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

Statement

My Rt Hon Friend the Secretary of State for Health and Social Care (Sajid Javid) has made the following written statement:

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) affects the lives of children and adults across the country. It can be an incredibly disabling condition with fluctuating symptoms making it difficult to take part in everyday activities, enjoy a family or social life, access services and engage in work or education – especially for the estimated 25% of people who have severe or very severe symptoms. Whilst there are currently no known cures or treatments for the condition, people with ME/CFS can be supported to manage their symptoms and maximise their quality of life.

Today, on World ME Day, I have two announcements to make to show that the Government is committed to better care and support for people living with ME/CFS and their families.

https://questions-statements.parliament.uk/written-statements/detail/2022-05-12/hlws23

 

Is that an encouraging admission?

 

I would suggest that it is a hugely important admission.

 

Both very welcome developments. A spark of hope.

 

This is very exciting:

"To support these research priorities, I will co-chair a roundtable with my Department’s Chief Scientific Adviser, Professor Lucy Chappell, to bring together experts on ME/CFS, including people with lived experience to discuss what needs to happen next. The Chief Scientific Adviser has asked the UK Clinical Research Collaboration to convene a subgroup on ME/CFS to work with funders, researchers, charities, and people with ME/CFS to drive high-quality applications for research into ME/CFS and support the research community to build capacity and capability in this field. We are committed to funding research into this important area. Funding for high-quality research into ME is available through existing commitments of HM Government to research and development. The National Institute for Health and Care Research (NIHR) will work with the research community to respond to the priorities as set out in the Priority Setting Partnership, alongside other funding partners."

"At the heart of the delivery plan will be two core principles. Firstly, that we do not know enough about ME/CFS, which must change if we are to improve experiences and outcomes. Secondly, we must trust and listen to those with lived experience of ME/CFS."

 

Very encouraging.

I love how the priority setting partnership makes it very clear that the CBT/GET approach and model is irrelevant for patients.

 

Very good.

 

Early day motion. Posted elsewhere on the forum, but part of government advocacy/announcements.

https://edm.parliament.uk/early-day-motion/59735/me-awareness-day-2022

 

This could have significant legal repercussions. I still see from time to time people forced into CBT & GET or otherwise they lose their insurance or disability benefits. Even though there is no basis for either treatment to be useful, let alone curative.

And while true that we can be supported to manage symptoms and maximize quality of life, we aren't, not in the UK or elsewhere. So we could be supported, and explicitly aren't because of obsessive focus on irrelevant factors, as evidenced by being completely absent from the PSP priorities. That's another assertion that could be significant.

One thing that is important to understand about the Westminster system of government, where the government is composed of what's called the privy council, ministers and senior advisers, is that when a minister makes such a statement for the government, they speak for the whole government. If there is dissent on a statement and no agreement on what is official can be reached, it is withheld in discussion.

So Javid saying that in writing is the same as the UK government recognizing that there is currently no treatment for ME. A fact that agencies under the government cannot continue to ignore, although as with literally any rule, it's 99% about enforcement.

But this is significant given all the ridiculous controversy happening in medical politics at the colleges and institutions who keep pushing their fake treatment model.

 

Article in The Times

Sajid Javid promises radical action for patients debilitated by ME

"Sajid Javid has promised a radical new approach to the debilitating illness myalgic encephalomyelitis, making the government a world leader in tackling what he called “an incredibly disabling condition”.

The health secretary marked World ME Day by telling parliament he was “committed to better care and support for people living with ME and their families”.

Javid will lead the development of a delivery plan for patient care and new research into the condition — also known as chronic fatigue syndrome (CFS) — which affects at least 250,000 people across Britain."

Might be paywalled but seems to be open access at time of posting, https://www.thetimes.co.uk/article/...tion-for-patients-debilitated-by-me-9bkq6qf5g

 

The Times article is not open access. If anyone is a Times subscriber could you please post a Share Token link for this article - that will enable everyone to read the article for free. The Share Token access usually lasts for about 2 weeks.

 

Article written by Sean O’Neill of The Times and I was able to read it, in full, from his own tweet:

https://twitter.com/user/status/1524811797290795010

 

Reminds me of @PeterW posts here https://www.s4me.info/threads/the-25-have-severe-me-statistic.27238/#post-416942

Thanks Peter

 

While it is important that those of us who are able to do this, my impression is that this statement, as well as the statement from NICE, both built on top of the PSP results, is the result of a lot of effort behind the scenes from a number of our charities.

 

Relax everyone, Hilary Johnson has figured ME out, so no need to get the government involved!

 

That discussion did feed into this, but I did not expect results to come so quickly.
Credit should go to Sonya and the AfME team, with support from the other charities, who have been working on this for some time.