The East Anglia ME Patient’s Partnership (EAME) and the 25% Severe ME Group.
PRESS RELEASE Nov 28 2007 (may be reposted)
New survey highlights the neglect of severe ME sufferers in Norfolk and Suffolk
(The survey can be downloaded from www.metrainingco.org.uk )
Very sick patients in this region are receiving no medical service whatsoever, rather they are being left for up to decades on end “just to get on with it”, according to a new survey released today by the East Anglia ME Patient’s Partnership (EAME) in conjunction with the 25% Severe ME Group; the only national charity representing those who have severe ME.
Myalgic Encephalomyelitis (ME) , five times more prevalent than AIDS in the UK, is a serious biomedical disorder. Only those in the final stages of terminal cancer or dying of AIDS can possibly know what it is like to experience the level of sickness that a severe ME patient has to endure for years , often decades on end . Yet the severely affected in Norfolk and Suffolk encounter disbelief, an almost total lack of proper biomedical treatment and even abuse from medical professionals .
One severely ill patient, for example, describes in the survey (attached) how they were forced to undergo :
“hospitalisation and enforced mobilization . I had to walk to the canteen to get food and drink which I only managed once a day.”
Another patient described how they saw a professional who ” had no compassion or understanding of ME . I felt like throwing myself under a bus when I was told I had no life, and that I should get out into the world and do more.”
Norfolk and Suffolk ME patients are asking for acceptance that they have a real illness. As this patient states : “My symptoms are downplayed and invalidated. My safety is at risk because I have no one to turn to give proper advice or medical help, even with severe symptoms. Without a biomedical service my life continues to be physically diminished. I am desperately physically ill, neglected and concerned for the future.”
EAME is currently lobbying hard for proper biomedical treatment and support for people with ME in East Anglia.
EAME executive member Greg Crowhurst comments :
“The people that this Report is about should not have to carry on suffering such serious symptoms without relief and without an appropriate service. People with ME need to be separated, absolutely , from people with a Chronic Fatigue; that is the great challenge of our time. There is an outstanding opportunity here for Norfolk and Suffolk to lead the way.”
Contact: Greg Crowhurst: firstname.lastname@example.org
Notes for Editors :
Greg Crowhurst , a registered nurse cares full time for his wife who has suffered from severe ME for 14 years. He is secretary of the 25% Severe ME Group and an executive member of EAME.
A video of his wife’s life with severe ME: This is Not Fatigue, can be viewed on YouTube:
There are an estimated 62 500 Severe ME sufferers in the UK
Promoting collaboration and communication about all aspects of Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) within East Anglia.
The East Anglia ME Patient Partnership’s goals are to work closely with regional health, education and social support services, and both local and national government policy makers to;
* Fight for the interests of people in East Anglia with ME, their carers and families.
* To inform and assist in the development of health, educational and support services for adults and children with ME.
* To promote research into the organic causes of ME and potential cures.
The East Anglia ME Patient Partnership group is an umbrella group with members representing local ME Support Groups from around the region.
It was formed to facilitate wide patient participation with health care providers and in particular, the Norfolk and Suffolk CFS/ME Service at the Lowestoft Hospital.
Within the region, ME/CFS clinics are organised into services serving Peterborough & Cambridgeshire and the “Norfolk and Suffolk ME/CFS Service”.
This latter clinic is the second largest of twelve Clinical Network Co-ordinating Centres in England for ME and has been established for many years.