Care for Someone with Severe ME, now released in print.
Stonebird is delighted to announce that finally the paperback version of Care for Someone with Severe
ME is ready and available to purchase :
http://www.stonebird.co.uk/howtosevereme.html
There has never been a more pertinent time to be raising awareness of the reality of Severe ME - witness the unfolding events inDenmark
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There has never been a more pertinent time to be raising awareness of the reality of Severe ME - witness the unfolding events in
In our painful experience, the danger to people's health is
growing .
Even here in the UK ,
where ME is officially recognised as neurological , the truth of the disease is being
gradually diminished , as experience it, in a deepening sea of fatigue- speak.
To our great concern we see middle of the road medical teams and
researchers - who profess to be biomedical, still following a psychosocial interpretation , still using
the same old fatigue language, still not
challenging the establishment,
still compromising ME away, still hindering genuine knowledge , still making the person with ME wrong, rather than looking to their own
inadequacies, their lack of knowledge
and disrespect for the true nature and symptoms of ME .
The new danger to us, is
the danger of complacency, : a shocking
willingness ,in the medical and research
fields to accept that psychiatry has the right to be involved with ME, a willingness
to call ME a fatigue condition, a willingness to blur boundaries that
should be crisp and clear and separate, a willingness to accept
psychiatric interpretations, a willingness to call illnesses
that are not ME, "ME" -
and to call ME, "CFS" .
These "compromisers", high profile in many cases, are just as dangerous, in our view, as the hard line psychiatric lobby ; for they are still busy throwing away the truth of ME for some other prize whether that is financial gain, funding, security, status or just ignorance.
The word "fatigue" is not appropriate for ME.
During the course of writing my book three young women with Severe ME , including Emily Collingridge, died. My wife , seriously ill and now greatly deteriorated, does not want to die too, just because not enough people have the guts to challenge the psychiatric lobby , not enough professionals have the integrity to challenge government policies , attitudes , wrong health service provision and assumptions and not enough ME organizations are really representing people with ME.
The voice of truth is desperately needed, in these dangerous times for people with Severe ME. ME is not fatigue, this book shines a light on the reality of the WHO neurological disease Myalgic Encephalomyelitis.
Sadly I agree with this entire post. A year I go I saw the tide turning, new hope, new opportunities. Today, it is frightening me what I am seeing. As you say, the compromisers, the complacency. I have never felt so disillusioned ...........
ReplyDeleteMe is a nasty illness and even worse for the 25% who are severly ill. They are too ill for nursing homes and hospitals. They need dedicated respite services which are quiet and cater for light and sound sensitive individuals with high needs. The ignorance of people who call anything they don't understand "psychological" appalls me. It is very easy to distance ones self from anothers problem, if you can prove or suggest it is a figment of their imagination. It is a sad reflection of our society that many are too busy to care or willing to be educated. They do not want to be confused by the truth as their minds are made up.
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