August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
Discuss the article on the Forums.

Trial by Error: NICE Rejects My FOI Request

Discussion in 'General ME/CFS News' started by AndyPR, Jul 31, 2017.

  1. AndyPR

    AndyPR Senior Member

    More at http://www.virology.ws/2017/07/31/trial-by-error-nice-rejects-my-foi-request/
     
  2. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,824
    My comment:
    I'm simply flabbergasted that those jerkwads would even say such a thing, and in a letter to an ME journalist, no less. I now have absolutely no faith in NICE - whoever is overseeing these things is utterly corrupt and completely uninterested in the patients they purport to serve.
     
    ScottTriGuy, Mary, MEMum and 28 others like this.
  3. Demepivo

    Demepivo Dolores Abernathy

    Messages:
    406
    Likes:
    2,228
    Who is the patient representative on the PACE expert panel?
     
    MEMum, JaimeS, Vonjones and 4 others like this.
  4. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,824
    My best guess would be Chowdhury, from AfME. Anyone else would have presumably said something about it.
     
  5. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,217
    Likes:
    16,797
    UK
    @Valentijn

    I assumed the 'patient representative' is an actual patient. Am I wrong? I can only think of one who would fit the bill. If it a patient, could it be the group leader/chair of the ME group of which Esther Crawley is medical adviser ? I have the impression he would be a PACE supporter.
     
    MEMum, Luther Blissett and SamanthaJ like this.
  6. dangermouse

    dangermouse Senior Member

    Messages:
    406
    Likes:
    2,258
    I am disappointed and offended that NICE think of a vulnerable patient group as they do. To use this as a reason/excuse makes one wonder. And to make comment about looking out for the wellbeing of the expert panel is bizarre...aren't NICE supposed to be looking out for patients wellbeing?
     
  7. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,523
    The NICE expert panel, not the PACE one? Could be almost anyone. I wonder if it's Mary Jane Willow, as one of the comments from the expert panel seemed to come from a patient representative, and was about children. She's been totally deferential to authority, and never shown any indication that she understands the problems with PACE, so would be ideal from the point of view of NICE.
     
  8. Wolfiness

    Wolfiness Activity Level 0

    Messages:
    459
    Likes:
    1,954
    UK
    Can Esther Crawley drink a glass of water while you say that?
     
  9. user9876

    user9876 Senior Member

    Messages:
    2,584
    Likes:
    18,184
    I view NICE's response basically accusing ME patients of being violent and about to physically attack experts as hate speech designed to stigmatize a minority group.

    They clearly are not an impartial group.
     
    MEMum, PennyIA, lilpink and 21 others like this.
  10. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,824
    Did anyone specific from NICE put their name on the letter? Virology's website is down currently, so I can't check. But I didn't notice any when I read it earlier.
     
  11. user9876

    user9876 Senior Member

    Messages:
    2,584
    Likes:
    18,184
    I wonder if an FoI for the evidence behind there claims would be a good idea. It is outrageous that a government organization should be stigmatizing patents but it also shows that we cannot expect anything from them. They clearly have an inbuild bias and hatred of ME patients.
     
    MEMum, lilpink, Dolphin and 9 others like this.
  12. alkt

    alkt Senior Member

    Messages:
    194
    Likes:
    352
    uk
    n.i.c.e has the sole purpose of saving taxpayers money. it has never been there to benefit patients of any kind.
     
  13. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,154
    Likes:
    17,872
    The daft thing is, by closing ME CBT/GET clinics and providing GPs with good diagnostic and pacing guidelines, they could save the NHS money.
     
  14. Cinders66

    Cinders66 Senior Member

    Messages:
    417
    Likes:
    1,811
    Of the 7 topic experts NICE consulted on whether to update the CFS guidelines , 3 were psychiatrists and one Is assumed to be the CBT/GET researcher/paediatrician Esther Crawley.

    What next let bankers dominate the expert group on whether they should get higher bonuses, footballers decide their own wages and criminals put together their own juries?

    We don't need names , that says it all. NICE hasn't moved on from the days when it classed CFS under both mental health and neurology. And we know how most uk neurologists view the illness and also how psychiatry approaches it.

    This cannot be accepted given the modern understanding of it as multi system disease with a heavy immunological component and im surprised there hasn't been more discussion on how to push forward on this
     
    Solstice, Wolfiness, Snowdrop and 6 others like this.
  15. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,337
    Likes:
    4,410
    London
    It could be one of the existing GDG patient reps. There were originally 3 but Tania Harrison (BRAME) reigned leaving 2. I'm not naming the other two as I have no idea if they were asked to comment again or if NICE got someone else for the job.
     
    Last edited: Aug 2, 2017
    MEMum, Valentijn and Esther12 like this.
  16. Learner1

    Learner1 Professional Patient

    Messages:
    1,229
    Likes:
    2,040
    Pacific Northwest
    Therein lies your problem....

    Why not advocate for immunologists, infectious disease specialists, and clinical nutritionists to be on the committee, and that they review the recent IOM and CDC info as well as that list of recent CFS research.

    It seems that continuing to argue about PACE and your NICE guidelines is counterproductive. Can't you change the rules of the game?
     
    Last edited: Aug 2, 2017
    Solstice, MEMum, Jan and 1 other person like this.
  17. user9876

    user9876 Senior Member

    Messages:
    2,584
    Likes:
    18,184
    When I finally read this I was quite shocked by the NICE reply.

    They basically repeat the violent ME patient story to a journalist as an excuse for not being open. This is a story that aims to stigmatize and bring hatred to ME patients. So for a government body to be pushing this hate speech to a journalist is shocking.

    Then the conflate free speech and FoIs with violence our rights to free speech and to get information are fundamental human rights. For a government agency to say if you try to exercise these rights we will remove other rights is equally shocking. In saying we have no right to information because people are asking for information and discussing and criticizing on forms is basically violating our rights to free speech.

    The clearly haven't done much investigation into the issue because if they had they would realize that an information tribunal had rejected these arguments.
     
  18. BurnA

    BurnA Senior Member

    Messages:
    2,086
    Likes:
    9,863
    Maybe this should be our strategy.
    A campaign to save money - shut down the CBT/GET clinics.
    Avoid all talk about anything else.

    Then when they are shut down we start a new campaign....
     
    Artstu, Cheshire, Solstice and 9 others like this.
  19. NelliePledge

    NelliePledge plodder

    Messages:
    774
    Likes:
    3,516
    the hospital based clinics are already in the CCGs crosshares for savings - the Nottingham City Hospital one has already closed to be replaced by a community based service basically merging it in with pain service so no specialist "CFS/ME" at all in Nottinghamshire. I saw a post the other day where someone mentioned one in the North West has also recently closed. I believe this is under the influence of IAPT and MUS as they believe they can get away with sending people for the IAPT type of generic CBT and then the generic pain service. So aiming to provide a service to mild/moderate ME/CFS patients that is even sub the sub par NICE guidelines............of course they are already "providing" a sub NICE non existent service to severe patients
     
    Last edited: Aug 2, 2017
    MEMum and Skycloud like this.
  20. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,523
    Their use of section 38 seems rediculous. If it can beused because of fear of angry tweets, then surely politicians could use it as a justification to avoid the release of almost any information?

    Also, responding like this makes them look pretty bad. It seems tactically unwise. If I were them I'd have relied on Section 40.

    Their response is in itself a good indication of their positioning, and shows how much trouble we're in with NICE. Being refused information in this way provides quite a lot of information in itself.

    There was a statistically significant improvement for the 6 mwt for GET over SMC only (although this difference was too small to meet the criteria for a 'clinically significant improvement' which had been used for the trial's primary outcomes).
     
    Last edited: Aug 3, 2017
    MEMum, Solstice, Skycloud and 2 others like this.

See more popular forum discussions.

Share This Page