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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Whey protein powder to address ME/CFS metabolic issues being identified by researchers - which one?

Discussion in 'General Treatment' started by Sasha, Dec 31, 2016.

  1. Sasha

    Sasha Fine, thank you

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    Thanks, @Cheesus. This is all rather over my head, but haven't people been saying that it's not simply a question of supplementing to tackle the deficiencies?
     
    Ben Howell likes this.
  2. Cheesus

    Cheesus Senior Member

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    @Sasha

    Yeah I have seen that, but I am desperate and it seemed to work for this guy. I don't know what else to do.
     
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  3. Sasha

    Sasha Fine, thank you

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    I don't blame you for considering it! I don't know what to do either. o_O
     
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  4. Cheesus

    Cheesus Senior Member

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    Sometimes I just want to curl up into a ball and cry, but I don't have any of that left in me. The pain of disease is more just an ever-present background drone now. Almost like a constant suffocating feeling. I need out :(
     
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  5. Sasha

    Sasha Fine, thank you

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    :hug:

    My fingers are crossed that this is the year that we finally get some treatment - not necessarily a cure, but at least a treatment that might take the edge off.
     
  6. Cheesus

    Cheesus Senior Member

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    I hope you're right.
     
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  7. trishrhymes

    trishrhymes trishrhymes.wordpress.com

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    Does anyone know whether we can get reliable amino acid testing in the UK? I don't suppose we'll get it on the NHS, but it might be worth paying for.
     
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  8. Cheesus

    Cheesus Senior Member

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    There are a couple of places:

    https://purehealthshop.ecwid.com/#!/Metabolic-&-Functional-Tests/p/48202815/category=12550131
    (see Genova amino acid bloodspot on right)

    Also http://bluehorizonmedicals.co.uk/ep...acetedSearchProducts&SearchString=amino acids

    I think the second of these two provides more comprehensive testing, but it comes at a price.
     
  9. Sasha

    Sasha Fine, thank you

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    @Ben Howell - do you know if this is one of the things that would be tested for in the samples that Ron Davis would be collecting from us?
     
  10. Ysabelle-S

    Ysabelle-S Senior Member

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    I think the whey protein powder is helping. It's certainly not caused any problems. Not a miracle worker either. Didn't take it yesterday and felt more lethargic. Could be coincidence, don't know. Don't think I'm taking the full dose that's recommended either.
     
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  11. Sasha

    Sasha Fine, thank you

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    Glad you're getting some (slightly) positive results, @Ysabelle-S. I took a teaspoon a day for two days and had a run of migraines, and felt more tired.

    Just in case that was a coincidence, I may retest it later.
     
  12. Ben Howell

    Ben Howell OMF Correspondent

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    Can you expand @Sasha ?

    If you mean by metabolomics, then yes, amino acid levels would inherently be part of the testing.

    B
     
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  13. Murph

    Murph

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    To answer a question about how much people take, I take one of the big 30gram scoops. I've had days where I've done that twice (without a notable effect).

    When I made my first post I'd had no real crashes since starting the whey. Now i've crashed once. So I'm now less convinced it's any sort of miracle cure, but I think it still is doing some good. At the very least it is getting some calories from protein which hopefully crowds out some carbs. And it tastes pretty good!

    Only trouble is I seem to have gone through an $A70 tub in about a month. I shall have to decide if that represents good value or not!

    Also, FWIW, since people above are discussing Naviaux and amino tests you might be interestd in this. A while ago , I went and checked if Naviaux's paper showed amino acids being any lower in patients than controls, (like in the Fluge and Mella paper.)

    You might remember the Fluge and Mella paper had two groups of aminos. Ones that fed in before the PDH problem (which were normal), and ones that fed in after (which were low).

    The first four rows in this picture show the levels of some of the AAs Fluge and Mella found being normal, as measured by Naviaux. The following six rows show some of the ones F+M found being low. You can see columns for female patients and controls, then the same for males.

    Screen Shot 2017-01-12 at 10.21.09 PM.png

    In summary, it doesn't seem to me to replicate their findings. (nb I am just an amateur at all this). Most AAs are about the same in patients as controls. That could be for technical reasons, I'm not sure (or because F+M's work doesn't replicate: eek!). But, intriguingly, it does seem to show higher levels of the early cycle AAs than the later ones, which is not totally inconsistent with Fluge and Mella.
     
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  14. Sasha

    Sasha Fine, thank you

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    Thanks, Ben, you've answered my question. :)
     
  15. Ysabelle-S

    Ysabelle-S Senior Member

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    I should have said that I take about two teaspoons of whey in a drink twice a day, so it's not the full dose recommended on the packet. I think that might be heaped desert spoons. I also can't recall if recommended dose is three times a day. I must check. If so, it might be time to up the dose since I've been on it for over a week.
     
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