NICE guidelines were published in August 2007. These have been met with mixed responses within the ME Community. ME North East are taking a pragmatic approach - they’re with us and will be implemented by the Local Multi Disciplinary Teams in our region. Regular monitoring and evaluation of services will help to define the benefits of care, management and treatment to patients and will also shape future recommendations to review best practice.

Good Points
They exist and require doctors to take serious note of the illness. The guidelines should be followed by all clinicians.

They anticipate that specialist services are available to all people with ME - referral to be considered after four months of onset of symptoms.

Proper reference is made to holistic care, rather than one single intervention; the guidelines also appear to respect patient autonomy - the patient is not to be prejudiced by refusing one particular course of treatment (e.g. CBT).

The guidelines refer to patient focus and tailoring the treatment programmes to individuals; emphasis is placed on therapists having experience of the illness and treatment techniques, no text book “one size fits all” approach is acceptable.

Criticisms
The World Health Organisation (WHO) classification ME as a neurological illness (ICD10 93.3) has not been accepted and NICE refer to a somewhat feeble excuse of not restricting research.

There is no clear call for further biomedical research designed to offer definitive diagnostic tools or curative treatments.

There is considerable emphasis on behavioural treatments - CBT & GET, which is justified by a claim for “good” evidence. This is not accepted by many patients as the research base for these treatments is weak. Furthermore, the experience of patients of these treatments is mixed at best.

In general the guidelines appear to place little value on patients testimony; however, the pragmatic approach (after CBT/GET) based on elements of Pacing does appear effective and should be supported by patient groups.

So what should ME North East do about them?

Don’t panic! I do not believe there is any move to force every patient into the clutches of psychologists and away from the medical pathways (and no capacity to treat them all anyway).

We should help patients to use the guidelines to their advantage - let’s test this and take NICE at their word re: patient focus and “offering” treatment.

Use the guidelines to work with and persuade PCT’s to establish and expand clinical services to cater for everyone with ME in the Northern Region.

There is little merit in challenging the guidelines without research evidence. The present clinical services (should) be providing evidence of the effectiveness of treatments. This can be used to revise/update the guidelines. We should not waste time and money on court cases to challenge NICE. (we are aware of the One Click Group who are challenging the NICE guidelines through Judicial Review).

The Northern Clinical Network is taking the sensible first steps to check their current practice against the guidelines. ME North East will work with the network to implement the guidelines in a responsible manner.
Philip Burns (ME North East Chairman)