First official death from Chronic Fatigue Syndrome
From the New Scientist.
"On Tuesday, coroner Veronica Hamilton-Deeley of Brighton and Hove Coroners Court, UK, recorded the cause of death of a 32-year-old woman as acute aneuric renal failure (failure to produce urine) due to dehydration as a result of CFS. The deceased woman, Sophia Mirza, had suffered from CFS for six years."
Sophia had refused any further medical intervention after her doctor, disbelieving her illness was real, had her sectioned under the Mental Health Act. She was one year younger than me.
Here is Sophia's story as told by her mother.
(with thanks to my anonymous friend)
12 comments:
Society MUST cease idolising doctors.
They are very good at first aid for bleeding and broken bones, but beyond that, forget it. Because GP's deal all day every day with blood shit vomit and pus, they are sour unhappy people, often heavy drinkers or 'into their own bag' (and who would blame them?).
My pain is driving me insane and since 1993 none of the medically qualified people I have seen, have been any use at all.
Criona's story is gutwrenching and I feel so angry on her behalf.
When I was a kid the doc gave my mum the wrong medicine which nearly killed her. She was in hospital for six weeks and one of the hospital doctors told her there are more people in their graves from doctors' mistakes than from any other cause. I have no way of knowing if that's true, but that's what he said.
In Sophia's case it wasn't even a mistake, more like callous indifference. You wonder what motivates people like that to become doctors in the first place. Highly paid, secure profession?
It would be nice to know, given what they're finding out from Sophia now, that those officious nincompoops feel like shit but they probably don't have enough normal human feelings for it to affect them that way.
In cases like this in the future maybe blogs such as yours can help break through the insularity of the 'professionals' by shining a nice bright light on their stupidity.
This article says there have been lots of other deaths
http://www.meactionuk.org.uk/Inquest_Implications.htm
Well that article was an edifying read thanks, Anon.
After about 10 years, the quacks have the sufferer doubting their own sanity.
This condition is so weird, that none of them believe it can be true.
Every single moment, there is sharp pain at at least one place in my body - at this exact moment it is my left shin - it is screaming. very soon it will be somewhere else. It is neuropathic. Suicide is a constant thought.
brownie - I found the article vis here http://listserv.nodak.edu/archives/co-cure.html
Sorry I've not been joining in the conversation, I'm a bit ill at the moment with an invisible condition that doesn't exist.
Cheers Dear Scribbles - hope you improve quickly. 8 on a scale of 10 myself today, so, because I caught staphylococcus one time when I was a hospital patient, I wondered if that could be the virus of the FM/CFS 'virus as a cause' theory, and Googled (staphylococcus+fibromyalgia) and one of the resulting websites said:
"The carriage of toxin-producing staphylococcus strains seems to be associated with the reported pain intensity.
As the carriage of the toxin-producing strains increases, so does the magnitude of the catabolic response.
These toxin-producing species may possibly be agents in instigating the catabolic host response and causing or contributing to the presentation of pain."
Do you have a view on this?
(Anon: thanks for new link, going now.)
Back from searching Anon's link for staphylococcus - 47 results, including:
"the strains of staphylococcus coming from the mouths of CFS patients have been isolated by some Australian scientists under the leadership of Professor Tim Roberts, and reveal an ability to produce significant quantities of toxins harmful to the pathogenic cell membranes.
By contrast, strains coming from healthy persons did not produce these toxins.
Brownie - did I post this link before? I can't remember
http://www.ahummingbirdsguide.com
I also read some stuff about ciguatera - I have no idea what that's all about.
Shocking stuff. At this stage I wouldn't be game to show this to our daughter, who has been so very ill. Luckily we found in Melbourne Australia a doctor who practices "integrative" medicine... meaning that she uses nutritional as well as allpathic medicine.
Our daughter "crashed" and I mean crashed... bed bound, sweats pain awful awful stuff. Her very slow progress has been beset by so much real suffering. Sometimes my heart has felt like it is bleeding.
Her doc finally did some thyroid work after years of other stuff when she was under different docs... but also did a Kryptopyroluria (?)test on her and found that like many of celtic descent she tested positive.
http://www.nutritional-healing.com.au/content/articles-content.php?heading=Pyroluria
this is just one aspect but each helps a little and I hope and pray that at some time in her future the balance is struck for her ans she can have her youth which has been stolen from her by a dangerously polutted 20/21st century; a medical profession which is in the dark ages and is fanatical about control etc etc etc...
God help us all but God help our children even more.
Middle child, so sorry to hear about your daughter. It's reading about the kids this thing effects that gets me the most.
Doctors are just as capable of being as wrong and incompetent as the rest of us. It's just that they don't see that.
Brownie - you've taught me something. Never heard of a connection between fibro and staphyloccus before. But then it makes sense, because for some people some things (virus, bacteria, chemical, illegal drug, legal drug etc) do seem to act as a toxin and set off some sort of neuro-immune-endocrine cascade of destruction.
Middlechild,
Hey, I'm have a kryptopyroluria sufferer and was just bout 2 say that without my doctor- who is also in melbourne, australia i woulnt have known and it could have gotten really bad for me.
my doctor whodiagnosed me wasnt a amazing and she got my supplements and medications wrong
however doctor bramham rabinov is fantastic. He got it spot on so pretty much i think it all just depends who you go too.
p.
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