Chronic fatigue patients face off with doctors over a controversial treatment that requires them to exercise.
Victims of the debilitating condition, also known as ME, claim that being prescribed so-called graded exercise therapy – a program of activities such as walking, gardening and swimming to keep them moving and their heart rate up – is ‘inhumane’. ‘ and ‘barbaric’. ‘.
The parents of a young patient have also launched legal action against health chiefs, claiming that the exercise regime left their son ‘in a terrible condition, in constant pain and trembling in sleep’. Another patient claims that the treatment left her ‘in bed for weeks’ and contributed to her quitting her job as a primary teacher in London.
Stephanie Reid, 32, of Wiltshire, who first became unwell in 2016, says: ‘I know it definitely made me worse, and many other ME patients I speak to say the same . It looks like it is actually harming people.’
Although some experts agree that graded exercise therapy should have been banned years ago, medical leaders have claimed they have nothing to offer patients without it, and called for a decision to be postponed in August. who was determined to ban it.
Stephanie Reid, 32, of Wiltshire, who first became unwell in 2016, said current exercise therapy does not help patients. She said: “I know for certain that it made me worse, and many other ME patients I speak to say the same. It’s really hurting people’
An estimated 250,000 Britons live with ME or myalgic encephalomyelitis, and report a variety of symptoms including extreme fatigue, muscle and joint pain, headaches and problems with thinking and concentrating.
These can last for years, meaning some are locked in the home, unable to work full time or socialize.
In many cases, problems begin after a viral infection such as the flu or glandular fever. Some doctors have recently suggested that a covid infection can also trigger it. But others for no apparent reason, and even experts who have devoted their careers to studying the condition freely admit they aren’t sure what drives it. .
This has created a rift between the patients and the doctors. Many patients say that, in the past, medical professionals were dismissive of their symptoms—something I dubbed a mental health condition.
It was only officially recognized by the health watchdog, the National Institute for Health and Care Excellence (NICE) in 2007, when the first guidelines on how to treat it were published, and access to NHS care has increased in recent years. Has improved, thanks for more awareness. There are now specialist ME clinics in most areas of the country. However, the treatments on offer are limited.
Doctors may prescribe pain relievers and anti-inflammatory medications to manage some symptoms of ME, but graded exercise therapy is one of the other options. In August, after a three-year review, NICE was scheduled to stop the therapy, but has now been postponed.
The delay has angered patient groups, which have campaigned for years to cancel the treatment – while three members of the NICE committee resigned in protest against plans to evaluate evidence for graded exercise therapy. A scientist involved in the proceedings told The Mail on Sunday that he had received abuses on social media after postponing his decision on the treatment.
Patient Sue Hardy, 59, from Hertfordshire with her husband Andy, says that after three years of no change, her symptoms improved thanks to pacing. He was diagnosed with ME in April 2013 due to his problems following gallbladder surgery. She said graded exercise therapy made her sicker
The two groups are due to meet tomorrow in an effort to reach a compromise.
Graded exercise therapy’s ‘structured exercise program’ aims to gradually increase how long ME patients can perform physical activity, and therefore return to a more normal life.
Under supervision, patients are instructed to push themselves to do as much physical activity as they can. Doctors say that the main thing is that the heart rate of patients accelerates. As one expert puts it: ‘If you can walk one kilometer one day a week, the next week you’ll have to walk 1.1 kilometres.’
While doctors do not claim that graded exercise therapy is a cure, many people firmly believe that it improves patients.
Dr Alastair Miller, deputy medical director of the Joint Royal College of Physicians Training Board, says, ‘No one has said it works for everyone. ‘But it is a therapeutic option that helps many people, and there is a lot of data to prove it.’
Despite this, a large number of patients say that the treatment is not only ineffective, but also harmful.
Olivia Horn, 21, was put on an exercise routine in the hospital with ME as a teenager.
She says: ‘When I was admitted, I was told that it was a sign of depression if I was sleeping during the day, so it was not allowed.’
Instead, Olivia, who was so frail that she entered the hospital in a wheelchair, was instructed to regularly walk around the ward, or outside the hospital grounds, with a group of patients.
‘The nurses were tireless,’ she adds. ‘He completely disregarded the pain I was in.
‘He acted like I just needed a little inspiration and I would get better.’
But Olivia didn’t get better. Instead his symptoms worsened.
ME patients complain that punitive exercise regimens make it more difficult for them to recover from their symptoms.
‘My body just didn’t have time to recover from running. My legs were constantly hurting, I felt so weak afterwards that I could not even eat. I blame this practice for the fact that I was unable to get out of bed for the next six months.’
Olivia’s symptoms gradually improved over time, although she cannot pinpoint the cause, and is now attending university.
She still suffers from fatigue, leg pain and palpitations, but considers graded exercise therapy…