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Ronald W. Davis, PhD's presentation at the IIMEC13

Discussion in 'ME/CFS research news' started by Alvin, Sep 17, 2018.

  1. alex3619

    alex3619 Senior Member (Voting Rights)

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    There is at least one patient, I forget his name but I think he might have a thread on this here, who has tried filtering the blood, with at least minimal success. Transfusions are tricky, not only do you risk infections, but they are citrated and it can produce metabolic problems. Its also possible to wind up with iron overload. However, it just might help, though personally I would be interested in some kind of plasma exchange experiment, rather than full blood transfusion. Plasma exchange might mean that you avoid many of the immune complications. Its still not entirely safe though, it needs to be tested and the risks identified in formal studies before many of us rush off to do it.

    If I recall correctly there are only so many blood transfusions you can safely have in a lifetime before complications set in. I would want to be sure its going to work before doing it.

    Another thing is something is producing the molecule in question, and we still do not know what it is or its source.

    Finally we do not know if removing this molecule will stop the disease, but it should make us feel better.

    Once we know what it is then other and possibly safer options to neutralise it might become available. Finding this molecule is very important to ME research.
     
  2. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    It might be possible to filter the blood, removing the factor x that's causing problems, and then give it back to the patient. But factor x could return pretty quickly.
     
  3. Jrehmeyer

    Jrehmeyer Established Member

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    With any of these, is there any theory about why they would be different between ME patients and healthy ones? Each thing seems so random and odd to me. Why would one even think to check these properties?
     
    Indigophoton, Samuel, Trish and 5 others like this.
  4. MarcNotMark

    MarcNotMark Senior Member (Voting Rights)

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    We don't even know if it's safe to remove this molecule. Maybe it's there for a reason, protecting us against something we haven't found yet.
     
  5. Trish

    Trish Moderator Staff Member

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    Given that all the molecules in the blood are part of a dynamic process of replacement and renewal, I don't imagine removing a particular type of molecule will do anything than very temporarily depleting it, to be replaced by whatever organ or organelle is creating it.
     
  6. mariovitali

    mariovitali Senior Member (Voting Rights)

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    I just realised that Dr Robert Phair will be talking in the upcoming Community Symposium !


    I had the opportunity to exchange many emails with him. He is a great person, always made me think with his provocative questions and his software appears to be quite interesting as well.
     
    merylg, Perrier, Simone and 5 others like this.
  7. alex3619

    alex3619 Senior Member (Voting Rights)

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    Correct.
     
  8. alex3619

    alex3619 Senior Member (Voting Rights)

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    With kidney failure you need very regular dialysis. This might be the same. The only reason to remove the molecule in practical terms would be if this reverses the disease. It might. It might not. This is an empirical question that a clinical trial could find the answer for.
     
    merylg, Dolphin, Hutan and 4 others like this.
  9. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

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    I think if you wanted to intervene at the level of this hypothetical ME-causing blood molecule, you would be looking for another molecule to bind to the bad molecule. Resulting in either destroying the bad molecule, or forming a complex that doesn't cause problems. Don't quote me. Hopefully a suitable molecule would already be available and fairly benign.
     
  10. alex3619

    alex3619 Senior Member (Voting Rights)

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    Or you could find something to bind to whatever it binds to, or block its synthesis, or enhance its degradation, or enhance an alternative pathway that fixes the issue. There are lots of possibilities once we know what is going on. Of course then it has to be tested ... a lot of new techniques fail their clinical trials.
     
    Aroa, Skycloud, Trish and 3 others like this.
  11. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

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    If said molecule were to be isolated then we could go gangbusters on all of these possibilities! I guess we'll see :unsure:.
     
    Trish and andypants like this.
  12. Forbin

    Forbin Senior Member (Voting Rights)

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    It might not be easy to get the samples, but I wonder how the blood of sleeping sickness patients would perform when subjected to the nano-needle - or, for that matter, checked for t-cell clonal expansion.
     
    Last edited: Sep 20, 2018
  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Didn't RD say that one of the next steps was to try it out with other diseases/illnesses; presumably with ones that are relatively easy to get blood samples for. How they proceed afterwards ,I imagine, will largely depend on what happens in these tests.
     
  14. Simon M

    Simon M Senior Member (Voting Rights)

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    The fabulous Julie Rehmeyer, I presume? Welcome to the forum, @Jrehmeyer

    You asked a good question.

    The short answer is that biological systems are complicated with lots of things interacting with each other. So just as symptoms are common to many illnesses, some biological findings will also be shared by different illnesses. Such as a mild shift to inflammatory cytokines.

    Jonathan Edwards has said that natural killer abnormalities can occur in several chronic illnesses. And Ron Davis said in a previous video that he expects the Nanoneedle finding to occur in other illnesses as well. But he said his focus was on demonstrating that ME/CFS patients really are sick.

    The reason for using sick controls is to home in on what is unique and important. In the case of a biomarker, it might help clinicians make a better and faster to diagnosis if they had a test to distinguish ME/CFS from other illnesses with similar symptoms.

    From a research point of view, it comes down to cause and effect. any single cause of the disease is likely to have many downstream effects, some of which probably play a key role in the illness, and some are just effectively noise.

    So if you had a particular metabolomics finding it could be a) causal, as in Ron Davis's metabolic trap, B) a downstream effects playing a key role in the disease, perhaps defects in energy metabolism as a result of an upstream immune problem. Or C) downstream noise, with no significant impact on the patient.

    Using sick controls won't answer all these questions, but if the findings common to many illnesses it might not be critical importance.
     
    Last edited: Sep 21, 2018
  15. Simon M

    Simon M Senior Member (Voting Rights)

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    I don’t know, but why not suggest it? It sounds like a great idea.
     
  16. Londinium

    Londinium Senior Member (Voting Rights)

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    I'm having to watch it in 20 minute chunks so it might be answered later on, but is there any indication that this result is going to be published in a scientific journal any time soon? The Davis team has mentioned the plasma swap result a couple of times at conferences now and I'm eager to see it as a published result: pretty hard for the BPS crew to argue that a patient's false illness belief is so strong that his/her blood can induce false illness belief in healthy people's cells...
     
    Aroa, Indigophoton, JoanneS and 14 others like this.
  17. Perrier

    Perrier Senior Member (Voting Rights)

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    I have to tell you the truth, but my daughter went to bed one night not sick, and woke up the next morning very sick, thinking it was the flu, but it was ME. Thus far, this wretched nightmare has not abated.
     
  18. Perrier

    Perrier Senior Member (Voting Rights)

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    My daughter had many units of blood given to her, perhaps a total 30 or more units of blood. She always felt a little better (not normal but better) after transfusion, but about 2 weeks after, the old ME resurfaced.
     
  19. Perrier

    Perrier Senior Member (Voting Rights)

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    He is also one of the most decent and kind researchers I have ever come across.
     
  20. Alvin

    Alvin Senior Member (Voting Rights)

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    I'm so sorry to hear this :(
    That is interesting, was it a mild return or sudden?
     
    adambeyoncelowe and andypants like this.

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