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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Autopsies in the UK/ US

Discussion in 'General ME/CFS News' started by Hope123, Feb 6, 2010.

  1. Hope123

    Hope123 Senior Member

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    Sorry this is going to be nsensitive but does anyone know if there was or will be an autopsy, especially an independent one, performed on Kay Gilderdale?

    In the US, I believe most suicides require autopsy by law.

    In terms of the science, having tissues samples to look at might help scientists figure out what, if any, viruses were involved in her illness. During Mikovits' talk, she mentioned we don't know what the reservoir for XMRV and that it might be a tissue like the brain or lymph nodes. Tissue samples are hard to come by in live persons since there is risk of injury with biopsies especialy of sensitive parts like the heart or brain.

    If they find XMRV or other viruses that shouldn't be there in her tissues, it would definitely advance the science. Sometimes, tissues of interest can be stored and examined at a later date. The WPI has a biobank for tissue samples.

    Also, I heard that Sophia Mirza had an autopsy and I heard a bit about inflammation in her spinal cord. Was an official statment ever released and if so, how could I find it?
     
  2. Kati

    Kati Patient in training

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    Hope, Kay is the mother- I believe Lynn is the daughter???
    I have read somewhere that there were delays somewhere with the body or Kay being detained, and Kay knew that Lynn wanted her organs donated to science for ME, but I believe only the brain was saved due to the delay. ( Sounds very cruel to me).

    Anybody correct me if i am wrong!
     
  3. sproggle

    sproggle Jan

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    That's what I heard too. I've not seen an official statement to the fact though so don't take it as 100%

    :Retro mad: If true it's awful. Lynn's dying wish was to aid research and bureaucracy wouldn't allow it :Retro mad:

    We can only hope that they find abnormalities in her brain which further research. I'm not sure what the chances of this are but I know they will have experts on the case.

    Jan
    xx
     
  4. Abraxas

    Abraxas Senior Member

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    This was posted on another thread by Min:

     
  5. Hope123

    Hope123 Senior Member

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    Thanks for correcting me Kati! I had her mom's name in mind because of the interviews I saw!

    Anyhow, here's the Biobank info from the WPI. If anyone happens to have a planned surgery or procedure, it might be worth it to call up the WPI and see if they want your tissue sample. The WPI probably can give instructions you can give to your docs before your operation so your tissue can be saved appropriately and mailed to them. I know it's a long shot but if anyone knows Kay Gilderdale or even Sophie Mirza's mom, it might be interesting to forward this info to them. (Autopsies and tissue sampling have been done on exhumed bodies - sorry for the morbidness!)

    http://www.wpinstitute.org/research/research_biobank.html
     
  6. Oh man oh man why couldn't she have been more explicit?! Or maybe she did but the paper didn't think it would be worth quoting?
    Perhaps somebody from the 25% ME group might know more...

    Rachel xx
     
  7. Countrygirl

    Countrygirl Senior Member

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    Hi folks,

    As I posted elsewhere.....somewhere......Lynn's results are being withheld until offical publication.

    I was given this information from a very reliable, respected source.
     
  8. Dolphin

    Dolphin Senior Member

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  9. Dolphin

    Dolphin Senior Member

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    http://www.investinme.org/Article-050 Sophia Mirza 01.htm

    Don't think there is anything more here: http://www.sophiaandme.org.uk/

    If one takes a section of that quote and search for it, one can see where it shows up.
     
  10. V99

    V99 *****

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    Sophia's death certificate is on the official website.

    Of course she is not the only one in the UK, nor was she, I believe, the first recorded death from ME
     
  11. hensue

    hensue Senior Member

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    OMG Sophie's website is dreadful but oh sooo true. Makes my heart sink and it really pisses me off.
     
  12. Hope123

    Hope123 Senior Member

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    If they perserved any of her tissues, they should try contacting Dr. Prachi Sharma at Emory University in Atlanta, Georgia. Sharma did the tissue staining for XMRV in monkeys; could a similar method be applied on humans?
     
  13. Min

    Min Senior Member

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    If Action for ME are involved in this the project will probably be storing and studying the tissues of people who had mild psychological fatigue, not neurological ME.
     
  14. taniaaust1

    taniaaust1

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    Nineteen year old Alison Hunter in Australia I believe was the first person to be noted as a CFS/ME death back in 1996?, she ended up dying in her mothers arms. Some of her story is at http://www.ahmf.org/smh040502.html . i cant remember who the other names are now but there was also 1 or 2 others who were well known CFS/ME deaths before Sophias.

    I can still remember when Sophia died and all the false reports coming from England that she was the worlds first CFS/ME death.
    .........

    It was all due to Alison's Hunters death, that in the end all the psychological CFS stuff never took on a strong hold in Australia back in 2002 when it was all going to be strongly introduced .. as from her death her mother formed an organisation in her memory who helped things in this country a lot and still is apparently going on today (funding ME research, working in education of CFS/ME etc).

    If it werent for her and them.. we probably would of ended up exactly like the situation in England rather than the canadian consensus stuff becoming recogised here quite a bit by many.
     
  15. V99

    V99 *****

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    I think that even Alison might not be the first. Not absolutely sure. I remember reading that the Countess of Mar tried to present a document to officials that listed a number of ME deaths. Does anyone know what I am talking about?

    I know Richard Senior contact the New Scientist to explain that his wife had ME on the death certificate, before Sophia died.

    Just want to add, I really hate having to discuss these people. It's awful what happened to them, and can seem so disrespectful. I really hope we can use this information to change things in their name. I cannot begin to truly know what Alison and her family went though.

    How are things in Australia now? What are your diagnostic criteria like?
     
  16. Dolphin

    Dolphin Senior Member

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    I recall something about a UK MP with an ME-type illness dying when trying to exercise - think it was the late 80s.
     
  17. V99

    V99 *****

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    On 13th December 1988, Brynmor John MP, collapsed and died as he was leaving the House of Commons gym after being told to exercise himself back to health

    He was 55 I believe
     

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