1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

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

Discussion in 'General ME/CFS news' started by Andy, May 12, 2022.

Thread Status:
Not open for further replies.
  1. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,525
    Location:
    Aotearoa New Zealand
    It's super news, very heartening. I'm posting mostly to keep the thread up in the new posts list, as I hope everyone gets to read the statement.
     
    janice, bobbler, Yvonne and 14 others like this.
  2. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    2,855
    Location:
    betwixt and between
    Last edited: May 14, 2022
    Ariel, Yvonne, Starlight and 6 others like this.
  3. Binkie4

    Binkie4 Senior Member (Voting Rights)

    Messages:
    2,308
    Is anyone in touch with Alem Matthees?

    Can someone send him the statement?
     
    Peter Trewhitt, Sasha, Yvonne and 8 others like this.
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    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.
     
  5. Trish

    Trish Moderator Staff Member

    Messages:
    51,871
    Location:
    UK
    Can someone contact the Daily Mail and tell them their stuff about the NICE guideline is 6 months out of date, that the new guideline was published last October, and GET is no longer recommended.
     
    janice, JellyBabyKid, Annie and 11 others like this.
  6. CRG

    CRG Senior Member (Voting Rights)

    Messages:
    1,857
    Location:
    UK
    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.
     
  7. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    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.


     
    lycaena, EzzieD, janice and 27 others like this.
  8. Lou B Lou

    Lou B Lou Senior Member (Voting Rights)

    Messages:
    429
    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

     
    Wits_End, Grigor, Ariel and 14 others like this.
  9. CRG

    CRG Senior Member (Voting Rights)

    Messages:
    1,857
    Location:
    UK
    EzzieD, janice, Grigor and 13 others like this.
  10. Trish

    Trish Moderator Staff Member

    Messages:
    51,871
    Location:
    UK
    That is such a brave and heartbreaking article by Sean O'Neill about his daughter Maeve. I don't suppose he's reading this thread, but just in case - thank you Sean.
     
    FMMM1, lycaena, EzzieD and 38 others like this.
  11. josepdelafuente

    josepdelafuente Senior Member (Voting Rights)

    Messages:
    236
    I might have a contact there, will find out
     
    FMMM1, JellyBabyKid, Ariel and 10 others like this.
  12. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,145
    Location:
    UK West Midlands
    Charles Shepherd has contacted them. Hopefully they will edit. They have generally been one of the better outlets on ME articles in the last couple of years
     
  13. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

    Messages:
    821
    Location:
    Oxford UK
    Is there a non paywalled link for the previous article about Sajid Javid's announcement?
     
    FMMM1, Yvonne and MEMarge like this.
  14. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,145
    Location:
    UK West Midlands
  15. Binkie4

    Binkie4 Senior Member (Voting Rights)

    Messages:
    2,308
    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.
     
    Yvonne, Missense, Suffolkres and 3 others like this.
  16. CRG

    CRG Senior Member (Voting Rights)

    Messages:
    1,857
    Location:
    UK
    Muckrack is a listing of journalists - bit like linked in.
     
    FMMM1, Yvonne, Missense and 1 other person like this.
  17. TigerLilea

    TigerLilea Senior Member (Voting Rights)

    Messages:
    1,816
    Location:
    Metro Vancouver, BC - Canada
    I'm not a Times' subscriber, however, I was able to read the article in full that Andy posted a link for.
     
    Yvonne, Missense and Andy like this.
  18. TigerLilea

    TigerLilea Senior Member (Voting Rights)

    Messages:
    1,816
    Location:
    Metro Vancouver, BC - Canada
    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.
     
    janice, Ariel, Yvonne and 7 others like this.
  19. JemPD

    JemPD Senior Member (Voting Rights)

    Messages:
    3,916
    sure... but which ones

    plenty of "recovered" people waiting to tell about LP etc. It could be great, could be catastrophic
     
    Ariel, Yvonne, Missense and 9 others like this.
  20. TigerLilea

    TigerLilea Senior Member (Voting Rights)

    Messages:
    1,816
    Location:
    Metro Vancouver, BC - Canada
    Hopefully those people are in the minority though.
     
    Ariel, Yvonne, Missense and 4 others like this.
Thread Status:
Not open for further replies.

Share This Page