Dr. John Greensmith, who is both a doctor and a patient, calls our attention to an article from the Sydney Morning Herald.
For the benefit of those who are unfamiliar with the Sophia Mirza case, I provide the following background. Since I have been criticized in the past for reciting a summary given to me by a UK activist who had read more on this subject than I had, which summary allegedly had an error in it, I am providing the URLs of the documents I have relied on in making my summary, so that it can be verified that I am accurately reporting what I have read:
http://www.25megroup.org/Campaigning/Awareness%202006/Sophia's%20story/sophia's%20story%2006.htm
In 1999, Sophia Mirza had the flu, and never recovered. The following year she became entirely bedridden. The diagnosis was ME/CFS, which is recognized by the World Health Organization as a neurological disease, not psychological. As Sophia got worse, the doctor involved a psychiatrist, who threatened that if she did not enter a mental health clinic which used Graded Exercise (which most CFS patients report makes them even sicker), the police would "smash the door down". Although a lawyer assured her mother that she did not meet the criteria to be involuntarily committed for mental health reasons (she was not a danger to herself or others), the police did, in fact, break down the door, and Sophia was put in a locked room in a mental hospital. She did not receive even the most basic medical care while there, and although she was released from the mental hospital after a court hearing, she relapsed worse than ever and never recovered. As her condition became worse, her mother called her new doctors, who said Sophia was no longer their patient and refused to see her. A post-mortem found inflammation of the spinal cord, and Sophia became the first person in the UK to have CFS listed on the death certificate as the cause of death.
The report on the medical inquest and implications thereof are available online, and I quote from this document verbatim:
http://www.25megroup.org/Campaigning/Awareness%202006/Sophia's%20story/Inquest%20Implications.doc
The General Medical Council’s "duties ofa doctor" (2001) state that doctors must make the care of the patient their first concern and they must not ‘‘give or recommend to patients any investigation or treatment which (they) know is not in their best interests, nor withhold appropriate treatments’’. ... Although severely sick with medically diagnosed ME/CFS, Sophia was abused by the doctors charged with her care by being wrongly sectioned under the Mental Health Act.
She received no medical intervention such as intravenous fluid replacement – the medical intervention she did receive was to be forcibly removed from her home and incarcerated in a locked psychiatric ward. In her mother’s opinion, this contributed to her death.
Even though the pathology precipitating death varies widely, it is clear that there are premature deaths in patients with ME/CFS: it can readily be seen that very ill ME/CFS patients die if they are medically abused, or if their secondary complications of ME/CFS are medically neglected.
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Victims give clues to the answers (Sydney Morning Herald, 12 April 2007) http://www.smh.com.au/news/science/victims-give-clues-to-the-answers/2007/04/11/1175971183260.html
by Julie Robotham
The development of an autopsy protocol may help unlock some of the mysteries of Chronic Fatigue Syndrome.
Under the microscope, it could not have been clearer. Sophia Mirza's brain and spinal fluid showed indisputable evidence of inflammation and cell death. The discovery, by the neurologist Abhijit Chaudhuri and a neuropathologist colleague, marked the first time a serious abnormality confined to the central nervous system had been identified at the post-mortem examination of a patient whose principal diagnosis was Chronic Fatigue Syndrome. In turn, that ensured the 32-year-old became the first person in Britain to have the syndrome - also known as Myalgic Encephalomyelitis - recorded as the cause of her death.
In Adelaide last month, Chaudhuri and specialists from all over the world took the first steps towards developing an autopsy protocol that would allow samples to be consistently collected and analysed from the bodies of people who die, like Mirza, after a long battle with the syndrome. These would form the basis of an international tissue bank in an attempt to shed light on what goes wrong in the baffling condition, which often strikes young and previously healthy individuals. It could help "establish the condition as a valid neurological problem", Chaudhuri says, and might lead to treatments.
Chaudhuri, a consultant neurologist from the Essex Centre for Neurological Sciences, says the protocol is intended to allow non-specialist pathologists to collect and preserve samples, which could then be examined by a neuropathologist. The move comes amid concern that brain and spinal cord tissues which might shed light on the disorder are being lost because pathologists do not appreciate their significance.
In Mirza's case and in another autopsy on a young British man, "there was no way [their illness] could be explained by a primary psychiatric condition", Chaudhuri says, referring to a widespread assumption that the condition - which typically begins after a viral illness and is estimated to affect up to 140,000 Australians - is related to mental stress.
Daniel Peterson, an American physician who specialises in Chronic Fatigue Syndrome, says its name has allowed it to be trivialised. "These are very complex patients to understand," he says. "We've been held back by biases." Peterson, who is establishing a research centre at the University of Nevada, says he is most interested in forms of the condition that arise after recognised infections, which seem to trigger immune disturbances.
The specialists' meeting in Adelaide was organised by Christine Hunter, via the Alison Hunter Memorial Foundation, which Hunter formed after the death a decade ago of her teenage daughter, who had chronic fatigue syndrome. As the protocol is formalised, the group will seek endorsement from experts around the world, she says, to accelerate its acceptance by the wider medical community.
Elizabeth Salisbury, a senior staff specialist in tissue pathology at Royal North Shore Hospital, says formal guidelines would encourage those conducting autopsies to retain appropriate tissues for later genetic, antibody or biochemical testing. "One of the difficulties with a disease like CFS is [it] is very much an emerging science," says Salisbury, who is not involved inthe protocol's development. "We don't necessarily understand all the pathological changes that account for the signs and symptoms." Salisbury says families of patients who die after having Chronic Fatigue Syndrome or other complex, elusive disorders usually support tissue removal. "They really do want the answers," she says.
Colin Neathercoat, a director of the advocacy group ME/CFS Australia, says the cost of supporting patients with long-term disability from the syndrome is enormous, and more funding is needed for research into its origins and possible treatments. "We would desperately like to see government engage in this growing problem and recognise its impact on the Australian economy, let alone its impact on sufferers," he says.
Dr. Greensmith’s response:
The "indisputable evidence of inflammation and cell death" observed under the microscope, in the case of Sophia Mirza, reported to be the first person in Britain to have had Chronic Fatigue Syndrome officially recorded as a cause of death (Victims give clues to the answers, Sydney Morning Herald, 12 April 2007), restores Myalgic Encephalomyelitis to its rightful diagnostic place. There never was a good reason for CFS to displace M.E. Whatever M.E. is, it certainly isn't fatigue.
Nor was there ever a good reason for M.E to be considered the province of psychiatrists. There is no evidence of greater incidence of psychiatric history amongst M.E. sufferers than in the general population and, while people with M.E. may have understandable concomitant psychological problems, the one is not a prerequisite for the other. M.E. sufferers and researchers have been clamouring for decades that CFS has been holding back research and that, if you don't look for, you're not going to find the neurological evidence, it was Myalgic Encephalomyelitis all along. Then we can get down to the business of seeking treatments towards a cure.
You don't have to be much of a specialist of any sort to reckon that it would be better for all concerned to spend money on neurological testing while M.E. sufferers are still alive.
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Peter Kemp, a Qualified Counsellor, opined on Co-Cure:
I don't suppose anyone can ever truly know whether the tragic death of Sophia Mirza could have been averted by expert and concerted medical efforts. What I do believe,is that the poor woman died without the full care and support of a trusted and trustworthy healthcare infrastructure. Thank God she had her loving mother.
Jodi Bassett dispels the myth that CFS/ME cannot be medically proved:
http://www.ahummingbirdsguide.com/testingforme.htm
"Many of the articles on Myalgic Encephalomyelitis (M.E.) in the mainstream media (and even some of the medical texts on the illness) unequivocally proclaim that not only are there no tests which can be utilised to help confirm a M.E. diagnosis, but that despite extensive testing no objective or quantifiable abnormalities have ever been found in any patients with M.E. whatsoever. Despite their popularity, these are simply absurd claims. Tests will only all be normal in M.E. patients – as with all illnesses – if completely the wrong tests are done."
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Unfortunately, there are still some (OK, many) doctors who refuse to learn anything about CFS, being firmly convinced (despite voluminous evidence to the contrary) that it's a psychological problem that can be cured with anti-depressants and a kick in the butt. The Mirza autopsy proves otherwise, and still, doctors in the UK (who should have heard about it by now) and around the world persist in using psychiatric treatments to cure a virus/infection/inflammation.
By some reports, because Sophia's condition was deemed psychological, she was denied even drinking water in the mental hospital, told that if she wanted a drink, she should get out of bed and fetch it herself, despite being bedridden even before she was committed! Those reports are plausible; many other CFS patients have reported doctors telling them that they could cure themselves by not letting others care for them, but forcing themselves to get up and do for themselves. Thousands of us who live alone and have no choice but to get up and do it ourselves are living proof that CFS is not caused by doting caregivers, nor cured by getting your own glass of water; I've been getting my own glass of water since February 1987, and struggling to work since February 1987, and it has not cured me. In fact, pushing myself to go to work, which several doctors suggested would "give me something to think about besides my symptoms" causedme to get significantly worse and lose my job, and has since caused me to lose clients when working sent me into relapse. (The doctors' explanation for this is not that I lost my job because I got constantly sicker from trying to keep working, but the wholly unsupportable claim that I was perfectly healthy right up until February 2000 and the symptoms only started after I got depressed because I lost my job.)
Peter Kemp and Sophia's mother have both stated that the so-called "treatment" of putting Sophia in a locked ward without even basic medical care contributed to her death. I have been told by a respected local rheumatologist that the "treatment" I received caused my permanent disability. Yet no one takes responsibility for such bad outcomes from bad treatment; the innocent victim shoulders all the burden, financial and physical, resulting from medical neglect and incompetence, while the doctors waltz away without a second thought.
Professor Nancy Klimas, a world renowned immunologist from Miami, was blunt: "Our patients are terribly ill, misunderstood, and suffer at the hands of a poorly informed medical establishment and society." (Co-Cure, 21st March 2005).
Dr. Klimas' words went unheeded by the medical establishment. Two years after she laid the blame at the feet of "poorly informed" doctors, they're just as poorly informed, and just as stubbornly resisting the notion that all CFS symptoms can be explained by Central Nervous System dysfunction, which can be explained by the results of the Mirza autopsy: a spinal cord inflammation.
Dr. Paul Cheney’s Testimony before the US FDA Scientific Advisory Committee on 18th February 1993: "The most difficult thing to treat is the severe pain. The most alarming is the neurologic elements of this disease. Half have abnormal MRI scans. 80% have abnormal SPECT scans. Most have abnormal neurological examinations. The most severe cases have neurological findings which are striking".
It's been 14 years since he testified to that in a government hearing. To this day, the government's informational website still does not have the word "neurological" anywhere on the page For Healthcare Professionals! Is it any wonder that the only doctors who know to check for neurological abnormalities are those who immerse themselves in CFS literature?
The CDC website also perpetuates the myth that there are no tests for CFS. Jodi Bassett's well-researched website, to the contrary, lists a number of tests that will be abnormal in CFS/ME. Dr. Cheney's testimony in 1993 listed a number of tests that would be abnormal.
How many more CFS patients have to die, and have autopsy reports showing major biological abnormalities, before it becomes common knowledge that CFS cannot be fixed by psychiatry? The medical establishment has been indicted by their own, not just by disgruntled patients, and still refuses to admit that they have made mistakes and those mistakes have led to greater disability and even death for CFS patients. And when those patients got sicker, the blame was put on the patients for being "non-compliant", because they "refused" to get better when given wrong treatments (including those which are known to be useless or worse).
Even when Sophia Mirza died of a documentable inflammation having nothing to do with psychology, there are still doctors who blamed her for refusing to admit she had a mental illness; they still believe that if she had just voluntarily gone into that same mental hospital, she would have been cured, despite the evidence that she got significantly worse after being hospitalized. But why should someone who is physically ill lie and "admit" to a mental illness they don't have? Or subject themselves to treatment for mental illness which can do nothing to cure a virus. Anti-depressants have repeatedly been proven useless against CFS/ME (they may work on psychologically-based fatigue syndromes, but those are another illness entirely, filed in a completely different section of the World Health Organization's diagnostic manual, the ICD).
WHO rightly lists CFS/ME under neurological illnesses. It is time that the medical community took a few minutes to read the book so they understand what they are dealing with and can give appropriate treatment. CFS has more in common with MS than with depression; until a treatment can be found specifically for CFS, let's try treating it with the same drugs used for MS. It can't cause any more harm than wholly inappopriate psychiatric treatment, and might even do some good.
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