NICE draft guideline on pain and application to ME/CFS

Concerns have been raised over the possible application of certain provisions within the draft NICE guideline for ‘Chronic Pain Assessment and Management’ to people whose diagnosis of ME/CFS has yet to been confirmed. The guideline is aimed primarily at those experiencing chronic primary pain – i.e. pain that is not linked to an underlying medical condition and so, in theory, ought not apply to pain in ME/CFS – which can be severe, difficult to treat, and involve nerves (neuropathic pain), muscles and joints.

If the recommendations for the treatment of chronic primary pain were applied to those with ME/CFS then there are concerns about some of the key recommendations, especially advocating use of supervised group exercise and the prescription of certain drug treatments such as duloxetine and SSRI drugs. Patient evidence indicates that inappropriate exercise programmes can make ME/CFS symptoms worse and a significant proportion of people experience adverse effects, even at very low doses, to the aforementioned drug treatments.

Healthcare professionals ought to be on their guard and be educated as to the appropriate use of the guideline and take particular care when treating any symptom in isolation without regard to its underlying cause.

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