Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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An Update on ME/CFS Research with Ronald W. Davis, PhD

Discussion in 'Latest ME/CFS Research' started by Ben Howell, Feb 21, 2017.

  1. justy

    justy Donate Advocate Demonstrate

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    The thing that is bugging me is that Dr Myhill found issues with the Krebs cycle and ATP/mito/energy production many years ago and even though some are helped by supplementing as she suggests many more are not helped even a little bit. Unless this is an acquired mitochondrial disease then the effects on the krebs cycle are surely downstream of the actual cause or main dysfunction? As many of us know, sometimes we hot on something that seems to wok, or unstick a problem, only to find it turns on us and bites us on the arse!

    If its a protective mechanism then to me you need to get to the root cause - trying to unstick the protective mechanism leaves you, well, unprotected.
     
  2. JES

    JES Senior Member

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    Life Extension has a new ATP + Propionyl-L-carnitine supplement that is claimed to boost RBC and plasma ATP levels for at least six hours. Apparently the capsules are enteric coated, but other than that, I'm unsure what makes this product better than previous attempts.
     
    Jo Best likes this.
  3. Aroa

    Aroa

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    Let´s scientists do their work. There are many brilliant people working in this, who already succeded in very important discoveries. I also like their approach of fast tracking

    I guess they will probably know more than they say and are not sharing it until they are 100% sure

    I trust Ron Davis and OMF and I know they will find the anwers we need for this desease :)
     
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  4. Kenny Banya

    Kenny Banya Senior Member

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    Donated US$500
     
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  5. Valentijn

    Valentijn WE ARE KINA

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    Even for known mitochondrial diseases where it's fairly well known what's going wrong and what the effects are, the use of the indicated supplements and drugs to help compensate for it is very hit-and-miss. It's just not at all easy to get more energy into cells which are having trouble producing it.
     
  6. Barry53

    Barry53 Senior Member

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    When I did my RAF apprenticeship a long time ago, they never stopped hammering into us "Don't assume - check!".

    That by the way is not a comment in any way on what Ron Davis and his team are doing, because I am 100% certain the same mantra is etched into his DNA.
     
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  7. Barry53

    Barry53 Senior Member

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    I guess the follow-on from this is:-
    • Does this prove unequivocally the ongoing symptoms of ME/CFS are physiological? I suspect it probably does.
    • In time given further work, will it unequivocally prove the physical effects cannot be triggered from psychological triggers. I imagine to prove that you would have to test patients suffering from depression-induced fatigue for example, and suffering from nothing else, and hope the impedance signature is very different to that of ME/CFS.
     
  8. TreePerson

    TreePerson Senior Member

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    Except he does seem to be very confident that the problem is not the cells. That the difficulty arises in the serum. Just to have this proved or confirmed is a big step forward.
     
  9. Mary

    Mary Senior Member

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    FWIW, and I don't know if this is related in any way to this research, 10 or 11 years ago I took calcium pyruvate and got a great energy boost - with no PEM - for 3 or 4 days ..... I've tried it several times since then without the same results.

    So I'm pretty sure just taking ATP is not going to fix what's wrong, although it may be a patch. I take several things that do help with energy, it makes me think of plugging holes in a dike - none of these things solve the central problem, but they can sometimes help with symptoms.
     
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  10. Jo Best

    Jo Best Senior Member

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    Folks in UK may wish to take the opportunity to inform anyone (GP, MP, media etc.) you think needs to be better informed or updated, that Ron Davis will be returning to London this year for the Invest in ME Conference events, because even if they can't attend it helps to raise awareness that the world's leading biomedical researchers meet in UK and also get their heads together at the two-day biomedical researchers colloquium to join up the dots in this complex disease. There is a conference leaflet you can download on this page - http://investinme.eu/IIMEC12.shtml#home

    Meanwhile, the full presentation given by Ron Davis at the 2016 London conference is on the IIMEC11 DVD (medics can gain professional development credits by watching) - http://investinme.eu/IIMEC11.shtml#dvd
    and this pic includes my favourite quote from his excellent presentation. It sums up this disease for me - Ron Davis Cancer MECFS.jpg
     
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  11. Snowdrop

    Snowdrop Rebel without a biscuit

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    That would be great news if you could get some interest in corporate donations. But a word of caution. Because you are in the UK and are talking about corporate London you might want to be sure they don't get the idea of donating to local ME charities of dubious value. Not to say there are not charities in UK worth supporting (there are) They might hear about the great work being done elsewhere and think that it's all good and the same and want to contribute locally in a way that could be disaster. Or perhaps I'm misunderstanding (and being concerned unnecessarily) in the specificity with which you targeted them. Certainly possible.

    Anyway, appreciation for you taking the time to try and wrangle money for ME research.
     
    Last edited: Feb 22, 2017
  12. Solstice

    Solstice Senior Member

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    Oh, i'd encourage everyone that's donating to the OMF to boast about it as much as they can. Might just pull some more people over the line and it would do wonders for "brand recognition".
     
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  13. M Paine

    M Paine Senior Member

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    Great video, great science. Thanks to Ron, @Rose49, and @Ben Howell for keeping us so well informed.

    I hope one day soon, that his son will receive an effective treatment out of Ron's lab, and will walk amongst the living once more. The devotion and effort put forward by Ron and others is awe inspiring. Thank you.
     
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  14. Barry53

    Barry53 Senior Member

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    Hear hear!
     
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  15. picante

    picante Senior Member

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    I believe Gulf War Syndrome is another neuro-immune disease with metabolic dysfuntion. And also pathetically neglected by the well-funded medical establishment.
     
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  16. Yabisa

    Yabisa

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    I have same sympthoms in both.
     
  17. Ben Howell

    Ben Howell OMF Correspondent

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    THANKYOU SO MUCH FOR THE DONATIONS GUYS! :thumbsup::angel::thumbsup:

    I can confirm, without a shadow of a doubt, that is indeed how Prof Davis is. Even before my time over here this has been demonstrated, and during my time here has been demonstrated again and again and observed directly by myself! I assumed something about pyruvate, and Prof Davis flipped my theory on its arse, in a way I had not even comprehended. I'd like to say it was my cognition and brainfog, but it's not. It's just the way Prof Davis thinks. No assumptions. I have never met anyone like him.


    B
     
    Last edited: Feb 22, 2017
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  18. arewenearlythereyet

    arewenearlythereyet CURRENTLY MODERATED FOR NOT BEING SERVILE

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    I have emails on my phone, but my numb fat fingers are too useless to do anything but read them.
     
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  19. Wolfiness

    Wolfiness Activity Level 0

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    So the appeal now is for funding so they can hire more staff : how many minutes of a lab tech's time testing treatments would, say, $5 buy? Maybe we could frame it like that to help catch people's imagination. Or "For every $x dollars we can test a different drug treatment".
     
    Last edited: Feb 22, 2017
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  20. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    Thank you! I dream of this every day!
     
    sue la-la, MEMum, ballard and 27 others like this.

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