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Mitochondrial dysfunction - mainstream view in CFS or not?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Sasha, Jun 2, 2011.

  1. Sasha

    Sasha Fine, thank you

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    I've been reading Dr Sarah Myhill's theory that ME/CFS is all about mitochondrial dysfunction. I'm wondering whether this is the view of major figures in the research field - I'm thinking Klimas, Montoya, Bell, people of that kind of stature. I don't recall seeing much about mitochondria in conference summaries.

    I'd like to discuss her stuff with my GP but don't want to if he will consider it left-field - I need to keep him on my side and don't want to freak him out with weird stuff.

    Dr Myhill is offering a mito function profile based on a blood test and says that results correlate with patients' energy levels - I wonder if that is recognised by mainstream doctors, particularly in the UK. It seems to be a fairly new thing, done by a Dr John McLaren-Howard.
    brenda likes this.
  2. Esther12

    Esther12 Senior Member

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    Mitochondrial dysfunction - mainstream view in CFS or not?

    I think not.
  3. liquid sky

    liquid sky Senior Member

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    There may be mitochondrial dysfunction, but that is a symptom and not the cause of the disease. We need to look at what is causing the disease.

    What would be the purpose of the test, Sasha? Even if it shows low energy levels, don't you already know that? Just trying to save you some needed funds.
  4. Sasha

    Sasha Fine, thank you

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    Hi liquid sky - if it was a test recognised by mainstream medicine (albeit not normally offered to PWC on the NHS) it would be good to have an abnormal test to wave around (despite decades of severe disability I test normal on the standard tests like most of us). Second, I don't think she treats everyone for mito dysfunction - only those who get an abnormal result. I've just had a flick through trying to find if she reports what % of PWC get an abnormal test (had a feeling I read it but am further in now and can't remember/may have been confused, it's heavy going). Treating the mito dysfunction involves coughing up for more supplements (an expense in itself).

    It's going to take several re-reads of the thing to get it all straight in my head - clearly if she thinks all cases of CFS are caused by mito dysfunction there's no point having the test before treating. Unless different kinds of abnormalities require treating with different supplements/doses (the profile looks at three or four aspects of mito function).

    Think I need a brain transplant. I'll put an icepack on while I'm waiting. :headache:
  5. richvank

    richvank Senior Member

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    Hi, Sasha.

    I think I would have to say that most of the "major figures" in ME/CFS research and treatment have yet to take on board the existence and importance of mitochondrial dysfunction in this disorder. I would say that the appreciation of this is coming along much faster in the autism community (as you may know, I believe that autism and ME/CFS are essentially the same disorder from the biochemical perspective, though the symptoms and epidemiology differ strikingly, I believe due to the different ages at onset, in relation to brain development and puberty, but this also is not a view shared by the "mainstream" medical community).

    At the most recent IACFS/ME confererence in early 2009, mito dysfunction came up a few times in the course of the talks there, but the only one who really focussed on it was Norman Booth, who presented the paper by himself, Myhill and McLaren-Howard. At least the conference committee allowed this to be presented orally, rather than being relegated to the poster session.

    Dr. Myhill and I wrote a draft review paper on this topic and submitted it to two journals about 3 years ago. It was rejected by both. One of them was the journal Mitochondrion. Of course, we can have different views about why it was rejected, but my impression was that the reviewers either didn't accept the existence of ME/CFS as a physiological disorder, or didn't accept the connection between ME/CFS and mito dysfunction. We may try again in the future.

    I would say that Dr. Bell does take it seriously, and in fact he recently wrote a piece in his "Lyndonville News" newsletter about the Myhill et al. work and the more recent Vermeulen et al. paper, which argued against it. Dr. Cheney also takes the mitochondria seriously, and understands that the diastolic dysfunction he observes in the heart is associated with mito dysfunction. Prof. Martin Pall recognizes mito dysfunction as part of his NO-ONOO model for ME/CFS and other disorders.

    Dr. Klimas and Dr. Montoya have certainly heard about it, but I don't believe it's a major part of their thinking. Most of the ME/CFS researchers are specialists in one aspect or another, but I don't think any of them focus on the mitochondria or the energy metabolism (also called the intermediary metabolism) in general. Dr. Klimas focuses on the immune system. Dr. Montoya is an infectious diseases specialist, and is currently focussing on viruses.

    In my view, mito dysfunction in ME/CFS is real and significant, and accounts for problems in the skeletal muscles, the heart, the immune system, the nervous system, and part of the endocrine system. I believe it can be traced back to a vicious circle mechanism that includes glutathione depletion, a functional B12 deficiency that results from glutathione depletion, a partial block in the enzyme methionine synthase that results from the B12 functional deficiency, draining of folate from the cells as a result of this partial block, and disruption of the sulfur metabolism, also as a result of this partial block, which causes the glutathione depletion to continue, completing the vicious circle and therefore making ME/CFS a chronic condition.

    Putting known biochemistry together with the detailed results of Dr. McLaren-Howard's testing, I believe that it is straightforward to explain the mito dysfunction as a direct result of this vicious circle mechanism. I believe the validity of this argument is supported by reports of increased energy level in people who are able to lift their partial methylation cycle block, as found in the clinical study conducted by Neil Nathan, M.D. and myself.

    I don't think I've ever seen a result of mito testing in a person who has ME/CFS that did not show mito dysfunction. Likewise, the methylation pathways panel seems always to show glutathione depletion or partial methylation cycle block, and most commonly, both, in ME/CFS patients. I have a pretty good collection of both by now, which people have sent me, in addition to the methylation panels we ran in the clinical study.

    I wish I could tell you that the entire ME/CFS research and clinical community has been totally turned on to this, but unfortunately this has yet to occur, and it will likely take considerably longer for it to trickle down to the mainstream GPs. If a pharmaceutical company figures out some way to make a buck or two from it, things could go much faster, but my view is that working with the biochemistry using orthomolecular treatments, rather than blocking part of it, as most patented drugs do, is more likely to help the function of the mitochondria.

    Best regards,

    Rich
  6. Sasha

    Sasha Fine, thank you

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    Thanks, Rich, that's an extremely helpful reply and you're very kind to give the time for such a detailed response.

    I've been flailing around lately trying to find a CFS practitioner whose treatment protocol I might be able to follow even if I don't have access to them (and in the UK, I don't have access to any) and what strikes me about them is the disparity in their approaches. As you say, each has their own speciality and their treatments seem to reflect this. We desperately need a joined-up theory, which requires a joined-up research effort. It's as though everyone has a piece of the puzzle but no-one is putting it together to make a picture.

    It sounds as though I had better not tackle my GP with this but rather just get stuck into Dr Myhill's protocol without any testing (a copy of which she would be obliged to send to my GP).
  7. liquid sky

    liquid sky Senior Member

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    Hi Sasha, sounds like Rich gave a great reply. Good info. I have been trying to boost methylation with supplements for a few months now. Have cured angular chelitis with the metafolin, so happy just for this. I do believe that Rich and others are on to something quite useful.
  8. fla

    fla Senior Member

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    But are there multiple possible causes for these test results? Would depression cause any of these test results or are these test results a signature (dare I say biomarker) for ME/CFS?
  9. ukxmrv

    ukxmrv Senior Member

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    The mitochondrial dysfunction test has been used in the UK for a few years now so lots of patients have discussed with their GP's, used it in benefit claims and tried to get consultants to take it seriously. Usual mixed bag of results. No NHS doctor I've seen or GP has considered it useful so I'd not class it as mainstream. The odd NHS doctor has been in favour and interested but less so than some other experimental tests. Some patients find that the DWP accepts it as evidence of disability but mixed results.
  10. richvank

    richvank Senior Member

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    Hi, fla.

    I don't know the answer to this. ME/CFS and autism give similar results on these two types of testing. I'll have to ask Dr. McLaren-Howard and Dr. Audhya whether other disorders give similar results.

    Best regards,

    Rich
  11. Sasha

    Sasha Fine, thank you

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    Thanks, ukxmrv - very useful to know.
  12. Levi

    Levi Senior Member

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  13. Sasha

    Sasha Fine, thank you

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    Interesting - thanks, Levi. It's an abstract of a 2011 paper, "Mitochondrial enzymes discriminate between mitochondrial disorders and chronic fatigue syndrome"

    Authors: Lambert van den Heuvelb, Hans Knoopc, Benno Kstersa, d, Antoon Janssenb, George Borme, Gijs Bleijenbergc, Richard Rodenburgb and Baziel van Engelena
  14. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Here is a link to Dr Bells lecture:

    http://www.masscfids.org/resource-library/3/309

    I asked a question about Mito testing, and I don't think he said there was any good testing for Mito.

    GG

    PS it would be in the Q & A section.
  15. bertiedog

    bertiedog Senior Member

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    I wanted to add that I have had the ATP test and it showed a partial blockage, the first time by high DNA/RNa which they thought was probably viral and the 2nd time 3 years later by high nickel.

    One thing that ALWAYS seems to be overlooked is the role of T3 in the mitochondria function and also the role of underfunctioning adrenals. It is a fact if the adrenals are not producing sufficient cortisol which is what happens in ME/CFS after a prolonged period of being sick then the thyroid will not function properly and T3 will not be produced in sufficient quantities. This will affect the mitochondria.

    I can turn around my energy level within a few days by getting my thyroid better balanced by the type and amount of thyroid meds that I take, plus I need low dose steroids to get sufficient cortisol. Without either then I feel half dead and this would be reflected in the mitochondria.

    For me to get good energy I need low dose Prednisolone a small amount of h/c, some T4, small amount of dessicated thyroid med and a small amount of T3. Take away any one of these and I am in a lot of trouble. Its obviously very complicated but it is possible but all mainstream and many other doctors overlook the crucial role of the thyroid and adrenals especially if reliant on blood tests. I used to have so called normal thyroid blood tests but I was completely hypothyroid (had high antiobodies too but these weren't tested for by the NHS).

    I think there are many reasons for this problem with the adrenals and thyroid, it can be endocrine disruption due to heavy metals or intracellelar bacteria plus viruses not dealt with by the Immune system but I am not convinced one can get really well just by treating with antivirals or antibiotics because if there is this big problem with the endocrine system the body will be too weak to deal with the drugs and the side effects. However if treated then the body is so much stronger and one can tolerate them without too many problems. This has definitely been my experience. Before treatment of thyroid and adrenals I couldn't tolerate anything now its hardly a problem, but still there is a reaction which can be unpleasant if one is actually trying to kill off these bacteria or if one is trying to chelate heavy metals.

    Doctors really need to go back to basics and look at why the body is so weak and why are the mito not producting sufficient ATP. I know this is what Dr Myhill does but she has backed down on the amount of h/c that might be needed when there are adrenal problems as shown up in a 24 hour saliva cortisol test and in addition she isn't very knowledgeable about the role of T3. She told me I would do fine on just thyroxine in order to get more normal blood tests. It was a disaster I went completely toxic because i cannot convert the T4 to T3 and she should know that this happens in this illness but she didn't. I had to suffer and find out for myself so even if we do go to good doctors we aren't necessarily getting the best advice, at least that was my experience.
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  16. justy

    justy Senior Member

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    Hi Sasha, i somehow missed this post.
    I have had the mito function test with Dr M and have subsequently been to see her. Yes it is possible to move someway forward just with her free book and advice from her website, but in my experience the testing is very useful. I am in contact with quite a few othewr people as well who have had better gains once they had the testing and followed the advice. It is highly individualised and will show you exactly where it is best to focus your energies. When i first had the test and results i didnt realise this, and because of not understanding some of the science i lost a lot of time fiddling about with it.
    Dr Myhill herself realises that mito dysfunction is a symptom, but it is a symptom that can be supported to recover somewhat. The test can also point you in the direction of any further testing you might need e.g for toxins etc.
    The NHS wont recognise the test my Doctor describes it as "experimental" and even claims not to understand it (strange cos i do) but it did push them into giving me a proper diagnosis after 17 years of not knowing what was wrong with me. Also it gives you a very good idea of how much more pacing/rest you need as she gives you a functional score based on cell free DNA and ATP, it really helped me to see how real my illness was and is useful for shutting people up who think its all in my head.
    Many other CFS doctors such as Bell and Cheney recognise mito dysfunction as being an important player.
    Personally i really think the test is well worth the money if you intend to take her advice. (which will be extensive!)
    All the best, Justy x
    Sasha likes this.
  17. PhoenixDown

    PhoenixDown Senior Member

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    "Depression" is a symptom or usually list of symptoms, it's not a disorder or disease, just another "we don't know" word often used to excuse prescribing SSRI's, SNRI's, etc.
  18. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Speaking of Neil Nathan, M.D., has he moved to California? I live within a days drive of Springfield, MO and was thinking of seeing him, but could not find any contact information there.
  19. richvank

    richvank Senior Member

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    Hi, LB.

    Yes, he is practicing with Gordon Medical Associates in Santa Rosa, CA, now.

    Best regards,

    Rich
  20. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Well, I can't say that I really like that, but thanks for the information.

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