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

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From skimming it seems they used some outdated / inaccurate information about the publication of the NICE guidelines?

Edit: Article has been corrected/ updated.

 

Is anyone in touch with Alem Matthees?

Can someone send him the statement?

 

from the Times article

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?

yes totally

Daily Mail.

 

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.

 

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

 

O'Neill is The Times' chief reporter: https://www.thetimes.co.uk/profile/sean-oneill?page=1 which explains the sympathetic nature of the story - unlikely that editors would allow someone 'not their own' to get away without a negative at some point. O'Neill has had involvement with ForwardME since 2020 https://meassociation.org.uk/2020/1...om-the-meeting-09-september-with-sean-oneill/ and he may well have been a key contributor to building the Javid connection.

 

I might have a contact there, will find out

 

Is there a non paywalled link for the previous article about Sajid Javid's announcement?

 

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.

 

Muckrack is a listing of journalists - bit like linked in.

 

I'm not a Times' subscriber, however, I was able to read the article in full that Andy posted a link for.

 

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.

 

sure... but which ones

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

 

Hopefully those people are in the minority though.