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
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.
manage NICE and who force these unwanted guidelines on to chronically ill
patients ought to reflect on the morality of their actions.
issued a crowing press statement where Professor Peter Littlejohns, NICE
Clinical and Public Health Director, states –
“This result is very good news for the thousands of people with
CFS/ME, who can
continue to benefit from evidence-based diagnosis, management
and care for
this disabling condition. The 2007 guideline was welcomed by
as an important opportunity to change the previous situation for
helping ensure that everyone with CFS/ME has access to care
the individual. Today's decision means that the NICE guideline
is the gold
standard for best practice in managing CFS/ME."
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.
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.
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 –
“The judgment acknowledges the robust procedures that NICE
follows in ensuring that its guidance is independent,
evidence-based and fit for purpose. We're delighted that this
issue is now closed and look forward to continuing to produce
world-class guidance which benefits everyone who uses the NHS”
Littlejohns and his superiors to ignore completely how damaging this case
has been to NICE is myopic in the extreme.
only thing worse than being blind is having sight but no vision.”
problem is that Littlejohns and NICE just don’t get it - and this typifies
the flaws and lack of vision in NICE.
not the end of anything - it is a continuation of the beginning.
guidelines are an affront to good science and common sense and essentially
worthless for healthcare professionals as well as for people with ME.
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
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?
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.
battle to get proper diagnosis, proper treatment and proper funding for
biomedical research into ME is not lost.
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
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.
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
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.
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
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.
in ME -
The statement from NICE on the CFS/ME judicial review outcome
The High Court has today ruled in favour of NICE on all grounds
brought against the Institute in the judicial review of its
clinical guideline on chronic fatigue syndrome / Myalgic encephalomyelitis (CFS/ME).
The claim against NICE was brought by two CFS/ME patients. The grounds of
challenge, all of which the Judge has dismissed, included an allegation of
bias against the guideline development group and its members, that the
irrational compared to the evidence, and claims about the
classification of the condition and treatments recommended.
Professor Peter Littlejohns, NICE Clinical and Public Health
Director, responded to the High Court judgement saying:
"We are pleased to
have won convincingly on all counts in this case - this judgment is a
welcome endorsement of the rigorous methods we use to produce our
guidelines. This result is very good news for the thousands of people with
CFS/ME, who can continue to benefit from evidence-based diagnosis, management
and care for this disabling condition. The 2007 guideline was welcomed by
patient groups as an important opportunity to change the previous situation for
helping ensure that everyone with CFS/ME has access to care
appropriate for the individual. Today's decision means that the NICE guideline
is the gold standard for best practice in managing CFS/ME."
Professor Littlejohns continued: "The guideline was developed by
an independent group comprising clinical specialists in CFS/ME,
patient representatives and experts involved in the diagnosis of the
condition and provision of care. This guideline development group (GDG)
considered a range of complex issues in great depth taking full account of the
views of patient
groups and health professionals. We agree with the judge that
the GDG were a dedicated group of individuals who worked together to produce
the best possible guideline, and that the accusations that they were
biased were completely unfounded. The judge recognised the key role that
professionals and patients have in contributing to the development of NICE
guidelines and therefore understood the vigorous approach NICE took in
defending these health experts. We are pleased that all members of the GDG and
those involved in selecting the GDG were totally exonerated from the
unfounded claims made against them. The judgment acknowledges the robust
procedures that NICE follows in ensuring that its guidance is independent, evidence-based and fit for purpose. We're delighted that this
issue is now closed and look forward to continuing to produce world-class
guidance which benefits everyone who uses the NHS."
NICE GUIDELINES for CLINICAL PRACTICE
Last Updated 23 October 2013