NICE Guidelines on CFS/ME

The CFS/ME services have been saying for years that they can only provide the therapies recommended by NICE – in short, only Cognitive Behavioural Therapy (CBT) or Graded Exercise. At the same time reMEmber and other patient groups have argued that the NICE Guideline is of a very poor standard and ought to be reviewed. At the meeting of Forward ME on 25 June, Professor Mark Baker of NICE agreed with the patient groups, saying that the Guideline did not meet the needs of NICE or the patients. Unfortunately it won’t be reviewed before 2017. However it is very useful for patients, GPs and other providers of services to know that NICE itself thinks its guidance is poor.

At the same meeting of Forward-ME (25 June) we reported a Parliamentary Question by the Countess of Mar about whether CFS/ME patients have the legal right to be referred to a consultant of their choice. In his reply Lord Howe, for the Government, confirmed they have the right to see a consultant of their choice anywhere in England for their first NHS out-patient appointment. This is most important because some patients have informed us they have been denied that right.
Both these matters are reported in detail in the minutes of the Forward-ME meeting

If your GP thinks you have CFS/ME you have the right to see a consultant of your choice, preferably an immunologist, for your first referral. Tell your GP which specialist you want to see. If necessary show them the following pages which set out your legal right. If anyone refers to the NICE Guidance, bring their attention to what Professor Baker has said about it.

To explain these points more fully we have reproduced the minutes of the meeting here: MeetingMinutes_Forward-ME