Guidelines for ME/CFS outdated and dangerous

4 minute read

NICE’s clinical guidelines still recommend potentially damaging treatments for chronic fatigue syndrome, but they won’t be updated until 2020

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 MacMillan, 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 effected 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.

GET supported by CBT rose in popularity after a large study in the UK (the 2011 PACE trial) found it to be a moderately effective treatment, leading to recovery in around 20% of patients. 

However, the conclusions and methodology of the PACE trial were heavily criticised. 

A paper published in BMC Psychology in March this year found that the PACE trial did not follow its  published protocol, and that it was not clear whether the conclusions were justified by the evidence. 

Dr Mark Donohoe, a GP based in Sydney who has treated CFS patients, said he would still make referrals to GET programs for some patients. 

The Fatigue Centre at UNSW run by Professor Andrew Lloyd offers a structured treatment program including CBT and GET.  

However, it was not possible or appropriate for many patients with CFS to push themselves beyond their current exercise capabilities, Dr Donohoe said. 

Some patients with chronic fatigue syndrome were unable to participate in GET because they were bed-bound or severely disabled. 

Clinical guidelines should be revised to reflect the fact that GET frequently failed, Dr Donohoe said.

New guidelines ought to provide GPs with a practical list of treatment options that they could work through with the patient to address symptoms such as as pain and sleep problems, he said.

The fact that guidelines overstate the value of GET and CBT has serious repercussions for patients with CFS seeking financial support under the NDIS. 

The Medical Republic understands that the National Disability Insurance Agency (NDIA) has rejected at least one patient application on the basis that ME/CFS could be treated with GET and CBT and therefore was not a permanent disability.

The agency further articulated its view on GET in a letter to a member of the public viewed by The Medical Republic.

In this letter, the NDIA said it could “only be being guided by the published recommended guidelines and research”, and referenced the 2007 NICE guidelines, the 2002 RACGP guidelines, and the 2017 Cochrane review, among others.

The NDIA has rejected applications from all except two of the dozens of CFS patients under Dr Donohoe’s care. 

“This whole process of begging for money to manage a disability has significantly worsened the health of people who make the application,” Dr Donohoe said.

It also cut into the time GPs could otherwise spend caring for patients. “Today’s work is seven more applications for the initial refusal of funding,” he said.

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