ME/CFS strikes 1 in 250 of us. It is a devastating illness, more disabling than
angina or multiple sclerosis. Three quarters of sufferers are too ill to work or pursue education; a quarter are house- or bed-bound. Hundreds of thousands of lives are ruined; people who could otherwise be contributing to their communities are dependent on family or on the state. The cost to the economy is estimated to be
£6.4 billion per year. Most who develop it never recover completely, although careful lifestyle management can help significantly.
Since 2007 the NICE guidelines on the treatment and care of people living with ME/CFS have been based on a
flawed model of psychological causation - 'It's all in your head'. But medical research both before and since has produced plentiful evidence that the illness is very physical indeed. The body's energy production is
seriously impaired; blood flow, particularly to the brain, is
disrupted; the autonomic nervous system
malfunctions; its presence can be detected by
blood tests. The condition typically onsets after a viral infection, and it is increasingly clear that "Long COVID" involving crushing fatigue, a worsening of symptoms after exertion, and cognitive impairment ("brain fog") is ME/CFS produced by the SARS-COV-2 virus.
The old NICE guidelines prescribe cognitive behaviour therapy (CBT) and graded exercise therapy, or GET. This is based on
the theory that one has to correct sufferers' "erroneous" belief that they are really ill, and an escalating programme of physical exertion to overcome supposed deconditioning. While CBT, properly applied, can support the well-being of chronically-ill people, patient surveys show that it does not relieve ME/CFS.
GET is more pernicious. One of the cardinal symptoms of ME/CFS is post exertional malaise (PEM): the illness is made worse by exertion. GET, involving constantly-escalating exertion, could have been tailor-made to worsen the illness!
NICE is now revising its guidelines. In the
recently-published version, GET is specifically excluded from treatment, and CBT is no longer portrayed as a cure. The committee of 16 health professionals and 5 lay members painstakingly reviewed the evidence before coming to their conclusions.
So far, this represents enormous progress. Sufferers may no longer be told their illness is imaginary, nor offered "treatments" which either do not treat the illness or make it worse.
However a coterie of professionals, mainly psychiatrists, is so attached to the discredited psychological theory that they refuse to accept the changes: three members of the NICE committee have resigned. An egregious article in the British Medical Journal has suggested that the NICE committee is dominated by patients who are anti-science and ignoring the evidence. In fact, as painstaking research by NICE has shown, the evidence for GET is 'poor or very poor', as is the evidence that CBT cures ME/CFS.
The timing of the resignations and the article is not coincidence. It is an attempt to discredit NICE's work on ideological grounds. It would be a bitter blow if ME/CFS sufferers, gas-lighted for decades, should be robbed of justice at the last moment. The
revised guidelines are due for release later this month - support our cause and vote to make sure they go ahead!
