Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

Discussion in 'Latest ME/CFS Research' started by Hip, Oct 21, 2016.

  1. debored13

    debored13 Senior Member

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    I have also been wondering about triheptanoin. One of the things it's given for is pyruvate decarboxylate deficiency. However, the deficiency in ME/CFS is a pyruvate dehydrogenase deficiency. I actually mixed these two up and got overly excited thinking that triheptanoin would be a cure. However, if it's safe, i'll probably try it anyway, as I plan on trying anything that can affect the kreb's cycle and is shown to be reasonably safe. e.g. no injecting atp lol ...
     
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  2. debored13

    debored13 Senior Member

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    oh wait... but pyruvate decarboyxlase could be relevant, since it is involved in converting pyruvate to oxoloacetic acid. better put my thinking cap on.
     
  3. debored13

    debored13 Senior Member

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  4. Hip

    Hip Senior Member

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    I looked at triheptanoin, but unfortunately it's difficult to get hold of: see this post.
     
  5. debored13

    debored13 Senior Member

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  6. debored13

    debored13 Senior Member

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    the person who recommended this to me worked for the glut 1 foundation at some point. may be able to get me some triheptanoin. I would want to use food grade i guess, it is used in cosmetics
     
  7. scisolver

    scisolver

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    I've been wondering about this ATP profile test from the UK lab as well. I wonder what Ron Davis at Stanford thinks of this. He said he developed a cheap microchip test for ME/CFS that measure mitochonrdial function, but it isn't released. Shouldn't Ron Davis know about this ATP test since he is working on a test and biomarkers?

    He also said that whatever it is that is causing the problem is a high molecular weight and is in the serum. They were able to filter it out. Also, if you put the ME/CFS serum on control patient cells then their mitochondria fail, and if you put control serum on ME/CFS cells then the ME/CFS cells work perfectly fine.
     
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  8. Deepwater

    Deepwater Senior Member

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    I believe the McLaren test which Dr. Myhill uses involves testing in serum, and also fresh (never been frozen), and both of those things are reckoned to be critical to getting a good result, but don't quote me.
    However, I feel duty bound to warn that if the test is being ordered to convince hostile UK doctors, then the fact that the central test, for mitochondrial function, hasn't yet been verified by anyone else could be a problem; some work on comparing the result to those of conventional muscle tests is ongoing but we don't know the results.

    There are other uncontroversial tests in the panel, for deficiencies in things like CoQ10, L carnetine and cell free DNA, which should indicate serious problems to the doctor if abnormal, which they usually are in pwME, but doctors working in the NHS can be remarkably dumb. The cell free DNA is often several times the normal level so a clear indication that the body is under attack.

    The Department of Work and Pensions (DWP) and the companies such as ATOS whom they employ to weed out scroungers do accept these test results, and now there is work ongoing to verify the central ATP test doctors might be reluctant to section or force GET on someone who has abnormal results from these tests. But I should warn that, despite having them accepted by the DWP, I had my results roundly rejected by the consultant at one of England's CFS clinics, although this was at the time when Dr. Myhill was suspended, a fact of which this doctor was gloatingly aware. He simply slammed them to the corner of his desk with an explanation of 'not recognised here'.

    Professor Newton's research was funded by UK taxpayer and found mitochondrial defects using more conventional muscle biopsies, so she might be an alternative, but she doesn't offer a testing service and is based in the far NE so unless the biopsies could be taken locally and sent up to her that would be a very difficult option with such a sick child.
     
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