Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Link to last night's panel discussion at Berkeley with Dr David Tuller and Prof Ron Davis

Discussion in 'General ME/CFS News' started by Countrygirl, Feb 21, 2018.

  1. Countrygirl

    Countrygirl Senior Member

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  2. perrier

    perrier Senior Member

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    One of the interesting questions was from the Incline Village survivor. He suggested that every person who became affected had been/lived in a sick building. And he wanted to know if the panel looked into this.

    The response, from what I recall, was that the testing was not reliable, and that Dr. Montoya was looking at this in one of his 4 studies. Is this what others got from the responders? I think it was Dr Davis who suggested the testing was at this point still questionable.

    Where does this leave us with the testing?
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    I did not watch the panel, and do not know the answer, but I know that Incline Village (Tahoe) and nearby Truckee had a major mold problem and some of the schools and buildings were later deemed with SBS (sick building syndrome) similar to the bldg I worked in for 10+ years in my career which was condemned in an earthquake and had mold, chemicals, asbestos, etc, yet they allowed us to continue working there.

    I also lived in a rental with toxic mold during the same time period (yes I have bad luck extraordinaire). I know in my own illness, mold/mycotoxins were the final blow to my immune system which caused me to lose the ability to tolerate food and developed severe MCAS in 2015 (which has now been reversed). If I had not moved away from the toxic mold and sick buildings, I do not believe my current treatments would have ever had a chance to work. But I am just speaking about my own case and never presume it applies to others.
     
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  4. ebethc

    ebethc Senior Member

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    auto-antibodies are mentioned... does anyone have more details, like which ones are tested?
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    I have no info on anything but would be very curious to hear this part too!
     
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  6. Diwi9

    Diwi9 Senior Member

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    Dr. Davis said that he plans on studying mold, but that he plans to develop a more accurate testing protocol.
     
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  7. lnester7

    lnester7 Seven

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    I wonder where Davids has been since he posts once a week about and I have not seen anything as of late (I might of missed it)
     
  8. JES

    JES Senior Member

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    Probably working day and night, at least that's the impression I get from his looks in the videos I've seen.
     
  9. alex3619

    alex3619 Senior Member

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    He has a more accurate method, 10,000x increased sensitivity, but it will probably be years before its developed to be commercially useful.
     
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  10. alex3619

    alex3619 Senior Member

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    What I found interesting, and news to me, is the researcher who was developing an animal model for ME. This person got a needle stick injury and came down with ME, and then was aggressively treated from the start. They recovered. I think Montoya could elaborate more on this.
     
  11. Diwi9

    Diwi9 Senior Member

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    This was interesting. Many researchers say that they feel there is a genetic component because ME/CFS is more likely in family members, especially first degree...but what if it means that there was transmission. I don't like to think about being contagious, but at this time, we are unable to confirm or deny that it is.

    ETA: Interesting that Dr. Nath recently reported that so far he's seen little genetic predisposition.
     
  12. Gingergrrl

    Gingergrrl Senior Member

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    I haven't watched the presentation but do you mean the researcher had a needle stick injury from the animal's blood (assuming the animal had ME/CFS?) and then developed it himself? When you say they were aggressively treated right from the start, does that mean they developed it immediately after the needle stick? I thought it took a minimum of being ill for six months before an ME/CFS diagnosis is given? Also, what were they treated with that caused the recovery? Was it an anti-viral? This seems like a very odd anecdote to me!
     
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  13. Mel9

    Mel9 Senior Member

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    I think the test is for mycotoxins (from fungi) rather than fungi themselves?
     
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  14. alex3619

    alex3619 Senior Member

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    Yes, we need to be able to measure the actively toxic products of things.
     
  15. alex3619

    alex3619 Senior Member

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    Watch the video, then you will know all I know. This has not been discussed publicly, but its not the first time something like this has happened. I am guessing they did not wait six months, but we lack the information to know what really happened. In any case under SEID you can immediately make the diagnosis.
     
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  16. alex3619

    alex3619 Senior Member

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    I do not think we can infer from this that it is contagious. They were developing a virus based animal model from what I can gather from the brief comment. Those viruses would be the ones they thought might cause ME.
     
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  17. Cinders66

    Cinders66 Senior Member

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    Great panel. A few of the questions seemed a bit out there.

    I didn't agree that the reason we don't have effective protests is because half are housebound or worse, they aren't. There seems a group of walking wounded who don't really do advocacy but just live impacted lives. They aren't on forums or anything, if we could get help from them it would help. Can't force people though and maybe the narrative around ME, or even being with more sicker people puts those people off.

    Otherwise I didn't learn so much but it really is great to see the panel and the compassion and dedication.

    I also wonder, as much of the audience seem to be CFS afflicted, how much reaching the healthy unrest is doing, if it ain't in the family, maybe it can't reach them but still a phenomenal asset.
     
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  18. andyguitar

    andyguitar Senior Member

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    I spent a while looking at the Incline Village incident. Consider toxic algae rather than mould and you might find the answer. As to investigating Mould (or fungi as i call it) treatment for anyone who may be ill due it, is complicated by the fact that in some cases a specific drug will be needed to treat a specific type of fungal infection. Try putting 'Cryptococcosis' into your search engine. You may have to dig deep.
     
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  19. Countrygirl

    Countrygirl Senior Member

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    If I recall correctly, didn't Dr Cheney tell us some years ago that his nurse developed ME after getting a needle stick injury following the treatment of an ME patient?
     
  20. Gemini

    Gemini Senior Member

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    Thanks @Countrygirl for posting this very interesting panel discussion!

    Responding to a question about tests for ME/CFS, at 41:00 Dr. Montoya describes 4 studies he's working on:

    1. Validating the anatomical abnormalities found in the brain
    2. Attempting to "see" chronic inflammation in the brain
    3. Studying the neuroendocrine system of childbearing women
    4. Comparing ME/CFS to chronic Lyme disease
     

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