A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Christmas appeal for UK ME Biobank at the Royal Free Hospital, London

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Aug 26, 2014.

  1. charles shepherd

    charles shepherd Senior Member

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  2. Sasha

    Sasha Fine, thank you

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  3. Min

    Min Guest

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    What criteria are being used to select patients? Will they have myalgic encephalomyelitis or fatigue?

    The charities behind this are members of the Collaborative alongside Esther Crawley and Peter White. What guarantee will those donating have that their tissues and blood will never be made available for 'research' run by the Wessely school of psychiatry?
     
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  4. Sasha

    Sasha Fine, thank you

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    The biobank is being set up by three charities - MEA, MERUK and AfME. AfME are new to funding research but MERUK and the MEA have a long history of funding serious biomedical research in ME (not fatigue).

    @charles shepherd (don't know how much he's around the forum) would be able to answer the question about selection criteria in more detail. Here's the biobank website:

    http://www.lshtm.ac.uk/itd/crd/research/cure-me/ukmecfsbiobank/

    No idea but I don't think that the risk that a biobank might be misused by psychiatrists is a reason not to set one up. I think its potential benefits to serious biomedical researchers (who certainly will be using it) far outweigh that risk. Presumably use of the biobank wouldn't anyway be restricted to members of the UKCMRC - it would be a resource for any serious researcher.

    I think this is an important initiative to support. I'll be donating.
     
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  5. Min

    Min Guest

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    I would not support any initiative from charities who willingly work alongside Prof Peter Whit and Dr Esther Crawley without assurances that the patients involved in such initiatives do actually have the neurological illness myalgic encephalomyelitis.
     
  6. Sasha

    Sasha Fine, thank you

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    I think "willingly" doesn't accurately reflect the MEA's or MERUK's attitude, given their public stance against CBT and GET and the BPS model. I think they'd say that they're stuck with White and Crawley if they want to have a collaborative that increases funding for biomedical research. We've had that conversation before, though, and I think we just have to accept that PWME of good faith who desperately want more biomedical research and the psychiatrists to leave can differ on this.

    Fair enough - I hope @Charles will come along and give that assurance, the next time he's on the forum.
     
  7. Min

    Min Guest

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    Without such assurance, I shall continue to support only Invest in ME as the one UK research funding charity who refuse to work alongside the Wessely school of psychiatry.
     
  8. charles shepherd

    charles shepherd Senior Member

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    We have made it very clear on numerous occasions over the past two years that all patient volunteers who are being selected to donate blood samples for the ME biobank are having a far more thorough clinical assessment - history, examination, investigations - than would take place when people are being diagnosed with ME/CFS

    We will then know whether they meet Fukuda and/or Canadian criteria - which is very important because this will mean that any abnormalities in blood samples between the two CFS criteria can be identified

    The large amount of clinical data that will accompany each blood sample will also enable researchers to dissect out other cohorts of patients that meet other criteria - Ramsay described or London defined ME for example - where appropriate

    I'm sorry but I just cannot understand why a tiny minority of people are so hostile to the ME Biobank at the Royal Free Hospital and are unwilling to support it

    This is a unique piece of research infrastructure that will enable researchers who require blood samples from very carefully defined cases of ME/CFS to carry out research at a much lower cost and without having to find a cohort of paatients if they are not connected to a hospital that has an ME/CFS service

    The NIH in America has expressed great confidence in what we are doing by awarding a grant of over £1 million to cover a three year research programme looking at what happens to both viral and immunological responses over a period of time:

    http://blogs.lshtm.ac.uk/news/2013/06/28/uk-mecfs-biobank-project-awarded-1-million-grant/
    The ME Biobank is also building up a collection of samples from healthy controls and people with MS - who will act as a further control group
    And the ME Biobank is not connected to the UK ME/CFS Research Collaborative
    Inclusion and exclusion criteria:
    Inclusion criteria
    ME/CFS Cases: informed consent,18 years to 60 years old, and clinical diagnosis of ME/CFS,
    according to CDC-1994 (2) or Canadian (1) criteria. The diagnosis will be confirmed by a
    clinical researcher (research nurse or doctor) working for the study, who will consider the
    result of a range of laboratory tests aimed at excluding alternative diagnoses.
    Healthy controls: informed consent,18 years to 60 years old, no past or present fatiguing
    illnesses and/or other major morbidity such as cancer or coronary heart disease.

    Exclusion criteria
    Cases: Recent use (in the preceding 3 months) of drugs known to alter immune function (e.g.
    azathioprine, cyclosporine, methotrexate, steroids); anti-viral medications and vaccinations;
    history of acute and chronic infectious diseases such as hepatitis B and C, tuberculosis, HIV
    (but not herpes virus or other retrovirus infection); other severe illness and severe mood
    disorders. Pregnant women and those within 12 months post-partum and/or currently
    lactating will also be excluded.
    Healthy controls: all of the above, in addition to the presence of any fatiguing illnesses and
    other conditions
     
    Last edited by a moderator: Aug 28, 2014
    snowathlete, Bob, John Mac and 3 others like this.
  9. Sasha

    Sasha Fine, thank you

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    Thanks, @charles shepherd.

    I did a search for the inclusion criteria (I'm very pro the biobank, as you can see) but couldn't find them (they're not on the LSHTM biobank page and there's a reference somewhere to an old MEA newsletter, I think, that isn't online AFAIK). Given that they're an important part of the biobank design (and it's interesting to read about the plans to use the biobank to look at differences between the various definitions), would it be a good idea to summarise that somewhere where people who are interested in donating to this Xmas challenge can easily find it? Maybe an update of the MEA website page?

    I think most people would assume that you would use sensible criteria (as I do) but in the UK I think it's important to head criticism off at the pass, if possible.
     
  10. charles shepherd

    charles shepherd Senior Member

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    Barely 16 hours into the first stage of the appeal and five people have pledged a total of £2,350 so far.
     
  11. charles shepherd

    charles shepherd Senior Member

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    Inclusion and exclusion criteria:

    Inclusion criteria

    ME/CFS Cases: informed consent,18 years to 60 years old, and clinical diagnosis of ME/CFS,
    according to CDC-1994 (2) or Canadian (1) criteria. The diagnosis will be confirmed by a
    clinical researcher (research nurse or doctor) working for the study, who will consider the
    result of a range of laboratory tests aimed at excluding alternative diagnoses.
    Healthy controls: informed consent,18 years to 60 years old, no past or present fatiguing
    illnesses and/or other major morbidity such as cancer or coronary heart disease.
    Exclusion criteria
    Cases: Recent use (in the preceding 3 months) of drugs known to alter immune function (e.g.
    azathioprine, cyclosporine, methotrexate, steroids); anti-viral medications and vaccinations;
    history of acute and chronic infectious diseases such as hepatitis B and C, tuberculosis, HIV
    (but not herpes virus or other retrovirus infection); other severe illness and severe mood
    disorders. Pregnant women and those within 12 months post-partum and/or currently
    lactating will also be excluded.
    Healthy controls: all of the above, in addition to the presence of any fatiguing illnesses and
    other conditions
    Inclusion and exclusion criteria:

    Inclusion criteria

    ME/CFS Cases: informed consent,18 years to 60 years old, and clinical diagnosis of ME/CFS,
    according to CDC-1994 (2) or Canadian (1) criteria. The diagnosis will be confirmed by a
    clinical researcher (research nurse or doctor) working for the study, who will consider the
    result of a range of laboratory tests aimed at excluding alternative diagnoses.
    Healthy controls: informed consent,18 years to 60 years old, no past or present fatiguing
    illnesses and/or other major morbidity such as cancer or coronary heart disease.
    Exclusion criteria
    Cases: Recent use (in the preceding 3 months) of drugs known to alter immune function (e.g.
    azathioprine, cyclosporine, methotrexate, steroids); anti-viral medications and vaccinations;
    history of acute and chronic infectious diseases such as hepatitis B and C, tuberculosis, HIV
    (but not herpes virus or other retrovirus infection); other severe illness and severe mood
    disorders. Pregnant women and those within 12 months post-partum and/or currently
    lactating will also be excluded.
    Healthy controls: all of the above, in addition to the presence of any fatiguing illnesses and
    other conditions
    Inclusion and exclusion criteria:

    Inclusion criteria

    ME/CFS Cases: informed consent,18 years to 60 years old, and clinical diagnosis of ME/CFS,
    according to CDC-1994 (2) or Canadian (1) criteria. The diagnosis will be confirmed by a
    clinical researcher (research nurse or doctor) working for the study, who will consider the
    result of a range of laboratory tests aimed at excluding alternative diagnoses.
    Healthy controls: informed consent,18 years to 60 years old, no past or present fatiguing
    illnesses and/or other major morbidity such as cancer or coronary heart disease.
    Exclusion criteria
    Cases: Recent use (in the preceding 3 months) of drugs known to alter immune function (e.g.
    azathioprine, cyclosporine, methotrexate, steroids); anti-viral medications and vaccinations;
    history of acute and chronic infectious diseases such as hepatitis B and C, tuberculosis, HIV
    (but not herpes virus or other retrovirus infection); other severe illness and severe mood
    disorders. Pregnant women and those within 12 months post-partum and/or currently
    lactating will also be excluded.
    Healthy controls: all of the above, in addition to the presence of any fatiguing illnesses and
    other conditions
     
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  12. charles shepherd

    charles shepherd Senior Member

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  13. aimossy

    aimossy Senior Member

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    I will be donating. A bio bank in the UK is sorely needed, so researchers do have easy access. Good way to boost biomedical research in any way we can.
     
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  14. Min

    Min Guest

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    Will members of the Wessely school of psychiatry, two of whom the charities involved in this are collaborating with, be permitted access to the biobank for their 'research' please?
     
  15. Sasha

    Sasha Fine, thank you

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    I think it's important to realise that there are many PWME, including myself, who want to support biomedical research and who reject the Wessely School BPS model and yet who support high-quality biomedical research by charities such as the MEA and MERUK who have decided to be part of the UKCMRC. We do so because we believe that it's better that research funding in the UK increases overall so that biomedical research can get more funding, even if an unwelcome consequence is that the BPS school get a share of the pie.
     
  16. Sasha

    Sasha Fine, thank you

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    I would hope so, if they have a research proposal that passes appropriate peer review (assuming that that's how biobanks operate). I hope that because if they are unreasonably blocked access, it will appear to the world that those of us who hold that ME is a serious organic disease are afraid to have our ideas challenged scientifically. To refuse them access would be very damaging to our position, in my view.
     
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  17. Min

    Min Guest

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    How is it possible to support the unethical and unscientific biopsychosocial medicine as practised by certain members of the Collaborative, by working alongside these members, and to be supporting real research too? Why always have a foot in both camps?

    There seems to be no guarantee that the Wessely school of psychiatry will not get their hands on our blood and tissues.
     
    Last edited by a moderator: Aug 29, 2014
  18. charles shepherd

    charles shepherd Senior Member

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    If you want to set up a Biobank for ME within an established Biobank at a world class scientific institution (ie the University College London Biobank at the Royal Free Hospital - as we have done) then you have to agree to the ethical and legal requirements of that institution - as well as setting up your own ethical, legal and procedural arrangements for collecting, processing, storing and providing blood samples to research groups who apply to use them

    You are not going to find an academic institution that would allow a Biobank to say that it is not going to provide blood samples to a particular medical -ology, or to specific individuals
    So the ME Biobank is open to any research group that wants to make use of the samples
    However, all applications will be peer reviewed and will only be approved if it is agreed that the research is sound and that it will improve our understanding of causation, sub-grouping and management of ME/CFS
     
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  19. charles shepherd

    charles shepherd Senior Member

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    The UKRC is not involved in any way with the ME Biobank
     
    Last edited by a moderator: Aug 29, 2014
  20. Min

    Min Guest

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    Still no guarantee that the Wessely school of psychiatry will be denied access to our blood and tissues then?
     
    Last edited by a moderator: Aug 28, 2014

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