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Guidelines For ME/CFS Outdated And Dangerous
Tuesday 11 September 2018
Guidelines for ME/CFS outdated and dangerous
NICE’s clinical guidelines still recommend potentially damaging treatments for chronic fatigue syndrome, but they won’t be updated until 2020.
The 2007 NICE guidelines currently recommend the use of graded exercise therapy (GET), a treatment that only helps a minority of patients and can cause significant harm in some cases.
Patients undergoing GET are encouraged to gradually increase their physical exercise over time, using CBT to help them overcome any psychological barriers.
But for some patients with chronic fatigue syndrome, pushing beyond their energy envelope can exacerbate their symptoms. Post-exertional malaise can last for days, weeks or even months.
The tide is slowly turning against GET, with the CDC in the US now warning doctors that patients with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) cannot tolerate vigorous exercise regimens.
NICE is aware that the evidence to support GET with CBT is shaky and is in the process of revising its recommendations. But new guidelines won’t be issued for another two years. That is too long for Australian patient advocate groups, Emerge Australia and ME/CFS Australia, which have both expressed concerns.
Penelope Jane McMillan, a director at ME/CFS Australia, said the patient community did not want the caution against GET to be delayed.
“In terms of the number of patients who could be adversely affected between now and 2020, that’s a lot of people,” she said. There are around 200,000 people with ME/CFS in Australia.
CBT should only be used to support patients and not to perpetuate the myth that ME/CFS was a psychological disorder, medical ethicist Heidi Nicholl, the CEO of Emerge Australia, said.
“We don’t support research based on an assumption that ME/CFS is based on deconditioning or a fear of exercise,” she said.
The NHMRC has established an advisory council to look into the research and clinical guidance needs of ME/CFS in Australia, and is expected to release a report for public consultation later this year.
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