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.
KRISTINE NILSEN OMA Kristine Nilsen Oma is a dancer and choreographer living in Norway. She has ME, and though it has been difficult, she has found innovative ways to continue to perform her art. Now that the world understands creating art on Zoom or Youtube Live in ways that they did not in the