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Dr Myhill et al publishes third paper on Mito study

Discussion in 'Latest ME/CFS Research' started by ISAS, Nov 24, 2012.

  1. ISAS

    ISAS

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    Dr Myhill, with colleagues Norman E Booth and John McLaren-Howard, has published again concerning mitochondrial malfunction and CFS/ME.

    Here is the abstract and links follow:

    We report on an audit of 138 ME/CFS patients who attended a private practice and took the ATP Profile biomedical test. The results revealed that all of these patients had measureable mitochondrial dysfunction. A basic treatment regime, based on 1) eating the evolutionary correct stone-age diet, 2) ensuring optimum hours of good quality sleep, 3) taking a standard package of nutritional supplements, and 4) getting the right balance between work and rest, was recommended for all patients. Additions to the basic regime were tailored for each patient according to the results of the ATP Profile and additional nutritional tests and clues from the clinical history. Mitochondrial function is typically impaired in two ways: substrate or co-factor deficiency, and inhibition by chemicals, exogenous or endogenous. For the former, additional nutrients are recommended where there is a deficiency, and for the latter, improvement of anti-oxidant status and selective chelation therapy or far-infrared saunas are appropriate. We show case histories of nine patients who have taken the ATP Profile on three or four occasions, and a before-and-after treatment summary of the 34 patients who have had at least two ATP Profile tests separated by some months. Finally, we summarize the results for the 30 patients who followed all aspects of the treatment regime and compare them with the 4 patients who were lax on two or more aspects of the treatment regime. All patients who followed the treatment regime improved in mitochondrial function by on average a factor of 4.

    http://www.ijcem.com/1207003A.html

    http://www.ijcem.com/files/IJCEM1207003.pdf


    http://www.ijcem.com/Forthcoming.html

    Isas
    taniaaust1, xchocoholic and merylg like this.
  2. Dreambirdie

    Dreambirdie work in progress

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    Did anyone here participate in this study?
    Little Bluestem likes this.
  3. Firestormm

    Firestormm Guest

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    I'd like to see the full paper. I'd also like to see this experiment completed in a blinded fashion though quite how you could achieve this I really don't know. I'm not conversant with mitochondrial dysfunction ATP testing - is it a valid clinically approved test or something else? Thanks.
  4. ISAS

    ISAS

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    Full paper is the pdf link.

    Thanks.

    ISAS
    Firestormm likes this.
  5. caledonia

    caledonia

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    People were using the test for disability and it correlated well with where they were on Bell's modified Karnofski scale (ME/CFS disability scale).
  6. caledonia

    caledonia

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    I like this comment on the PACE trial - in fact, this whole study should be taken and shoved in Wessley's face.
  7. caledonia

    caledonia

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    This is awesome!
    justy likes this.
  8. Valentijn

    Valentijn Activity Level: 3

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    Very interesting stuff, though I'm currently crashing and the numbers and terminology is making my head spin :p I agree, it would be great to see a controlled and double-blinded followup.

    And finally, I see a great slogan for picket signs - "ME = Mitochrondria, NOT Hypochondria!" :rofl:
    justy, merylg and alex3619 like this.
  9. Purple

    Purple Bundle of purpliness

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    merylg and Valentijn like this.
  10. Firestormm

    Firestormm Guest

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  11. maryb

    maryb iherb code TAK122

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    I'm impressed by Prof Johnston's views, why haven't we heard anything much about her. About right its someone from the north, all good things..................:D
  12. mobyjoby

    mobyjoby

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    I'm struggling to remember but wasn't their previous research paper felt to be lacking because of which type of cells they used to do the mitochondrial testing on? Is that the same with this paper?
  13. taniaaust1

    taniaaust1 Senior Member

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    LOL maybe I will use that slogan in the protest Im doing next week at research conference. That one is quite attention grabbing.
    merylg likes this.
  14. ISAS

    ISAS

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    Here is a Press Release from Dr Myhill:

    DR SARAH MYHILL PRESS RELEASE
    Upper Weston Llangunllo Knighton Powys Wales LD7 1SL
    01547 550 331

    Discussion of the release of the paper: ‘’Targeting mitochondrial dysfunction in the treatment
    of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – a clinical audit’’. Int J Clin Exp Med 2013;6 (1):1-15
    Sarah Myhill, Norman E Booth, John McLaren-Howard

    [http://www.ijcem.com/files/IJCEM1207003.pdf]

    We are pleased to announce our third publication which looks at targeting mitochondrial dysfunction in the treatment of ME/CFS.

    Our first two papers established that mitochondrial dysfunction is a central pathophysiological lesion in ME/CFS.

    [www.ijcem.com/files/IJCEM812001.pdfand www.ijcem.com/files/IJCEM1204005.pdf ]

    Those papers demonstrated that the patients with the worst levels of fatigue had the worst levels of mitochondrial (energy) function and vice versa. There was a very strong relationship between mitochondrial energy scores and patient fatigue scores and these studies clearly place ME/CFS as a physical disorder.

    Mitochondrial (energy) function scores are calculated from the ATP profile test. This is a test that measures how efficiently mitochondria can make ATP, how well they move ATP from the mitochondria into the cell where it is needed and recycled back and also how efficiently energy can be released from ATP once in the cell. These are important measurements because from them we one can further deduce whether the mitochondria are ‘’going slow’’ either because they are lacking the ‘’raw materials’’ to ‘’do the job’’, or because they are ‘’blocked’’ from doing their ‘’job’’. This ‘’blockage’’ could result either from an external source [a toxin] or from an internal source notably the fermenting gut.

    Knowing and understanding what the biochemical lesions are, and whether they derive from ‘’internal’’ or ‘’external’’ sources, means that treatment packages can be tailored to individual patients.

    The aim of this third study was, therefore, to see how well patients respond to this tailored package of treatments and what impact, if any, did those treatment packages have on both the ATP profile test results and also on the patient fatigue scores.

    The nature of this study was an audit – that is to say clinical decisions were made for the benefit of the patient, not for the doctor or researchers. However, the information that this audit yields is very encouraging. Essentially what is shown is that those patients who are able stick to the demanding treatment packages, involving a ‘’stone age’’ low carbohydrate diet, discipline about sleep and pacing, together with a package of nutritional supplements, do indeed improve biochemically reliably well. That is to say their ATP Profile test results improve consequentially with their treatment package compliance. Moreover, most of these biochemical improvements were accompanied by clinical improvements, as measured by patient fatigue scores. It was also notable that four patients who did not adhere to the treatment packages either saw no improvement or indeed worsened. In a clinical setting, therefore, it is incumbent upon the physician both to understand the difficulties that patients face with such a wide ranging treatment package and also to support fully the patient with the challenges they face.

    It is clear from these studies that mitochondrial function is not the only factor in ME/CFS, but it is an important one and correcting mitochondrial function is an essential part of improving functionality and therefore of recovery. Indeed it is my personal view that to put a patient on a graded exercise programme without first checking these essential biochemical parameters is not good medicine. One risks making the patient much more ill because the underlying cause of their disease has not been addressed.

    Conversely if the improvement in mitochondrial function, consequent upon compliance with the treatment package, is not paralleled by clinical improvement then there must be a further reason for fatigue.

    Discussion of reasons why correcting the mitochondrial function is not paralleled by clinical improvement and treatment options in this case

    The symptom of fatigue arises when energy demand exceeds energy delivery. The way I think about CFS/ME is that we all have a certain ‘’bucketful’’ of energy available to us everyday. Fatigue is the symptom we all experience at the end of every day which prevents us from FULLY emptying that bucket of energy. Of course part of my job is to make that bucket of energy as full as possible through addressing mitochondrial function, sleep, thyroid function, diet and so on. This third study demonstrates that patient compliance with the tailored treatment packages will help to achieve this ‘filling’ of the bucket.

    However, we, myself and the patient, also have to look at how that energy is spent [ i.e. how the bucket is emptied] and essentially it can be spent in four different ways: mentally, physically, emotionally, or immunologically. Patients quickly work this out for themselves [it’s called ‘’survival’’] and the careful spending of mental and physical energy is what we call pacing. The spending of emotional energy can be helped by a variety of means and again patients often work this out for themselves via methods such as meditation, deep relaxation methods or perhaps talking therapies. However, the most difficult problem to address is the immunological hole in our energy bucket. We all know this exists – take a ‘’normal’’ person and give them a dose of ‘flu and they will develop a very acute fatigue. This is because the immune system is enormously demanding of energy. Please see the following link for further discussion of this issue:

    www.drmyhill.co.uk/wiki/Energy_Expenditure_in_ME/CFS:_Immune_wastage_of_energy_and_Rituximab

    Therefore there is a two pronged approach – firstly to look at energy delivery systems and secondly to look at how energy is being spent. A very useful analogy is to think of the body as a car which means that the mitochondria constitute the engine of the car, the diet the fuel, the antioxidants the cooling system, the thyroid gland the accelerator pedal, the adrenal gland the gear box and so on.

    Once the expenditure on physical, mental and emotional energy has been addressed, along with putting in place the treatment packages as tailored via the ATP Profile test results, the most common reason therefore for a failure to improve is an immunological hole in the energy bucket. A common cause of failure to respond within this bracket of ‘’immunological hole issues’’ is a problem with the upper fermenting gut. For further details of how to treat the fermenting gut, please see:

    http://www.drmyhill.co.uk/wiki/Fermentation_in_the_gut_and_CFS

    In addition, I have seen success using pure T3 where there is evidence of hypothyroidism. The idea here is that there is thyroid hormone resistance - there are clear parallels here with type II diabetes in which we have essentially the same problem. In type II diabetes there are high levels of insulin, but insulin hormone receptor resistance. There is now good evidence to suggest that this resistance results from toxic stress. Indeed this issue was flagged up in a paper published in the Lancet which looked at the levels of persistent organic pollutants [POPS] in the general population. What was found is that those with the highest levels of POPS, compared with those with the lowest level, were 38 times more likely to be diabetic. For further details of how to treat this issue of thyroid hormone receptor resistance please see

    http://drmyhill.co.uk/wiki/Thyroid_-_the_correct_prescribing_of_thyroid_hormones

    The full text of the paper is available at: www.ijcem.com/ISSN:1940-5901/IJEM1207003. The details of the regimes necessary to recover are available free on-line at:

    http://www.drmyhill.co.uk/.

    The book detailing the treatment regimes can be downloadedfree of charge athttp://www.drmyhill.co.uk/drmyhill/images/7/76/Cfs_book_27.pdf
  15. Firestormm

    Firestormm Guest

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    All good folk hail from the North Mary. That's a given (nods to Mum) :)

    My comment was rather intended as sarcasm. I haven't yet read the opinion of Prof. Johnston but I will later today. Some seem to want to see our condition as being rather unique and treated separately from other long term conditions and tend to paint all psychologists and psychiatrists as in need of removal from our care.

    I think what Johnstone is saying, having skimmed it, is that there is too much reliance on this area of medicine - a point on which we are I am sure agreed. She does however - and rightly I think (waits for condemnation) - talk about CBT. The main thrust of the argument though is the increasing lack of other disciplines.

    We've talking about this elsewhere, but there is a strong move - a strong and funded move - to see more and more long term conditions being treated or helped by psychology. If you accept - as I do - that neurology and other medical disciplines e.g. immunology are failing patients (with ME and with every other long term condition), rather than looking to bridge that widening gap in care need; what is happening is that psychology being seen as a sticking plaster.

    I have nothing against psychology. I think it is essential to have this involvement. But it should be only a part of the multi-discipline care that is afforded.

    There is a question I'd like to leave:

    "Do you feel more comforted from a visit to an e.g. immunologist who spends 45 minutes talking to you but doesn't prescribe, and who takes you seriously - or by a psychiatrist who does the same?"

    What I mean to say is (well several things), but to me (and I've seen several disciplines over the years), if even a GP is afforded the time to properly listen and 'consult' with a patient that patient might better be able to manage their condition on a personal level.

    If a patient feels that they have the support of their understanding doctor (or consultant) despite not being afforded any additional prescription (as an example) and has been able to 'offload' and be listened to - then is there a need for as much (not any) psychological involvement?

    Under these circumstances, wouldn't a doctor pick up on any specific psychological/psychiatric issues? Wouldn't they refer? I think they would. I think the pressures being placed on GPs and on Medical consultants are so heavy, that psychologists are indeed being used as sticking plasters.

    However, if the outcome is the same. If quality of life is improved - through only being able to be heard and listened to - then does it make a difference? I think it does.

    Sorry. Banged on rather a bit and I still haven't read Myhill's latest venture :)
  16. maryb

    maryb iherb code TAK122

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    Yes I think in retrospect I praised her only having skimmed it quickly, I can't focus too much on reading properly, totally missed the bit about CBT but well still a plus in my book for her.
  17. anniekim

    anniekim Senior Member

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    In this press release it is written that the mito dysfunction could be from an toxin, either an outside source or a inner source such as a fermenting gut. If I have understood this correctly Dr m believes if you fix the gut as well as address the mito dysfunction recovery is possible. However, is it not the case that people with m,e can address gut problems but there is no way knowing whether this is the primary cause. He does this all fit in with reactivating viruses, low nk cell function, could that be the outside source?

    On an anecdotal level I've heard quite a few people who see Dr M but I don't know of anyone who is fully recovered from her treatment. when Dr m says in this paper that mito dysfunction isn't the only issue in M.e I wasn't clear whether she meant that if you addressed the gut this could be the extra issue? I'd have more faith in her treatment if she says it can help but not fully cure. I'm always a bit mystified by it all.

    I confess too I find her strict stone age diet hard to stick to so perhaps this accounts for some of my reticience about her treatment!

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