tracks and then lie to everyone involved, was an eye opening event on the systemic corruption at the heart of the NHS. None of the mistreatment nor the failure of the complaint system is an error, its malicious behavior by evil people.
 

Treeman

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what are Centers' of Excellence?
Here in York, UK my wife got referred to the long covid clinic last October. Eventually it turned out to be a meeting of several specialist from different departments looking at her notes and deciding where to send her for tests. The meeting took place end of April and we are still waiting to hear what next, 8 months after the GP request. She's probably in another long waiting list somewhere. Let's face it the chronic under funding of the NHS for 12 years has broke it, there wasn't enough staff to deal with the nation's health before covid. No chance after. Thank you the Tory's
 

Treeman

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the complaints system worked then we could utilise that, but the NHS closes ranks more than the UK police do when it comes to complaints.
I had a situation where I made a complaint and they just lied in reply. After further complaint's they contradicted earlier responses and lies and continued to lie. What chance as anyone got in the UK.
 

BrightCandle

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Some really concrete things they could do right now, today, is withdraw funding from all the charlatans who were involved in the PACE trials and who on the release of the new guidelines said they wouldn't follow them in a joint signed letter. Stop funding any clinics that refused to implement it, seems pretty simple to me to stop funding people who choose to ignore the guidance. These people are still getting cash for their clinics and their research funded, that should not be the case at all and that money would be better spent on research proposals looking for the biological underpinnings
 
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Countrygirl

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THE TIMES 26th May 2022



Sajid Javid rethinking ME after young relative’s battles
https://www.thetimes.co.uk/article/sajid-javid-rethinking-me-after-young-relatives-battles-kfbrwgf72?fbclid=IwAR3LWYEyXSS7a8bML_LpmmyilHwD8MSgwP4PlUJeTFuWRC2kBikZiZt3Blw
Sean O’Neill
Thursday May 26 2022, 12.01am, The Times
Sajid Javid said that the health service had failed in its attitude towards treatment of ME


The health secretary has spoken of a young relative’s battle with myalgic encephalomyelitis (ME) as he promised a new approach to the debilitating illness.
Sajid Javid said that the health service had failed in its attitude towards treatment of the illness but pledged to lead a cross-government initiative on ME. This would involve healthcare, education and the benefits system, while placing a new emphasis on research into the poorly understood condition. He will convene a panel next month with researchers from around the world in an effort to encourage new treatments.
Speaking at the launch of Rethinking ME, an all-party parliamentary group report, the health secretary disclosed that a close family member had been struggling with the chronic illness for six years. At the age of 12, his relative had gone within weeks from being an active girl who captained her school netball team to one who struggled with fatigue and low energy. Her schoolwork had suffered and doctors had been unable to explain her illness or offer any treatment.


Javid said he felt that once they had given a diagnosis of ME, doctors had nothing to offer his relative. “She is now 18 and there is still no improvement. She is desperate to get on and do things and there’s no end in sight,” he said. “Some clinicians try their best but I don’t think the system as a whole realises how serious this issue is and how it has been neglected for far too long”.

At least 250,000 people in the UK have ME, which affects more women than men. Common symptoms include pain, profound fatigue, post-exertional malaise, gastrointestinal problems and cognitive dysfunction.
There is renewed interest in the condition, partly because of significant overlaps with long Covid in terms of symptoms and post-viral triggers.

The cross-party report said that a “turning point” had been reached in accepting that ME is a physical rather than a psychological condition but that work remains to be done to bring about change for patients.
The report said: “People with ME require major cultural change to take place within all professions associated with their care and support. Sadly, false and outdated understandings of ME still circulate within medical and public discourse, making it more difficult, and often impossible, for people with ME to access the services to which they are entitled.” It continued: “The ME community and their advocates within the medical profession and wider society have made significant strides in challenging erroneous understandings and pressing for improved care.”

The report called for the new NICE treatment guidelines to be fully implemented across the health service. It added: “There has been a long-term disconnect between the treatment deserved by people with ME and what they experience in reality. This disconnect stems from . . . a lack of understanding of the biomedical nature of ME amongst many professionals associated with caring for and supporting people with ME, the absence of sustained research funding to develop our understanding of the underlying disease mechanisms, and a scarcity of evidence-led clinical services.”





THETIMES.CO.UK
Sajid Javid rethinking ME after young relative’s battles
The health secretary has spoken of a young relative’s battle with myalgic encephalomyelitis (ME) as he promised a new approach to the debilitating illness.Sajid Javid
 

BrightCandle

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Can't help but think Sajid Javid's response is so typical of the Conservatives mindset, its not real until it impacts them personally and then they care. He hasn't been moved by all the campaigns on ME or the quarter of a million people suffering from it, nope it was his singular niece that changed his mind about something being done. The beginning of at least some talk to do something about it, although nothing concretely useful yet but all for the wrong reasons.
 
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Countrygirl

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Has anyone got access to the BMJ for full access to this new article?

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

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,1 Sajid 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 …
 

Countrygirl

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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

↵All Party Parliamentary Group on Myalgic Encephalomyelitis. Rethinking ME. May 2022. https://appgme.co.uk/.../Rethinking-ME-a-report-by-the...
↵Torjesen I. NICE sets out steps NHS must take to implement ME/CFS guidelines. BMJ2022;377:eek:1221.doi:10.1136/bmj.o1221 pmid:35577360FREE Full TextGoogle Scholar
↵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:34716175FREE Full Text
 

BrightCandle

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Wow, I am a bit surprised that the BMJ published such a sympathetic piece. The BMJ has never been kind to us...
This is definitely a weird one because it tends to be a blog for doctors rather than a place where the health secretary can post. I used to think it was a medical journal but the bulk of its content really isn't and some of the appalling things said in blog posts about ME sufferers on there in the past year have led me to believe strongly the BMJ was going to continue to be on the wrong side of things. I doubt this post changes doctors opinions on the matter anyway. What Mr Javid doesn't realise is how deep their prejudice goes and how hard it will be to change that.
 
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