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The trouble with ME

Tuesday 18 May 2010

Lynn Gilderdale
Lynn Gilderdale contracted ME when she was 14.
Her mother helped her to die when she was 31.
Photograph: David Cairns/Rex Features

UK newspaper The Guardian has an article about ME/CFS:

The trouble with ME

We mark ME awareness week with a report on the latest research into chronic fatigue syndrome – and the controversy that surrounds the subject

Sarah Boseley, Thursday 13 May 2010 21.00 BST

Kay Gilderdale helped her 31-year-old daughter to kill herself over the course of one long December night, crushing up sleeping pills and antidepressants when the morphine overdose she gave her to inject did not immediately work. It's almost incredible to think that a mother and daughter could be driven to such hellish extremes by a disease that is not fatal. Lynn Gilderdale had ME.

But Lynn's extraordinary and distressing story takes few people acquainted with ME (myalgic encephalopathy), also known as CFS (chronic fatigue syndrome), by surprise. If nothing else, it illustrates the despair that ME/CFS engenders. An estimated 250,000 people have the condition in this country, of whom 25,000 are children (Lynn became ill at 14). Most struggle to get a diagnosis, many are unhappy with the limited treatments available and all want to know what has caused them to be afflicted with this most miserable of illnesses, which saps their energy, wrecks their lives and leaves some like Lynn bedridden and tube-fed.

Last autumn, it suddenly looked as though they were going to get an answer. A paper was published in the highly regarded journal Science by the Whittemore Peterson Institute (WPI) in Reno, Nevada, a research establishment set up by Annette Whittemore, the wife of a millionaire who had made money in property. Their daughter, Andrea, developed ME/CFS when she was 11. Whittemore, searching for help for her daughter, met Daniel Peterson, a general practitioner who brought to light one of the earliest ME clusters more than 30 years ago, in Incline Village on the north shore of Lake Tahoe in Nevada, where he practised medicine. The two of them launched the WPI as a research centre dedicated to finding answers, and treatments for ME/CFS.

Peterson is one of many who believe the disease probably has a viral trigger. There is evidence that it can follow a viral infection, such as glandular fever. He put Andrea Whittemore on an experimental antiviral drug, which her mother has said has led to improvement.

Some cancers – cervical cancer is the best example – can also be triggered by a virus. In Incline Village, Peterson reported he had found a surprising number of rare cancers called mantle cell lymphoma, a form of non-Hodgkin's lymphoma, among his ME/CFS patients. That attracted the attention of a cancer researcher, Dr Judy Mikovits. She joined WPI and went to work to look for a viral trigger for the cancer cluster.

Mikovits was soon reporting that she had found high levels of viruses in the ME/CFS patients by comparison. And then, in the Science paper in October, came the revelation that rocked the ME/CFS community as well as scientists around the world. Mikovits, with Vincent Lombardi and other colleagues from the WPI, reported that they had found a recently discovered retrovirus called XMRV in the blood cells of 68 out of 101 ME/CFS patients they had tested.

The implications were huge. If the virus were proven to be the cause of ME/CFS, then treatment could not be far away. It would also, in the eyes of many of the angriest campaigners, put paid to arguments that ME/CFS is predominanantly a psychosocial disorder – a theory they abhor and which has led to extraordinary invective, denunciations and bitterness, especially on the internet.

Annette Whittemore was certainly convinced her institute had found the biological key to the disease that cut down her "beautiful daughter who has been ill for 20 years in spite of our best efforts". Speaking to the CFS advisory committee of the US government's Department for Health and Human Sciences in late October, she said: "It ends the debate. CFS is not and never was a psychological disorder. Those who are ill have always known this. The physicians who take care of them have always known this and finally those who have attempted to keep patients from receiving medical care for this disease know this."

The full article can be found here.

Please note: This article contains references to death. If you have feelings of helplessness, or of suicidal thoughts, seek help immediately. Lifeline is an excellent starting point: Lifeline – Suicide Prevention resources and links.



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