What We’re Not Being Told About ME

By Tom Chivers in Unherd.

NICE won’t admit its treatment of the chronic disease doesn’t work.

There is surely no disease more cruelly misnamed than “chronic fatigue syndrome”. It is mysterious, apparently triggered by viral infection, and can last for months, decades, even a lifetime. Patients can be housebound or even bedbound for years. But the name makes it sound like they are just a little bit tired.

Apart from Covid, it is probably the most controversial disease in the world and, in fact, chronic fatigue, or ME/CFS to give it its proper name, does seem to share many features and symptoms with “long Covid”: fatigue, brain fog, pain on exertion, the assertion that the affliction is purely psychological. And for over three decades, patients have been told that the treatment for it is to get up and do some exercise, even though for many, exercise seemed to actively make their condition worse. They have been told, in near-explicit terms, that it’s their responsibility to get better.

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Updated: 1st September 2021 — 8:12 am

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