Discussion in 'General ME/CFS News' started by Kati, Feb 22, 2010.
This is a strong letter full of evidence.
Kati - thanks for posting this. It is brilliant! Well done Professor Hooper and thank you. He is our U.K. champion and thank goodness he is prepared to tell the truth. I do hope that he will make public the response.
Thanks for such an encouraging post.
Thanks for posting this Kati...what a fantastic letter!! As you say it is very well & strongly argued and I think its really important that he highlights the issues of "professional misconduct" and "medical indemnity"....too right!!! It is very encouraging to know that he is really on the case and fighting for us. What a hero.
It will be interesting to see what Rawlins has to say in response, if it is made public.
Well done Malcolm!!! :victory:
Kati thanks for posting this letter it has made my day - what a great guy to have on our side. Hope some good comes from it, I'm sure it will given his status.
Whoo hoo! I love it! "I am a blast from your past!" hee hee hee
Go Hooper!!!!!!!!! :victory::victory::victory:
It is a brilliant letter!
If only Malcolm Hooper was leading us full time. I would be somewhat less embarrassed to be British.
Fantastic letter!!! Does anyone else feel that the momentum is starting to roll with CFS/ME..from many different areas? :Retro smile:
I have met Malcolm Hooper and he is a really lovely unassuming modest kind man.
Isn't Hooper brilliant!:victory::victory:
I've just sent a copy to my GP :Retro smile: :worried: :victory: along with a copy of the Light research from the Journal of Pain. I so hope he reads it.
I've set my DVD recorder ready to record the discussion on ME in the House of Commons tonight. Should be interesting! :Retro wink:
So have I and I totally agree.
Proffesor hooper's brilliant letter to nice and their shocking reply
Professor Malcolm Hooper has just received a reply to the letter he recently sent to Sir Michael Rawlins, the head of NICE.
Bit of background info - NICE, National Insitute of Clinical Excellence, is the organisation over here in the UK which decides, supposedly based on the scientific evidence, which treatments/drugs are to be allowed on the National Health Service for each disease.
Of course in the case of ME/CFS science does not come into it - they ignore ALL the biomedical evidence and base the treatments allowed, CBT/GET, solely on Wessely and colleagues papers. When researchers, patients and charities contacted them to complain they merely said it wasn't in their remit to look at the biomedical evidence, they were only looking at treatments and as the only treatment papers are on CBT/GET and all these papers, written by psychiatrists, also ignore all the biomedical evidence that was it, they managed to completely airbrush all the biomedical evidence out of existence.
Now 2 years later these guidleines will be coming up for review in August and NICE will be using the results of the PACE trail to show how wonderful CBT/GET are at curing/treating ME/CFS and to set these treatments in stone for the next n years. The PACE trail is run by Professors White, Sharpe and Chalder with Wesely head of the MRC PACE Clinical Trial Unit, all the usual suspects.
Professor Hooper has spent the last nine months writing his truly shocking, scholarly report, Magical Medicine, which completely blows apart the PACE Trial, in a forensic,scientific manner.
So professor Hooper sent this 442 page report along with a formal letter of complaint to the head of the Medical Research Council, who funded most of the PACE trial. 3 weeks on and he is still to recieve any response or acknowledgement from the MRC.
He also sent out the following letter to Sir Miichael Rawlins, the head of NICE. It is an absolutely brilliant letter:
19 February 2010
Dear Sir Michael,
I am a blast from your past. I was at Sunderland School of Pharmacy and you were at Newcastle in Clinical Pharmacology when the M.Pharm course in Pharmacokinetics was developed. Congratulations on your eminent status and knighthood.
Since 1997, when I retired as Professor of Medicinal Chemistry, I have been involved with the emerging and widespread complex chronic multi-system illnesses (Gulf War Syndrome/Illness, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, ME/CFS, multiple chemical sensitivity, MCS, Aerotoxic Syndrome, organophosphate and other pesticide poisonings) that are of growing concern and are medically challenging -- writing and lecturing, locally, nationally and internationally.
This letter is linked to my concerns about ME which involves some 240,000 people in the UK with varying degrees of disability. Some 25% are housebound or bed bound and have formed their own group, www.25megroup.org/ .
The 442 page report Magical Medicine, how to make a disease disappear, copy attached with the press release, together with a copy of my letter to the Minister, Lord Drayson, currently the Minister responsible for the MRC, brings together an extensive and fully referenced review of the literature on ME.
It provides the evidence supporting my complaint about the MRC PACE Trial to Lord Drayson.
The entire report, the press release and the letter of complaint have now been circulated worldwide on the internet and have received much acclaim and support from the major ME organisations in various countries and numerous individuals, as well as academic institutions. The report is to be discussed by the International Association of CFS/ME at its next board meeting in early March, as confirmed by the President, Professor Fred Friedberg from the US.
Despite the vast amount of biomedical literature (some 5000 papers) going back to 1934 and the classification of ME as a neurological illness by the WHO (ICD-10 G93.3) since 1969, the official UK attitudes as demonstrated by the MRC, DWP, Department of Health, and to some extent your own organisation NICE:
a. ignore all this evidence
b. show an ideological commitment to a psychosomatic/behavioural model of the illness which is no longer tenable
c. recommend only cognitive restructuring techniques (CBT and GET) that are not remotely curative and have been shown to be of no lasting value and in the case of GET to be positively harmful (Peter Whites assertion that this is because the interventions have been incorrectly administered has been shown to lack credibility)
d. proscribe any investigative tests to identify the disorder, leading to missed diagnoses and misdiagnosis
e. support cruel, even vicious, actions that lead to patients being wrongly sectioned and parents, particularly mothers, accused of Munchausens-Syndrome-by-Proxy, MSBP.
f. the result is that essential benefits and insurance payments to support patients and their families have not been paid or have been granted only after protracted and expensive legal action. All this adds to the burden of the illness for patients and for those who care for them.
The psychiatrists argument that what they refer to as CFS/ME is substantially different from past epidemics of ME does not withstand scrutiny in the light of current knowledge. It is beyond question that ME is associated with a severely disrupted immune system which renders patients more susceptible to both further viral and chemical challenge and reactivation of latent viruses and persistent viral-specific symptoms.
For the psychiatrists to amalgamate 25 different disorders (Holgate, RSM July 2009) and to focus on medically unexplained fatigue whilst ignoring cardinal symptoms of ME is a travesty of medical science.
Of special concern and relevance are the legal and ethical requirements facing doctors today, in particular, the legal requirement for doctors to keep up to date with developments in medicine and medical science (as clearly set out in Good Medical Practice: Duties of a doctor. The duties of a doctor registered with the General Medical Council: 'Keep your professional knowledge and skills up to date' and 'Never abuse your patients' trust in you or the public's trust in the profession' (http://www.gmc-uk.org/guidance/good_medical_practice/duties_of_a_doctor.asp).
Ignoring vast swathes of evidence is not keeping up to date. For any registered medical practitioner consultant or GP -- to dismiss or ignore this widely available evidence which invalidates the behavioural model of CFS/ME, together with the prescription of inappropriate interventions, is in clear breach of the GMC regulations and consequently raises issues of medical indemnity.
As noted in the report: since the general body of knowledge known about by other clinicians and researchers working in the field of ME/CFS is now so great, the question repeatedly asked is: at what point will that body of scientific knowledge be so great that it will be considered serious professional misconduct to ignore it and to continue to deceive patients by pretending that it does not exist?.
The recommendation not to carry out appropriate investigative tests is inconsistent with the Hippocratic Oath in its ancient or modern form.
The offering of treatment that is known even by its proponents to be ineffective is a betrayal of doctors responsibility to their patients. Merely to pronounce that the onus is on the individual doctor, when adherence to NICE Guidelines is to become compulsory, is unacceptable.
Inappropriate sectioning of patients and false diagnoses such as MSBP represents a further betrayal.
To rely on only a few studies, showing very modest efficacy, all of which having been shown to have very serious flaws (as is the case with the PACE Trial) and enshrine this inadequate information in official directions, publications and statements from authorised bodies, including NICE, is utterly unacceptable and dishonours the name of medicine as well as being destructive of lives of sick people and those who care for them.
I draw to your attention the commissioned editorial in last weeks BMJ by Alistair Santhouse, who you will be aware was a member of the CG53 GDG. Please read the attached eBMJ response submitted by Horace Reid, a former long-serving NHS clinician. It was rejected for publication, a fact that is revealing in itself, given that it is impeccably accurate.
I would ask you in your role as Chairman of NICE to engage fully with our report and act accordingly to right the long standing wrongs that people with ME have suffered for the last 20 years.
With best wishes
And here is the shocking reply he received back from Sir Rawlins yesrerday:
From: Professor Sir Michael Rawlins FMedSci
National Institute for Health and Clinical Excellence
To: Professor Malcolm Hooper
2 March 2010
Thank you for your letter and for enclosing "Magical Medicine: How to Make
You are obviously aware that NICE has, in the recent past, been involved in
defending an action for Judicial Review over the ME/CFS guideline we
published a couple of years ago. Although judge found in favour of the
Institute the legal costs were considerable. I am afraid, therefore, that I
am not prepared to enter into any correspondence on this matter.
I am returning your document.
Professor Sir Michael Rawlins FMedSci
Sir Michael claims it is because of the cost that he fails to read the report and address any of the isues raised by Professor Hooper.
But it isn't down to money, they are just using that as a feeble excuse, they daren't say they have read, or will read the report because it completely blows apart the PACE trial and the whole of the Wesselyites view of ME being a behavioural disorder with no organic basis, that you treat with CBT/GET.
Just section 2 of the report alone, which gives all the biomedical scientific evidence, blows the whole NICE guidelines and the Wesselyite view apart. If they say they have or will read the report then it is very difficult for them to deny this so they say they just won't read it, simple, just as they did with the NICE guidelines when they said it wasn't in their remit to look at the biomedical evidence, deny it exists, ignore it and they get away with it. So much for science, integrity and care and compasson for patients.
I'd just like to thank Professor Hooper so very much for all his amazing work for us all, he is retired, he need not do any of this, he is truly a man of great compasson and integrity not to mention intellect. He also figths for GW vets and autistic children and many others.
Is his 442 page report available online?
Andrew, the whole report is available in PDF format on the MEActionUK webpage
http://www.meactionuk.org.uk/magical-medicine.htm Scroll down this press release until you come to the link below (or try to open it from here, not sure if that will work)
It can be found here, Andrew.
Does anyone know what the complaints process is for this kind of thing? I suspect you cannot refuse to say anything, am I wrong?
"I am returning your document."
How does this retard hold a job?
Ok, I guess not totally speechless.
So am I!
Apart from one word: C-R-I-M-I-N-A-L
Prof Hooper's letter to the head of the MRC, Lord Drayson was an official complaint which I believe they have to reply to in some shape or form, but who knows, they may well ignore it....
Prof Hooper's letter to Rawlins was not an official complaint.
What about legal action? What options are available?
Prof hooper's reply to prof rawlins' rebuttal
PERMISSION TO REPOST:
This is Professor Malcolm Hooper's reply to Professor Sir Michael Rawlins' unscientific refusal to address the biomedical evidence that exists about ME/CFS:
From Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry
School of Sciences
University of Sunderland
SUNDERLAND SR2 3SD
Phone 0191 515 2000
FAX 0191 515 2502
Public Relations Office 0191 515 2691
Chief Scientific Adviser to the Gulf Veterans' Association
President: the National Gulf War Veterans and Families Association, NGVFA, (2002)
web site http://osiris.sunderland.ac.uk/autism
05 March 2010
Dear Sir Michael,
Thank you for your letter and the returned copy of Magical Medicine which I found very disappointing and disconcerting.
To be faced, yet again, with the denial and dismissal of the comprehensive amount of biomedical evidence about ME that has been presented in some 5000 published and peer-reviewed papers is disturbing and has sinister connotations devoid of any compassion.
Failure to consider this evidence means that any policy towards people with ME will be built upon sand in defiance of the basic principles of scientific inquiry and any consideration for very sick people, their families and carers
As a fellow medical scientist I find the continuing denial and unwillingness to face the biomedical evidence both puzzling and incomprehensible.
We know Government is committed to funding research that is perceived to support policy, an attitude that has, in this case, lead to lack of scientific rigour, integrity and humanity in order to avoid developing a policy based on the biomedical evidence available in this complex and difficult area of medicine.
With best wishes
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