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

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.)

 

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.

 

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.

 

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.

 

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

 

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

 

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.

 

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.

 

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.

 

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.

 

They're not contemplating a merger, are they? I thought it was just that they were considering whether to hold a joint conference.

 

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.

 

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?

 

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.

 

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.

 

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]

 

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

 

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