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

United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

Discussion in 'News from organisations' started by Andy, Mar 6, 2018.

  1. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,768
    Location:
    UK
    Does any version of 'First, do no harm' apply in this context? (I don't mean this as a bit of point-scoring rhetoric - I'm asking whether there's a set of clinical principles that apply as some kind of basic rules when research is useless or impractical.)
     
    Awol, adambeyoncelowe, MeSci and 2 others like this.
  2. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
    Looking at the NICE guideline development manual ...

    https://www.nice.org.uk/process/pmg...view#key-principles-for-developing-guidelines
    A couple of things I note:
    • "Guidance is based on the best available evidence of what works" seems to overlook the possibility that within a treatment-targeted group of people, that treatment may indeed work for some of them but potentially harm others within the same group. But the notion of harms is not mentioned.
    • In talking about the search for evidence, the notion of studies based on observational evidence seems to be accommodated. I think the "review questions" link is saying that such evidence still has to have been gathered by properly run studies (not just patient surveys etc?), but if done so then observational evidence can be valid. But I'm a bit out of my depth here so not sure.
     
  3. BruceInOz

    BruceInOz Senior Member (Voting Rights)

    Messages:
    414
    Location:
    Tasmania
    If there were no evidence of benefit then surely the threshold for sufficient evidence of harm would be lower. We can see there is no evidence of benefit but NICE needs to be convinced. I suspect the biggest stumbling block here is Cochrane and the low standards in psych research.
     
  4. Trish

    Trish Moderator Staff Member

    Messages:
    51,858
    Location:
    UK
    I find it difficult to get my head around the idea that NICE or any other body should take seriously and recommend treatments on the basis of small changes in how patients fill in questionnaires about their fatigue and activity levels during a trial while placebo and therapist effect are at their most powerful, and which turn out on re-analysis and long term follow up to be illusory -

    Yet they say they have to ignore detailed descriptions by many patients (and evidence of witnesses such as parents) written after GET that describe how much sicker they are, and how they have gone from walking to bedridden, plus large surveys of pwme that report worsening of symptoms after GET.

    If there were a drug that had such minimal subjective effects on an open label trial, and in addition had repeated reports of harm from patients, it surely would never be recommended in the first place, or if recommended it would be rapidly withdrawn and the mistake in recommending it acknowledged.
     
  5. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,731
    I thought I had read it in one of the many letters to NICE from the charities. I think you're right, though, and I see where I'm mistaken. See: https://www.nice.org.uk/process/pmg6/chapter/the-guideline-development-group

    Patients are given equal status on the guideline development group, and are encouraged to present 'grey literature', which NICE defines as patient surveys and unofficial evidence.

    I was remembering, I think, requests that the NICE guideline of 2007 should include the Chief Medical Officer's Report, due to a lack of convincing formal scientific evidence at the time.
     
    obeat, Awol and Trish like this.
  6. Daisymay

    Daisymay Senior Member (Voting Rights)

    Messages:
    682
    Jonathan, here is some info on Colin Blakemore/ME/MRC in case of help.

    Info for others, Professor Sir Colin Blakemore was CEO of MRC 2003-2007, member of advisory council of Sense About Science 2002 to present. SAS is the organisation which organises the Maddox Prize, which Professor Sir Simon Wessely won in 2012. Professor Blakemore was one of the judges.


    Info specifically mentioning Blakemore:

    From Magical Medicine: http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf

    1. The MRC’s Public Relations (PR) Strategy and The MRC’s denial of any PR strategy in relation to the PACE Trial - p252-254

    2. Many “Big Names” are involved with the PACE Trial - Professor Colin Blakemore - p 291 -293

    From Corporate Collusion: http://www.margaretwilliams.me/2007/corporate-collusion.pdf


    1. p. 87 - 88 “In response to an enquiry from a Member of Parliament, on 24th October 2003 Professor Colin Blakemore (who had just succeeded Professor Sir George Radda as CEO of the MRC) wrote:.....”

    2. Concern that the MRC classifies “CFS/ME” as a mental disorder p. 99 – 100

    3. Corporate Collusion, Concern about the uncritical acceptance of the “evidence” for the alleged effectiveness of CBT/GET – Blakemore meets the Countess of Mar p113-114

    ....................................


    Info on the MRC and ME from Blakemore’s time at the MRC:

    From http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf

    1. The MRC’s secret files on ME/CFS p 47 “It is hardly surprising that the ME/CFS community believes that there is no intention to address the psychosocial bias of the Wessely School.......”

    2. APPENDIX I: Dr Tony Johnson, Deputy Director of the MRC Biostatistical Unit, Cambridge – p 409-413

    .......................................


    Media articles by or featuring Colin Blakemore and CFS, he was involved in the whole ME patients slur campaign and Wessely's Maddox prize:

    1. https://www.thetimes.co.uk/article/...sted-that-me-was-a-mental-illness-t250dr25xg5

    This man faced death threats and abuse. His crime? He suggested that ME was a mental illness - Michael Hanlon

    2. https://www.thetimes.co.uk/article/disease-of-the-brain-not-the-mind-has-no-stigma-v903jglj6md


    Disease of the brain, not the mind, has no stigma - Reunite neurology and psychiatry and chronic fatigue extremists will stop their attacks
    By Colin Blakemore
    August 2 2011


    3. http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(12)61972-2.pdf

    Psychiatrist and journalist win prize for defending science In recognition of their efforts to champion science despite extreme opposition, a science journalist and psychiatrist have both received the 2012 John Maddox prize.
    Becky McCall reports May 5 2013


     
    Roy S, Hutan, MeSci and 5 others like this.
  7. Daisymay

    Daisymay Senior Member (Voting Rights)

    Messages:
    682
    And here’s the Gibson Inquiry Report and their comments re MRC, published when Blakemore was CEO.

    http://www.margaretwilliams.me/2006/gibson-me-inquiry-report.pdf

    Inquiry into the status of status of CFS / M.E. and research into causes and treatment treatment November 2006

    1.3 The Extent of the Problem

    1.4 The Cost

    5.2 Research Issues

    7.2 Areas for Further Examination

    7.3 The Immediate Future
    ......................................

    On the 1st May2003, the MRC published its CFS/ME research advisory group (RAG) research strategy report.

    1. https://www.mrc.ac.uk/documents/pdf/cfe-me-research-strategy/

    MEDICAL RESEARCH COUNCIL MRC CFS/ME RESEARCH ADVISORY GROUP CFS/ME RESEARCH STRATEGY

    2 . And the MRC summary of the report:

    https://www.mrc.ac.uk/documents/pdf/summary-report-cfe-me-research-strategy/

    3. Here is an article in response to the final MRC report by Hooper, Marshall and Williams:

    http://www.margaretwilliams.me/2003/ignoring-the-evidence-mrc_hooper-marshall-williams_5may2003.pdf

    IGNORING THE EVIDENCE? A response to the final version of the MRCCFS/ME Research Advisory Group Strategy of 1st May 2003


    4. And here is an article Margaret Williams wrote for David Tuller back in 2014 to fill him in on background info on ME. There is a short section on the MRC RAG report, plus it puts the report in context:

    http://www.margaretwilliams.me/2014/uk-governments-three-pronged-strategy-for-cfsme.pdf

    The UK Government’s three-pronged strategy for “CFS/ME”, Section 1 - The MRC Research Advisory Group (RAG) Draft Report on “CFS/ME Research Strategy
     
    Hutan, MEMarge, Sly Saint and 4 others like this.
  8. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    This looks to be not an entirely original idea. But I feel sure that an earlier writer would not have objected.

    It is concluded that the equal and opposite tendencies of psychiatry to be brainless and neurology to be mindless have led to needless controversy over the nature of CFS.

    SW The neuropsychiatry of chronic fatigue syndrome 1993.
     
    Woolie, MEMarge, Hutan and 2 others like this.
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,269
    Location:
    London, UK
    Thanks @Daisymay,
    The great thing about this forum is that the vital information is always at somebody's fingertips. I will upload that into my 'documentation folder' for detailed study later.
     
    MEMarge, Hoopoe, Barry and 9 others like this.
  10. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    If it be correct that the CMRC has cut links with the SMC it isnot before time.

    I had not previously noticed that article by Blakemore inAugust 2011. It appears odd that he should have been thought an appropriate person to judge the Maddox prize having apparently used the 18 year old ideas of one of the candidates in a prominent newspaper.

    Blind eyes seem to have been turned. It's easy when you know how.
     
    MEMarge, Barry and adambeyoncelowe like this.
  11. large donner

    large donner Guest

    Messages:
    1,214
    I just find it astonishing that BACME themselves get to decide if they merge with the CMRC, who the hell sent out the invitation? If this does happen then NOBODY has left the CMRC, not that I believe that anyone actually has 'left', in the same way I dont believe anyone can ever be a 'former' spy.
     
    Woolie, TiredSam, BurnA and 2 others like this.
  12. Trish

    Trish Moderator Staff Member

    Messages:
    51,858
    Location:
    UK
    Surely the CMRC will have to decide whether they merge with BACME. It doesn't seem a good fit - CMRC is research focused, BACME is, as far as I can guess, a backwater of therapists doing old unproven therapies and should probably be disbanded and all the therapists redeployed doing something useful.
     
    Woolie, MEMarge, Hutan and 11 others like this.
  13. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,768
    Location:
    UK
    They're not contemplating a merger, are they? I thought it was just that they were considering whether to hold a joint conference.
     
    dangermouse, Andy and Esther12 like this.
  14. large donner

    large donner Guest

    Messages:
    1,214
    Yes you are correct its the conferences they are considering merging. I still don't understand who gets to decide this and what's in it for the CMRC. Merging conferences is dodgy enough. Have the CMRC made a public statement on this issue?

    BACME is basically Peter White, Esther Crawley and the SMC, all the people who supposedly have left the CMRC.
     
    Last edited: Mar 21, 2018
  15. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,768
    Location:
    UK
    Not yet, that I'm aware of. It might have been an item to consider left over before they underwent their big change, and they may think differently about it now.

    I wasn't aware that the SMC had anything to to with BACME. Where did you see that?
     
    Hutan and dangermouse like this.
  16. large donner

    large donner Guest

    Messages:
    1,214
    I basically meant that BACME is the BPS crowd, including Wessely who is at the top of communications when it comes to ME in the revolving door between the SMC, BACME the BPS crowd and the idea of giving awards to your mates.
     
  17. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,768
    Location:
    UK
    BACME do look pretty weird from their website (so weird that I've started a thread on it). But I think it's important to distinguish between what we know and what is supposition. If we want to tackle dodgy organisations, we need solid facts.

    I don't doubt that some people within BACME have contact with Wessely and the SMC but I can't see far enough into that website to see whether those people are actually listed as part of the organisation.
     
    MEMarge, Londinium, Jan and 5 others like this.
  18. Tilly

    Tilly Senior Member (Voting Rights)

    Messages:
    350
    Is this the same chap that is part of this http://www.fndaction.org.uk/what-is-fnd/
    It seems they are trying to get Neurological Functional Disorder (FND) part of NICE asked for by the NHS that seems to be going through a scoping at the moment https://www.nice.org.uk/guidance/gid-cgwave0800/documents/final-scope
    With change at the WHO This is taken from the FND Action site:
    FND overlaps both neurology and psychology, and this is reflected in the confusing array of names that are used to describe FND. As understanding of functional neurological symptoms has advanced, so has the debate among medical professionals regarding the diagnostic criteria and terminology as can be seen with reference to the 11th revision of the World Health Organisation’s International Classification of Diseases (ICD-11).[1]
     
  19. Jan

    Jan Senior Member (Voting Rights)

    Messages:
    498
    When will we ever be safe, FNDers sound even more sinister than BPS.

    Medical Advisory Board
    Dr Richard Brown
    Senior Lecturer in Clinical Psychology and Honorary Consultant Clinical Psychologist, University of Manchester

    Dr Alan Carson
    Consultant Neurologist and Honorary Reader, Western General Hospital, Edinburgh

    Professor Trudie Chalder
    Professor of Cognitive Behavioural Psychotherapy, Kings College, London

    Professor Anthony David
    Professor of Cognitive Neuropsychiatry and Vice Dean Academic Psychiatry, Kings College, London

    Professor Mark Edwards
    Professor of Neurology, St George’s University of London

    Dr Rob Forsyth
    Consultant Paediatric Neurologist at the Great Northern Children’s Hospital, and Senior Lecturer at Newcastle University

    Paula Gardiner
    Neurospecialist Physiotherapist/CBT Therapist, Western General Hospital, Edinburgh

    Jeannette Gelauff
    PhD Research Fellow in Neurology, University of Groningen, Netherlands

    Professor Laura Goldstein
    Professor of Clinical Neuropsychology, Institute of Psychiatry, Psychology and Neuroscience, London

    Dr Ingrid Hoeritzauer
    PhD Research Fellow in Neurology, University of Edinburgh

    Carrie Lumsden
    Specialist Occupational Therapist, Community Rehabilitation and Brain Injury Service, West Lothian, Scotland

    Dr Elizabeth Mallam
    Neurologist, Southmead Hospital, Bristol

    Glenn Nielsen
    Research Fellow & Physiotherapist, St George’s University of London

    Dr Timothy Nicholson
    Clinical Lecturer & Consultant Neuropsychiatrist, Institute of Psychiatry, Psychology & Neuroscience, Kings College, London

    Dr Wendy Philips
    Consultant Neurologist, Addenbrooke’s Hospital, Cambridge

    Dr Jason Price
    Consultant Clinical Neuropsychologist, The James Cook University Hospital, Middlesbrough

    Professor Markus Reuber
    Professor of Clinical Neurology, University of Sheffield

    Dr Jon Stone
    Consultant Neurologist and Honorary Reader, Western General Hospital, Edinburgh

    Dr Sumeet Singhal
    Consultant Neurologist, Queen’s Medical Centre, Nottingham

    Dr Valerie Voon
    Neuropsychiatrist and Neuroscientist, University of Cambridge
     
  20. JohnM

    JohnM Established Member (Voting Rights)

    Messages:
    53
    Do you have any further updates about this study Russell?

    For my part, I'm wondering if the study discussed here on our forum - Mechanisms of chronic pain and fatigue [Trial in progress, April 2018] - is relevant? It is uncannily similar in concept to the 'add-on' study, that was outlined by Mark Edwards at the 2015 CMRC Conference, on my reading - transcript here again for those interested - even though this study is funded by Arthritis Research UK, and contact details make no mention of Dr Neil Harrison that I can find to date?

    Would raise some serious issues of concern, if my suspicions are well founded?

    Wishing everyone improved health, and every happiness. John :)
     

Share This Page