What Malcolm Hooper has said about NICE
On a cold, bleak day, bleak with pain, with tedium - see Linda's poem yeterday, I came across Sir Michael Rawling's reply to Malcolm Hooper on CoCure. In this post I have tried to put what Rawling's said in context of the upcoming Guideline Review as well as NICE's intimidatory tactics, as demonstrated at the Judicial Review.
Letter to Sir Michael Rawlings (Chairman of NICE) 19 Feb 2010
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 White’s 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."
....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.
Response from Sir Michael Rawlings 2nd March 2010:
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.(http://www.meactionuk.org.uk/Hooper-signed-letter-to-Rawlins.htm)
. Less than 48 hours before the case was to be heard, NICE ambushed the Claimants’ legal team with the threat of a significant wasted costs application. When the hearing began two days later, many observers both lay and legal, were puzzled by the lacklustre presentation of the Claimants’ Counsel, Mr. Jeremy Hyam. The commanding performance he had given at the preliminary (permission) hearing before Mr Justice Cranston was now conspicuously absent.
There was a reason for Jeremy Hyam’s change of demeanour. He and his instructing solicitor Jamie Beagent of Leigh Day & Co had just been threatened with a career-damaging subsidiary legal action by NICE. This threat was subsequently made good. In July 2009 Mr Justice Simon (the same Judge who dismissed the Claimants’ challenge) ordered Leigh Day & Co to pay NICE £50,000 in wasted costs, as compensation for improper conduct of the case..... NICE’s intimidatory tactics had the desired effect. Lacking the advantage of a pharmaceutical company’s deep pockets, the Claimants’ lawyers became thoroughly unnerved. In a seemingly desperate attempt to salvage their own position, they abandoned a substantial part of the Claimants’ case. They did this in mid-hearing, without their clients’ instructions or knowledge. The first clue the Claimants had of this development was when it was announced in court before lunch on the second day. It would be an understatement to say that their case was by then in some disarray. The failings of the Claimants’ lawyers are now the subject of a complaint by the Claimants to the Bar Council Standards Board and the Solicitors’ Regulatory Authority.
On behalf of Fraser & Short, Jeremy Hyam presented a limited argument (a) that the composition of the NICE Guideline Development Group (GDG) was biased, to produce a predetermined result, and (b) that the random controlled trial evidence base produced by the York Review was too weak to support the recommendations of CBT & GET.
From Magical Medicine (Feb 121 2010):
The intention to use the outcome of the PACE Trial to inform a revision of the NICE Guideline
Referring to a future revision of the NICE Guideline (CG53), the PACE Participants’ Newsletter Issue 3 of December 2008 robustly forecast that the outcome of the PACE Trial “will enrich the guidelines in 2009”. This is curious, given that the same Newsletter states on the same page: “We will be very busy analysing the main results of the trial in the spring of 2010”, so it is unclear by what transparent process the unpublished PACE Trial results will inform the forthcoming revision of CG53 that the PACE Participants’ Newsletter says is to take place one year before the PACE Trial results are to be published.
The pronouncement may, however, be taken to support the belief of the ME/CFS community that the outcome of the PACE Trial is – as was the outcome of the NICE Guideline on “CFS/ME” – a foregone conclusion.
For the avoidance of doubt, the PACE Participants’ Newsletter was incorrect. A Written Answer to a Parliamentary Question tabled by the Countess of Mar states: “The National Institute for Health and Clinical Excellence will consider in August 2010 whether there is a need to review its clinical guideline on Chronic fatigue syndrome / myalgic encephalomyelitis” (Hansard: Lords: 5th May 2009).
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