Independent: Letters

http://www.independent.co.uk/opinion/letters/letters-dont-lose-hope-over-me-1128193.html

Letters:

Don’t lose hope over ME

ME is a devastating illness, but don’t lose all hope

Monday, 15 December 2008

I read with great sadness and sympathy the article about Lynn Gilderdale’s illness (9 December).

Though her illness was not as severe, our daughter also suffered from ME. Like Lynn, she was an active and able 12-year-old, a very competent musician and athlete. She became racked with aches and pains, suffering headaches which blurred her vision for days, confining her to a darkened room. Movement was restricted and painful; climbing the stairs seemed equivalent to climbing a mountain. Her memory and concentration were severely limited. She could not focus on the television, and hadn’t enough strength to hold a book.

This lasted for nearly seven years, and there were many false dawns. We, too, suffered the scepticism of some people, including members of the medical profession. On one occasion a doctor implied that she was acting. No one could have maintained such a performance. No one would want to endure such inactivity, discomfort and seclusion.

Fortunately, we were supported by several very competent doctors, and family and friends. Slowly her condition improved and we found a school that allowed her to attend lessons when she was able. She eventually achieved sufficient grades to go to university where, despite periodic relapses, she achieved her degree. Although she has never recovered all her stamina, she is now a successful teacher.

I hope that this letter gives hope to those who are afflicted with ME.

Name and address supplied

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You printed incorrect information about ME. (“What is ME?”, 9 December). ME is formally recognised by the World Health Organisation as a neurological illness in which the immune system appears to be disabled following a viral infection or some other precipitating event. As well as the one symptom you mentioned – exhaustion – people with ME often experience muscle pain, digestive and memory problems, headaches and poor concentration, to name but a few.

To print that “the best treatment [for ME] is graded exercise therapy” is wholly misleading. In our recent survey of 3,000 patients with the illness, 34 per cent of respondents told us that graded exercise therapy had actually made them worse and 21 per cent reported no change in symptoms.

Sir Peter Spencer
Chief Executive
Action for ME

Bristol  http://www.afme.org.uk/news.asp

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ME controversy hampers research

There are some 240,000 people suffering from ME/Chronic Fatigue Syndrome (CFS) in this country (letters, 15 December). While a few can experience a reasonable quality of life, the majority are unable to function normally. Some 25 per cent are housebound or bedbound. Their suffering is made worse if they meet disbelief in their doctors.

Until recently there was little understanding about the illness, but in the past few years research funded by the CFS Research Foundation has found that 88 genes in the blood of sufferers are abnormal. This research may well lead us to the diagnostic test. We will then be seeking drugs to alleviate symptoms and then achieve a cure.

The foundation is seeking more scientists to help uncover the mysteries of this illness. In the last few years we have made progress but, sadly, because there has been such dissension about the illness among doctors, ambitious researchers have turned their backs on becoming involved. Yet this area of research is proving exciting and is rapidly extending our knowledge of this chronic disease. CFS/ME is recognised by the World Health Organisation and our own Medical Research Council is anxious to research the causes and a cure. But we desperately need talented scientists to further this research.

Anne Faulkner
Hon Director
CFS Research Foundation

Rickmansworth, Hertfordshire  http://www.cfsrf.com/

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