Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Fellow Brits, where are you getting mito profile testing?

Discussion in 'ME/CFS Doctors' started by King Elliott, Nov 17, 2016.

  1. King Elliott

    King Elliott

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    Obviously Dr Myhill has stopped accepting applications for the test and I'm struggling to figure out the best way to get it done.

    Sure, the labs Myhill uses will analyse samples sent by other doctors but I've never met an NHS doctor who would even consider signing off on the test, even on a private basis. I suspect many private doctors would be less than eager to help me as well.

    That leaves me looking for other options.

    How are you guys doing it?

    I'm based slightly south of London if anyone has any specific recommendations.

    Thanks a lot for any help!
     
  2. 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 into the role of mitochondrial dysfunction in ME/CFS and how it should be assessed - including the expensive 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 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 independent researchers. The results will then be submitted for publication. Once the results have been published, the MEA will be making a further statement on this commercial test.

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

    And if mitochondrial function needs to be investigated, especially to rule out primary mitochondrial disease - which can be misdiagnosed as ME/CFS, then there are 'Gold Standard' NHS tests available (muscle biopsy, MRS etc)

    So this is NOT a test that we can 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/

    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) to demonstrate 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

    Abstract from Lancet paper:


    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 (CS) 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

    Summary
    We have examined the muscle biopsies of 50 patients who had postviral fatigue syndrome (PFS) for from 1 to 17 years. We found mild to severe atrophy of type II fibres in 39 biopsies, with a mild to moderate excess of lipid. On ultrastructural examination, 35 of these specimens showed branching and fusion of mitochondrial cristae. Mitochondrial degeneration was obvious in 40 of the biopsies with swelling, vacuolation, myelin figures and secondary lysosomes. These abnormalities were in obvious contrast to control biopsies, where even mild changes were rarely detected. The findings described here provide the first evidence that PFS may be due to a mitochondrial disorder precipitated by a virus infection.
     
    Abha, TiredSam and Luther Blissett like this.
  3. Hip

    Hip Senior Member

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    Funny how there has not be much interest in the ATP Profiles test on these forums for many years, and now within two days, two people have asked about them (one person on this thread, and the other person asking is here).
     
    Skippa likes this.
  4. charles shepherd

    charles shepherd Senior Member

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    I think these queries may stem from the fact that it appears to have become far more difficult to obtain this commercial test

    As the MEA is involved in a research study that is assessing the value of this commercial test it would be interesting to know how much people are now paying to have it performed and which doctors, if any, are still using it
     
    Hip likes this.
  5. mermaid

    mermaid Senior Member

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    Cornwall, UK
    I had the test done twice once by Dr Myhill in 2009 and a 2nd time by Dr Charles Forsyth about 3 years ago. @King Elliott - Dr Forsyth would be reasonably close to you, but at the moment he is not taking anyone onto his waiting list (see his website) but it only says on there no more in 2016 so maybe worth seeing if he will in 2017. He has clinics in London and Surrey.

    Dr Myhill has a list on her site of other practitioners who use her methods and the test presumably, but last time I looked for it I could not find it, though someone else then posted it for me.
     
  6. KME

    KME

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    Ireland
    [I am not personally recommending for or against this testing.]

    Nutritionists at the Optimum Health Clinic do mitochondrial testing. My understanding is that it is the same test that Dr Myhill does, but it would be interpreted by a nutritionist, not by Dr Myhill. http://www.theoptimumhealthclinic.com/nutrition-consultations/ I looked into it but did not do it.

    The information I received in 2014 was as follows: The "CFS Profile" £125 comprises an ATP profile, cell-free DNA, red cell NAD test and superoxide dismutase studies. If there is a "significant blockage" the lab also does a "translocator protein study" for an additional £90. Both of those are done by Acumen lab. There were additional tests suggested through Biolab: red cell glutathione, CoQ10, red cell magnesium and L-carnitine - £18, £35, £21 and £40.
     
  7. charles shepherd

    charles shepherd Senior Member

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    This is a private clinic where the approach seems to concentrate on psychological therapy and speculative nutritional medicine

    The MEA receives a very mixed feedback

    So I would suggest to people that they check out some of the 'patient evidence' before paying for what could be quite expensive tests and treatments

    Eg from PR:

    http://forums.phoenixrising.me/inde...ence-with-the-optimum-health-clinic-uk.40731/
     
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  8. Valentijn

    Valentijn The Diabolic Logic

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    They also deliberately add the nutritional and other alternative treatments to make the psychological therapies more palatable to ME/CFS patients. Basically it's their version of a cynical advertising ploy.
     
    ukxmrv likes this.
  9. KME

    KME

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    It’s possible that you could be referred for conventional medical mitochondrial testing – not what you asked for, but could be relevant depending on your presentation. Came across a case recently where a person with a 9 year diagnosis of ME/CFS, infectious onset, underwent conventional medical mitochondrial testing http://www.mitochondrialncg.nhs.uk/ (London, Oxford, Newcastle, contacts http://www.mitochondrialncg.nhs.uk/contacts.html), and abnormalities were found on muscle biopsy and exercise testing. The person was told that the particular abnormalities found are different to what they usually see in ME/CFS, suggest their diagnosis of ME/CFS is a misdiagnosis and that they actually have mitochondrial disease, with further testing required to establish what ultimate diagnosis will be. The person was also told that about 1% of ME/CFS patients actually have mitochondrial disease instead. And that adult-onset mitochondrial disease can be brought on by a viral infection. Interesting.
     
    ukxmrv likes this.
  10. PeeWee

    PeeWee

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    The British Society for Ecological Medicine's website includes a 'Find a Practitioner' list of doctors. You can specify cfs as the condition you are interested in & you'll get a list of doctors. We chose one and called to check the doctor was able to order & interpret the atp profile test (which we had been told by Dr McLaren Howard at the Acumen labs has limited availability at present due to shortage of supply). The test, and various others including an Adrenal Profile Test, were done in December. Though we haven't yet discussed the results with the doctor they definitely indicate abnormal patterns and areas for discussion, which is a refreshing change from 'congratulations, you are in the best of health'!

    Yes, private testing can be expensive, but the cost of lost years is huge. It seems to us that mitochondria are in the frame and this is a way to begin to investigate this for us now rather than waiting years for the results of research studies to be reported.
     

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