ME: a debilitating illness with no known cure

January 25, 2010

From The Times Online: 25 January 2010

Lynn Gilderdale had ME diagnosed at the age of 14, triggering her descent from an active teenager to a lonely, bed-ridden young woman dependent on round-the-clock care.

Here are some facts about the condition:

— Around 250,000 people in the UK are thought to have myalgic encephalopathy, known as ME, or Chronic Fatigue Syndrome (CFS)

— ME affects many parts of the body such as the nervous and immune systems

The most common symptoms are severe fatigue or exhaustion, problems with memory and concentration and muscle pain.

— The exact cause of the condition is unknown, but some viral infections, such as glandular fever and traumatic events can act as triggers

— There is no accepted cure and no universally effective treatment. Treatments that have reduced particular symptoms in some have proved ineffective or counter-productive in others

— Famous ME sufferers include the novelist and former yachtswoman Clare Francis, the Duchess of Kent and Emily Wilcox, eldest daughter of Esther Rantzen and her late husband Desmond Wilcox

— It was first diagnosed in 1955 after an outbreak of an unexplained illness in London but it did not become widely known until the 1980s, when it was named “yuppie flu”. In the 19th Century what was popularly known as “the vapours” may have been ME

— Some of the most serious cases are said to involve teenagers aged between 13 and 16

— Predisposing factors to developing ME are thought to include: having other sufferers in the family; altered immune response, due possibly to previous infections such as glandular fever or hepatitis; exhaustion and mental stress, for example, athletic over-training or stress from work

— Results from studies indicate that ME often becomes a chronic and very disabling illness, with full recovery occurring in only a small number of cases

— A series of recommendations were made in December last year after an all-party parliamentary group (APPG) inquiry into NHS provision for ME/CFS sufferers

The APPG said that it was aware of many severely ill patients receiving either inadequate care or no NHS care at all. It called for specialist referral services to ensure that high priority is given to those severely affected.


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