The East Anglia ME Patient's Partnership (EAME) and the 25% Severe ME
PRESS RELEASE Nov 28 2007 (may be reposted)
New survey highlights the neglect of severe ME sufferers in Norfolk
(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
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 : http://uk.youtube.com/watch?v=NZP1z9EdVi8
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
* 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
This latter clinic is the second largest of twelve Clinical Network
Co-ordinating Centres in England for ME and has been established for
* * *
This is a complaint around the world -- a lack of educated, compassionate doctors who know Thing One about CFS. There used to be two CFS specialists in my area; for more than ten years, I tried to get an appointment with one or the other, and was always told "Doctor isn't taking new patients". They've since both retired, so there is no one in the area who is considered a competent CFS specialist by patients. (There's one who calls himself a CFS specialist, but treats every patient for candida; those who have candida on top of CFS improve and those of us who don't, have simply wasted our money.)
Instead, we deal with doctors who try to jolly us, that our symptoms can't possibly be as bad as we say, or maybe they don't exist at all, and refuse to consider any informational literature provided by patients. If the patient tries to educate them that anti-depressants are proven completely useless against CFS, the patient is accused of not wanting to take the anti-depressants because she "doesn't want to get better and have to go back to work". There's no compassion to be had, only verbal abuse; patients who've been hospitalized have described physical abuse as well.
There are reports that patients too sick to walk were told to get up and get their own drink of water because hospital staff refused to believe the paralytic muscle weakness was anything other than laziness, or a manipulative attempt to be waited on. I can tell you, as a patient who lives alone with no one to manipulate that way ... when I crumple to the floor, it's for real. No one is here to feel sorry for me. No one's going to bring me breakfast in bed. I could lay on the floor for a few days before anyone would discover me.
All those "secondary gains" that doctors assume we're getting are not there for me or the many other patients whose spouses got fed up and walked out. Which doesn't stop the doctors from assuming that there's someone other than a spouse available to take care of us.