Posted on 06/16/2006 8:22:50 AM PDT by aculeus
Chronic fatigue syndrome has been given as an official cause of death – apparently for the first time in the world.
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.
CFS, which is also known as myalgic encephalomyelitis (ME), has a variety of devastating symptoms ranging from extreme weakness, inability to concentrate and persistent headache. Sufferers can have the disease for years, but its cause remains controversial, with fiercely opposing views from psychiatrists on one side and biologically minded physicians on the other.
The coroner’s verdict is a breakthrough for those who argue that CFS is a physical condition, possibly with its roots in the immune system. Dominic O’Donovan, a neuropathologist at Oldchurch Hospital in Romford, UK, who gave evidence at the inquest, said that Sophia’s spinal cord showed inflammation caused by dorsal root ganglionitis - a clear physical manifestation of the disease.
Overactive immune response CFS specialist Jonathan Kerr of St George's, University of London, says he is not surprised that inflammation in the spinal cord has been found in someone with the disease, as it is known to be associated with it. He says that the immune system tends to be over-activated in people with CFS and this may underlie the inflammation of the neurological tissue.
“People have been reluctant to subscribe to the biological side because of the power of the psychiatric lobby,” says Kerr. “Doctors are sceptical about the existence of CFS and there is controversy about its underlying cause.”
Abhijit Chaudhuri, a consultant neurologist at the Essex Centre of Neurological Science who worked with O’Donovan on Sophia’s case, says the changes to her spinal cord may have resulted in symptoms of chronic fatigue.
“Sophia’s case sheds light on CFS because there were changes in her dorsal ganglia – the gatekeepers to sensation in the brain – and we know that fatigue depends on sensory perception,” he says. “What we need to understand is what happens that makes fatigue more persistent, without there being an obvious systemic disturbance.”
Rigorous inquest
The inquest was rigorous, Chaudhuri says, and considered all other potential causes of death consistent with the post-mortem results, such as sleep apnoea and drug use, and rejected them.
The verdict was welcomed by Sophia’s mother, Criona Wilson, who had to fight for recognition that her daughter was physically - rather than mentally - ill. Sophia was sectioned for two weeks under the Mental Health Act in 2003.
“I’m extremely pleased that CFS/ME was identified on the death certificate as one of the primary causes of Sophia’s death,” she says, “because this can be used to reinforce the need for biomedical research into the disease.”
I know in my case that it was definately a physical thing. After being neglected and wrongly treated (antibiotics for everything)by my MD I found a naturopath that cleaned me up.
I'm back to my old self through a natural nutritional approach and getting the flora of my digestive track alive and doing its job again.
Of course the MD thinks I'm a whack job for going to a naturopath & chiropractor....
Job security.
There is no indication how long Job suffered.
Oh, its real all right. Took years to abate, by fits and starts. And, from what I've heard, I had a mild to moderate case.
ping
Congratulations on your recovery. Hopefully others can benefit from what you've learned.
A close friend of mine had chronic fatigue at age 28-30 after a case of mononeucleosis - couldn't get well for two years - doctors scoffed - she finally put herself on a strict nutritional diet with lots of red and green leafy vegetables, lean meat and fish, blueberries and strawberries, no soda, salt, pepper or junk food, and multivitamins. She was better in 3 to 4 months.
I've had cfs for the past 7 years. I've researched the thing to death. I'm really happy for the ones who change their diet, improve their gut flora, etc and get better. However, there are others for whom none of that makes a lasting improvement - and I am in that category. I have good days, bad days and hell days. Some of the good days last for months. Some of the bad days just seem to last for months. I see an integrative medical specialist, an acupuncturist, a chiropractor, got a diploma in herbal medicine so I can figure out which herbs to use (and they definitely help me feel better than meds do), take as few meds as possible (because I react bizarely to them), changed my diet several times over and try to live a life that has some enjoyment in it somewhere. I'm sorry for the woman who died. At the same time I can't help but be relieved - at last...proof that it's not all in my head, no doc I'm not depressed, really I can look great and feel miserable all at the same time.
CFS since 1990 here.
http://www.chronic-illness.org/cfs_t_shirts_gift_ideas.html
We know a very young man who is just graduating med school in Wales this month. His problems came as a result of a medication prescribed for him by an MD.
He has lost all of his twenties to this thing and he isn't through it yet but at least he has seen a little light. Is going to an homeopath who is willing to research and discover. Inch by inch some of the fatigue has left although he recently had a bad spell with the jaundice and no strength.
He knows many others with the same sorts of symptoms and this has taught him to listen and to hear. He is going to make one whale of a doctor because he is both brilliant and has comprehension that you can look fine and have almost no ability to function.
Since he has met others who were just as malaffected by the medication he has also forced the producing corporate entity to put a warning on the medication. Want to bet that the MD's will ignore it and tie more people to the same problems? One wonders whether there are umpty Americans who have varying degrees of the same symptoms as a result of having been given the same prescription medication for something that isn't as bad as the result that the medication wrought.
Our trouble is that MDs are not educated these days, they are largely only taught how to push pills. Especially in the US where Big Pharma rules all the laws and the health care system.
Do you know the name of the medication that made him sick?
I couldn't agree more. This is exactly what happened to me. I was so sick when I was in the hospital, I did not know what they were giving. When I got better, I did research on the net( Thank God for the net) And I was floored! I immediately stopped taking ALL meds prescribed, even though there were all kinds of warning not to go cold turkey. I wouldn't recommend everyone doing this, but it worked for me. I feel alive again.
She didn't die of Chronic fatigue syndrome.
She had a debilitating neurological disease with fatigue as a major side effect.
This type of false news reporting will allow all my neurotic patients the joy of saying "See, I was really sick".
For every TRUE chronic fatigue syndrome (often starting after a viral illness) I see a dozen neurotics.
They always want a fancy diagnosis. It used to be hypoglycemia then it was chronic candida,then it was "fibromyalgia", then it was food allergies then it was whatever. You can see this type in feminist meetings where "no perfume" is the rule, and weird ideas abound.
Now, I have food allergies, (break out in hives after eating too many big Macs) perfume makes me sneeze, and hypoglycemia (on Glucose tolorance test I went down to 37 and got shaky and threw up) and I have muscle pain when storms come thru. so I can sympathize with people with real disease.
All of these things are "real" disease, and we don't have good treatments for any of them. But the neurotics often have mild forms of any or all of these, and you don't know where to start, since their lives revolve around their symptoms.
But I don't build my life around these things.
You know why? Because I've treated people with REAL disease, and know the difference.
My problem is I cannot find a Doctor that will listen. I get about four words out, and boom, they think they know what it is. I have yet to find one that will listen. Ten minute rule I guess.
You remind me of the doctor that I went to because even after sleeping all night, I was as tired the next morning as I was the night before. I was 28. He told me I had "bored housewife syndrome". I asked 2 more doctors and gave up as it was always "in my head". I'm now 56 and still haven't found a doctor who cared enough to find out what's going on.
Well, its not as if my doctors didn't try to diagnose it. I got a virus panel for a lot of viruses whose names I can't remember. And, it was one of these doctors, young at the time, who showed me the CDC definition of CFS based on "6 of 12" symptoms. He said "we don't know what you have" but some people have been lumped under this syndrome. "Maybe some more symptoms will come and whatever it is will declare itself."
For me, I can't trace a specific causative agent, but I can trace a specific onset date. One summer day, when I was in my early 40's, I woke up with the most debilitating "out of it" fatigue, but no fever or other symptoms. It was diagnosed as "a summuer virus" but it lingered.... and lingered.
It took a long time ... maybe seven years... to fully abate. Of course, after all that time, who can say if it fully abated, because I was getting a bit older anyway. But it did abate, and my case wasn't as bad as some. I was usually pretty good for several hours a day, and sometimes for weeks, with frequent relapses. Acupuncture was somewhat helpful, but not totally. Very strange.
Good luck to your friend.
Sooner or later, modern medicine will figure out some of the causes. I'd bet on an extended immune reaction which persists after the initial threat has subsided. That's a common hypothesis.
I shouldn't have read beyond your post, because I'm very tempted to flame someone who posted later. ;)
When it comes to true CFS (and Fibromyalgia and MCS), it's been my experience that unless you get it, you don't get it. (To be grammatically correct, I guess it'd be "unless you get *them*,...")
The CDC recognizes that many suffer overlapping symptoms. Others think you must be neurotic if you do.
And what you say is true: Doctors seem to be trained to treat the symptoms, not to try to find and treat the cause. Too often, if they can mask your symptoms, then you're "cured."
"There is no indication how long Job suffered."
I thought Job suffered for seven years (after seven years God restored him). I'll look for a source and post back.
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