Peter White's new GET trial

pictureofhealth

XMRV - L'Agent du Jour
Messages
534
Likes
7
Location
Europe
Another aspect of the GET and CBT strategy which mystifies me is this:

If ME is an 'illness belief', as some psychiatrists have suggested, it is highly likely that these beliefs would reside, if anywhere, in the sub conscious mind of the patient, (as no ME patient seems to be aware of them), rather than the conscious mind.

Why then, use 2x tools which effectively rely on conscious reprogramming and/or repetition and/or willpower, if you believe ME patients to have these 'faulty beliefs', rather than techniques designed to effortlessly address the subconscious mind specifically, such as hypnosis for eg?

ME patients can't 'do' repetition, or cognitive focusing, or will power, (physical or mental), for very long anyway, so these CBT/GET 'rehab' methods are likely to be particularly ineffective especially with ME patients, even if they work as 'coping strategies' for other illnesses such as cancer, where patients also receive pharmaceutical and surgical interventions for their physical condition.

It is such a lot of hard to work to try to reprogramme thinking and behaviour with cognitive (conscious mind) interventions (repetition being one of the main routes by which the benefits eventually filter down to the subconscious mind). We know this just by recognising how difficult it is for people trying to lose weight by eating less, or alcoholics trying to stop drinking, by conscious affirmations and conscious behaviour reprogramming.

And also, 'maladaptive behaviour' almost certainly arises as a protection/prevention or survival mechanism for something else. Changing someone's surface behaviour without going to the root, will simply encourage some other maladaptive coping strategy to surface. (ie Say for eg. the inability of an ME patient to walk is founded on some deep rooted subconsious 'belief' somewhere, how will consciously forcing oneself to walk/or being forced to walk, and upping the level of pain and disability, change a subconsious belief? The subconscious will simply rise up in protest, rebel or put its foot down - like the man with the coat on a windy day. Only sun can make the person take the coat off).

Psychiatrists often remind me of a toddler with a play set trying to bash a square peg into a round hole with a plastic hammer. It won't fit obviously, every adult watching them knows this, but the child seems unaware and can't understand why the square peg won't fit. Eventually they grow up and 'get it'. This learning process is very endearing to witness in a 3 year old, but totally worrying and inappropriate behaviour in a professional adult who seems incapable of changing their world view in face of the evidence. And yet this is what psychiatrists are doing - still trying to bash square pags into round holes and then throwing their plastic hammer at the patient when they won't fit!

ie. Whichever way you look at it, even if these psychiatrists are totally right and ME is a 'faulty belief - a belief that they have ME' etc - the tools they are using to address it are spectacularly inappropriate, a total 'fudge' in fact.
 
Messages
1,446
Likes
3,623
All of the millions of syllables expended discussing CBT/GET, treatments that are based on the model of ME that says ME is faulty/false illness beliefs and that the exhaustion is simply deconditioning. Insurance companies don’t have to pay out if the disabling illness is psychiatric – there is a 24 month limit on payments.

http://www.mrc.ac.uk/Utilities/DeclarationsofInterest/MRC006493
Peter White




From the ‘CFS’ PACE Trial Principal Investigator (Researcher) Professor Michael Sharpe’s contribution to Health Insurer Unum’s Chief Medical Officer’s Report Report 2002 :

http://www.unumprovident.co.uk/Home/AccessiblePDF/CMOReport2002.htm#3

'It is becoming increasingly clear that the problem of patients who have illness that is defined only subjectively and not clearly explained by disease is a large one. There is a great deal of confusion about what to call such illness. A wide range of general terms has been used including “hysteria”, “abnormal illness behaviour”, “somatisation”, and “somatoform disorders”. Recently the terms “medically unexplained symptoms (MUS)” and “functional” symptoms have become popular amongst researchers, as they do not assume any particular aetiology.

Obstacles to Recovery

“In practice, even if treatment is available, there may be obstacles to recovery. Over time, the patient’s beliefs may be become entrenched and be driven by anger and the need to explain continuing disability. The current system of state benefits, insurance payments and litigation remain potentially major obstacles to effective rehabilitation. It is often unrealistic to expect medical treatment alone to overcome these. Furthermore patient groups who champion the interest of individuals with functional complaints (particularly for chronic fatigue and fibromyalgia) are increasingly influential….. Again the ME lobby is the best example”.





http://www.publicmentalhealth.org/page.cfm?orgId=749&pid=30424

Professor Sir Mansel Aylward CB MD FRCP FFOM FFPM - Advisory Board Chair

Professor Sir Mansel Aylward CB is the first-ever Chair of Public Health Wales – a new unified NHS Trust responsible for the delivery of public health services at national, local and community level in Wales. He was Chair of the Wales Centre for Health, an Assembly Government Sponsored Body established to be the ‘hub of connected organisations’ and to communicate better health messages to the people of Wales.

He is also Director of the Centre for Psychosocial and Disability Research at Cardiff University which offers a unique opportunity to extend knowledge and understanding of the psychosocial, economic and cultural factors that influence health, illness, recovery, rehabilitation and reintegration.

Professor Sir Mansel Aylward CB was knighted in the Queen’s New Years Honours 2010 for services to health and healthcare…..

….He played a key role in development and evaluation of the UK’s medical assessment for incapacity (the All Work Test), and was heavily involved in developing the Personal Capability Assessment (PCA). He led the Corporate Medical Group on the UK Government's Welfare Reform initiatives and made a major contribution in establishing the new postgraduate diploma for doctors in Disability Assessment Medicine. He was closely involved in developing the UK’s successful “Pathways to Work” initiatives and a framework for Vocational Rehabilitation. He is keenly interested in addressing the health, work and social issues relevant to morbidity, mortality, work, economic inactivity and social exclusion in the South Wales Valleys where he was born and brought up. His interests are in rheumatology and rehabilitation, health and productivity, psychosocial illnesses, health inequalities, chronic fatigue syndromes and back pain disability. He has published widely in these various areas.
 
Messages
1,446
Likes
3,623
To elaborate on the post above re Professor Mansel Aylward and UNUM Provident. The label 'psychosocial disabilites' saves governments millions, as well as the health insurance industry.



http://www.unum.co.uk/Home/Corporate_Information/Press_Releases/2006/Book_Launch.htm

UnumProvident hosts The Scientific and Conceptual Basis of Incapacity Benefits book launch

1st February 2006



Up to 1 million IB recipients could potentially return to work, say book’s authors


UnumProvident, the UK's leading disability insurer, has hosted the launch of a new book, The Scientific and Conceptual Basis of Incapacity Benefits, written by Professors Gordon Waddell and Mansel Aylward, both at the UnumProvident Centre for Psychosocial and Disability Research, School of Psychology, Cardiff University. The launch event took place on the 31st January at the Savoy Hotel in London.


The book, written by two of the most influential opinion formers in the area of incapacity benefit, explores in detail the social issues surrounding the large rise in the number of Incapacity Benefit recipients over the last three decades and proposes a logical framework for tackling them. This includes addressing the way in which financial benefits should be structured, but also proposing a whole new approach to the overriding issue of workplace absence arising from sickness and disability.


The evening was introduced by Dr Peter Dewis, UnumProvident's Customer Care Director and followed by presentations from Bert Massie, Chair of the Disability Rights Commission and Kevin Fitzpatrick, DRC Commissioner for Wales who are eminently placed to comment on the issues raised in the book.
There was also a presentation from Lord Archie Kirkwood, former Chair of the Work and Pensions Select Committee.


UnumProvident has long campaigned for reforms of the Incapacity Benefit system and welcomed the proposals outlined in the recent IB Green Paper. The insurer believes that the system to date has been overly complex for claimants, too slow to respond to conditions when they are in their infancy and does not provide sufficient incentive for people seeking a sustainable return to work.


Commenting on the book launch, Professor Gordon Waddell said:
Incapacity benefits contain a fundamental paradox: claimants must demonstrate their incapacity for work to establish and maintain entitlement to benefits, but obtaining or returning to work depends on their capacity for work. Too often, long-term incapacity writes people off, creates negative expectations and welfare dependency, and traps people on benefits until retirement age.


Professor Mansel Aylward added:
Benefit reform should be led by more active support into work, tailored to suit individual needs and designed to overcome the health-related, personal and social barriers to work. Up to one million IB recipients could potentially take up or return to work, provided they were given the right opportunities, support and incentives.


UnumProvident's Dr. Peter Dewis said:
We are delighted to be involved with the launch of this book as rehabilitation is an issue that is core to UnumProvident's business proposition. As our own rehabilitation processes have shown, effective and early intervention can help a large number of people back to work and it is often important to look at the root of the absentee's situation, which may be affected by psychosocial factors, rather than simply treat the physical symptoms.
For further information or a copy of the executive summary of the book, please contact John Hutson on 01306 873471.


ENDS

Last Updated:09 August 2007
 
Messages
1,446
Likes
3,623
The health insurance industry and 'CFS'


Professor Mansel Aylward of UNUM again:

Royal Society of Medicine 2008 CFS Conference (known as ‘The Psychiatrists Conference’)

http://www.rsm.ac.uk/academ/e10-npr.php

RSM conference
08 February 2008

Action for M.E. Chief Executive, Peter Spencer, will be one of the speakers at a conference of healthcare professionals at the Royal Society of Medicine (RSM) in London, 28 April 2008.

The RSM says the aim of the meeting is to take a broad look at chronic fatigue syndrome, examining its nature and definition, pathophysiology, epidemiology, clinical assessment and diagnosis, the patient perspective, and various approaches to treatment. It says: This is a scientific conference and there will be an emphasis on an evidence-based approach throughout…..

After a welcome address by Dr John Scadding, Dean, Royal Society of Medicine, who will Chair the first session of talks, questions and answers. Professor Peter White, Barts will lead a session on What is CFS and what is M.E.?

Dr Anthony Cleare, Institute of Psychiatry, will discuss Pathophysiology. Action for M.E.’s principal medical adviser, Professor Anthony Pinching, will chair a session opened by Professor Chris Dowrick, University of Liverpool, on Assessment: the GP’s approach. Another session, Assessment: the psychiatrist's approach, will be presented by Professor Matthew Hotopf, Institute of Psychiatry…...


…The first afternoon session, which Peter Spencer will open, will be Chaired by Professor Mansel Aylward, Unum Provident Centre for Psychosocial and Disability Research, Cardiff University. Delegates will hear about Management: the NICE Guidelines, from Professor Richard Baker, Leicester University. The final session of the day, Chaired by Professor Kam Bhui, Department of Psychiatry, Queen Mary School of Medicine and Dentistry, will look at CBT and GET with Professor Rona Moss-Morris, University of Southampton and What drugs can I use?, with Dr Alastair Miller, Royal Liverpool University Hospital.




~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~




CFS/ME Clinical & Research Network & Collaborative (CCRNC) 2009 Conference

http://meagenda.wordpress.com/2009/...-network-collaborative-ccrnc-2009-conference/

…..‘This year’s Keynote Speakers will be Professor Mansel Aylward, Director of Unum Centre for Psychosocial and Disability Research (CPDR), University of Cardiff on “Pathways to work (exact title tbc)“ and Professor Christine Heim, Department of Psychiatry and Behavioral Sciences, Emory University School of Medicine, USA who will address the conference on “Early Adverse Experience as a Risk factor for CFS: A Psychobiological Perspective”.


What is there to say, other than that Action for ME and AYME’s endorsement of these conferences is enough to make you weep.’
 
Messages
5,902
Likes
12,696
Location
South Australia
Any trial for a pharmaceutical treatment would be laughed at without a placebo control but for some reason many researchers trialling non-pharmaceutical treatments seem to think they needn't bother.
How exactly can GET (or CBT for that matter) be truly placebo controlled? It is obvious whether you are doing the treatment protocol or not.

Perhaps a pharmaceutical treatment as well as a placebo in place of the drug should be undertaken at the same time. Interestingly, the Lloyd CBT/pharmaceutical trial did not demonstrate significant benefits of CBT..
 

wdb

Senior Member
Messages
1,392
Likes
2,975
Location
London
How exactly can GET (or CBT for that matter) be truly placebo controlled? It is obvious whether you are doing the treatment protocol or not.

Perhaps a pharmaceutical treatment as well as a placebo in place of the drug should be undertaken at the same time. Interestingly, the Lloyd CBT/pharmaceutical trial did not demonstrate significant benefits of CBT..
Your right, I can't think of any way GET could be truly placebo controlled, although conducting a randomized controlled trial can be done, this is the only one I know of http://www.ncbi.nlm.nih.gov/pubmed/9180065 it compares GET with flexibility exercises, I think the placebo group could be much better designed as flexibility training probably doesn't lead to comparable expectation of improvement, but definitely a step in the right direction. I think inclusion of a pharmaceutical treatment group would also be an excellent idea.
 

Dolphin

Senior Member
Messages
17,556
Likes
28,246
Your right, I can't think of any way GET could be truly placebo controlled, although conducting a randomized controlled trial can be done, this is the only one I know of http://www.ncbi.nlm.nih.gov/pubmed/9180065 it compares GET with flexibility exercises, I think the placebo group could be much better designed as flexibility training probably doesn't lead to comparable expectation of improvement, but definitely a step in the right direction. I think inclusion of a pharmaceutical treatment group would also be an excellent idea.
There is also the following which is an NIH-funded study. The pacing arm came out better than the CBT arm, the exercise arm and the relaxation/flexibility/yoga arm:
Jason, L.A., Torres-Harding, S., Friedberg, F., Corradi, K., Njoku, M.G., Donalek, J., Reynolds, N., Brown, M., Weitner, B.B., Rademaker, A., & Papernik, M.(2007). Non-pharmacologic interventions for CFS: A randomized trial. Journal of Clinical Psychology in Medical Settings, 14, 275-296.
It's available for free at: http://www.cfids-cab.org/cfs-inform/CFStreatment/jason.etal07.pdf
 

wdb

Senior Member
Messages
1,392
Likes
2,975
Location
London
There is also the following which is an NIH-funded study. The pacing arm came out better than the CBT arm, the exercise arm and the relaxation/flexibility/yoga arm:

It's available for free at: http://www.cfids-cab.org/cfs-inform/CFStreatment/jason.etal07.pdf
Thanks for that, it's an extremely interesting study and quite a significant win for pacing or 'cognitive' as they (slightly misleadingly) call it. No wonder the supporters of psychological disease models are reluctant to have their treatments directly compared to other types of treatment.
 

Enid

Senior Member
Messages
3,309
Likes
868
Location
UK
Seems to me these things are a diversion (may or may not aid at certain stages only) We want to know the pathogenisis which brings this disease and relapses - only then can be treated fully. Hey are the Psycos shedding any light despite their "golly we got all the answers".