Tuesday, October 13, 1998 Published at 01:40 GMT 02:40 UK
Ethnic minorities suffer ME in silence
M.E. groups are targetting ethnic minorities
ME is likely to affect many people from ethnic minorities but they may not be coming forward for treatment because of its portrayal as "yuppie flu", a leading charity has said.
Action for ME is launching a nationwide inquiry on Tuesday to find out how widespread the disease - myalgic encephalomyelitis - is among ethnic minorities.
It says its membership is mostly white and it believes it is failing to reach some sections of the community.
"There are a number of reasons why this is happening," said Rahana Mohammed, the organisation's ethnic minorities development officer.
"It could be that levels of awareness about ME or chronic fatigue syndrome and its symptoms are low among ethnic minorities.
"There is also a perception in the medical profession and among other professionals that ME is a white illness which may mean that people are being misdiagnosed with depression and other illnesses," she added.
She said media reports about the illness portrayed it as a disease of white professionals when it affected people across the class spectrum.
The campaign to raise awareness of ME among ethnic minorities includes targeting of ethnic minority media and pilot projects working with community groups in some parts of the country.
The charity will also be working with other voluntary organisations, such as the Multiple Sclerosis Society, which are also trying to raise their profile among people from ethnic minorities.
Action on ME says it is estimated that around 250,000 people in the UK are suffering from ME, but there are no exact figures.
Action for ME's chief executive is deputy chairman of the group, which will also include ME sufferers and their carers.
The charity hopes the group will publish guidelines on how to deal with the illness and how to diagnose it, as well as increasing data on those who suffer from it.
"We are still getting a lot of people slipping through the cracks. A recent task force showed that there was no consistency in treatment around the country. Some doctors still don't think it is a real illness," said Rahana Mohammed.
It is not known what causes ME, but the charity says many people seem to develop it after catching a viral or bacterial infection or because they have overused antibiotics.
Other possible causes include poor diet, allergies and exposure to certain chemicals.
Action for ME says the earlier it is diagnosed, the greater people's chances are of making a full recovery.
Up to 25% of people who have it end up permanently disabled. Symptoms include chronic fatigue, muscle pains and migraines, but they can fluctuate.
Some people have periods of remission and relapse, which can cause great damage to relationships and work.
The charity advises people to pace themselves when they think they are getting better. Some, it says, push themselves once they begin to get better only to suffer a relapse.
Action for ME began 11 years ago and gives advice on therapy and treatment, as well as campaigning for more awareness of the illness.