24 September 07
CFS/ME – Not Just a White Illness
Once dismissed as “Yuppie Flu”, chronic fatigue syndrome (CFS) or ME (myalgic encephalomyelitis) is now recognised by the World Health Organisation as a neurological illness, despite there being no accepted cure or universally effective treatment.
The condition is being taken seriously, with the National Institute for Health and Clinical Excellence (NICE) issuing guidelines to GPs and health professionals that they should acknowledge the reality and impact of the illness and its symptoms.
An estimated 250,000 people in the UK suffer from ME. It can affect anyone but most commonly strikes people aged 20 40. There is no known cause for this illness but typically sufferers of this illness report that their symptoms began after a viral or bacterial infection, or a period of stress. It is characterised by overwhelming exhaustion of both muscle and mind and malaise accompanied by many other symptoms. The primary indicator is a worsening of symptoms following physical or mental exertion, beyond an individual’s tolerance level.
It can develop slowly, over months or years. Some people do seem to recover from it, though an estimated 25% suffer chronically and are left bedbound or housebound for many years.
Network ME is a registered charity based in Edmonton, North London. The organisation is providing many bespoke services to its clients. Importantly, they are the only ME charity within the UK actively reaching out to Black and Ethnic minority Communities raising awareness of this debilitating illness.
” We have spoken to many ethnic groups within London and were astonished to find that there was very little knowledge on this illness within these communities,” said Mirna Peach, Coordinator of Network ME. “Those who have exhibited symptoms of this condition were unable to access proper care from the GPs, perhaps because of language and cultural barriers. Many experience disbelief from friends and family and are being left feeling isolated with nowhere to turn.”
In an effort to combat this situation, Network ME has developed a series of leaflets and translated these into 8 languages. They have recruited volunteers from specific ethnic backgrounds to provide culturally sensitive services all aimed at raising awareness within community groups and ensuring that there is equal and fair access to the treatments that are available.
“We need to make certain that our clients are being educated on this illness. It is important to let them know that they are not alone and that there is support for them if they need it. Our volunteers are advocates, doctors and counsellors. Many have strong links with their community and are passionate about tackling health issues that affect them. A report by the BMA (British Medical Association) suggest that people from BME backgrounds face a variety of specific barriers to accessing services, including cultural and language barriers as well as evidence of racist attitudes, practices and procedures that are discriminatory in outcome, if not in intent.
” It is no longer acceptable that these communities should have to receive second class services. By empowering them and giving them an informed voice, we hope to begin closing the health gap so that there is fair and equal treatment for all.”
The focus of this project will now take on a national scope, with Network ME directly contacting many BME groups around the UK.
To find out more information on this illness or to receive an information pack, please contact Mirna Peach on 020 8373 6298, or visit Network ME
Notes to Editors
CFS/ME – Not Just a White Illness
This is a unique project of national significance. Network ME is the only CFS/ME charity actively reaching out to ethnic communities to raise awareness of this illness.
Information packs are available in: Hindi, Punjabi, Somali, French, Arabic, Greek, Turkish, Bengali