Royal College of Physicians blog, 10 April 2019: Do you really believe in ME?

With many in the medical profession misunderstanding ME, Dr Nina Muirhead recounts her own experience with the illness and how it reshaped her understanding of it. Dr Nina Muirhead is a dermatologist in Buckinghamshire Healthcare NHS Trust and a research supervisor at Cardiff medical school.

Introduction:

Many doctors can find themselves in the position of the patient, and being informed of one’s own diagnosis can be a frightening and emotional experience. Eighteen months ago, after seeing thirteen different doctors and undergoing multiple tests and investigations, not only was I given a diagnosis of a condition that I didn’t know about or understand, it was an illness I didn’t believe in.

Ten months after developing acute Epstein Barr Virus Glandular Fever I was diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) by my outstanding and well-informed GP. Prior to becoming ill, I had a vague notion that ME/CFS was an illness related to deconditioning. How wrong I was. The NICE guidelines had perpetuated my misunderstanding of ME/CFS by recommending Cognitive Behavioural Therapy (CBT) and Graded Exercise (GET).

The NICE guidelines had perpetuated my misunderstanding of ME/CFS by recommending Cognitive Behavioural Therapy and Graded Exercise

From my experience of ME/CFS there was no psychological component whatsoever, besides which exercise, if anything, was making me worse not better. I was not deconditioned or frightened to exercise. The symptoms were more consistent with a brain tumour or multiple sclerosis. The reality is ME/CFS is a serious, heritable, neurological condition and I was shocked to discover subsequently that my grandmother had died from it aged 42.

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