A controversial exercise technique used to manage chronic fatigue syndrome is no longer being recommended by National Institute for Health and Care Excellence (Nice).
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The decision to stop recommending graded exercise therapy (GET) – which involves incremental increases in physical activity to gradually build up tolerance – represents a crucial win for patient advocates who have long said the practice causes more harm than good.
Patient groups have argued that the use of exercise therapy suggests that those with chronic fatigue syndrome (also known as ME) have no underlying physical problem but are suffering symptoms due to inactivity.
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“We have been so widely dismissed and had our suffering at the hands of this condition constantly diminished by the inappropriate and damaging guidance/notion that we can simply exercise or think our way out of a physical illness none of us asked for nor deserve,” said ME patient Glen Buchanan.
Chronic fatigue syndrome is thought to affect about 250,000 people in the UK and has been estimated to cost the economy billions of pounds annually. One in four are so severely affected they are unable to leave the house and, frequently, even their bed.
Other symptoms can include pain, mental fogginess, light and noise sensitivities, as well as trouble with memory and sleep. No effective treatment exists, although cognitive behavioural therapy (CBT) and graded exercise therapy have been employed in an attempt to manage symptoms.
Clare Ogden, head of communications and engagement at UK charity Action for ME, said that Nice’s previous guidelines had been produced with “what Nice believed was the best available evidence at the time but it’s become abundantly clear from patients that their experiences differed from that”.
Nice last issued recommendations on chronic fatigue syndrome in 2007. The new draft guidelines state that it is a complex condition with no one treatment suitable for everyone, “particularly where there is the potential for an intervention to benefit some people but cause harm in others”.
Even with support from a specialist, only about one in 10 patients reported that exercise therapy helped manage symptoms, while nearly half reported a worsening effect, according to a 4,000-patient survey conducted by Action for ME last year.
Following patient criticism, the Nice guidelines also emphasised that CBT was not a treatment or a cure, but may be useful as a supportive psychological therapy.
Some healthcare practitioners criticised the new Nice guidance, arguing that graded exercise therapy and CBT were the only evidence-based treatments for the condition.
“I am aware that there has been controversy over these approaches but there has never been any evidence of harm and they remain the only evidence-based treatment approach in CFS,” said Dr Alastair Miller, deputy medical director at the Joint Royal Colleges of Physicians Training Board and former principal medical adviser for Action for ME.
“It is therefore extremely disappointing that Nice has chosen to exclude them from the updated guidelines and I certainly have concerns that this omission is based more on political pressure than good science.”
This content was originally published here.