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OMF(Open Medicine Foundation) OFFICIAL THREAD inc Q And A!

Discussion in 'Action Alerts and Advocacy' started by Ben H, Jul 12, 2016.

  1. halcyon

    halcyon Senior Member

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    Why is enterovirus serology not being done in the severely ill big data study?
     
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  2. Sasha

    Sasha Fine, thank you

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    A ton of impressive-looking people on the list of CFSRC personnel and collaborators.
     
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  3. Ben H

    Ben H OMF Correspondent

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    Hi Sushi.

    Im keeping an eye on each post and question asked, noted down. I will periodically check each persons posts to see if any more have been added. I thought this way we would have less clutter/random impulse questions, less (undirected) posts overall. I am open to suggestions though-as a moderator you might know best!

    R.e Jared Younger-thats simply the list I have from OMF. I will clarify with Linda.



    B
     
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  4. Ben H

    Ben H OMF Correspondent

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    Good question @halcyon . Noted down. As a quick thought, enteroviral testing aka Dr Chia required biopsy, and the patients that have been studied so far are unlikely to have been well enough to have this done (severely ill).

    Thanks!

    Ben
     
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  5. halcyon

    halcyon Senior Member

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    I'm aware of that, I'm specifically asking about serology. They are performing full serology for herpes viruses, parvovirus B19, and borrelia but they are ignoring enteroviruses for some reason.
     
  6. Ben H

    Ben H OMF Correspondent

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    It may be down to sensitivity, but I will certainly ask as I don't know.

    Thanks!
     
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  7. Sasha

    Sasha Fine, thank you

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    Two Rs in "Jarred", BTW (for their list).
     
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  8. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    @BenHowell Sorry, that was a mistake. Ben, could you switch Jarred younger up under academic collaborators part of the list? Thank you
     
    Last edited: Jul 12, 2016
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  9. perrier

    perrier Senior Member

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    Much later, I contacted Dr Chia and he requested slides of the biopsies and confirmed enterovirus. He even suggested that the virus was causing inflammation in the veins and thus aneurysms. Yes, please ask about enterovirus. Thanks for your superb work.
     
    Last edited: Jan 7, 2017
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  10. Jill

    Jill Senior Member

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    Thank you for organising this thread. Great idea.
     
  11. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    From Ron Davis: "We are going to test for enteroviruses. It's not on the list because we haven't made the probes yet. The probes are specific for the enterovirus and it requires a fairly large amount of design work. In the past people have done a single tube assay for each type of virus. We are designing a single tube assay with probes for all known viruses. This makes it much cheaper. This will make it easier, faster and cheaper for anyone to test for all known viruses in the future.

    We expect this technology will make it significantly easier for doctors and researchers to identify the presence of any known virus in human samples. Now they test for viruses one by one and they test for viruses that they have some reason to think might be present. With this new technology they will be able to test for all known viruses in one test and it will cost about the same as testing for one virus costs now."
     
    Last edited: Jul 14, 2016
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  12. M Paine

    M Paine Senior Member

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    A question I have, is hypothetically if a more understood disease such as Diabetes Type II was to undergo a study in the same style that the OMF is using (assuming it was still a disease which was relatively obscure/not-understood), what sort of results might one expect? Would the metabolomic profile stick out like a sore thumb, and insulin resistance be 'obvious' for lack of a better word?

    My second question is a little more abstract. I'm wondering if the researchers involved in OMF could comment on there feeling around how CFS/ME is perceived within the scientific community, and if they have noticed a shift in perception. Specifically, do researchers still find that the idea of CFS/ME having a psychological origin still persisting among peers or other related clinical, regulatory, or academic professionals?

    My feeling as a patient is that there have been some seminal papers released lately (Hornig et all in particular) which have had some large attention from media. And that those papers have shifted perception among the general population. I wonder if the evidence for a physiological origin for this disease has had any noticeable impact from within academia, or in other areas of science.

    Thank you @Ben Howell, you and the OMF should be commended for the outreach that you are providing to us. It's more than appreciated.
     
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  13. Ben H

    Ben H OMF Correspondent

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    Done! :)
     
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  14. Sasha

    Sasha Fine, thank you

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    This just amazes me about the whole project - they're designing all this incredible stuff!

    If the test ends up cheap enough, won't this have huge implications for medicine generally, let alone for poorly misunderstood diseases in particular?

    Where the heck is the NIH in all this? (Don't bother answering that one! :))
     
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  15. A.B.

    A.B. Senior Member

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    The OMF data so far suggests problems with energy production in cells (in a highly selected sample). The Rituximab results suggest B cell related autoimmunity in at least half of patients (in a sample meeting the Candadian case definition, recruited through, I believe, referrals from neurologists).

    According to the Norwegians, the more severely ill patients seem to be less likely to respond to Rituximab.

    Maybe this is a variation of the story of the blind men and the elephant, maybe we're starting to see subgroups emerge more clearly.

    My questions to the OMF:

    How are you approaching the subgroup issue?

    Do you think that the Rituximab response group has the same disease as the patients that you have looked at so far?
     
    Last edited: Jul 13, 2016
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  16. Ben H

    Ben H OMF Correspondent

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    Ron's prior discoveries have absolutely revolutionised medicine and understanding, as his whole career has. So I imagine its a Yes! Cutting edge stuff indeed.
     
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  17. A.B.

    A.B. Senior Member

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    Also, would it be worthwhile to pressure the NIH into funding this project? The next #millionsmissing campaign could ask for funding specifically for the OMF and Lipkin. I don't know the culture in the NIH and whether it could bring the desired results or possibly backfire. Does the OMF think that this would be a good idea? Could this quickly lead to an incrase in funding?
     
    Last edited: Jul 13, 2016
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  18. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    "If the test ends up cheap enough, won't this have huge implications for medicine generally, let alone for poorly misunderstood diseases in particular?"
    YES! That's what they think!
     
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  19. JoanDublin

    JoanDublin Senior Member

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    I could cry with happiness after reading this! This would be an amazing revolution!
     
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  20. Ben H

    Ben H OMF Correspondent

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    Hi @A.B.

    Genetics may be reponsible for the subgroups, and this is currently being investigated:

    http://www.openmedicinefoundation.org/expanded-mecfs-metabolomics-study/

    Quoting from the article:

    "The purpose of this study is to validate earlier findings of a possible diagnostic signature for ME/CFS by measuring metabolites and to evaluate the contribution of genetics to the variation in observed metabolic signatures in this disease."

    However we need to wait for the findings to come out/for Ron to answer these specific questions with more certainty. He is extremely busy as you can imagine and some things are not able to be answered just yet due to various reasons, as I said in the opening post. I will make a note of your questions, and as soon as I learn more, will let you know.


    Thanks!


    B
     
    Last edited: Jul 13, 2016
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