Monday, 5 April 2010

You're not paranoid if they are out to GET you: Part 1

Invest in ME have updated their page on the Magical Medicine report and Malcolm Hooper's attempts to get anyone to actually engage in debate.

In an earlier entry, I reported back on the pathetic response he got from NICE, who saw fit to return the report unread with a refusal to discuss the matter at all. Now, I don't expect NICE to be fluffy bunnies - they are all about saving money and openly so. But they do call themselves the National Institute for Clinical Excellence. So when people point out that they are not abiding by their own guidelines, when people feel some of their guidelines are so far from correct that they take them to court, when someone sends them a report of over 400 pages detailing the misrepresentation of ME and the mass of evidence for it not being a somatoform condition...well, one does rather feel they might come up with a more dignified and intelligent response than sticking their fingers in their institutional ears and going 'la la la...can't hear you...'

Professor Hooper never gives up on us, though, and continues to try to get someone in any kind of position of power to listen to his painstakingly-researched concerns.

His most recent missive winged its way to the MRC on 30th March and I reprint it below. He has now lodged a formal complaint about the PACE trial with the relevant Minister (though one wonders if he might not have done better to just send it to the Shadow version at this stage!).

The MRC are, of course, the lovely people with the Super Secret Files (I kid you not, mostly because you couldn't make this stuff up) on ME. The file in question, is held in the National Archives at Kew (formerly called the Public Record Office - I preferred the old name, by the way, which implied the information was held there for us, the public! ) - its 'closed' period has been recently extended from ending in 2023 to ending in 2071. By which time, as Margaret Williams points out, most current ME sufferers and campaigners will be 'conveniently dead'.

You can read here an account of Nicola Reiss's experience when she tried to see these files or be given a sensible reason why she should not be allowed so to do...another account I have read tells of how the enquirer was put through to an employee at Kew whose dedicated task is to take calls enquiring about 'those documents' - who read them a script on protecting privacy of individuals and answered no direct questions.

Now, my last job before ME kicked me in the head was in a local archive office. So I get the closure of hospital records etc. But we are talking here about people who amongst other things gave evidence to an inquiry. An inquiry meant to deal with a public concern. Their privacy can be protected perfectly adequately by the astonishingly complex means of getting a marker pen and blacking the names out. Do correct me if I'm wrong? So you have to be a very laid-back kind of ME girl to not wonder at this point - what is it they don't want us to know? As an historian, as a human being with an alleged IQ somewhere above pond slime, seemingly gratuitous suppression of information makes me automatically suspicious. My gut tells me this is not quite on the level, somehow, some way. I promise myself an attempt to view these documents, so I can report back for myself on what happens...

But for now, here's Professor Hooper. Please wish him luck, everyone.

LETTER to Dr Morven Roberts, Clinical Trials Manager, UK MEDICAL RESEARCH COUNCIL

from Professor Malcolm Hooper

From Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry
School of Sciences

Fleming Building
Wharncliffe Street
University of Sunderland

30th March 2010

Chief Scientific Adviser to the Gulf Veterans' Association
President: the National Gulf War Veterans and Families Association, NGVFA, (2002)
Dear Dr Roberts,

re: MRC PACE Trial
You will doubtless be aware from Lord Drayson (the Minister with responsibility for the MRC) that on 11th February 2010 I lodged a formal complaint with him about the PACE Trial (reference 2010/0013270POLD).
There were three reasons for going directly to him instead of to you in the first instance, as would have been customary:
1. In response to a formal complaint made in November 2004 by an alpha-rated former MRC grant-holder, and despite the involvement of the then Science Minister, Lord Sainsbury of Turville (reference SAMP001/040728) and Dr Rudi Vis MP, the MRC External Communications Manager, Elizabeth Mitchell, had already made plain that the MRC is not interested in considering complaints about the PACE Trial.
2. By lodging a complaint with the MRC Clinical Trials Manager, we are mindful of the fact that the person intimately involved with the PACE Trial, Professor Simon Wessely, is in charge of the PACE Clinical Trial Unit.
3. Given that the MRC is co-funding the PACE Trial, inviting the MRC to consider this substantial complaint would seem to be inviting the MRC to be both judge and jury in its own court – hardly consistent with the most elementary standards of independence and justice.
However, following the advice of Lord Drayson, a copy of "Magical Medicine: how to make a disease disappear" is enclosed, which sets out our concerns in detail.
Many members of the international research community are monitoring the PACE Trial particularly in the light of –
-The total failure to engage with the vast body of significant biomedical evidence about the nature of ME/CFS contained in more that 4,000 published, peer-reviewed research papers.
-The misleading and contradictory content of the Trial manuals demonstrating the apparent coercion, and exploitation of patients.
-The seriously flawed and inadequate science that under pins the Trial.
We have taken much time and great care in compiling the evidence presented in ‘Magical Medicine’ and I look forward to receiving your reasoned response to our legitimate concerns expressed therein.
I would, therefore, appreciate an informed and considered reply and not the standard and dismissive MRC proforma letter that has been sent to many people who have already written expressing their concerns about the inadequacy of the PACE Trial.
Yours sincerely

Malcolm Hooper

Enc. “Magical Medicine: how to make a disease disappear.”
Dr Morven Roberts
Clinical Trials Manager
20 Park Crescent

1 comment:

  1. Hi!

    Please forgive this less than personal comment!

    I've just sent this letter to a few doctors, psychiatrists, and psychologists whom I know personally. I urge you to do the same. Thanks.

    Dear Dr XXX

    I know how busy you must be, however I feel this situation is an urgent one for hundreds of thousands of people across the UK and the world, and your specific contribution can help save many ME/CFS sufferers from the dangers of being falsely labelled as psychiatric cases and thus denied more appropriate medical care.

    I urge you to write a comment advising against the proposed new category "Complex Somatic Symptom Disorder" in the DSM-5. Comments coming from medical professionals will hold far more weight than comments from others.

    The proposed revisions are discussed here:

    Their cautious wording sounds benign, but the end result for patients with a serious medical (not psychiatric) condition is far from benign. The most extreme case in the UK involved the death of Sophia Mizra who died of ME after being institutionalized in a psychiatric ward (see: and also: and:

    Please also read the letter from the International Association for CFS/ME commenting on the DSM-5:

    and especially the letter from Mary Schweitzer, which can be found here, the last item on this page:

    Dr. Schweitzer's eloquence speaks for many hundreds of thousands of people suffering from ME. I do hope this will persuade you of the importance of also writing on our behalf. The deadline for comments is 20 April 2010. Please write now! The instructions for how to do this can be found here: under the item labelled: Important Alert to the CFS/ME Community

    Please feel free to pass this message on to other health professionals.

    Thank you very much indeed.