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

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from the Times article
Myalgic encephalomyelitis (ME) is a debilitating illness characterised by physical and mental fatigue, pain, sleep disorders, gastrointestinal problems and sometimes brain fog. Symptoms flare up after exertion, a phenomenon known as post-exertional malaise, which is increasingly recognised by researchers as a tell-tale sign.
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sometimes? I would say most of the time.
Has anyone asked SJ why if PEM is so recognised by researchers, and NICE that the main NHS page makes no mention of it?

MSEsperanza said:
The Daily Mail also covered it

https://www.dailymail.co.uk/news/ar...tml?ns_mchannel=rss&ns_campaign=1490&ito=1490

From skimming it seems they used some outdated / inaccurate information about the publication of the NICE guidelines?
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yes totally
As it stands, the treatments offered to patients for ME are cognitive behavioural therapy (CBT), a talking therapy used for anxiety and depression, and a structured exercise programme called graded exercise therapy (GET).
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Daily Mail.
 
rvallee said:
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.
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A legal opinion can be based on anything and a Ministerial Statement could form the basis of a legal claim, but it doesn't have any especial force in Law. UK Ministers frequently make statements that contradict one another and what is said by a Minister can be unsaid by that Minister - or written out of existence by a simple word from the Prime Minister or rendered meaningless by a decision of the Treasury. The Privy Council has little or no involvement in Departmental decision making, and SPADs have no legal standing and mostly operate as a promo team for their Minister, the team either moves with or disperses, as soon as that Minster moves on, which they do with some frequency.

Clearly Javid has found something in the ME/CFS situation that interests him and the ForwardME group looks to have done some pretty deft work in the background. However we shouldn't get too carried away about this - it is an advance but how far and for how long it will go isn't certain. The key change (if any) will be the impact within the Dept of Health on the culture and long term planning of the bureaucracy that actually makes things happen. Also announced yesterday were major cuts in civil service numbers, if those cuts affect the Dept of Health in a significant way then any initiative envisaged by Javid's team may have little chance of developing deep roots.

Ministerial enthusiasms can be helpful while they last - that is the enthusiasm or the Minister - the danger is that an enthusiasm becomes linked with a particular individual and/or a particular Party; ForwardME will need to continue its deft footwork if any gains made with the current Health Secretary continue with his passing - he is after all a not wholly popular member of a very unpopular Government which may be entering an election sooner rather than later.
 
My daughter couldn’t be saved but there’s hope for other ME patients

"The announcement of an action plan for tackling myalgic encephalomyelitis (ME) is a genuine breakthrough. Sajid Javid and his team have set Britain on the path to become the world leader in confronting this cruel, misunderstood and neglected disease.

For me it is the most bitter of bittersweet moments.

In the early hours of October 3 last year, my eldest daughter, Maeve, died aged 27 from ME.

This intelligent, creative, courageous young woman lived half her life with a truly awful disease. Bit by bit, ME stole away her youth, her promise and her independence.

She struggled not just with the debilitating, disabling effects of ME but also with the disbelief, apathy and stigma of the medical profession, the NHS and wider society."

https://www.thetimes.co.uk/article/...t-theres-hope-for-other-me-patients-j7lbgg68k

Again I was able to view this in full but others might encounter a paywall.


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This is a Share Token link to Sean O'Neill's article in Todays Times 'My daughter couldn’t be saved but there’s hope for other ME patients'. The link should be active for anyone to access the article for a couple of weeks, or a least a few days. Comments to the article are closed, not surprising after the behavior of some commenters in Sean's previous article yesterday.

https://www.thetimes.co.uk/article/...tkXox7Jf598zGRke6InofE1uE7VfjSpStQUEr8XpLzeNY

 
Lou B Lou said:
This is a Share Token link to Sean O'Neill's article in Todays Times 'My daughter couldn’t be saved but there’s hope for other ME patients'. The link should be active for anyone to access the article for a couple of weeks, or a least a few days. Comments to the article are closed, not surprising after the behavior of some commenters in Sean's previous article yesterday.

https://www.thetimes.co.uk/article/...tkXox7Jf598zGRke6InofE1uE7VfjSpStQUEr8XpLzeNY
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Is there a non paywalled link for the previous article about Sajid Javid's announcement?
 
josepdelafuente said:
I might have a contact there, will find out
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Jerome Burne has written some good articles for the Mail on ME/c fs. This was written by a Jonathan Rose for the Mail Online. If you google his name he is described as a trainee reporter and has Muck Rack after his name- no idea what this refers to. He's written on a number of topics in the last few days so is not a specialist health reporter.

If the Mail do a hard copy report, I very much hope Jerome Burne writes it.
 
Lou B Lou said:
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.
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I'm not a Times' subscriber, however, I was able to read the article in full that Andy posted a link for.
 
Secondly, we must trust and listen to those with lived experience of ME/CFS.
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Yes!! It's about time that we were heard and taken seriously in the UK by the medical profession and the medical researchers. Hopefully this will continue with the UK media. This gives me great hope that finally things will start to change for us in a positive way.
 
TigerLilea said:
Yes!! It's about time that we were heard and taken seriously in the UK by the medical profession and the medical researchers. Hopefully this will continue with the UK media. This gives me great hope that finally things will start to change for us in a positive way.
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sure... but which ones

plenty of "recovered" people waiting to tell about LP etc. It could be great, could be catastrophic
 
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