Chronic fatigue patients are at loggerheads with doctors over a controversial treatment that requires them to exercise.
Sufferers of the debilitating condition, also known as ME, claim that being prescribed so-called graded exercise therapy – a programme of activities such as walking, gardening and swimming to get them moving and raise their heart rate – is ‘inhumane’ and ‘barbaric’.
The parents of one young patient have even launched legal action against health chiefs, claiming the exercise regime left their son ‘in a dreadful state, in constant pain and shaking in his sleep’. Another patient claims the treatment left her ‘bedbound for weeks’ and contributed to her leaving her job as a primary teacher in London.
Stephanie Reed, 32, from Wiltshire, who first became unwell in 2016, adds: ‘I know for certain it made me worse, and so many other ME patients I speak to say the same. This really seems to be harming people.’
While some experts agree graded exercise therapy should have been binned years ago, medical leaders have claimed that without it they have nothing to offer patients, and in August intervened to postpone a decision that was set to ban it.
Stephanie Reed, 32, from Wiltshire, who first became unwell in 2016, said the current exercise treatment does not help patients. She said: ‘‘I know for certain it made me worse, and so many other ME patients I speak to say the same. This really seems to be harming 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 thinking and concentrating.
These can last for years, meaning that some become housebound, unable to work full-time or socialise.
In many cases, problems begin following a viral infection such as flu or glandular fever. Some doctors have recently suggested that a Covid infection could also trigger it. But for others there is no clear cause, and even experts who have devoted their careers to studying the condition freely admit they are not certain what drives it.
Because of this, patients and doctors have had a fraught relationship. Many patients say that, in the past, medical professionals were dismissive of their symptoms – some labelled ME a mental health condition.
It was only officially recognised in 2007 by the health watchdog, the National Institute for Health and Care Excellence (NICE), when the first guidelines on how to treat it were published, and access to NHS care has improved in recent years thanks to greater awareness. There are now specialist ME clinics in most regions of the country. However, the treatments on offer are limited.
Doctors can prescribe drugs such as painkillers and anti-inflammatories to manage some ME symptoms, but graded exercise therapy has been one of the only other options. In August, following a three-year review, NICE had been set to call a halt to the therapy, but that has now been postponed.
The delay has angered patient groups, who have been campaigning for years to outlaw the treatment – while three members of the NICE committee that evaluated the evidence for graded exercise therapy resigned in protest at the plan to ditch it. One scientist involved in the proceedings told The Mail on Sunday that they have received abuse on social media after postponing their decision on the treatment.
Patient Sue Hardy, 59, from Hertfordshire, pictured with her husband Andy says after three years of no change, her symptoms improved thanks to pacing. She was diagnosed with ME in April 2013 after a gallbladder surgery triggered her problems. She said graded exercise therapy made her more ill
The two groups are due to meet tomorrow in an attempt to reach a compromise.
The ‘structured exercise programme’ of graded exercise therapy aims to gradually increase how long ME patients can carry out physical activity, and therefore return to a more normal life.
Under supervision, patients are instructed to push themselves to carry out as much physical activity as they are able. Doctors say the key is that patients get their heart rate up. As one specialist puts it: ‘If you can walk one kilometre, one day a week, then next week you need to walk 1.1 kilometres.’
While doctors do not claim that graded exercise therapy is a cure, many strongly believe it leads to improvements in patients.
‘Nobody said this works for everyone,’ says Dr Alastair Miller, deputy medical director at the Joint Royal Colleges of Physicians Training Board. ‘But it’s a therapeutic option that helps many people, and there’s a lot of data to prove that.’
Despite this, a large number of patients say the treatment is not simply ineffective but damaging.
Olivia Horne, 21, was placed on the exercise routine while in hospital with ME in her teens.
She says: ‘When I was admitted, I was told if I was sleeping during the day it was a sign of depression, so it wasn’t allowed.’
Instead, Olivia, who had been so weak she had entered hospital in a wheelchair, was instructed to regularly walk around the ward, or with a group of patients outside the hospital grounds.
‘The nurses were relentless,’ she adds. ‘They completely disregarded the pain that I was in.
‘They acted as though all I needed was a bit of motivation and I would get better.’
But Olivia did not get better. Instead her symptoms worsened.
Patients with ME have complained that punishing exercise regimes make it more difficult for them to recover from their symptoms
‘My body didn’t have time to recover from the walking. My legs were constantly in pain, I felt so weak afterwards I couldn’t even eat. I blame the exercise for the fact that I spent the next six months unable to get out of bed.’
Olivia’s symptoms improved gradually, over time, although she can’t explain why, and is now studying at university.
She still suffers fatigue, leg pains and palpitations, but thinks graded exercise therapy shouldn’t be offered. ‘It feels wrong to call it a treatment,’ she adds.
According to a survey carried out by the support group Action For ME in 2019, just one in ten patients reported that graded exercise therapy had a positive effect on their symptoms. Nearly half of the respondents said the treatment made things worse.
Experts who oppose the treatment say it is harmful because it can trigger a problem called post-exertional malaise, where physical exertion leads to an extreme worsening of symptoms in ME patients. Stephanie Reed says she is a case in point.
A physiotherapist she was referred to when her symptoms worsened in 2018 insisted that graded exercise therapy was her best shot at recovery.
‘I was told that since I had previously been very active, the best thing I could do was try and get my body back to the physical shape it was at before.’
Stephanie was given an exercise routine to carry out at the gym, which included lifting light weights and stretches. She was instructed to increase the length and intensity of her workout every week. Almost immediately, Stephanie said she was hit with severe bouts of post-exertional malaise. ‘I was struggling to even lift my head off the bed.’
She kept attempting the exercise routine, believing that it would eventually improve. ‘A few months in I became completely bedbound. At that point I had to give up my job fully. That was three years ago, and I haven’t been able to work properly since and I rarely feel able to leave the house.’
‘If graded exercise was a drug treatment it would have been banned years ago,’ says Dr Charles Shepherd, medical adviser of the ME Association. ‘It’s ineffective and harmful.’
Dr Charles Shepherd, medical adviser of the ME Association said if graded exercise therapy had been a drug it would have been banned
Patient groups have campaigned to ban graded exercise therapy since the first NICE guidelines were drawn up in 2007, and in November last year draft guidance was published indicating that it would be withdrawn. Then came the U-turn.
Sources close to the committee told The Mail on Sunday that NICE was swayed due to ‘significant disquiet among the Royal Colleges’ –specifically the Royal College of Paediatrics and Child Health, the Royal College of Physicians, and the Royal College of Psychiatrists. The source said: ‘There is real frustration with NICE. Doctors feel like the only available treatments we can offer patients are being taken off the table.’
But Sonya Chowdhury, chief executive of Action For ME, said: ‘There is a woeful lack of treatments for ME on the NHS, but that does not mean doctors should resort to using something which does more harm than good.’
Of the talks between patients and experts tomorrow, NICE chief executive Professor Gillian Leng says: ‘We hope there will be an open and honest discussion to ensure that the final guideline will be effectively implemented across the system.’
A source who will be attending the meeting said they were ‘quietly hopeful’ the guidelines to drop graded exercise therapy will be published unchanged.
However, on October 1, the parents of a patient with ME began legal action against NICE over the delay to publishing the guidelines. In court documents, the mother states her son is in ‘a dreadful state now’ due to graded exercise therapy he was prescribed in 2013.
She blames the current NICE guidelines, arguing it led to her son’s post-exertion malaise being ignored. She says her son ‘is worried that if he seeks treatment from the NHS he will be further subject to the harmful regimen’.
Solicitors representing NICE say no one is forced to participate in graded exercise therapy. Yet Jonathan Edwards, Emeritus Professor of Medicine at University College London, said: ‘These treatments do not work, and worse, it appears they cause considerable harm. There is clearly a number of healthcare professionals who can’t admit they’ve got it wrong and can’t cope with change.’
But if not graded exercise, then what should patients be offered?
ME expert Dr Charles Shepherd argues for the inclusion of a similar, but more moderate, treatment called pacing. This also requires patients to undergo physical activity, but unlike graded exercise they are encouraged to be active well within their limits.
In practice this means that if a patient is physically able to walk a kilometre once a week, they would walk half a kilometre once a week and build up from there. The aim, proponents say, is to minimise the risk of post-exertional malaise that could inflame symptoms.
Patient Sue Hardy, 59, from Hertfordshire, says after three years of no change, her symptoms improved thanks to pacing.
She was diagnosed with ME in April 2013 after a gallbladder surgery triggered her problems.
She claims graded exercise therapy ‘made me more ill’ but pacing had a different result. Sue, who has had to give up working as a lecturer in nursing, says: ‘I started seeing a private physio who did not force me to constantly push myself. This means I do a small amount of activity every day but I counterbalance that with plenty of rest. I’m not totally better by any stretch – I still can’t walk the dogs – but it’s helped.’
But one doctor who will be present at the NICE meeting tomorrow had little time for the argument that removing exercise therapy would leave patients with few other options.
He says: ‘If ineffective treatments are removed, then perhaps it would force the NHS to pay more attention to this condition that affects so many, and force them to put more money into finding things that work.’