Ever since I read Sophia's Story I can't stop thinking about her and the anguish her loved ones must have gone through and must still be going through now. Thanks meezermagic for showing it to me. I wonder how many other people have died as a result of being mistreated or ignored because they have ME?
Conventional medicine is not much help with this condition, but what makes it worse is that it seems most doctors do not even recognise the illness and certainly do not even want to try to help. Amongst my own friends I can count at least 4 ME sufferers for whom the NHS has failed. Another friend who has now sadly died of an unrelated condition, was urged by her very understanding Consultant not to allow the diagnosis of ME to be put in her notes. He told her that clinicians treating her main (possibly terminal) condition would never take her seriously if they saw the words ME.
All this depresses me greatly and I am in a place now where I wonder what on earth is going on and why do the psychiatrists always have all the (wrong) answers, the loudest voices and the greatest stranglehold over the treatment of this condition? Is it because they actually have more time to make themselves heard? Maybe the doctors that really care are just too busy fire fighting with real patients.
4 comments:
Thanks for reposting this story, Jas. There are more stories like it on www.investinme.org on their Media pages.
I hope you don't mind, but I have put a link to your Blog on my own one.
I think all we can do is keep publishing the truth as it really is, not how the medical Establishment would like it to be. Sooner or later, our voices must surely be heard.
The inquest on Sophia is to be held on Tuesday13th June 2006.
If we could manage to generate a lot of interest and attention to the Inquest, I think it would help.
My email address is meezermagic@gmail.com if you would like us to think through a strategy together.
I guess I am very lucky to have the competent medical care I do have. I had never heard of CF or of FM when I was diagnosed with the conditions by a doctor who was teaching and supervising specialists.
I have heard much sadness from many, I was sent to a psychiatrist who said, "There is nothing wrong with you mentally, you have a physical problem and I wish you luck as we don't know much at all about it."
My physicians were and are now honest.
What a sad situation.
Canada is a bit different Terry. The best diagnostic criteria were drawn up there for a start.
xx
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