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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Dr Sarah myhill mitochondrial dysfunction test

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by godlovesatrier, Sep 14, 2017.

  1. godlovesatrier

    godlovesatrier

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    Hi all,

    I am wondering if anyone has had the mitochondrial dysfunction test from Dr Sarah myhill and whether these tests proved useful?

    The neurologist Dr Simon Ellis talked me out of these on the pretence that they may actually be a few herring and not very useful in overall diagnosis. Even though I agree with him I don't feel as if anybody- clinician or otherwise knows what's best for a CFS patient?

    The tests seem a little cheaper now than they were so I am considering it again. As I am interested to see if there are markers in the blood that point to a specific aspect of ME that I have instead of the broader diagnosis that are sometimes attributed through...lack of reputable testing ideas?

    Anyway I'd be interested to hear people's experiences before I pay for the tests.

    I'm also looking at Kenny Merlier after someone recommended him on these forums. But costs seem to run into £4000 max when combined with all the test costs.

    Thanks.
     
  2. wdb

    wdb Senior Member

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  3. Learner1

    Learner1 Professional Patient

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    My very knowledgeable doctor who is always looking at what's new that can help his challenging patients said there's no really accurate mitochondrial test when I asked him specifically about Acumen.

    And having read a lot about it since then, I'm not sure it would change my treatment. We need to figure out what's creating the cell danger response and stop that, feed the mitochondria the nutrients they need, and that will lead to happy mitochondria.

    I'm not in Europe, but what I've read about KDM would make me think twice. I see a top US CFS specialist and have an excellent naturopathic doctor and they have me on a comprehensive program with immune support (IVIG), antiviral, antibiotics, probiotics, probiotics, enzymes, nutrients, botanicals, hormones and LDN and I am gradually improving.

    From what I've seen here, KDM is narrower in his approach, which has worked well for some people but messed up others.
     
    Isaiah 58:11 likes this.
  4. skipskip30

    skipskip30 Senior Member

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    Is there any news on the study they were doing on how accurate the acumen mito fiction test is yet?
     
  5. Hip

    Hip Senior Member

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    In the following posts, patients have uploaded their mitochondrial results, from the Acumen Lab "ATP Profiles" test: 1 2 3 4

    If you want in explanation of the theory behind the "ATP Profiles" test, see this post:

    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers



    Generally speaking, the "ATP Profiles" test does not help that much in terms of finding an appropriate ME/CFS treatment, though it might be useful in cases where patients' families are incredulous of their disease, as at least with this test they can show some objective proof of being ill.

    Having said that, the "ATP Profiles" test has not as yet been independently validated (although I understand a validation study is underway); so the "ATP Profiles" test should at this stage be seen as an experimental research test, rather than as a validated way to diagnose ME/CFS.
     
    Mary likes this.
  6. godlovesatrier

    godlovesatrier

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    I agree any test that proves your I'll to employer or family is useful. Especially when they constantly think your fine when you know your not.

    I remember I think jack kruse might be his name. Talking about adp being required for mitochondrial function? In one of his extremely difficult to read articles at any rate. You need a PhD and then some to really understand his website I think. But I did change my drinking water I drink 1 litre that has 80mg of magnesium in it. I drink this every day and to be honest it makes a massive difference. I recommend it to anyone who mentions ME. Sadly nobody seems to take this one very seriously but it really does work. I'm working on changing my routine too - changing my home did make a huge difference 12 months ago but since then I feel like I may have gone backward a bit. But it makes you aware of how easily your body can relapse even without over doing it.

    Anyway adp was mentioned and I think Sarah's work incorporates a bit of that too. I need to re-read some of the above links and her website. But it as mentioned that magnesium was key in adp creation and I believe adp creates edp which fuels the mitochondrial cells. Unsure on the proven science behind This!

    Thanks for the link to the thread too. That one didn't pop up in the suggested threads :)

    So frustrating that ME can be broken down into so many sub groups. Makes it hard to pin down your exact "strain" of ME. Secondary problems not included.
     
  7. anni66

    anni66 mum to ME daughter

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    We did the ATP profiles test for my daughter for 2 reasons.

    It provides an objective assessment re degree of fatigue/ dysfunction which correlates to the Bell fatigue scale. This can be useful to counter usual " in your head" paradigms that govern assessment and treatment here.

    It tests for orovision of atp/ adp and inefficiencies in ox phos due to blocking of active sites and levels of key cofactors/ substrates. Translocator protein studies can identify some blocking compounds. So the overall function in and out of mitos is assessed.

    You can get a treatment protocol, however there is little guidance re the order of introducing supplements, which , to me, is important.

    We discovered a functioning level of 35% ( compared to low end of normal function) which seemed to correlate to subjective " what can you do " scales. Low levels of mitos both whole cell and mitochondrial, low key co factors, and poor ox phos, and very low adp conversion. So a lot wrong. A hint that oxidative stress is one underlying problem .

    It does therefore help in that you have some confirmation that you are not going mad. It is however undecipherable to NHS gps and paediatrics, so you have to be able to explain it - i am working on as straightforward an explanation as i can, helped by Hip' s thorough assessment posted on PR.

    In my experience all the medical staff can understand are figures and reference ranges. The inter relationships between electrolytes, serum and proteins are lost on them , as are looking at b12 and ferritin for anything other than anaemia, vit D, calcium and phosphate for anything other than a propensity for ricketts. It is sad.

    I think any supplementation has to be co ordinated and am nowhere near clued up enough to dive in- it is neither my body nor my life which would be directly affected.

    This forum has been fantastic to help decipher mechanisms, and symptoms. Our health system is completely at a loss re tackling anything in a joined up manner.
    I have just been recommended a nutritional therapist who was previously a biochemist. Long lead time to get a consultation so i' m hoping we can build up health to cope with longish journey .
    Now at around 25-30% , mainly due to intolerance issues with acetyl l carntine and mineral salts.

    Hoping for a turnaround soon.
     
    Isaiah 58:11 likes this.
  8. TigerLilea

    TigerLilea Senior Member

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    I can't even take 50 mg of magnesium. It makes me extremely lethargic and I end up napping two to three hours every afternoon. I can't think. I can't function. I was seriously considering having testing done to see if I was starting to get dementia I was that bad. I'm happy to hear that it worked well for you, but unfortunately for some of us, it makes everything that much worse. :(
     
  9. Learner1

    Learner1 Professional Patient

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    I cannot say enough good about doing a Genova Diagnostics NutrEval test. It gives you a wonderful roadmap to follow to create a comprehensive supplement program.
     
  10. anni66

    anni66 mum to ME daughter

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    Thanks - we will probably do this or the chronic fatigue screen ( may not be up to the multiple vials of blood - she' s beginning to feel like a tetley tea bag too ). Working up stamina and funds . I think the SNP options are worth looking into.
     
    Learner1 likes this.
  11. charles shepherd

    charles shepherd Senior Member

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    There was an update on this on-going research into the Acumen test at the CMRC conference this morning from Dr Karl Morten (Oxford) and Professor Julia Newton (Newcastle)

    KM and JN (along with other members of their muscle research groups) are collaborating on the MEA RRF funded study which is examining whether this expensive commercial test is an accurate way of assessing mitochondrial function in ME/CFS

    I'm only just back from attending what was an excellent two day biomedical research conference in Bristol and will produce a short report on key points tomorrow (Friday)

    There may be a separate thread on PR covering the CMRC conference - if so this presentation may have been reported there as well

    CS
     
    anni66, Abha, Valentijn and 6 others like this.

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