Minutes just released for the 15 July 2015 meeting of the cross-charity Forward-ME group record a discussion with Dr Martin McShane of NHS England on getting him to recommend that the NICE guideline on ME/CFS should be revised.
The guideline, which should be based on the best available scientific evidence, and which is followed by all NHS doctors, has been much criticised by charities for its weak diagnostic criteria and its recommendation of cognitive behavioural therapy and graded exercise therapy for ME/CFS.
The guideline has not been updated since 2007 and was put on the ‘static’ list in 2014, meaning that it would not be revisited for another five years.
At the meeting, Dr McShane said that the guidelines for many diseases were likely to go unreviewed because of resource pressures on NICE and that he could not tell NICE that ME/CFS should take priority over other conditions.
However, Dr Charles Shepherd of the ME Association pointed out that graded exercise therapy was causing harm to patients and that if a drug was causing harm, guidelines would be reviewed immediately.
He also said that Professor Mark Baker had sent a strong message that NICE would seriously consider changing the guidance on ME/CFS if NHS England advised them to.
Dr McShane agreed to write to NICE and to show Forward-ME a copy of his letter. Dr Shepherd handed Dr McShane a copy of the ME Association’s recent patient survey, which details the harms caused by graded exercise therapy and the failings of the current guideline.
Follow-up correspondence with NICE and NHS England is still in progress.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the