Disputed therapies for myalgic encephalomyelitis abandoned
Text from the article linked below:
Doctors will be told this week to stop recommending two controversial treatments for the debilitating condition myalgic encephalomyelitis (ME) in a move which will provoke an angry backlash from the medical profession.
The Times has learnt that new guidelines from the National Institute for Health and Care Excellence (Nice) will say graded exercise therapy (Get) should no longer be offered to people with ME. Cognitive behavioural therapy (CBT), a talking therapy previously seen as having a curative role, should only be offered to support patients in dealing with the anxiety of being ill.
The guidelines will also emphasise the importance of early diagnosis, doctors believing their patients and better access to disability aids, including blue badges for motorists with ME.
Patient groups have long complained that Get causes their symptoms to flare up. The therapy asks patients to follow exercise regimes involving activities such as swimming or walking that gradually increase over time.
The patient groups say that CBT has no impact on a complex physical condition which leaves people with long-term symptoms including fatigue, pain, gastrointestinal problems, brain fog and dizziness. The Times understands that leading medical bodies are considering refusing to endorse the guidance.
A spokeswoman for the Royal College of Physicians said it raised concerns with Nice when a draft was issued last November. She added: “We will let our members know if we have concerns about any elements of the guidelines”. Three members of the committee considering the guidelines resigned last month. The guidance was compiled after a three-year review and reverses Nice’s 2007 recommendations which said the two therapies were the “interventions for which there is the clearest research evidence of benefit”.
Nice’s fresh analysis of dozens of clinical trials which claimed success for the use of the therapies has judged them as being of “low” or “very low” quality.
Professor Jonathan Edwards of University College London, an expert in clinical trials, told Nice that clinical trials of Get and CBT for ME were deeply flawed. He said that the trials were unblinded and that the key measure of success was whether patients reported they were feeling better, on a subjective scale. More objective measures like increased activity or return to work tended not to change.
Edwards added: “We don’t take trials like this seriously in clinical pharmacology so I’m not sure why anyone thinks they’re appropriate in clinical psychology. This is something every medical student is taught about.”
Neurologists expressed concern that the two therapies would not be available for treating patients. One said: “These therapies are not panaceas, they’re not amazing cures but some patients find them helpful — I don’t think the voices of those patients have been heard. For people to resign from the committee at the 11th hour is unprecedented and represents a total failure of the Nice process”.
The cause of ME, also known as chronic fatigue syndrome, is not known and there has been limited research. Scientists have noted parallels with long Covid, which has a similar range of symptoms. ME is most often triggered by a viral infection.
This has to have been one of the greatest gas lightings that ever there was.