Judicial Review of the NICE Guideline CG53 for CFS/ME: Press statement

NICE Judicial Review of the NICE Guideline CG53 for CFS/ME

Press statement | issued 04 February 2009

Not so NICE for ME

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,
Tel: 020 7650 1200
Fax: 020 7253 4433