NICE GUIDELINES - WHAT's NEXT?

Though NICE, with their well-paid lawyers and establishment machine behind them, have won the Judicial Review brought against them by ME patients this is a pyrrhic victory.

The fact that yet another group of patients have forced NICE to have to defend its policies and guidelines – guidelines meant to make the lives of those same patients better – shows how flawed the NICE organisation is and how little trust patients have in its approach and its conclusions.

Those who manage NICE and who force these unwanted guidelines on to chronically ill patients ought to reflect on the morality of their actions.

NICE have issued a crowing press statement where Professor Peter Littlejohns, NICE Clinical and Public Health Director, states –

Quite where Professor Littlejohns has been these past few years is unknown. His ridiculous comment that the 2007 guideline was welcomed by patient groups is spin worthy of the best of Blairite government.

The only patient groups to support NICE were AfME and AYME – two charities who accept money from the government to support their policies (see December 2008 newsletter) and who, in our opinion, are unrepresentative of people suffering from ME as defined by WHO ICD-10 G93.3. The officials of these organisations will have to live with their consciences with regard to their support for NICE; they will have to justify, for years to come, the effect that their support for these guidelines will have on those people who choose to continue to remain members and who continue to pay their subscriptions and fund the salaries of the leaders of these charities.

The “gold standard for best practice in managing CFS/ME” to which Littlejohns refers is an unworthy document which will fail to treat people with ME but may well satisfy insurance companies, career psychiatrists and government departments who have exhibited disdainful indifference to the plight of people with ME.

Littlejohns ends his statement with – 

For Littlejohns and his superiors to ignore completely how damaging this case has been to NICE is myopic in the extreme.

“The only thing worse than being blind is having sight but no vision.” (Helen Keller) 

The problem is that Littlejohns and NICE just don’t get it - and this typifies the flaws and lack of vision in NICE.

This is not the end of anything - it is a continuation of the beginning.

The NICE guidelines are an affront to good science and common sense and essentially worthless for healthcare professionals as well as for people with ME.

NICE have so damaged themselves as an organisation that their utterances in the future will carry even less weight and will weaken even further this deeply flawed organisation.

We feel NICE’s days may well be numbered in its present form. How many more patients will need to challenge decisions by NICE before the government is forced to act and overhaul the management and the objectives of this organisation?

An organisation that purports to be “committed to promoting equality, eliminating unlawful discrimination, and actively considering the implications of its guidance for human rights” and yet is taken to court by the same patients for whom it claims to promote good healthcare – this is an organisation that deserves to be overhauled.

 

So- what’s next?

This battle to get proper diagnosis, proper treatment and proper funding for biomedical research into ME is not lost.

Despite the actions and lack of proper conduct by NICE, the Medical Research Council and even some ME organisations this battle will be won by ME patients and their families.

The deafening silence from the media in covering yet another case being brought by patients against NICE is an interesting aspect. One wonders why, yet again, that ME does not make the news. But this is something we can fight with better education.

The Lost Voices book clearly shows the effect of the lack of education regarding ME by healthcare services and will be available at all medical libraries in the UK.

In May we have the International ME/CFS Conference – the fourth hosted and organised by Invest in ME and showing conclusive proof of the biomedical basis of the illness and the treatments which are being developed and are available. We will look at severe ME – something NICE, the MRC and the NHS fail to acknowledge.

The ME community have the Whittemore-Peterson Institute and their determination to carry out proper research into ME and produce  diagnostic markers and treatments for ME. With the founder members of the WPI and its research director all at the IiME conference in London in May we will present data which shows ways to manage and treat ME. One would expect any organisation who really wish to understand ME to wish to be present.

Work will, in any case, begin soon on replacing these guidelines. Patients up and down the country will refuse the biased and ineffectual therapies forced on doctors to prescribe to patients. Those charities and organisations who are really representing people with ME will not allow this particular issue to be closed.

The NICE guidelines for ME are not world-class. They are a poor attempt at saving money and encapsulate all that is wrong in the way that health provision is created, researched and administered in the UK.