Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Donating our Bodies to ME Science

Discussion in 'Information and Resources' started by leela, Apr 27, 2017.

  1. leela

    leela Slow But Hopeful

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    I know we've discussed this before, but can't find the thread. Has anyone got new intel on whether there is any research facility that would accept dead me for ME science? I'm doing my end of life paperwork and have chosen no across the board for organ donation, with the exception that I would donate my corpse to science should a facility wish to accept it for ME medical research.
    It would be nice to have an actual place name to write in there, and any info on how said corpse should be treated/preserved.
     
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  2. Jennifer J

    Jennifer J Senior Member

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    Hi, @leela. Thank you for bringing this up, a reminder of something I want to do too.

    Here's a thread not sure if this is the one you were thinking of: https://forums.phoenixrising.me/index.php?threads/autopsy-options.35647/

    I'm too foggy to read it well and pull out pieces that might help. There's some information about donations.

    Want to say more, yet can't, my sleepy brain just stopped. :bang-head:
     
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  3. charles shepherd

    charles shepherd Senior Member

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    I am a member of the UK post-mortem research group and the results on some of the post mortems that have been carried out so far here in the UK have been published - see below

    However, none of the post-mortems carried out so far have found the sort of widespread and significant neuroinflammation that would be consistent with an encephalomyelitis (ie inflammation of brain and spinal cord)

    The dorsal root ganglion (where inflammation has been found) forms part of the peripheral nervous system

    We are continuing to carry out post-mortems when the opportunity arises

    If you live in the UK you can use our 'Statement of Intent' form on the MEA website to register your permission for body parts and tissues to be used for post mortem research into ME/CFS:

    http://www.meassociation.org.uk/wp-content/uploads/MEA-RRF-Statement-of-Intent-2015.pdf

    I am not aware of any ME/CFs charities outside the UK who are doing this kind of research

    This work is not yet directly linked to the work of the ME/CFS Biobank that we fund at the Royal Free Hospital in London. The ME/CFS Biobank is currently only dealing with collection, storage and distribution of blood samples with the anonymised clinical data attached

    Dr Charles Shepherd
    Hon Medical Adviser, MEA

    Pathology of Chronic Fatigue Syndrome: Pilot Study of Four Autopsy Cases
    DG O’Donovan1, 2, T Harrower3, S Cader2, LJ Findley2, C Shepherd4, A Chaudhuri2
    1Addenbrooke’s Hospital Cambridge UK
    2Queen’s Hospital Romford Essex UK
    3Royal Devon & Exeter Hospitals UK
    4Honorary Medical Advisor to ME Association UK

    Chronic Fatigue Syndrome / Myalgic Encephalomyelitis is a disorder characterised by chronic exercise induced fatigue, cognitive dysfunction, sensory disturbances and often pain. The aetiology and pathogenesis are not understood.

    We report the post mortem pathology of four cases of CFS diagnosed by specialists.

    The causes of death were all unnatural and included: suicidal overdose, renal failure due to lack of food and water, assisted suicide and probable poisoning.

    Selected portions of tissue were made available by the various Coroners in the UK and with the assent of the persons in a qualifying relationship.

    The cases were 1 male, and 3 female. Ages (years) M32, F32, F43 & F31.

    One case showed a vast excess of corpora amylacea in spinal cord and brain of unknown significance but Polyglucosan Body Disease was not supported by clinicopathologial review. No ganglionitis was identified.
    One case showed a marked dorsal root ganglionitis and two other cases showed mild excess of lymphocytes with nodules of nageotte in the dorsal root ganglia.

    This raises the hypothesis that dysfunction of the sensory and probably also the autonomic nervous system may lead to abnormal neural activity eg hyperalgesia & allodynia rather than anaesthesia and may explain some of the symptoms of CFS / ME such as pain, hypotension, hyperacusis and photophobia. However, the syndrome may be heterogeneous.

    Nevertheless, the precise relationship of fatigue, which may be either peripheral or central, to abnormalities in the peripheral nervous system (PNS) needs to be studied.

    The differential diagnosis of ganglionitis should be investigated in CFS / ME patients hence Varicella Zoster, Lyme disease, HIV, Sjogren’s disease, paraneoplastic sensory ganglionopathy should be excluded by appropriate history and tests.

    Thorough histopathological study of cases coming to autopsy may help to confirm or refute the hypothesis, that CFS is a disease process, and whether the symptomatology may be explained by inflammation of the sensory and autonomic divisions of the PNS.

    A specific CFS / ME brain and tissue bank in the UK is proposed.

    Dorsal root ganglion anatomy:

    [​IMG]
     
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  4. RL_sparky

    RL_sparky Senior Member

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    The last Stanford Newsletter of Spring 2016:
    " It is with some hesitation that we publically announce our decision to begin the regulatory process to accept brain donations from deceased ME/CFS patients. We plan to establish a robust tissue and brain bank to help us better understand the nature of ME/CFS. More information on this effort is forthcoming."

    http://med.stanford.edu/content/dam... Montoya Newsletter Spring 2016 FINAL (1).pdf

    I'm not sure where this stands but you can always call and ask.
     
  5. leela

    leela Slow But Hopeful

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    Last edited by a moderator: Apr 28, 2017
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  6. Wolfiness

    Wolfiness Activity Level 0

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    How come?
     
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  7. RL_sparky

    RL_sparky Senior Member

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    They don't want someone despondent to use this as an excuse to end their life in the name of helping the science.
     
  8. Wolfiness

    Wolfiness Activity Level 0

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    Ohhh...
     
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  9. Chrisb

    Chrisb Senior Member

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    @charles shepherd
    I hope I am not wasting your time but it occurred to me, as it no doubt has to you, that given the small number of PMs conducted and the heterogeneity of the condition the failure to find a clear pattern in the results might not be unexpected.

    Given the limited contact which long term ME sufferers often have with the medical profession, and the probable inadequacy of medical files for identifying the group, or sub-group, into which people might fall, are there in place systems for obtaining information from those who intend to leave their body for research, which might enable some rudimentary classification to be made?
     
  10. CCV54

    CCV54

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  11. charles shepherd

    charles shepherd Senior Member

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    Unfortunately, the simple answer to your very valid question is no

    However, the UK post mortem research group has carried out a detailed feasibility study relating to all the various components (including a patient registry) that will be necessary for setting up a formal post-mortem tissue bank for ME/CFS - which would be rather like the existing MRC funded brain banks for Alzheimer's Disease, Parkinson's Disease etc

    We have set out our plans in more detail in a paper published in the British Journal of Pathology:

    http://jcp.bmj.com/content/63/11/1032?sid=1dcc758d-5e2b-4b22-af33-86ad715ff0f1

    More general information can be found here in an MEA website statement:

    http://www.meassociation.org.uk/201...em-tissue-bank-me-association-24-august-2012/

    And as I indicated during one of the Q and A sessions at the Invest in ME Conference on Friday, we are continuing to arrange post-mortems on people with ME/CFS who have sadly died here in the UK

    We are also very willing to co-operate with other research groups who may be interested in looking at samples from specific tissues (e.g. gastrointestinal specimens) where their research interests lie

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  12. leela

    leela Slow But Hopeful

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    Thank you, @charles shepherd , I'm thinking I ought (once I've got two braincells to rub together) to approach some of the fine emerging
    ME research groups here in the US and invite them to follow your model. I especially like your cooperative and inclusive approach.
     
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  13. CCV54

    CCV54

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    Oh, sorry.. I kind of overlooked that or didn't think about Stanford University being in the US. Somewhat spotty attention. Y' know?
    I did, however, come across a Stanford newsletter mentioning some promising MRI research into ME/CFS
    http://med.stanford.edu/content/dam... Montoya Newsletter Spring 2016 FINAL (1).pdf
    Turns out the initial findings were made in 2014, but it looks like more funding is needed to further the study.
    It looks like the same newsletter, but I can't find mention of brain donations in it.

    I don't have ME, but Post Polio Syndrome. The subject of post-mortem studies and brain donations to science came up in one of my support group discussions, hence my interest here.
    In the case of polio I think there's nothing to be gained from post-mortem examination nowadays, and MRI can show effects of polio in the brain well enough. However, post-mortem studies, conducted by a Dr. David Bodian, in the '40's or '50's did show that the polio virus primarily targeted neurons in the brain - particularly areas of the brainstem and some surrounding tissues. These results are now helping to explain many of symtoms of PPS, such as fatigue, 'brain fog', difficulties with attention/concentration, word finding and so on. In some ways not altogether different to CFS, or so I gather.

    We can only hope that, by whatever means, there may be an end to this suffering.
     

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