A controversial exercise technique used to address chronic fatigue syndrome is no longer being recommended by the National Institute for Health and Care Excellence (NICE).
The decision to stop recommending graded exercise therapy (GET), which involves gradual increases in physical activity to slowly build up tolerance represents a crucial victory for patient advocates who have long said the practice causes more harm than good.
Patient groups have claimed that the use of exercise therapy suggest that those with chronic fatigue syndrome, also known as ME have no underlying physical problems but are suffering manifestations due to inactivity.
ME patient Glen Buchanan said that they have been widely ignored and had their suffering at the hands of this illness continually diminished by the improper and harmful guidance or notice that they can just exercise or think their way out of a physical illness none of them asked for nor deserve.
Chronic fatigue syndrome is believed to impact about 250,000 people in the United Kingdom and has been calculated to cost the economy billions of pounds yearly.
One in four are so severely impacted they’re unable to leave the house, and frequently, even leave their bed.
Other manifestations can include pain, mental fogginess, light and noise sensitivities, as well as trouble with remembering and sleep.
No effective treatment exists, although cognitive behavioural therapy (CBT) and graded exercise therapy have been utilised in an attempt to control symptoms.
Clare Ogden, head of communications and engagement at UK charity Action for ME, said that NICE’s earlier guidelines had been produced with what NICE thought was the best-known evidence at the time, but it’s become abundantly evident from patients that their experiences differed from that.
NICE last issued guidance on Chronic fatigue syndrome in 2007, but the new draft guidelines state that it’s a complicated condition with no one treatment suitable for everyone, especially where there’s a potential for an intervention to help some people but cause damage in others.
Even with the help from a specialist, only about one in 10 patients said that exercise therapy helped control symptoms, while almost half reported a worsening effect, according to a 4,000 patient survey conducted by Action for ME last year.
And following patient complaints, the NICE guidelines also highlighted that CBT was not a treatment or a cure, but may be useful as a supportive psychological therapy.
This is such wonderful news for some, and even though it might sound far-fetched to people who don’t suffer from the illness – increased activity at any level, can cause excruciating relapses and pushed repeatedly to do so, by the only sector of the medical community who seemed open to treating this horrible illness, is distressing beyond belief.
And when these people told their physicians that the exercise physically harmed them, they were largely met with funny looks and I’m sure that numerous people with Chronic fatigue syndrome will have sobbed with relief when they see this, and that finally, these people who are in charge have listened to the decades of research that discredited the ridiculous study they’ve been clinging on to.
In terms of the misinterpretation of the condition, this is purely graded exercise therapy to make sure that you’re fit for work for assessments – if you can lift your arms, back to work you go.
Myalgic encephalomyelitis (ME) or Chronic fatigue syndrome (ME/CFS), whatever you want to call it because some people like labels – I love labels because it helps to know what’s wrong with you and that it’s not all in your head – mushrooms grow in the dark and these people are not mushrooms!
This is a complex chronic disease that presents with manifestations in multiple body systems – ME is a neurological disease according to the World Health Organisation.