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The 2016 IACFS/ME International Conference--Review by Cort Johnson-Part 1

Discussion in 'General ME/CFS News' started by Gamboa, Nov 18, 2016.

  1. Gamboa

    Gamboa Senior Member

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    Cort Johnson has done it again and written an excellent review of the recent 2016 IACFS/ME International Conference in Fort Lauderdale, Florida.

    I was there and can tell you all that it was truly a turning point in the history of our disease. We are finally getting somewhere and there is no turning back now. Hope and excitement was in the air and I can hardly wait to see what we will learn next.

    http://www.healthrising.org/blog/20...ercise-metabolomics-chronic-fatigue-syndrome/

    Please read and enjoy, get excited, and above all, have hope. Help is on the horizon.
     
    merylg, Izola, shannah and 17 others like this.
  2. Sidereal

    Sidereal Senior Member

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    Great article. Interesting tidbit from the CDC study involving one-day CPET:

    For the first time in my life I feel like we're getting very close to understanding what's happening.
     
    merylg, Mary, Comet and 11 others like this.
  3. Sasha

    Sasha Fine, thank you

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    Interesting about normal anaerobic thresholds because I thought that previous research had said that ours were lowered.
     
    Mary and Theodore like this.
  4. Sidereal

    Sidereal Senior Member

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    I thought that previous research also tended to show normal anaerobic threshold on one-day CPET, with a drop on the second-day test.
     
  5. TiredSam

    TiredSam The wise nematode hibernates

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    So we aren't deconditioned then? Thank goodness Sonja Chowdhury was there to hear that and will be rushing back to the UK to update her colleagues.
     
    KME, Mary, Webdog and 7 others like this.
  6. slysaint

    slysaint Senior Member

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    Someone raised the issue of deconditioning at AfME AGM and she said nothing.
     
    BurnA, Cheshire, TiredSam and 3 others like this.
  7. RogerBlack

    RogerBlack Senior Member

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    Apologies - not finding this study - can you link?
     
  8. Sidereal

    Sidereal Senior Member

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    It's not published. The bit I quoted is from Cort's write-up of the conference.
     
    BurnA and RogerBlack like this.
  9. ash0787

    ash0787 Senior Member

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    " It’s a bit surprising that we don’t see more heart rate variability measures done within exercise studies "

    yes, this seems to be the easiest thing to measure that is noticeably different in us

    I was thinking of tweeting this article to ester crawley but it doesn't seem that she has an account
     
    MEMum likes this.
  10. Gijs

    Gijs Senior Member

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    That is not true. AT and Vo2max are very low in many ME patiëntes they also have tachycardia (POTS)ALSO NOT DECONDITIONED!
     
  11. L Y

    L Y

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    I enjoyed the conference immensely. I did not understand the push to invite Big Pharma to the table as from what I understand all our subgroups have a hard time handling the toxic load of drugs. Our bodies make drugs and every drug has an amino acid precursor(s). I didn't understand why the K-Pax supplement has caffeine and why Mitoq has uneccessary additives.
     
  12. RogerBlack

    RogerBlack Senior Member

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    It is of course possible that a cure might be achieved by the correct mix of essential oils and spices, but...

    'Amino acid precursor' is not correct.
    Yes, some drugs may be partially or mostly composed of amino acids, in that many drugs are proteins which are built of amino acids, but this is not meaningful, as most proteins have over 50 amino acids all of which must be in the right order.

    Drugs are usually proteins or other chemicals which are not made by the body - even if it has enough materials.
    In the same way you can't buy a lot of bags of concrete and bricks and expect a house to result if you just add water - you need to put those amino acids together in a specific way to make proteins to form drugs.
    The body has no blueprint for most drugs, or in some cases is not using that blueprint.

    Simply supplying more bricks won't help.

    Practically every amino acid alone has been tried by now, either in trials, or by patients - if it was that easy we'd have been done by now.

    Something that changes the function of the mitochondria in the body is likely to be either a novel drug that is not synthesised by the body, a small molecule (not a protein composed of amino acids) or perhaps even a DNA approach such as CRISPR.
    All of these need big pharma.
     
    Last edited: Nov 22, 2016
  13. lansbergen

    lansbergen Senior Member

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    @RogerBlack The immunemodulator I use is a synthetic imidazothiazole derivative
     
  14. Kina

    Kina Admin Support Staff

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    Can we please get back to the topic of the thread -- the 2016 IACFS/ME International Conference--Review by Cort Johnson-Part 1

    The thread is becoming off-topic.

    Thank you.
     
    RogerBlack and MEMum like this.

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