International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Webinar with Dr. Alan Light on Novel Gene Variants in ME/CFS and Fibromyalgia

Discussion in 'Upcoming ME/CFS Events' started by RL_sparky, Jan 31, 2017.

  1. trishrhymes

    trishrhymes Senior Member

    I suspect this is not what you are talking about, but PEM is well known to lag a day or two behind the increased activity that triggered it.
  2. Barry53

    Barry53 Senior Member

    I was talking about process control feedback loops, where there is a notional loop in which information about the controlled output is fed back "round the loop" to then modify the input so as to modify the output in a controlled way. Fine when all working well, not fine when it is not.

    Hysteresis (roughly) is where something responds differently to if its trigger changes in one direction, compared to when its trigger changes in the other direction.

    I can add links here later, but may be drifting off-topic.

    Just for completeness:-

    Note when it talks about "feedback" it really means negative feedback, which is (more or less) self correcting when all is working properly. What I now find fascinating is that the same fundamental principles are at the heart of biology as well - as is so often the case nature got there millions of years before humans "invented" it. But I am realising that biology has the potential to be vastly more complex than even the most sophisticated man-made control systems.

    The thermostat in the example will also have a bit of hysteresis in it. The boiler will turn off at a slightly higher temperature than it will turn back on at again, to avoid the boiler cycling on and off rapidly.
    Last edited: Feb 9, 2017
  3. bertiedog

    bertiedog Senior Member

    South East England, UK
    I have been taking 20 mg Propananol since around 2000 and it has helped massively with POTS symptoms. When it is hot I have to take another dose in the afternoons together with a low dose of Fludrocortisone.

    However when I have a virus or infection it doesn't make any difference to my energy level or ability to exercise, its only when I am feeling well that Proananol allows me to be more active.

    Kati and ukxmrv like this.
  4. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    I want to make some comments on things in this thread.

    First, I do not consider the Light data to be in any major conflict with the metabolomics data.

    There are probably a number of hypotheses in which mitochondrial gene variants might increase risk of ME, but not be causal of ME. It might imply that they are part of the trigger process though, and so might be involved in severe relapses as well.

    Risk from mitochondrial gene variants causing ME would indeed increase risk through the female line, because children inherit the mother's mitochondria. However if the gene is actually encoded in the nucleus, as some mitochondrial protein genes are, then it would be both the male and female lime that lead to inheritance. So it might be a confused mix.

    As I see it the genetics establish risk. That is during extreme biological events the chance of something going wrong is higher. This does not mean that once the problem is established the primary driving force is the genetics. We need to know a lot more.

    Rather than be alarmed that different researchers are pursuing different angles, I am encouraged. Once we have enough of the jigsaw pieces, and have looked at it long enough, the picture will begin to emerge. If everyone were working on the same tiny bit then we would only see a piece of the puzzle and might guess wrong about the big picture.

    Discrepant data, conflicting data, opposing hypotheses etc. can be very good in science. In theory it makes scientists focus, analyze more carefully, and design better experiments.
    bertiedog, Tyto alba, Helen and 5 others like this.
  5. lansbergen

    lansbergen Senior Member

  6. AdamS

    AdamS Senior Member

    I have M.E & POTS and found Midodrine to be pretty effective at first at reducing fatigue. My POTS specialist recommended combining it with Ivabradine but when I did I became more lethargic. I'm not sure if I have a beta receptor autoantibody but it would be interesting to try Propranolol in combination with Midodrine to see what impact it has. Interesting stuff, thanks for posting.

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