Autopsies in the UK/ US

[Hope123]

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?

 

[Kati]

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!

 

[sproggle]

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).

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

 

[Abraxas]

This was posted on another thread by Min:

" although Lynn had made a Will stating her wishes that her organs and tissues should be used after her death, her mother was in police custody and was unable to ensure that Lynns wishes were carried out at the time. The only organ that was retrieved immediately after Lynns death was the brain, and this was sent to Kings College Hospital, London (where Simon Wessely works)"

from

http://www.meactionuk.org.uk/A_NICE_DILEMMA.htm

.......so we'll never know what was actually wrong with her

 

[Hope123]

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!

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

 

[thefreeprisoner]

She insisted her body go to ME research, and it has already yielded some interesting results.

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

 

[Countrygirl]

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.

 

[Dolphin]

Action for ME and the ME Association are working on the issue of having a post-mortem tissue bank in the UK. It seems to be paper work at this stage with no samples being taken as part of this project. Further info. at: http://www.afme.org.uk/res/img/resources/IA 70 Tissue bank p 10-11.pdf (for example)

 

[Dolphin]

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?

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

An autopsy was performed on Sophia. No cause of death could be found. A fortnight later more tests were carried out with the same results. Her heart was then sent away for testing which still showed up no abnormalities. Simon Lawrence from the 25% ME Group asked us if we would consider some research being done on Sophia. We readily agreed as we wanted others to benefit from Sophias life and death. Sophias spinal cord was taken away for research by Dr Chaudhuri in Romford and Dr ODonovan in Cambridge. Permission for this was granted by the coroner. I understand that the coroner was unusual in allowing such research to be performed. Everyone at that office was most helpful to the two doctors involved. For this I am so grateful.

The final tests have yet to be completed, but up to the present time the results of Sophias spinal cord show unequivocal inflammatory changes affecting the special nerve cell collections (dorsal root ganglia) that are the gateways (or station) for all sensations going to brain through spinal cord. The changes of dorsal root ganglionitis seen in 75% of Sophias spinal cord were very similar to that seen during active infection by herpes viruses (such as shingles).

They are continuing their research and hope to publish their paper when completed

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.

 

[V99]

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

 

[hensue]

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

 

[Hope123]

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?

 

[Min]

Action for ME and the ME Association are working on the issue of having a post-mortem tissue bank in the UK. It seems to be paper work at this stage with no samples being taken as part of this project. Further info. at: http://www.afme.org.uk/res/img/resources/IA 70 Tissue bank p 10-11.pdf (for example)

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.

 

[taniaaust1]

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

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.

 

[V99]

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?

 

[Dolphin]

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

 

[V99]

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