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NICE guideline on ME/CFS: FoI correspondence

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Oct 19, 2016.

  1. charles shepherd

    charles shepherd Senior Member

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  2. charles shepherd

    charles shepherd Senior Member

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    I am obviously involved with various MEA and Forward ME Group/Countess of Mar initiatives to try and get the 2007 NICE guideline on ME/CFS revised but cannot comment on this till Friday as I'm now going to be working away for two days and will only be dealing with urgent e-communications

    MEA submission to NICE:
    http://www.meassociation.org.uk/201...nice-mecfs-guideline-on-hold-23-october-2013/

    Forward ME Group meeting with Profesor Mark Baker from NICE:
    http://www.meassociation.org.uk/201...statement-by-the-me-association-10-july-2014/

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
  3. A.B.

    A.B. Senior Member

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    So what's new? I see Wessely school "experts" creating a situation where there is no consensus on whether this is a biological or behaviour illness, resulting in paralysis. The cynical might even say this is the perfect excuse to do nothing and that Wessely et. al. know exactly what they are doing.

    Also see https://en.wikipedia.org/wiki/Fear,_uncertainty_and_doubt
     
  4. trishrhymes

    trishrhymes Senior Member

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    Thank you @CharlesShepherd for sharing this information.

    I notice that the Royal College of Psychiatrists is mentioned as providing 'expert' input. Is there any way of keeping Wessley out of this???

    I hope by the time the NICE guidelines are reviewed next year(?) Alem Matthees et al will have been able to get a peer reviewed paper published showing the PACE trial actually demonstrated that GET and CBT don't work!

    The evidence we now have that PACE claims of efficacy were fraudulent, along with the 2 year follow up that already shows no between-group differences, and the FINE trial showing the treatments don't work, and the MEA surveys giving evidence of harms, should finally demonstrate that these are failed therapies that have no place in ME treatment.

    I wonder whether there is any chance that the Cochrane review based largely on PACE (and done with input from the PACE researchers as Chalder admitted at the FOI tribunal hearing) can be challenged in time for the NICE review. I notice it was mentioned in evidence in support of CBT/GET in some of the correspondence.

    Thanks for all your good work.
     
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  5. taniaaust1

    taniaaust1

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    It shows just how hard the Countess of Mar has been working trying to help. (has she ever been sent one of those big thank you cards by the community?? if not she deserves it).

    A couple of things in that got my attention, just how much control those UK psychs have (I think we all knew that already but comments we see in this stuff reaffirm this will keep going on) eg

    statement by the director of Clinical Practice of NICE (Mark Barker) 18th June 2015.
    .
    So in other words they dont care what other countries do or how they see ME/CFS as they will seek out the "highly esteemed" UK medical establishments.

    22nd Sept 2015 Mark Barker NICE

    Countess of Mar 23rd Sept 2015

    I cant see any response given to her to that. So Im supposing they may of avoided answering it.

    statement of Mark Barker (NICE) 27 July 2015
    I love this quote from Countess of Mar Aug 2015
     
    Last edited: Oct 19, 2016
  6. Keela Too

    Keela Too Sally Burch

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    Here in N.Ireland, Hope 4 ME & Fibro NI met with the NICE rep for NI.

    We voiced our concerns about GET in particular, and expressed the concern that when NICE reviewed evidence that the biopsychosocial "experts on ME" should not be relied upon to provide that review.

    https://www.facebook.com/Hope4MEFibro/posts/1179027042156114
     
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  7. Sidereal

    Sidereal Senior Member

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    I laughed out loud at the 'highly esteemed' bit.
     
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  8. taniaaust1

    taniaaust1

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    more statements I found interesting

    quote Mark Barker (NICE) 23rd Sept 2015

    umm so what happens if there is ever a major ME break throu with the research being published in another language??? I guess it means nothing then to the UK establishment.

    quote Mark Barker (director NICE) 10th Oct, 2015
    .....................

    there was some quote somewhere in there where someone tried to say that UK patients were different to the rest of the world (I didnt take the statement in the way it was said in a good way) but I couldnt find it when I relooked. I think Countess of Mar then make a comment to that statement implying ME is all over .

    It made me wonder if their will end up being a widenly bridge between the definition in different countries if UK doesnt change its stances but other countries do and it could get to the point where UK completely ignores what is happening as far as the rest of the world due to then saying their ME/CFS patients are different.
     
    Last edited: Oct 19, 2016
  9. A.B.

    A.B. Senior Member

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    Conservative scientists with ties to the health insurance industry are promoting doubt on the illness, disseminating false information (PACE trial), creating confusion (Oxford criteria based studies; fatigue cohorts being referred to as CFS or ME patients) and creating controversy in order to shape public perception and health policy. The resulting paralysis aligns well with their interests. They cannot be convinced by evidence and good arguments because they are not interested in the truth, only in promoting their views.
     
    Last edited: Oct 19, 2016
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  10. AndyPR

    AndyPR Cookies for Tired Sam

    I could find a few references that the view of the UK establishment is that there are no harms associated with GET, whereas the ARHQ report obviously indicates the view that there are (around page 9 and 10) and also this from page 21
    Screen Shot 2016-10-19 at 11.53.51.png
    Is that the sort of thing you meant?
     
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  11. taniaaust1

    taniaaust1

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    no... what I wanted to quote but then couldnt find again may of been refering to the definitions or maybe it was refering to GET/CBT but it was implying the UK patients are different and hence the findings in the rest of the world may not be relevent to them (so yeah it could of been refering to CBT or GET). So was like implying UK can ignore rest of the worlds findings research due to irrevelence...

    then countess of Mar make a comment which may of been in defense of what was said with that (unless she was refering to something else said but I saw a response of hers which fit with the comment Ive seen and I think evoked her response)

    I cant even think who may of made the quote trying to separate the UK patients from the rest of world came from (obviously though the post much of been from one of those who held quite strong psych views.. maybe it was one of the posts with the name of the poster blocked out)
     
  12. Aurator

    Aurator Senior Member

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    "We consider all English-language research".

    Let's hope Fluge and Mella don't publish in Norwegian, then.

    Then again, "we consider" doesn't sound too reassuring anyway. Publishers and editors "consider" scripts submitted to them all the time without ever actually reading most of them.

    This was a useful FOI request. It shows how far we still have to go. Complacency at the top is immense and still seemingly immovable. A deep contempt for pwME, which we know from our collective experience is endemic within the UK medical profession and elsewhere, probably underlies it.

    "NHS England - High quality care for all, now and for future generations".

    Me: "I guess we come under the "future generations" bit, do we?
    Mark Baker: "That's right. Someone else is going to have to help you, because I'm damned if we will."
     
    Last edited: Oct 19, 2016
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  13. Esther12

    Esther12 Senior Member

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    I pulled out some of the bits I was most interested in:

    Mark Baker e-mail (p3/48) 18th Jun 2015

    "I had been made aware, probably by the same source as you, of the work commissioned in the US. What she didn't mention is the summary situation described in the BMJ recently of no real progress in twenty years, no agreement on causality or disease nature and little prospect of change in the next decade. In these circumstances, it doesn't really matter what we call it, the NICE guideline remains the best summary of effective treatments for most patients with CFS.

    It is not really for the NHS to respond to a report commissioned in another country and not yet examined by its commissioner. We would take seriously the views of the relevant esteemed medical associations in the UK, principally the RCP and the RCPsych, when looking at reviewing this guidance around 2018. I am not aware of any reason to do anything before then unless some major new evidence on treatment emerges, and we know that no major studies are in progress."



    Mark Baker e-mail (p10/48) 22nd Sept 2015

    [In response to Mar letter on US HHS CFS advisory committee recommendations following the IOM report]: "You will be aware that the British academic establishment hold an entirely different view, though not necessarily any better informed."

    "It remains a tragedy that this serious and disabling condition has seen so little progress in a generation."

    p27/48 - 'Decisions and actions' meeting. Only info on attendees is "SW". Lots of information from this removed as not being in the scope of the FOI request, but presumably a different request could be made for all available information on this meeting.

    p35/48 - Cochrane used to justify not changing NICE.

    p35/48 28th October e-mail with name of the person they're consulting blanked out.

    p37/38 Mark Baker 23rd October e-mail:

    "[blank]'s views are certainly worth getting."

    "We will still be left with a syndromic state with a broad spectrum of severity, little idea as to aetiology and not much to treat with. I'm not sure why the special interest groups think the guidance needs to change."

    IMO this really highlights what a bad job we're doing with explaining that the current guidelines are allowing some clinicans and 'experts' to pretend that things are much better than they truly are.

    p38/48 Mark Baker 12th October e-mail:

    "Basically I think we remain in a world which is split down the middle between the advocates of CBT and GET, some without assumption as to aetiology, and the believers in a primary neurological condition. The former believe the the PACE trial support their view, and the guidance. The latter believe that the PACE trial confirms their view that the guidelines is harmful because it assumes a primary psychological cause and the GET is directly harmful (to some)."

    Again, to me this indicates that we've not been successful in the way we've framed things. He views the debate in the terms set out by Wessely and co. We need to make clear that the primary concern is about patients being misled about the efficacy of CBT/GET, and that being harmful. That is the area where we have the clearest evidence on our side, and that shouldn't be ignored because of distracting disputes about whether ME/CFS should be classed as 'neurological'.
     
    Last edited: Oct 19, 2016
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  14. Large Donner

    Large Donner Senior Member

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  15. Barry53

    Barry53 Senior Member

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    The Countess of Mar is a potent force isn't she!
     
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  16. Barry53

    Barry53 Senior Member

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    Re-quoting your quote:-
    This is so very true. Politicians use the same subterfuge all the time when asked if something is true or not, by replying "There is no evidence to suggest that ...", and I always think - well there won't be will there, if you don't go looking for it! But the same tactic is used by any others with personal agendas.
     
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  17. Jan

    Jan Senior Member

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    I've just been reading the heartbreaking post regarding another early death due to ME.

    Then I read this, it's utterly sickening. How many years do we all have left, it could be any one of us next.
     
  18. charles shepherd

    charles shepherd Senior Member

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    MEA website announcement:

    http://www.meassociation.org.uk/201...eedom-of-information-request-24-october-2016/

    Background information:
    MEA and Forward ME Group initiatives to try and get the 2007 NICE guideline on ME/CFS revised

    MEA submission to NICE:
    http://www.meassociation.org.uk/201...nice-mecfs-guideline-on-hold-23-october-2013/

    Forward ME Group meeting with Professor Mark Baker from NICE:
    http://www.meassociation.org.uk/201...statement-by-the-me-association-10-july-2014/

    Forward ME Group meeting with Dr Martin McShane from NHS England:
    http://www.meassociation.org.uk/2015/09/forward-me-group-minutes-of-meeting-held-on-15-july-2015/

    I am shortly off to London for a meeting with the Countess of Mar at the House of Lords where the NICE guideline review, along with this FoI request correspondence involving NICE and NHS England, will be on the Agenda tis afternoon!
     
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  19. eafw

    eafw Senior Member

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    Say hello to her from all of us here and thank her for the work she does - we really appreciate her advocacy.
     
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  20. charles shepherd

    charles shepherd Senior Member

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    Will do!
     

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