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Molecular Underpinnings of ME/CFS Explored at OMF Symposium (HR Blog / Working Group Details)

Discussion in 'Latest ME/CFS Research' started by Jesse2233, Sep 9, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    From @Cort on Health Rising

    Some nice behind the scenes details on the working session not covered at the symposium.

     
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  2. Jesse2233

    Jesse2233 Senior Member

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    @mariovitali is this data something you could incorporate into your machine learning algorithm?
     
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  3. Jesse2233

    Jesse2233 Senior Member

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    Well this is interesting
    I've emailed Dr Light the name of a doctor currently using it for ME

    Thought this was noteworthy as well...

     
    Last edited: Sep 9, 2017
  4. mariovitali

    mariovitali Senior Member

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    I sure can give it a try, but I will have to see the Data first in order to understand what types of Analysis are applicable.

    FWIW i also have ready a complete hypothesis with relevant genes that can be outright evaluated to CFS cohorts.

    I will try to contact Dr. Davis shortly.
     
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  5. voner

    voner Senior Member

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    here an intriguing staement....

     
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  6. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Putting rapamycin in a search here produces a huge number of hits.
     
  7. aquariusgirl

    aquariusgirl Senior Member

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    Barry53 and Murph like this.
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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  9. hixxy

    hixxy Senior Member

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    I guess this is unpublished work or is my memory just failing me as usual? Do we know what this gene is yet (or the other 13)?
     
  10. Murph

    Murph :)

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    One of my big take-aways from this is that a bunch of researchers I didn't know about are on the case. How good is that!

    For biologists this must be a bit like a gold rush. A whole disease lying in wait, ready to be uncovered. Hopefully we can keep recruiting more top minds (and their research budgets!) to the cause
     
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  11. Murph

    Murph :)

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    My friend is a microbioogist and she likes to use the term bug! it seems to cover most microbes, e.g. bacteria, bacteriophages, parasites and archaea. Bacteria is the most well-known but many things live in us.

    FWIW I found the piece fascinating:

    Blood has always been considered free from microbes, because bacteria don’t grow when it is put in a culture dish. But recent DNA sequencing methods reveal that each millilitre of blood in fact contains around 1000 bacterial cells.


    These bacteria are usually dormant. But they can be revived when iron becomes available in the blood, and begin secreting lipopolysaccharides (LPS) – molecules on their cell walls that are recognised by the immune system and stimulate inflammation.

    Their focus is on dormant microbes waking up and causing clotting. I imagine that's not all they could cause. There was an interesting thread the other day about people with curiously low blood iron. Could that be the body's attempt to keep these dormant bugs dormant?!
     
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  12. Solstice

    Solstice Senior Member

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    The Lyme and ME thing could also just mean that different treatments cause different signatures?
     
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  13. mariovitali

    mariovitali Senior Member

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    In no way i am trying to stop the excitement. I just believe that we have to be extremely cautious.

    I am very concerned because 5 out of 6 people with CFS were found to have Liver fibrosis (stage 2 and greater) after taking a Fibroscan test. I am also very concerned because several patients of CFS got this syndrome after taking certain medications. We know that certain medications generate Oxidative Stress while being metabolised at the Liver.

    Rapamycin has a lot of side effects. I am not saying that it shouldn't be tried, i am saying that caution is warranted here.

    Ultimately we must find the source of the problem and not treating its symptoms.
     
  14. Sasha

    Sasha Fine, thank you

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    @Cort, can patients who've been treated with rapamycin help with this by contacting their doctors and asking them to contact the Lights? Or writing to the Lights and asking them to contact their doctors? If so, you might want to start a new thread with that call to action. (You might want to check with the Lights first! :))
     
  15. Vassie

    Vassie

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    @Janet Dafoe (Rose49)
    @Ben Howell

    I have been thinking for a long time whether I should write this or not. This is something that worries me very much, so I've decided to share my thoughts with you. I've tried to keep it as short as possible, because I don't want to take too much of your precious time.

    I've been reading some of the great reports of the symposium. I think it's wonderful that Ron wants to share his data and that he wants to work together with anybody to solve this disease. I do however have my doubts about collaborating with professor doctor Kenny de Meirleir who was also present according to the reports.
    It's not my intention to spread slander about him. I do, however, want to warn you that his way of working is questionable and he is not completely reliable. He doesn't disclose his conflicts of interest and they do exist. His statements made to colleagues (doctors, fellow-scientists) and patients are often incorrect, exaggerated, contradictory and even misleading.
    I found out the hard way and I want to prevent this from happening to you. It is so important that Ron, the Stanford Group and OMF succeed.
    Please be careful and be critical.
     
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  16. A.B.

    A.B. Senior Member

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    There is some interesting new information. Not much but still.
     
  17. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    Unfortunately they don't have big or sometimes any research budgets for me/CFS. They do pilot studies or just do what they can with minimal funding. OMF has helped but Ron said at the symposium that the biggest block to progress is funding. That's why we are hoping their grant proposal for one of the NIH centers gets funded. Some of this research is included in that proposal. Cross your fingers and toes! It would be a wonderful thing to get these great scientists pulled into the field and attract more. Indeed, they are starting to realize what an interesting and urgent puzzle this is, and for them such things are fun! We need these people involved!
     
  18. Joh

    Joh Inactivist

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    Found this article extremely interesting! Watched the 8 hour lifestream of the symposium but the article offers lots of additional information. :thumbsup:

    Didn't know that such a huge study is happening with Mike Snyder. Makes me so hopeful!

    I just recently realized that infections can trigger several chronic diseases and that this is not ME/CFS-specific. Found this example with diabetes and how genes could be involved very interesting (but also over my head):

    This gave me hope, too. A researcher who didn't know anything about ME/CFS, but read about it in a Stanford magazine and found it so exiting that he wanted to contribute. This is the worst part for me that no one seems to be interested in this stigmatized disease, I can literally see doctors shutting off their brains as soon as I mention the words ME/CFS ("It's only a syndrome, I'm tired too by the way, just do some exercise and let me treat patients with real diseases"). So that this is starting to change and ME/CFS is considered interesting (and with it its sufferers) is most important!

    They are searching participants for a new severely ill patients study:

    Haven't read through the whole very long (and in English) article yet. But find this view behind the scenes amazing! :)
     
    Last edited: Sep 12, 2017
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  19. Cort

    Cort Phoenix Rising Founder

    I would think that would be a good idea. :)
     
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  20. Cort

    Cort Phoenix Rising Founder

    The Snyder study was the most exciting part of the Symposium. My jaw dropped when I learned how big it was...(Who knew?) :hug:
     
    Joh likes this.

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