1. Read the 'News in Brief' post for w/c 16th Sept by clicking here, Guest.
    Dismiss Notice

Proposed Letter to NICE

Discussion in 'Open Letters and Replies' started by Graham, Dec 22, 2017.

  1. Daisymay

    Daisymay Senior Member (Voting Rights)

    Messages:
    408
    Likes Received:
    4,597
    Great letter Graham et all.

    I think this point from Paul is absolutely critical to protecting patients.

    The CBT/GET view of ME is shown by the scientific evidence to be invalid (IOM report etc), therefore the present guidelines based on the discredited BPS model must be withdrawn now, no waiting until 2020, that is completely unacceptable.

    Patients safety is paramount and the law requires patients fully informed consent. They can't put off fully informing them that the present guidelines are invalid for two years until NICE gets round to finishing their review, they need to take action on this now.

    The present guidelines urgently need to be removed and NICE needs to take action to ensure doctors/medics and the public are aware of this, that the present guidelines are scientific invalid and potentially dangerous.

    And they need to remember isn't a question of differing opinions, points of view that need to be aired over the next couple of years, no, it's about scientific evidence clearly showing that the BPS model and treatments NICE has been recommending all these years are invalid and potentially dangerous.

    So no delays, no procrastination to try and save face, NICE must take action now to protect patients.

    And if they refuse to do so, then what are the legal consequences to NICE of allowing their invalid guidelines to stand for the next two years?
     
    MEMarge, Sly Saint, Justy and 12 others like this.
  2. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    2,447
    Likes Received:
    12,384
    Please add my name, Ann West
     
  3. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

    Messages:
    297
    Likes Received:
    2,335
    Will PM you. Excellent letter Graham, as someone whose 2 brain cells are always struggling, thank you for your time & energy in composing the letter.
     
  4. Jan

    Jan Senior Member (Voting Rights)

    Messages:
    401
    Likes Received:
    2,947
    Am I too late? Thanks for writing the letter guys, fantastic job. I can't find the other thread about the letter. Please add me, Jan Sussex if I'm not too late.
     
  5. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    4,833
    Likes Received:
    31,745
    'tis a very elderly iPhone :).
     
    Justy, Hutan, Invisible Woman and 3 others like this.
  6. Graham

    Graham Senior Member (Voting Rights)

    Messages:
    2,329
    Likes Received:
    19,720
    I'm a very elderly iMc
     
  7. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    2,039
    Likes Received:
    13,787
    If you find yourself slowing down it may only be Apple altering the software.
     
  8. Daisybell

    Daisybell Moderator Staff Member

    Messages:
    1,742
    Likes Received:
    11,049
    Location:
    New Zealand
    Still - methinks you may have started out with better software than me!
     
    Justy, MEMarge and Graham like this.
  9. Graham

    Graham Senior Member (Voting Rights)

    Messages:
    2,329
    Likes Received:
    19,720
    I have copied out the list of stakeholders for CFS/ME, although I guess that many of them are just on all teh stakeholder lists. I think I have highlighted all the ME patient groups in blue, but I'd be grateful if a couple of you would just check through it for me. Thanks in anticipation.
     

    Attached Files:

    MEMarge and Invisible Woman like this.
  10. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    2,002
    Likes Received:
    11,080
    Location:
    UK
    I'm curious about why Wendy Boutilier's name on the letter is a hyperlink to a non-existent Facebook page?
     
    Justy and Barry like this.
  11. Jenny TipsforME

    Jenny TipsforME Senior Member (Voting Rights)

    Messages:
    400
    Likes Received:
    2,067
    Is Science for ME enough of an ‘organisation’ to actually become a patient voice stakeholder? There’s going to be a NICE workshop next week, you might still be able to get a place.
     
    MEMarge, EzzieD, Justy and 5 others like this.
  12. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

    Messages:
    1,201
    Likes Received:
    8,778
    Yes, @Jonathan Edwards is our rep.
     
    EzzieD, Forestvon, Joh and 10 others like this.
  13. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    4,833
    Likes Received:
    31,745
    If we are a stakeholder shouldn't we be on the list?
     
    Invisible Woman and Inara like this.
  14. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

    Messages:
    1,201
    Likes Received:
    8,778
    Barry, Jan, Justy and 2 others like this.
  15. Binkie4

    Binkie4 Senior Member (Voting Rights)

    Messages:
    1,223
    Likes Received:
    9,122
    If I'm not too late @Graham, please could you add my name, Gill Bigglestone.
    Thanks for writing the letter and collating names.
     
  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,369
    Likes Received:
    28,534
    Location:
    UK
    This.
    Any campaign in the offing anywhere to get this going?
     
  17. Andy

    Andy Committee Member & Outreach

    Messages:
    7,345
    Likes Received:
    54,319
    Location:
    Hampshire, UK
  18. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    1,731
    Likes Received:
    10,849
    Location:
    Cornwall, UK
  19. Andy

    Andy Committee Member & Outreach

    Messages:
    7,345
    Likes Received:
    54,319
    Location:
    Hampshire, UK
  20. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    2,002
    Likes Received:
    11,080
    Location:
    UK
    @Graham I never got an answer to my earlier post.(Post #70 in this thread.) I notice that the link is still in the final version of the letter.
     
    MEMarge likes this.

Share This Page