Hidden thousands devastated by myalgic encephalomyelitis

May 11 2006

New research published by the UK's leading Myalgic Encephalomyelitis (M.E.) charity, Action for M.E., suggests that a hidden 55,000 people in Britain are so severely affected by the illness that they're either bed-bound or house-bound.

M.E. also has a huge economic impact. Today's survey suggests that 77% of the total 240,000  people in the UK with M.E. have lost their jobs because of the illness, with a cost to the nation of £6.4 billion a year .

The 55,000 severely affected by M.E. are likely to have been ill for many years, and are often too ill to attend hospitals or doctors surgeries. They are also likely to suffer from severe pain, which few people realise is regularly associated with the illness.

The survey findings, published as part of Action for M.E.'s campaign: "M.E. - More Than You Know", provide the most up-to-date, detailed analysis on the severity and impact of the illness ever carried out in this country.

Trish Taylor, Chair of Action for M.E., says:  "M.E. devastates lives.  It robs people of their ability to work, and destroys their close relationships.  It leaves many sufferers in wheelchairs and some, who are unable to feed themselves, have to be tube-fed.

"M.E. is much, much more than feeling ‘a bit tired'.  And if that is what you believe then today we challenge you to think again.  To look with new eyes at those who live with the severe pain and suffering this disease brings."

The results are released alongside a separate GB-wide Ipsos MORI survey, which showed that a third (35%) of the general public has never even heard of M.E. when prompted, despite there being almost three times as many people with M.E. as M.S.   

Only 5% of the respondents who were aware of M.E. were aware of how widespread it is (stating that between 200,000 and 300,000 people suffered from M.E. in the UK), with one third (34%) believing there were less than 50,000 sufferers in the UK.

M.E. is a painful and debilitating illness, affecting around one in every 250 people in the UK.  The illness affects many body systems and their functions, particularly the nervous and immune systems.  In 2002, the British Government gave formal recognition to the illness. It is also recognised by the World Health Organisation as a neurological condition.

M.E. (Myalgic Encephalomyelitis/Encephalopathy) is also known as Chronic Fatigue Syndrome (CFS) and sometimes diagnosed as Post Viral Fatigue Syndrome (PVFS).

Research Summary

• Severity of illness:  Action for M.E.'s survey of 2,200 people with M.E. found that 23% of them were either bed- or housebound. Those who'd had M.E. the longest i.e. over ten years - 49% respondents - were the most likely to describe their illness as severe or very severe (28%).   74% of all respondents were either bed- or housebound when their illness was at its worst.
•  Pain:67% of respondents experience pain on a constant or daily basis.  73% of respondents reported experiencing severe or very severe pain when their illness was at its worst.
• Loss of employment:  Before developing M.E., 63% of those questioned worked full-time, compared to 6% after.  Over a quarter of those who lost their jobs were either dismissed or forced to resign.
• Symptoms: 83% of respondents experienced severe flu-like malaise when their illness was at its worst, and over half (55%) still do.  50% also list digestive problems as a symptom of the illness. 89% felt that M.E. had affected their ability to learn new things – even amongst those who described their symptoms as mild.

http://www.afme.org.uk