Press Release for Judicial Review of NICE Guidelines on “CFS/ME” (UK)

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Not so NICE for ME_*

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On 11-12 February 2009, a Judicial Review (JR) will take place in the
High Court, London, of the NICE Guidelines CG53 for /Chronic Fatigue
Syndrome / Myalgic Encephalomyelitis. / NICE have indicated that they
have received more comments about this Guideline than any other.

The case against NICE has been brought by two patients who have had
Myalgic Encephalomyelitis (ME) for many years.

Kevin Short and Douglas Fraser both assert that the CG53 Guideline fails
to recognise the severity and scope of physical problems caused by ME or
offer any significant help to severely-affected sufferers. The illness
can affect all the systems of the body and lead to sufferers
experiencing, among other things:

* cardio-vascular problems;
* severe malaise with ‘flu-like symptoms;
* overwhelming exhaustion and muscle pain;
* gastro-intestinal problems;
* joint pain;
* increased sensitivity to light, sound, touch and taste; and,
* cognitive dysfunction.

ME is a neurological condition that affects an estimated 240,000 people
in the UK. However, despite being classified as a neurological condition
by the World Health Organisation (WHO) and the Department of Health
recognising this classification, the illness is still regarded by some
medical practitioners as primarily a psychological problem.

Short and Fraser state that NICE has failed to give adequate diagnostic
guidance to doctors and, most worryingly, has recommended treatments
that are both unsuitable and costly, for which there is no sound
evidence base.

The interventions identified in the CG53 Guideline are Cognitive
Behaviour Treatment (CBT) and Graded Exercise Therapy (GET), which
patient groups and independent experts say are at best useless and at
worst dangerous, especially as there is little or no medical monitoring
of aspects of the illness such as cardiac problems and mitochondrial
dysfunction. In biomedical research studies conducted in the UK, GET has
been shown in to adversely affect patients with ME who perform exercises
beyond their comfort level.

At the same time, NICE, in the CG53 guideline, has said that doctors
should _not_ routinely do extensive testing or use certain drugs for the
treatment of symptoms. However, by not performing testing, patients with
illnesses other than ME are grouped in the general classification and
any analysis of treatment regimes can only become more confused.

The purpose of a NICE Guideline is to provide clinically excellent and
authoritative information to NHS clinicians. Mr Short and Mr Fraser say
that NICE has singularly failed to carry out this remit by ignoring the
biomedical evidence and nature of the condition and concentrating
primarily on recommending psychological management techniques.

For more details please contact:

Mr Jamie Beagent
Leigh Day & Co
Priory House, 25 St John’s Lane,
LONDON EC1M 4LB
Tel: 020 7650 1200
Fax: 020 7253 4433
jbeagent@leighday. co.uk


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