From The Times, 25 January 2010 (Story by Penny Wark)
ME has no known cause and no cure. So why is more not being done to give hope to sufferers?
It says a lot about the public perception of myalgic encephalomyelitis (ME) that it is a surprise to find that Nicola Warner is lively, positive and talks a lot. That’s the initial impression anyway. It’s only when you spend a little time in her company that you notice a certain stillness or perhaps sadness in her face and it becomes obvious that she is not entirely well.
Nicola, now 27, was 12 when she became ill with glandular fever. A year later, having been bedridden for eight months, she was told by a paediatrician that she had ME. He gave her a factsheet that terrified her, she says. “It described my symptoms, the pain in my joints and my muscles, the overwhelming fatigue, dizzy spells, nausea, migraines, memory loss . . . I wanted to go back to school to be with my friends.”
On her first day back Nicola collapsed and had to be carried out of the lesson. That was her last day at school. The GP told her parents that if she didn’t get out of bed she would become paralysed. Every morning her mum helped her to walk the few steps from her bed to the bathroom in the family’s home in Theydon Bois, Essex. The first time, she took three hours.
“I couldn’t concentrate, couldn’t read or watch television, couldn’t have a conversation. So I couldn’t see my friends,” Nicola says. “It was incredibly lonely. Some people thought I was faking it — neighbours, friends, school, doctors. I wasn’t making it up, I wasn’t being lazy though I was isolated and depressed. It wasn’t a mental thing but because I wasn’t leading a normal life there were mental issues surrounding it.”
In recent days the trial of Kay Gilderdale, who has admitted assisting the suicide of her daughter, Lynn, an ME sufferer, but denies attempted murder, has raised the profile of the condition that has no known cause, no diagnostic test, no cure and few treatments. It is estimated that 250,000 people suffer from it in the UK, almost three times the number who have multiple sclerosis.
As Nicola discovered, ME has long been the butt of scepticism and it was only in 2002 that Sir Liam Donaldson, the chief medical officer, recognised it as a clinical condition. The Medical Research Council endorsed the view in 2003, the following year the Government allocated £8.5 million to develop 12 specialist centres across England and in 2007 NICE produced assessment and treatment guidelines.
Even so it has been hard to shift the suspicion that the condition is a malingerers’ charter and that it has a psychological basis, a proposition fiercely resisted over the years by vociferous campaigners. In the past their arguments were often emotional but today ME charities are more likely to refer the media to a relevant professional.
The ME community remains frustrated by studies that show that as many as 50 per cent of GPs don’t recognise the condition. Such is the hostility engendered by the debate that medical professionals who view ME as a psychiatric disorder declined to contribute to this article. “My views are too controversial to publish,” says one who believes that many patients develop ME, also known as chronic fatigue syndrome (CFS), in the context of work-related stress.
“It’s like a battlefield,” says Dr Neil Abbot, operations director of ME Research UK. He describes the lot of the ME patient as a “Kafkaesque nightmare”. “There isn’t any education on the illness in medical schools and the GP hasn’t got anywhere to go [for information].”
The scientific literature remains small: 2,500 articles over the past ten years compared with 20,000 for MS. What do we know about the condition? “It depends on what you mean by know,” Abbot replies. “There are thousands of individuals who are definitely ill. They think they have a physical illness and most of their families do too. Some are put in a box called ME/CFS, many aren’t diagnosed. The treatments on offer are psychologically based, such as cognitive behaviour therapy and graded exercise. They help some individuals to cope with the symptoms but they aren’t the answer. Our aim is to make people recognise that there is a biomedical problem to be addressed.”
Abbot estimates that a quarter of ME sufferers are housebound and some bedbound. Sue Waddle, a magistrate from Hampshire, looks after her daughter, Lauren, who became ill when she was 12 and has been “virtually bedbound” since she was 16. She is now 24, remains in pain, sensitive to noise and light, and leads an isolated life. “Her GP has prescribed different treatments as different parts of her body have failed,” says her mother. “We’ve had sympathy in the most part but I think doctors are frightened that you’re going to demand something they can’t give. Her quality of life is dreadful and, although it’s difficult to say, I can’t see her living a normal lifespan.”
Waddle is excited by last year’s Nevada study that linked the XMRV retrovirus to ME, even though this month a study by King’s and Imperial Colleges found no link. More trials are needed, and the Medical Research Council says that two or three further studies will be completed within three months, though it is possible that the virus is not causative but a passenger.
“If this link could be confirmed maybe there would be a treatment that would give my daughter a better quality of life,” Waddle says. “If I was a doctor or a scientist I would be asking what was wrong with Lynn Gilderdale and why was she allowed to rot in her room for 17 years without anyone being able to do anything about it? People who are severely affected by ME are terribly neglected.”
The ME community’s wish-list is summed up by Dr Charles Shepherd, the medical director of the ME Association. First, there is a need to find out how many people have the condition, because only then can their clinical abnormalities be assessed and effective health services planned. Second, there is a need for research, in particular into muscle abnormalities, the role of the immune response to infection, and the extent that common neural pathways are involved in chronic fatigue in ME and other illnesses such as Parkinson’s and MS. Third, there is a need for trials of potential treatments.
Shepherd points out that the impasse that surrounds ME is partly caused by the difficulty in defining it. “This is an illness that cuts across medical boundaries: immunology, endocrinology, neurology, muscle pathology, infection and gene expression. There is piecemeal research going on that is not taking account of the links that are probably there.”
Stephen Holgate, professor of immunopharmacology at the University of Southampton, chairs the Medical Research Council’s expert group on CFS/ME. “As a clinician who sees patients with this group of diseases I recognise there’s a real thing here, it’s not all psychiatric or psychological,” he says. “Unquestionably in some of these patients there are abnormalities and biochemical changes in the brain, the central nervous system, the spinal cord or the muscles. My personal view is that we’re not dealing with a single condition.”
In 2008-09 the MRC spent £728,000 on ME/CFS out of a total research budget of £704.2 million. The MRC is ready to commission more research on ME, he says, but the stigma and scepticism associated with the condition do not make it an attractive option for top quality scientists.
“The debate is so polarised that scientists are frightened to get involved,” says Holgate. “My aim is to get everyone round the table, so that instead of people throwing bricks at each other we can agree on the priorities, get some quality proposals written up and build confidence in the research community. The need for more research is urgent because what’s happening now is unacceptable for patients and it’s costing the Government a lot of money.”
Nicola Warner knows that her condition has limited her experience of independent living but, despite a relapse when she was 20 and periods when she has contemplated suicide, she holds on to her ambition of becoming an actress. With support from her GP, a local CFS team and Action for ME, she says that she is in control of her ME, “rather than it controlling me”. By limiting herself to achievable goals she has been stable for the past year and has written a novel. Her next goal is to get it published.