'Victims give clues to the answers' ME/CFS Autopsy Protocol

Discussion in 'Fibromyalgia Main Forum' started by becc, Apr 14, 2007.

  1. becc

    becc New Member

    From the Sydney Morning Herald:

    Victims give clues to the answers
    April 12, 2007

    The development of an autopsy protocol may help unlock some of the mysteries of chronic fatigue syndrome, writes Julie Robotham.

    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 in the 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.

  2. jmq

    jmq New Member

    I sure would not mind them poking around and using my tissues etc after I am gone. Anything that could help find an effective treatment...if not a cure for these dd. I will let my hubby know my wishes when its my turn to go. HOPEFULLY no time soon "=)

    Thank you for the article,
  3. jaltair

    jaltair New Member

    I believe that a lot of people are labeled with CFS yet may have another underlying and undiagnosed condition. For example, my doc told me I had CFS based on the set criteria; however, later it was determined I had lupus. Of course, lupus can cause neurological disasters.
  4. becc

    becc New Member

  5. Fmandy

    Fmandy New Member

    This is scary indeed. I do find it very strange that a syndrome can be listed as a cause of death.

  6. becc

    becc New Member

    I think the cause of death is probably listed as myalgic encephalomyelitis, not chronic fatigue syndrome. Not sure, though. Then again, AIDS is a syndrome and listed as a cause of death...
  7. Fmandy

    Fmandy New Member

    In the case of AIDS I think the cause of death would be more specific, such as leukemia or pneumonia, don't you think?

  8. becc

    becc New Member

    Hi Fmandy,

    I had a quick look - it looks like HIV/AIDS can be listed both as the sole cause of death or as the underlying cause of death. I assume that in the case of AIDS sufferers that succumb to pneumonia/leukaemia etc, those illnesses would be listed as the primary cause of death and HIV/AIDS the underlying cause.

    In the case of people who have died of ME/CFS, perhaps the exact cause is listed with ME/CFS as the underlying cause. eg Sophia Mirza (UK) was listed as having died of acute aneuric renal failure resulting from ME/CFS. Ultimately, she died of ME/CFS. Maybe the coroner was making a political statement by saying she died from ME/CFS instead of acute aneuric renal failure. If so, I'm glad s/he did. Too many people have died from these conditions to justify continuing to list other causes of death, instead of ME/CFS.

    It's very complicated but I'm glad people are starting to accept that ME/CFS can lead to death. IMO, these illnesses are only 'syndromes' because science has not yet found the answer. Regardless of our lack of knowledge of the intricacies of the illnesses, they can and do lead to death in some extreme cases.

    becc :)
  9. Fmandy

    Fmandy New Member

    I guess that in a ghoulish way I am glad to have the cause of death listed as ME/CFS. No, my wish is for exposure for our cause as you say, but I "feel" ghoulish in saying it...

    I just think that some nit picker might try to make something out of it, but really there is nothing that can be twisted, as you have so eloquently explained :)

  10. pw7575

    pw7575 New Member

    I think this is great. At least there are people out there who are finally trying to figure out what is making us all sick. Hopefully this will lead to good things for CFS.

    Thanks for posting this.

    Take Care,
  11. Lichu3

    Lichu3 New Member

    I've read about Sophie Mirza in another article - there were some further comments that the inflammation was consistent with that of herpes-type infections.

    Another young woman, Alison Hunter, who died because she couldn't eat partly due to esophageal ulcers, was also thought to have CFS but right before her death, further testing showed she had Behcet's disease.

    Sometimes, state/national rules are restrictive about what can be placed on the death certificate. For example, heart disease is considered the number one cause of death in the U.S. - which is probably true - but may also be because in many cases of the elderly, cause of death is not always clear if no autopsy is done, and MDs are not allowed to put down "old age" as a cause even if person died in sleep.
  12. mindbender

    mindbender New Member

    Part of being Fibromyalgic has also made me psychic.

    Looking into the future I see Pharmaceutical Companies giving in and saying what the hay,

    Let's give these guys the cure, they've suffered enough. Why make them have to buy prescriptions and or Supplements for the rest of their lives?

    While we're out here sitting on a fence, let's make supplements illegal also, to drive the price down. Then we'll own them too.
  13. Fmandy

    Fmandy New Member

    Surely the cause of death for an elderly person who dies in their sleep is not listed as heart failure on their death certificate. I have always heard that it was listed as natural causes if there is no apparent cause other than old age. If so, this would really skew the statistics on heart disease.

  14. Reidsbeads

    Reidsbeads New Member

    It is truely sad when a 32 year old dies of a condition she had for many years and only then did they discover that her condition truely was what it was. It would be wonderful to have the medical field start recognizing that around the world people are getting the same symtoms,(fatigue, pain, stomach problems and stuff) and that we all can't be making it up!
    What do ya think it would be like if they called a world wide medical convention to talk only about the nuerilogic and autoimmune "syndromes" that we have and they actually found some incredible meds so we could live a better life. I would definatly let them use tissue samples from my dead body to help researh these diseases,
    as well as fibro and MPS syndrome, but I hope not too soon.

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