AfME statement: NICE CFS/ME guideline amended

NICE guideline amended (press release)
22 August 2007

National Institute for Health and Clinical Excellence (NICE) has published its guidelines on the diagnosis and management of M.E. (myalgic encephalomyelitis / encephalopathy) or chronic fatigue syndrome today, 22 August 2007.

The guideline is published in full, summary and quick reference form and the full guideline (488 pages) is still being analysed. A detailed commentary will be published in due course.

In responding to the shorter NICE summary and reference guide, the trustees of Action for M.E. recognise that the Guideline Development Group (GDG) has taken account of much of the patient evidence supplied during the public consultation on the draft guideline, published last September. This is welcome, as is the emphasis on shared decision-making between patients and healthcare professionals and working in partnership.

From the outset the guideline states, as a key priority, that healthcare professionals should acknowledge the reality and impact of the illness and its symptoms.

The trustees are disappointed to note that the guidance still places undue emphasis on two treatments – cognitive behavioral therapy (CBT) and graded exercise therapy (GET) – for which the underlying evidence is inadequate and unrepresentative. Many patients have reported little or no benefit from CBT and others have experienced seriously adverse effects from GET.

They are also disappointed that the GDG could not agree to recognise the World Health Organisation’s classification of M.E. as a neurological illness.

In addition, the summary guideline does not convey or reflect the impact which the illness can have on the lives of those people who are most severely affected by M.E.

Nevertheless the trustees feel that the guidelines represent an opportunity to drive forward improvements in NHS services so long as the right training is given to healthcare professionals and especially GPs. Only this will give them the confidence they need to diagnose the illness and to work in partnership with patients to determine the most appropriate treatment for each individual.

George Armstrong, Chair of trustees, said:

“This guideline could be a landmark in the mainstreaming of M.E. as a legitimate illness. Properly implemented, it should help GPs on the front line to reach a diagnosis and identify pathways of care, treatment and support.

“We will use our connections with patients to monitor rigorously the implementation of the guidelines. As a critical partner we will also work with the NHS to ensure that people with M.E. will receive the most positive and effective forms of care, tailored to their own specific needs and preferences.”

Sir Peter Spencer, Chief Executive of Action for M.E., added:

“When the draft guideline was published last September, Action for M.E. and other patient groups were united in their belief that CBT and GET should not be recommended as ‘treatments of first choice.’ NICE has responded by removing this phrase but CBT and GET remain. As a result, aspects of the guideline are problematic.”

The guideline acknowledges that more research is needed into the causes of the illness and Action for M.E. calls upon the Government to make a serious investment in research into the aetiology and pathogenesis (development) of this debilitating illness. Only then can the most effective treatments be identified and tested.

Action for M.E. and other patient organisations can play a vital role in implementing the guideline by providing healthcare professionals with information resources and patient experiences which will help to make their training meaningful and patient centred.

The potential for the NICE guidelines to improve practice can only be fully realised if services for people with M.E. are fully funded and we will campaign energetically for a greater level of investment, particularly in those areas that pioneer new models of service delivery that address the position of children and the most severely affected.

AYME, the Association of Young People with M.E. has also welcomed the guideline and a statement will be appearing on their website ( shortly.

The NICE guideline, Quick Reference Guide, Full guideline and information on ‘Understanding NICE guidance’ can be downloaded from

It is also possible to order paper copies of the Quick Reference Guide and ‘Understanding NICE guidance’ by phoning the NHS response line on 0870 1555 455 and quoting N1302 (quick reference guide) or N1303 (Understanding NICE guidance).