Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Bedside Chats with Ben: Ron Davis

Discussion in 'Latest ME/CFS Research' started by Janet Dafoe (Rose49), Nov 9, 2017.

  1. PinkPanda

    PinkPanda Senior Member

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    I found it interesting that ME/CFS patients have lower indication of viral infections than controls. Reminds me of a number of people not getting colds anymore since they became ill. Maybe some parts of the metabolism are overactive and others underactive and the overactive part takes up some energy.
     
    Last edited: Nov 10, 2017
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  2. CJB

    CJB Senior Member

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    Thanks so much to the team.
     
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  3. Ben H

    Ben H OMF Correspondent

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    Thanks for the wonderful comments guys. Its made my day knowing you guys liked it.


    B
     
  4. neweimear

    neweimear Senior Member

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    Thanks Ben, u did.a great job. Do you know how soon clinical trials may commence, would it be safe to assume sometime in 2018? I am so grateful they are looking for drugs that might help us.
     
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  5. jpcv

    jpcv Senior Member

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    It happens with me, no more upper respiratory infectons after getting sick; I used to have 3 or 4 infections during fall and winter.
     
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  6. lnester7

    lnester7 Seven

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    As a side note @Ben H if I would be in that position for one hour I would crash for weeks!!!! And I am way on the high end spectrum. When you put all energy and weight in one point is like aerobics excercise!!!
    Sorry if you knew this ( or if it doesn’t applies) but I thgouht to mentioned it becuase is interesting to see how different little things can make such a huge difference on energy management.
     
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  7. Countrygirl

    Countrygirl Senior Member

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  8. AdamS

    AdamS Senior Member

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  9. PatJ

    PatJ Forum Support Assistant

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    Thank you for posting this, and to whoever wrote the transcript. I can't listen to any audio due to sound senstivity (vestibular hyperacusis) so I have to rely on dodgy auto-transcription, or more accurate human transcription when it's available.
     
  10. ash0787

    ash0787 Senior Member

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    only got a 1/4 through but the thing im concerned about is its taking a long time to identify the molecule which was said to cause the observed effect in the new machine, this seems like a standard chemistry / molecular biology problem that an undergraduate would learn how to do, can it not be outsourced to various places e.g. chinese labs ?
     
  11. Ben H

    Ben H OMF Correspondent

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    Hey @neweimear , I can only go on what Prof. Davis said in the video. That may change (and hope to do followup chats etc) but yes they are looking at drugs that may have potential and not just at random!

    Hi @Inester7, thanks for the concern. Any much longer than that would not be good for me but that was ok. We are all that bit different. Posture isn't as bad an issue as it has been for me, its more extreme weakeness (as in can't lift arms for more than 5-10seconds etc), and cognition being horrendous as well as the usual issues. POTS not so much anymore.

    But thanks for the concern!

    Hey @ash0787

    It's actually a much more difficult problem than it seems. Whatever is in the serum is part of a huge contigent of other proteins, enzymes etc. You can filter by molecular weight, but isolating a specific 'factor(s)' is difficult. I believe there is progress there that we did not talk about, maybe that can be part of a followup...

    Also there is the potential it may be something missing from the serum. Just playing devils advocate but filtering would not necessarily help in that scenario.


    B
     
    Last edited: Nov 11, 2017
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  12. Ben H

    Ben H OMF Correspondent

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  13. valentinelynx

    valentinelynx Senior Member

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    Hmm. Regarding the patient who "looked good" despite the stress of coming in for a blood draw and had a "low signal", I'm wondering if I might fit into this category. I am able to push myself to function when needed and the average observer would not think there was anything wrong with me unless they observed me out of the public eye. That is, when at home, not working, I spend most of my time in bed, don't go out shopping, cook or clean. But I can push myself to work and travel, and function at a high level for several days, after which I spend several days to a week resting intensively I would be interested to know the results of my blood being tested by your methodology, especially if there is an overlap in treatment between myself and this other individual. I take a lot of medications and even more supplements. I am being treated by Dr. Kaufman in Mountain View.

    Janet Dafoe (Rose49) do you think it would be of value for me to be tested with Ron's technique? I'm likely to be in the Stanford area at some time in the near future. And, as I still think of it as my home, I look for any excuse to come visit the Stanford area... If I could contribute a data point, I'd be happy to make an effort to get there. Not to mention that it would be delightful to see the work in person!

    P.S. as an anesthesiologist, I believe that spinal taps should not be particularly painful. The most painful part is the injection of the local anesthetic. People with very activated nerves, from long-term severe pain, however, sometimes find any invasive procedure extremely painful and seem to be resistant to local anesthetics as well. This last paragraph is just a comment...
     
  14. Gemini

    Gemini Senior Member

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    Much interest from long timers who remember the early "blood volume" research!

    Besides what's "in" blood, there are "absolute" and "relative" concentrations of what's there-- or not there, possibly affected by volume....

    And physical versus chemical attributes like its viscosity, i.e., antibodies may make it thicker. Might there be altered size or shape of cells to consider...

    Dr. Bergquist at the recent OMF Symposium mentioned new technologies. Wonder if any would apply here....

    Thanks for posting @Ben and @ash0708. Great topic for follow-up!
     
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  15. Jill T

    Jill T

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    Thanks so much for this informative talk, @Ben H, @Janet Dafoe (Rose49) and Ron Davis!

    I have a question for Ron:

    He says that genetic material from viruses (EBV, CMV, HHV6, etc.) is undetectable in the patient's blood, and that, if a virus was active anywhere in the body, its residue would eventually enter the bloodstream to be flushed. (Love the sewer analogy) Since viral material could not be detected in the patients' blood, it is concluded that these viruses do not contribute to the ongoing symptoms of ME/CFS. Antivirals may be helping by effects other than their ability to destroy viruses.

    -----------------------
    Question:

    For patients with high viral antibody titres, is it possible that the viruses are active in the gut, so that they, and their genetic residue, are undetectable in the blood?

    The serum antibodies would quickly kill the virus if it entered the bloodstream from the gut, and viral residue could be flushed before being detectable.

    Antivirals could be acting on the gut virome. For example, valganciclovir is converted to the active form, ganciclovir, in the gut.
    -----------------------

    Here is a somewhat related article:
    A Role for the Intestinal Microbiota and Virome in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)?
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4929410/
     
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  16. ash0787

    ash0787 Senior Member

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    from watching the video it seems there is more of a trouble producing fresh instrumentation than it seemed, an understandable difficulty with such advanced technology, with no surplus instrumentation its difficult to do the division of labour which seems needed in this situation
     
  17. PatJ

    PatJ Forum Support Assistant

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    That sentence reminded me of this article titled '"Cruise ship virus" stows away in rare gut cells to avoid destruction'.

    Quote from the article:
     
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  18. bspg

    bspg Plant Queen

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  19. alex3619

    alex3619 Senior Member

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    It is well known issue but can be very time consuming. It can take decades, though I think modern tech should have reduced that time a lot. Its about finding one type of molecule out of many thousands, maybe hundreds of thousands. If you had a known target it binds to, which we do not, it would be much simpler. You could bind it to a tagged target and then isolate it.
     
    Last edited: Nov 16, 2017
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  20. alex3619

    alex3619 Senior Member

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    One thing I think could be done is to use techniques to generate subfractions. Since you can test for the problem, each subfraction could be tested. Its basically a divide and conquer approach ... use something that seperates a big portion, and test that portion and the remainder. Once you know which part its in, and hopefully not both, then you focus on that portion. Keep eliminating subfractions until you have only one. It would not be nearly as easy as I am saying here, but its a strategy.
     
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