Times online letter, 22 March 2018: TREATMENT FOR PATIENTS WITH ME

Sir, The article by Tom Whipple, (“Findings of £5m ME chronic fatigue study ‘worthless’,” Mar 22) highlights a long-standing problem.

The National Institute for Health and Care Excellence (Nice) is in the process of replacing its guideline for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), but this will take time.

Patients with ME/CFS in this country continue to receive damaging treatment in the form of graded exercise therapy (GET). Despite evidence of disabling metabolic abnormalities in their muscles, patients are advised to “exercise back to fitness”. They are not simply “deconditioned” as claimed by many psychiatrists. Forced exercise above very low levels characteristically incapacitates most patients. The “exercise will make you better doctrine” applied to ME/CFS is profoundly incorrect and has no scientific evidence base.

The human cost is enormous, with many sufferers from ME/CFS rendered worse by inappropriate medical management. Even worse, such management is inflicted compulsorily on some patients, both adults and children, with their informed consent being bypassed via the use of mental health and child protection legislation.

Countess of Mar, Forward-ME; Dr William Weir, infectious disease consultant;
Dr Nigel Speight, paediatrician; Dr Charles Shepherd, ME association;
Dr Vance Spence, ME research UK; Jonathan Davies, ME research UK;
Dr Gareth Tuckwell, ME trust; Dr Paul Worthley, ME trust; Jane Colby, Tymes trust;
Helen Brownlie, 25 per cent ME group; Tanya and Christine Harrison, Brame;
William and Janice Kent, Remember; Hannah Clifton, ME trust;
Clare Ogden, Action for ME