From the Edinburgh Evening News, 15 April 2011 (story by Adam Morris, health reporter).
It was heralded as the greatest ever study into a condition that has always defied medics.
After eight years and a cost of £5 million of taxpayer’s money, a thorough body of data had become available for possible cures – or at least improvement tactics – for ME (Myalgic Encephalopathy).
It involved major scientists, universities from across the UK, including Edinburgh, and 600 patients – 100 of whom were based in the Capital.
The conclusion, although based on the significant weight of freshly gathered and painstakingly sourced evidence, seemed remarkably simple.
ME patients should increase their exercise through a scheme called Graded Exercise Therapy (GET) and go through Cognitive Behaviour Therapy (CBT), a procedure that would teach them to take a fresh mental approach to their lives and how their condition affects it.
According to researchers, who published their findings in the Lancet earlier this year, such techniques could help sufferers of ME, a condition that results in severe, often debilitating fatigue, as well as painful muscles and joints, poor memory and concentration, disordered sleep and gastric disturbances.
The magnitude of the research seems enough to influence health policy in Scotland. If implemented, it means patients would be placed on recovery schemes, with thousands benefiting from a new regime of exercise and a “positive mental attitude”.
However, sufferers and ME charities are now raising major concerns about the findings, worried about what could happen to those not well enough or fit enough to embark on such a proactive approach.
The fact the Department of Work and Pensions helped fund the work is also raising suspicion about what could happen to those unwilling to participate, or those who improve “too well”. Could they be stripped of their benefits?
Those fears aside, no-one argues that something has to be done, either to find the cause or cure for ME, or at least ways in which its effects can be mitigated.
Half of ME sufferers are unemployed, and those who do manage to hold down a job have sickness absence rates ten times higher than other workers who have ongoing health problems. By embarking on an exercise plan, the study says patients may be able to turn their lives around.
It is not the first illness where experts have looked to physical activity as a remedy.
GPs in Edinburgh are now increasingly prescribing exercise to those going through mild to moderate depression, and to mothers battling the post-natal form.
One of the ciry council’s flagship achievements in health and social care over the past three years has been the introduction of “reablement” – a process whereby elderly people dependent on home care are retrained to carry out basic household and personal tasks.
Some of the recent ME research was carried out at the Western General and treatments were provided at the Astley Ainslie Hospital in Morningside.
The research team knew beforehand about patient groups’ reservations on their controversial theory, and aimed to prove the methods were safe as well as productive.
The paper concluded the two approaches (GET and CBT) could be “safely added” to the list of legitimate treatments for patients “to moderately improve outcomes”.
But, as medical trials go, this one was facing opposition before it had even begun,
Michael Sharpe, professor of psychological medicine at Edinburgh University, was one of the authors of the study. The aim was to help a quota of patients rather than discover a blanket solution, he explains, and to allay fears that anyone would be “forced” into participating in future years.
“The trials were undertaken because there was a lot of uncertaintly about what was the best kind of treatment”, he says. “There were four different types of treatment tested and after a year we measured how fatigued people felt they were, and how much they felt they were able to do. We also looked to see if the trials had made anyone worse.
“The two which had the most success, and had done clearly better, were CBT and GET when compared with the others, which were pacing and specialialist medical care,
“The trials were very strictly monitored, and by the end 95 per cent of those who started were able to complete them, which is a good follow rate for any trial. So we knew it was a clear difference – but was it an important one? The answer is it is a moderate one; it means that CBT and GET are useful treatments in a condition which is complex and difficult to find solutions, but they don’t help everyone.
“Of course we still need to find a cure, and what causes ME, but this kind of thing can take ten or 20 years, so we felt it was important to know what we can do now.
“The results showed that 20 per cent more people were doing better with CBT and GET than with other treatments. It’s not a magic cure, it’s not penicillin, but it’s certainly useful.
“We have provided the information about the treatments, it’s now up to patients, doctors and planners to decided how they use it.
“It is important to note the treatments were done on a one-to-one basis tailored to the patients’ needs and progress– we couldn’t have a situation where a patient was just told by a GP to go to the gym and work as hard as they could, because that could make them feel worse. It isnt up to me, but I find it hard to believe there would ever be a scenario where a patient was made to take any of these treatments.
“This relies on the co-operation of the patient, if they didn’t wish to do it there would be nothing that could be done about it, just like any other form of healthcare treatment.”
“IT COULD BE DANGEROUS… PEOPLE COULD END UP WORSE”
Liz Blackadder has battled ME for almost a quarter of a century, and has seen numerous theories come and go on our to cure or ease the condition.
This latest research, suggesting increased physical activity could be the key, has failed to convince here and many other patients across Edinburgh, who describe it as being “bullied into exercise”.
The prospect of being placed on a fitness regime is frightening for sufferers of the illness, many of whom can barely get out of bed in the morning.
The 64-year-old from Marchmont says that, given the scale, investment and reputation of the research trials, if the idea were adopted into formal health policy, it could spell disaster for vulnerable individuals.
“The problem with this study was that it included people from a very wide-ranging group, and some of them would have had chronic fatigue syndrome rather than ME,” she says.
“The risk is this policy is adopted and people, if they cannot manage to take on the exercise programme suggested, could be seen as unco-operative and could end up losing health insurance and bringing pressure from the Department of Work and Pensions.”
She says she has only come across one individual in Edinburgh in favour of the study, and is also fearful that awareness of an illness which has battled to win recognition from both medics and the public could have receded.
“We don’t want people to read these studies and think this is simply a condition that needs bit of exercise to improve it,” she says.
“The culture has been changing. It would also be dangerous for someone with ME to read this and think they could easily exercise their way back to health, only to end up making their condition worse.
“£5 million was put into the trials and our suspicion is the results were decided upon almost before it begun. We’d prefer to see money going into research on what actually causes this.”
Although Ms Blackadder herself did not participate in the trial, she knows many who did.
Another problem, she cites, is that some members started the pilot exercise programme at such a low baseline and by the time the scheme finished, they were actually less active than when they began participating.
Ms Blackadder has suffered from ME since contracting gastric flu in 1986.
The severity of it has wavered over the year, with the worst case symptoms resembling the early stages of Alzheimer’s.
She admits that prior to diagnoses, in her job as a careers adviser, she was sceptical of people who claimed they could not work because of disability.
“There are good days and bad, but I would say overall my condition is getting gradually worse,” she says. “On a bad day, I can get out of bed, make some breakfast and that will be all. I will have to go back to bed.
“It isn’t just physical, it’s mental too. I won;t be able to read a book or use the computer, I just can’t respond to anything.
“Another issue is the pain. Of course it is difficult for people to understand this when ME isn’t visible, but for many the pain is a significant issue.
“The main problem we face is that this illness just isn’t that well recognised by the public or health professionals.”