What we’re not being told about ME

August 26, 2021


There is an excellent article on the unherd site about how NICE won't admit its treatment of the chronic disease doesn't work by Tom Chivers. It covers the delay in the NICE guideline and the history of how we arrived at the current situation.

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.

Extracts

Researchers have defended the PACE trial by saying that it is difficult to do good blinding and use objective measures in things like ME/CFS. And the infectious disease physician Andrew Miller, in defence of the treatment, says that “without CBT and GET, there is nothing. No new therapies or approaches have emerged since 2007 [when the current guidelines were established].”

But the fact that it’s hard to get good evidence doesn’t make the evidence you have better. And the fact that there aren’t well-evidenced therapies doesn’t make the therapy you have better-evidenced. Science isn’t graded on a curve: “If results are unreliable, they cannot be considered reliable just because it is difficult to get more reliable ones,” as Edwards put it in his evidence to NICE (his emphasis).

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