By H Goodwin:
If Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) actually worked, you would hear lots of stories about cured patients. Can anyone remember having heard such stories? Do you know anyone who has been ‘cured’ by these methods?
Or are you still reading and hearing lots of stories about uncured, long-term patients?
The UK establishment is about to release something called the PACE study, which is their attempt to prove the efficacy of these therapies. The study is chronically over-budget and over-schedule, and has had to extend to seven centres instead of the planned 2 because they could not get enough patients to enrol or stay on the study. In desperation, it has also accepted patients without a proper diagnosis of ME/CFS according to any of the accepted international criteria, instead accepting those who simply complain of ‘being fatigued’ for other clinical and non-clinical reasons.
Scientifically, it’s a travesty, but the aim is political – to safeguard the investment of those who provide CBT/GET services to the UK’s NHS; to prevent members of UNUM (insurers) from having to pay out, and to remove as many patients from state benefits as possible.
Unlike the US, our media sold their souls to the last Government which set up the ‘UK Science Media Centre’ to vet all scientific announcements. The media has agreed only to print what the SMC tell them to, thus extinguishing any genuine journalistic enterprise. The person on the SMC responsible for ME/CFS is a psychiatrist. The same psychiatrist chairs the PACE study, and has significant financial interests in the companies providing CBT and GET services to the NHS.
So, as you can see, we are in a bit of a bind in terms of making any progress in this area, or getting any focus on it, and for this reason, I would like to thank David Tuller for his careful, balanced reporting, and the NY Times for syndicating the article so that it can be seen worldwide.
— H Goodwin
4 comments:
This seems like a very mean thing to say but I wish every unscrupulous medic involved in this farce would get M.E (the real thing), have their lives changed irrevocably, as we all have. Then they might sit up and listen.
I think part of the solution is to prosecute crimes against humanity in the visible heads that have obscured the severity of this condition. As the evidence is amply demonstrated, and there are numerous witnesses and evidence ,..., and millions of victims (many now deceased, and others by falling or contaminated) by the delay in investigations, these enemies of humanity must be duly punished.
If you can inject XMRV a monkey, then these primates unsympathetic, greedy and merciless that have profited and withheld information regardless of the suffering of millions of people, must be the missing link between macaques and humans for progress of research.
Its entities are to be used for all types of drug testing next generation by the WPI and related laboratories. In case of death must be donated to science for the complete dissection of their bodies in order to find more evidence.
Unlike them and as a compassionate, I suggest that aside from the good treatment accorded them in secure laboratories, be assigned a professional psychologist take many years to frentre of an association of patients with FM / CFS / MCS, or autism or various types of cancer, and will have opportunity to have contact with mercy, while serving in something useful to the community.
Someone may be shocked at discharge in these lines, but I urge you to think in terms of proportionality, the balance is tilted sobradamerte. Of us, citizens, to ensure that these instruments be used as little as possible.
If anyone doubts that this is an unequal war without quarter and without honor codes, the reality will finish prostrating to that evidence.
The PACE Trial was always originally planned for six centres, not two as it states in the commentary above.
From 2004, under FOIA:
"Participants will be attending one of six specialist chronic fatigue services in the UK."
From the 2004 PACE Trial Identifier Document:
"Six specialist clinics in England and Scotland, over 4 years. [Edinburgh, Oxford, St Bartholomew's X 2, Kings College Hospital and the Royal Free hospital]..."
A clarification to my comment above:
The PACE Trial was announced in 2003.
The PACE Trial Identifier document, published by the ONE CLICK Group in April 2004, states that six centres were planned to be used but does not name them:
http://www.theoneclickgroup.co.uk/documents/PACE/THE%20PACE%20TRIAL%20IDENTIFIER%20.pdf
A statement issued by Chris Clark (then CEO of Action for M.E. who held a seat on the PACE Trial committee between 2004 and 2006)in April 2004 identified the names of the six centres:
"Six specialist clinics in England and Scotland, over 4 years. [Edinburgh, Oxford, St Bartholomew's X 2, Kings College Hospital and the Royal Free hospital]..."
In May 2004, the ME Association issued a position statement on the PACE Trial in which they state that:
"The PACE trial will be led by Dr Peter White (Saint Bartholomew's Hospital, London), Professor Michael Sharpe (University of Edinburgh), and Professor Trudie Chalder (King's College Hospital, London) - all of whom work in the area of either psychiatry or psychological medicine.
"600 patients will be recruited from six different specialist ME/CFS clinical centres across the UK. These are situated in Edinburgh, Oxford and London (Saint Bartholomew's Hospital x2, King's College Hospital, Royal Free Hospital)."
So it was known since early 2004 that at some point, six centres would be involved in recruiting participants and also the names of these centres and lead clinicians.
A 7th centre - Frenchay, Bristol, was announced later, in 2007.
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