Monday, May 22, 2006

The puzzle of ME moves a little closer to being solved

A friend has just emailed me a very good report by Barbara Lantin, Telegraph 15 May 2006. Copy in full:

Could a reduction in grey matter be to blame for Chronic Fatigue Syndrome? Barbara Lantin reports

It is a disease with no cure, diagnostic test or clearly identifiable cause and few treatments. People cannot even agree about its name. And yet, there is no doubting the impact of Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), or Post-Viral Fatigue Syndrome.

A survey published last week suggests that of the 250,000 sufferers in this country, 77 per cent have lost their jobs because of the illness - at a cost to the economy of £6.4 billion a year. Fifty-five thousand cannot leave their homes; some of them are bed-bound.

For years, ME was dismissed by the medical profession - and almost everyone else - as the figment of fevered imaginations; it was branded as "yuppy flu" and said to strike those with nothing else to worry about. In 2002, that canard was skewered by an announcement from the Chief Medical Officer, Dr Liam Donaldson, that "CFS/ME is a debilitating and distressing condition", a chronic illness, requiring early diagnosis - which, in the absence of a test, is made from symptoms - appropriate care and scientific research.

Since then, there has been good and bad news. The Government ring-fenced £8.5 million to develop new services for people with ME, which included the funding for 47 multi-disciplinary medical teams that have treated around 9,000 people. To date, the Medical Research Council (MRC) has funded two major trials into therapies for the condition and, next April, the National Institute for Health and Clinical Excellence (Nice) will deliver guidelines for assessment and treatment.

Certainly, attitudes have shifted. The new survey, published by the charity Action for ME, shows that patients are almost twice as likely to be diagnosed within six months as they were 10 years ago, and that most are confident their doctors recognise ME as a physical illness.

But the Department of Health's commitment to advancing research into ME has, so far, come to nothing. Researchers are slowly building up a picture of what lies behind the illness - which is commonly triggered by a viral infection - and believe that drug treatments and a diagnostic test are not far away. But not one biomedical study - which relates the application of science to medicine - has received MRC funding.

Dr Jonathan Kerr, whose team at St George's Hospital, University of London - funded by a tiny charity, the CFS Research Foundation - will later this year begin a clinical trial of beta Interferon (an immuno-modulatory drug usually used in multiple sclerosis), says: "It seems extraordinary and very sad that there is no Government support for biomedical studies of ME. We have applied for funding from the MRC and been turned down."

Trish Taylor, chairman of Action for ME, which, in a bid to attract researchers into the field, is organising a joint conference with the MRC later this year, says: "We were all very optimistic when the Chief Medical Officer made his statement, but until there is fully funded research, people are essentially being left to cope on their own.

"This must be the only condition where the more seriously you are affected, the less care you receive, because there are very few domiciliary services or hospital beds available. ME is much more than feeling a 'bit tired': it devastates lives, robs people of their ability to work and destroys relationships."

Two-thirds of respondents to the charity's survey say they experience constant or daily pain and three-quarters had been bed- or house-bound at some time.

"We heard of a teenage boy who went to his bedroom six years ago and hasn't come down since, and a 28-year-old woman who has been paralysed and bed-bound for 14 years. She used to sail and swim and play the piano and hoped to go to music school. Now she is unable to speak, is fed through a tube and was only recently discharged from hospital."

ME is notoriously hard to diagnose. The usually accepted definition is: newly acquired fatigue lasting for more than six months that is not the result of known disease or exertion and is not alleviated by rest. At least four of the following eight symptoms must also be present: impaired memory or concentration, sore throat, tender lymph nodes, muscle pain, joint pain, headaches, unrefreshing sleep, and malaise after exertion.

Although many treatments are touted for ME, scientific evidence for their efficacy is scant. Most children eventually recover, adults rarely do without treatment.

BestTreatments, the British Medical Journal website, lists only Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) - a closely monitored aerobic exercise programme - as "treatments that are likely to work" for the condition.

Some dismiss these as coping strategies rather than cures. Others are concerned that their use reinforces the view that ME is "all in the mind". Peter White, professor of psychological medicine at Queen Mary School of Medicine, London, who is running the MRC-funded trial into these therapies -"Pacing, Activity and Cognitive behaviour therapy: a randomised Evaluation" (PACE) - disagrees.

"CBT has been shown in five trials to be an effective treatment for ME and in uncontrolled studies people who are quite severely disabled have made significant improvements on a GET programme that is tailor-made for the individual. I do not believe that ME is a psychological illness. It is one that affects the mind and the body - and which illness does not? We do a disservice to patients if we try to separate the two."

In some studies, CBT has been shown to restore abnormal brain function to normal. Researchers in Holland are investigating whether it can reverse the reduction in the size of grey matter in the brain, which is associated with ME.

"An ME patient of 35 has grey matter the same size as a non-affected person 15 years older," says Jos van der Meer, professor of internal medicine at Radboud University Medical Centre in Nijmegen. "We do not know whether this is a cause or an effect of ME, or whether it is reversible."

Prof van der Meer has also found that patients with ME react more to normal stimuli. "They sense more fatigue and more pain. This is about perception, but it is not psychiatry. It is very real and probably at the level of neurotransmitters giving signals that are too strong - as we can see when we do MRI scans on ME patients performing simple tasks."

Other research has shown excessive levels of cell-damaging free radicals in blood, urine and muscle tissue. And Dr Kerr has identified 100 "faulty" genes. "The gene expression in white blood cells appears to be very different. These are genes involved in the immune response and regulation of cell processes.

"We need to make sure these abnormalities are specific to ME and connect them with particular symptoms. We will use this information to tell us which metabolic pathways are abnormal and then use novel treatments to normalise these pathways. Within five years, I think we will have a diagnostic test for ME and hopefully a treatment that works for a significant percentage."

Many now believe that ME will turn out to be not a single syndrome with a unique "thumbprint" but a ragbag of common symptoms with many causes. "The medium- to long-term aim is to determine a clinical or scientific thumbprint for each of the specific subgroups of ME patients," says Dr Neil Abbott, director of operations for MERGE, a national ME research charity. "For the first time in many years, I feel optimistic about potential biomedical advances."

Action for ME; 0845 123 2380, MERGE;


Post a Comment

<< Home