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ATP PROFILE TEST. Worth it?

Discussion in 'General ME/CFS Discussion' started by SmokinJoeFraz93, Aug 4, 2017.

  1. SmokinJoeFraz93

    SmokinJoeFraz93

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    I want testing done regarding my Mitochondria. Is it worth paying £200+? I don’t fancy taking a biopsy if I don’t need to.

    Thanks.
     
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    My question is what treatment it could lead to? A biochemist tested some values for me (privately because he was curious looking at my other tests) and they were very low (ATP and 2 other things--don't have the results in front of me). But did that help with treatment? Not for me. Probably most of us have mitochondrial dysfunction (rather than a primary mito disease), but what can we do about it at this stage? Supplementing things made no difference for me and others have said pretty much the same.
     
  3. charles shepherd

    charles shepherd Senior Member

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    The MEA Ramsay Research Fund is funding, or has been funding, four separate research studies here in the UK into the role of mitochondrial dysfunction in ME/CFS and how it should be assessed - including the commercial test you refer to

    MEA funded research into the commercial mitochondrial function test:

    http://www.meassociation.org.uk/201...-further-mitochondrial-research-20-july-2015/

    The main problem here is that this quite expensive commercial test has not been validated by other independent researchers - which is why it is not used (and is normally dismissed) by NHS doctors who specialise in muscle and mitochondrial disease

    The results from the research we have funded are now being analysed, along with some further laboratory work which has been done on this commercial test by two other researchers. The results will then be submitted for publication. Once they have been published, the MEA will be making a further statement on this test.

    In our present state of knowledge, there is insufficient evidence to conclude that any of these fairly expensive commercial mitochondrial function test results are a reliable indicator of muscle or mitochondrial involvement or function in ME/CFS

    And if this needs to be investigated, to rule out primary mitochondrial disease for example, then there are 'Gold Standard' NHS tests available (muscle biopsy, MRS etc)

    So this is not a test that we currently recommend or endorse

    MEA funded studies into mitochondrial dysfunction:

    www.meassociation.org.uk/2016/03/me-association-to-fund-fourth-study-into-the-role-of-the-mitochondria-in-mecfs-10-march-2016/

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  4. charles shepherd

    charles shepherd Senior Member

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    I would add that I have a deep personal interest in mitochondrial dysfunction having used my own skeletal muscle in the first research studies (which took place in the 1980s here in the UK) to demostrate evidence of mitochondrial dysfunction in ME/CFS.

    The first research, which I did with Professor George Radda et al at Oxford, and involved magneruc resonance spectroscopy, was published in The Lancet.

    The second, which involved electron microscopy of mitochondria from biopsy specimens, was carried out by Professor Mina Behan et al in Glasgow.

    Dr Charles Shepherd
    Hon Medical Adviser, MEA


    Lancet paper abstract:

    Lancet. 1984 Jun 23;1(8391):1367-9.
    Excessive intracellular acidosis of skeletal muscle on exercise in a patient with a post-viral exhaustion/fatigue syndrome. A 31P nuclear magnetic resonance study.

    Abstract
    A patient with prolonged post-viral exhaustion and excessive fatigue was examined by 31P nuclear magnetic resonance. During exercise, muscles of the forearm demonstrated abnormally early intracellular acidosis for the exercise performed. This was out of proportion to the associated changes in high-energy phosphates. This may represent excessive lactic acid formation resulting from a disorder of metabolic regulation. The metabolic abnormality in this patient could not have been demonstrated by traditional diagnostic techniques.

    Acta neuropathologica electron microscopy paper abstract:

    Behan, W.M.H., More, I.A.R. & Behan, P.O. Acta Neuropathol (1991) 83: 61. doi:10.1007/BF00
    53
     
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  5. Mary

    Mary Senior Member

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    I had ATP profile testing done by Sarah Myhill several years ago and it showed severe deficiencies re energy production. It was done with blood work, no biopsy needed. So it was nice to get confirmation that I had a real problem; however, it did not result in any additional treatment. I was already taking all the mito supplements Dr. Myhill recommended. I might have increased my CoQ10 based on the results, but that was it.

    So as @Sushi said, what treatment could it lead to? If you wanted it to show to your doctor or family that it's not all in your head, then it might be worth it.
     
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  6. SmokinJoeFraz93

    SmokinJoeFraz93

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    Thanks for your replies guys, I am overwhelmed (in a good way).

    I am taking the standard ‘protocol’ from Dr Myhill (supplements only because I’m not a caveman ), and it helps a little bit, I can’t lie. However, I just think that £200+ is a LOT of money to spend. I won’t bother then. I’d just rather ‘a test’ than muscle being taken from me.

    Can anyone tell me what causes the mitochondria within a CFS patient to become haywired?
     
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  7. Mary

    Mary Senior Member

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    I think if we knew this, we would have the answer to ME/CFS :whistle::nerd:
     
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  8. SmokinJoeFraz93

    SmokinJoeFraz93

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    Fair shout. Well for me, when I started vigorously exercising and loosing weight that I developed an eating disorder and CFS/mitochondrial dysfunction. ‍♂️
     
  9. ljimbo423

    ljimbo423 Senior Member

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    From the metabolomic study done recently by Fluge and Mella, there seems to be a switch to anaerobic glycolosis, in the mito.

    PDH is pyruvate dehydrogenase.

    link

    The defective PDH causes a slowing of the krebs cycle and therefore energy production as well as lactate buildup. Vitamin B-1 is a co-factor in PDH and can be helpful for some people.

    Very low doses (20-30mg) give me a big boost in energy, to the point of interfering with sleep. So if you try B-1, I suggest starting at a very low dose.

    Some ketogenic amino acids can also be helpful for some people, as they can bypass PDH, as the study says above.

    Jim
     
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