Fatigue syndrome funding and therapy
More funding is needed for CFS/ME research
Sir, We can assure Hilary Patten (letter, September 10) that biomedical research into chronic fatigue syndrome (CFS)/ME is taking place in the UK, funded by the CFS Research Foundation.
This small body is funding research into the genetic basis of the disease. A team at St George’s, University of London, have found that 88 genes in patients with the illness behave abnormally, while they remain normal in healthy people. These genes can be divided into seven subtypes, which interestingly show distinct clinical features.
However, this distressing illness needs well-planned studies and major funding to discover the causes, and then to find therapies and a cure. Some 240,000 people suffer from CFS/ME. Twenty-five per cent of them are housebound or bedbound; 25,000 children are sufferers and it is thought to be the greatest cause of absenteeism in schools.
It is difficult to understand how government departments can ignore the need for biomedical research to enable so many people to return to normal life. The CFS Research Foundation has shown the possibilities of discovering the basis of the disease, but it is up to the Government to take this forward and put an end to so much suffering.
Director, CFS Research Foundation
Sir, While we have sympathy for Ms Patten’s plight, research shows that a significant minority of people with CFS/ME can recover with treatment, and the majority improve.
The National Institute for Health and Clinical Excellence guidelines, published last year, were based on the largest ever systematic review of the management of the illness, and recommended rehabilitative treatments, such as cognitive behaviour therapy, and graded exercise therapy as safe and effective.
Although CFS/ME can be triggered by some infections, there is no reliable evidence of persistent infection, and the heart and cardiac function are normal, apart from the effects of deconditioning. To the best of our knowledge, no patient has ever died directly as a result of CFS/ME and follow-up studies show no increased risk of dying.
Yes, more research is needed to understand the illness, but both access to currently available treatments and realistic hope for recovery are equally important.
Professor Peter White
Dr Maurice Murphy
St Bartholomew’s Hospital, London
Hilary Patten’s letter (published September 10)
ME needs research
It is impossible to recover from ME and the Government has not spent a single penny on biomedical research
Sir, I was pleased to read that Anna Hemmings, the canoeist, has recovered from her illness and is now competing again (report, Sept 7). However, it is impossible to recover from the serious, sometimes fatal, neurological illness, myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome, through mental determination and physical exercise. In fact, increasing activity levels can lead to a relapse.
There is overwhelming evidence that ME has a viral, bacterial or parasitic cause and that the heart is usually affected. One quarter of sufferers are severely affected, some spending their lives in darkened rooms unable to talk.
In the 20 years that I have been housebound with severe ME the Government has not spent a single penny on biomedical research into ME. The only treatments available are cognitive behaviour therapy and graded exercise therapy, which, studies have shown, can make some sufferers worse. The situation for UK sufferers is scandalous — no biomedical research or tests, and no effective treatment. A British woman recently chose to take her own life in a Swiss clinic because she could not live with the debilitating illness.