Anger at pause in chronic fatigue syndrome advice update

A health watchdog has paused a final update treatment guidance on ME only hours before planned publication due to disagreement on the contents, a move which has angered some charities.

 

NICE have said they need more conversations with professionals and patient groups so that the advice is supported.

 

Many patients with chronic fatigue syndrome (CFS) or ME, say the therapy, which encourages patients to gradually increase their activity levels, makes their condition worse, not better.

 

The draft recommendations for England and Wales, which were published last November, said people should remain in their “energy envelope” when undertaking an activity and that a physical activity programme should only be considered in specific circumstances.

 

The draft also amended their advice on CBT talking therapy, clarifying that it was only helpful when treating anxiety related to the condition, not the illness itself.

 

Sian Leary from #MEAction UK, accused NICE of “capitulating to the vested interests of those who support graded exercise therapy, instead of standing up for the thousands of people being harmed.”

 

Andrew Goddard of the Royal College of Physicians, said “We were extremely concerned that the final guidelines proposed by NICE may not have taken into consideration the extensive comments we made to the draft version, particularly in relation to treatments we know to have significantly benefited many patients.

 

“There is reasonable evidence, for example, that graded exercise therapy helps a group of patients with ME/CFS and, while not without risk, our experts strongly support its ongoing use as an option in this condition.”

 

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Posted by Karen Motley, Clinical Negligence Department, Chadwick Lawrence LLP (tonymay@chadlaw.co.uk ), medical negligence lawyers and clinical negligence solicitors in Huddersfield, Leeds, Wakefield and Halifax, West Yorkshire.

 

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