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In Brief: Mitochondria and ME

Discussion in 'Phoenix Rising Articles' started by Firestormm, Oct 17, 2013.

  1. peggy-sue

    peggy-sue

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    You might be very interested in the work that is currently being carried out in my home town of Dundee, then!

    Prof. Chim Lang did his MBChB in the same (very small - my boss, an Hons. student, Chim and me) lab as I worked in, way back in the early '80s.
    His project was on trying to discover EDRF. He has had an interest in this area since then, which is how he came to be involved in studying ME now.
    He's working with Jill Belch and Faisel Khan.

    I bumped into him a while ago. He was shocked that he couldn't get funding from the MRC, but had had to get it from charity, he told me there is ongoing inflammation in ME; that it is absolutely real and physical and not remotely psychological.
    That, from a medic who came into the disease and research from an interest outside of it.:thumbsup:

    He knew nothing of the politics.

    Both studies, one in adults, one in children, showing the ongoing inflammation have been published.

    They do infra-red stuff on vasoconstriction in thumbs....
  2. Legendrew

    Legendrew

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    Thanks for the feedback. Good idea for an article too - I did something similar in my first article discussing where rituximab may fit into the current ME research climate, the only trouble with such articles in the sheer amount of work involved researching! It may be something we'll do in the future - that being other writers at phoenix rising or myself. Currently all my effort is going into this series of articles so it won't be anytime soon unfortunately but good suggestion and certainly one that I can see the advantage of!

    I cannot urge anyone enough to contact Firestormm if they have any ideas for articles for Phoenix Rising or if they wish to join the content team!
    aimossy likes this.
  3. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Long before I had any idea that I had ME/CFS, I thought that the 'virus from which I never really recovered' must have messed up my mitochondrial function as that was the only thing I could think of that would reduce both physical and mental function.
    peggy-sue likes this.
  4. stridor

    stridor Senior Member

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    Thank-you for your reply. You have given me a couple of avenues for further reading and contemplation. Last year, I had read that orthostatic intolerance was related to a "measurable change in circulation" to the brain. I exaggerated symptoms and was tested for MS and using ultrasound, they found the CCSVI. I still am not sure whether this is the "measurable change" that was mentioned....but it will do.
    I think that it was Cheney who suggested that most of us have some degree of CCSVI and I was surprised how little this is discussed here on PR. Personally, I think that this could provide a future means of Identifying those with ME from the form of CFS which is on the Major Depressive Disorder continuum.
    I look forward to your future endeavours. brad
  5. justy

    justy Senior Member

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    Hi, thanks for the article - i was really looking forward to this one as i , and many others on this forum have had the Mitochondrial function test done and found it to be useful, especially in convincing others that we are physically ill. Of course the test mainly shows that we are ill, rather than pinpoitning the initial cause, and it is surpirsing how similar the mitochondrial issues are between patients. Given this i was rather surprised how quickly you dismissed the work and research of Myhill et al. Dr Myhill's research work was peer reviewed and published in the same manner as the work of Dr Newton which you appear to hold in higher regard.

    Perhaps you could elaborate on your comments about the research of Myhill et al and explain why an exploration of their work was not a part of your article.

    All the best,
    Justy.
    Radio likes this.
  6. Legendrew

    Legendrew

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    My major complaint with the work or Dr. Myhill et al is simply the lack of specificity with regards to why there is mitochondrial dysfunction. I think her initial finding of abnormally functioning mitochondria is very important and she was likely one of the pioneers in this area, however she seems to have done little in depth work to follow this up. For example she recommends the following for treatment.



    From a personal standpoint, this appears of little to no use if a pathological mechanism is targeted towards or indirectly causing major dysfunction within the mitochondria themselves. Certainly it is helpful that she has conducted further studies outlining the commonality of this symptom/sign however I'm not sure I agree with extrapolating that to eating a stone age diet for example.

    It appears somewhat that she has been treading water in terms of research for some time and I suspect that could be due to the fact that "Dr Myhill’s income arises from treating patients". Of course this is all personal opinion and everyone is free to use their own judgement for all research published, I suspect the reason people latch onto this somewhat strongly is that it shows an observable problem. Unfortunately I cannot promote the research of a doctor who is also recommending a stone-age diet as a potential treatment for ME, I think it either speaks to her own personal misunderstanding of the pathological mechanisms occurring or she is content to offer the treatment at a cost to patients - neither of which instill me with hope and I don't want to convey that through my articles either.

    I think the best question to push science and medicine forward is 'why' and i'm of the opinion that it should be at the root of all research. To me it seems that Dr. Myhill is content with saying there is a dysfunction in the mitochondria and leaving it there whereas Dr. Newton seems to want to make bounds into the field, researching areas that haven't been looked into before - hence why I regard the research of Dr. Newton in higher regard. I'd like to make it clear that i'm not attacking the work of Dr. Myhill here as it's clear she has pioneered the way for mitochondrial issues in ME but i'm always weary when researchers don't follow up promising results.
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  7. justy

    justy Senior Member

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    Legendrew thanks for the clarification of your POV re: Dr Myhill and her work. Unfortunately it seems that you dont have a detailed undertsanding of the position of Dr Myhill on what causes this dysfunction, or the treatments that she uses for her patients. The treatment outline you qouted from in your above post comes from her 'standard for all' package that she believes promotes the bodies ability to heal - she has many patients with varying illnesses and symptoms and M.E/CFS is only one of her patient groups. After testing she then adds other tretaments to the 'standard for all' package, which can include drug tretaments, specific targeted supplements to correct mitochondrial deficiencies, gut programmes, detoxing through FAR suanas etc.

    One of the reasons that she uses diet, supplements etc is beacuse she practices environmental medicine as she believes it is less harmful to the body than bombarding it with further assaults and that much disease stems from chemical and environemntal pollution which added to our genes and perhaps viral infections causes the mitochondria to go slow. She does in fact look for and test her patients for CAUSES of mito problems through translocator protein studies, gene adducts etc that may show various toxins (wether exogenous or endogenous) that are binding to the proteins.

    I'm afraid i do not have a sicence background and so am not able to do the work of Dr Myhill justice. But you can see for yourself that she has a very extensive (perhaps the most extensive) website available for patients to use and that much of her website contains research by other researchers in the field to back up her hypothesis. From my own personal discussions with her i have seen that she is a voracious reader of research on CFS/M.E and will incorporate them into her tretament and investigation plans if she deems them to be useful for the patient. In my experience she is alos only too fully aware of the lack of real helpful, affordable treatments for her aptients and admits that in many cases, currently recovery is not possible but she seeks to address issues where they lay and stop further tissue damage. She also has a lot of experience in treating very ill patients with MCS/ME and she is more than aware that many patients can tolerate little if any treatments - which is why she advocates the resting, pacing, diet, supplement approach to try and get a very sick population well enough to tolerate treatments such as detoxing, antivirals or in my case just the supplements i needed to stop further damage.

    I npotice you mention her paying patients and yes i agree that she may have not been able to carry out further research due to the enormous amount of time she gives to her patients both in appointment time (physical or by phone) andin keeping her webiste up to date and in feilding the thousands of enquires she receives from patients and in ordering tests and writing reports for non patients which i am not aeware of any other M.E/CFS specialist doing. She also runs an office of extremely dedicated staff (and has to pay them too!) As well as spending vast amounts of time and money fending off the GMC at every corner.

    All the best,
    Justy.
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  8. justy

    justy Senior Member

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    Sorry i forgot to add that you cannot compare Dr Newton with Dr Myhill. Dr Newton is primarily a researcher whilst Dr Myhill is primarily a practicing GP. It is a bit like comapring apples and pears; they are both fruit but not the same fruit.

    Justy
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  9. Legendrew

    Legendrew

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    Indeed you can't however I set out to outline the ongoing research and for this reason I didn't include much about Dr. Myhill as she isn't an ongoing active researcher as you mention. I can see you clearly hold her in high regard as a doctor and i'm sure many share the same feelings - certainly it sounds like she is quite a compassionate doctor who clearly tries her best to help patients for whom there is little other options. I simply set out to outline the ongoing research and it's a little disappointing that she cannot pursue further her personal opinions and hypotheses.
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  10. peggy-sue

    peggy-sue

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    Her hands are tied by issues with the GMC, she does not have huge research facilities.

    If she wants to continue to help people, she has to stay within the rules of the establishment - and that is trying to silence her at every opportunity.

    I don't agree with some of her ideas, but she does think "outside the box" - or she wouldn't be taking ME seriously.

    I've had more practical, good help from reading her website than from anywhere else.
    justy likes this.
  11. WNM

    WNM

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    Regarding Dr Myhill.

    Myhill, Booth and McLaren-Howard have produced 3 papers on mitochondrial dysfunction in ME/CFS. Dr Myhill herself an active doctor practising environmental medicine and major ME/CFS advocate; as nicely expressed by Justy. However Dr McLaren-Howard of acumen lab is the scientist behind the 3 Myhill papers. I think he may have gone further than any other to try and understand what is causing the mitochondrial dysfunction in ME/CFS. Within the mitochondria he has looked at factors such as physical characteristics, functional ATP resynthesis, oxidative stress (MDA levels), TL protein in/out function, toxic gene adducts, cardiolipin synthesis, membrane phoschol/ethano balance and pH amongst others. However some of these findings have not yet been published. Also their testing is still limited to neutrophil mitochondria; the role of neutrophil mitochondria in energy metabolism is slightly controversial (http://www.translational-medicine.com/content/8/1/93/comments). They have also considered basic linkage to systemic factors such as cofactor deficiencies and cell-free DNA. However their research doesn't yet link to the wider ME/CFS pathophysiology such as immunological markers in blood, autonomic function, etc. In this regard they perhaps have a slight environmental medicine bias and hence less interest in all things immunologic or cell signaling orientated.

    My opinions only. Interesting topic for sure.
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  12. peggy-sue

    peggy-sue

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    I do agree, regarding the emphasis on environmental bias. That's what I'm not so sure about.

    And "sleep hygeine". That is simply impossible for me. :alien:

    I can't even translate or modify it into something managable at different more suitable times.
  13. Esther12

    Esther12 Senior Member

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    Thanks for the article and discussion Legendrew

    Also, been meaning to mention that I'm a fan of the minish cap avatar - loved that game.
    Legendrew likes this.
  14. Legendrew

    Legendrew

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    No problem - I always like to engage in discussion following these articles as it brings about points that I myself may have not even considered and that's what it's all about really. I've always been a fan of zelda games, I think Wind Waker is my favorite but minish cap is certainly a good one and I liked the style of the artwork best given that minish cap appeared to introduce toon link for the first time.
    Esther12 likes this.
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Here is one of the team's recent papers.

    Like some others, I very much appreciate the natural approach taken by some ME specialists, but there looks to be some good science there too. I don't necessarily agree with all of it, but it's a damned sight better than anything I have been offered on the NHS!

    As a scientist myself, I believe that there are many ways to treat illness other than the reductionist, side-effect-ridden drugs that tend to be thrown at illnesses as a first rather than last resort.

    Most illness in the developed world is caused by lifestyle, not least the unhealthy diet that has become the norm over the past few decades.

    Let food be your medicine...

    Thanks for the articles though, @Legendrew. You are working very hard lately! :)
    peggy-sue likes this.
  16. Legendrew

    Legendrew

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    I don't think that diet is to be used in the place of conventional medicine but I certainly think it helps in conjunction with it! I for one have cut out all caffeine and carbonated/diet drinks and feel better for it - I like herbal teas anyway so it hasn't really affected me whatsoever. Given the lack of help with ME from the NHS though diet is a simple way to try and help yourself and it's always worth a try, if only to feel that you're doing something.

    Glad you like the articles and appreciate the effort I've put into them! I'm having a little break now for a few days at the least and likely a week. I've been experiencing a downturn of late - feeling very jittery with tremors, stomach cramps/IBS, nausea, glassy eyes and ocular headaches - none of which were likely helped by having to get a chipped tooth filled a few days ago and the local anesthetic that was used therein.

    I've been referred to an endocrinologist in November as they believe I may have hyperparathyroid issues or perhaps even Graves disease and not ME - they seem pretty convinced that i'm having endocrine problems at the very least so i'm happy to go with it and see what they find - already raised PTH, low Vitamin D and raised ALT have been found so clearly something is not right. I believe next week is IOM week with a few articles on the subject so the article on the nervous system will be November I believe.
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  17. peggy-sue

    peggy-sue

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    Time for some aggressive positive inaction, I think. Thank-you for all your hard work. :love:
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  18. rosie26

    rosie26 Senior Member

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    Concentrate on resting Andrew. x The lie down kind.
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    We will have to differ on whether a natural approach can substitute for an unnatural one. People were cured of illnesses long before 'conventional' medicine came along, and many still are when they can resist the pressure to go down the pharmaceutical route before trying to help themselves. I think you're quite early in your (informal?) study of medical science, and it is very important to keep an open mind, especially at such an early stage. All-too-many scientists lose their open-mindedness later on, when they have invested so much time in a particular line of research and theory that they fear losing respect and status by admitting that they were wrong, but it is essential to do so, as it is how science progresses.

    As a medical scientist I assure you that the approach I am taking is very far from being
    I spent months studying scientific papers, using the skills I gained from ten years undergraduate and post-graduate study to analyse, make connections, check, double-check, triple-check (etc.) and then take the plunge.

    Results: dramatic improvements in symptoms that doctors have failed to alleviate with a range of pharmaceuticals for decades, e.g. anxiety levels, sleep, gut function, sinuses and dermatitis, plus loss of unwanted fat and gain in muscle. I have lost the excessive hunger followed by nausea when I don't eat very frequently, because my blood glucose seems to be much more stable. I have lost the severe generalised dental pain, and stopped losing fillings and pieces of tooth, which I believe was due to mineral deficiency. All this through a change of diet and addition of certain supplements. I am not on any medication for ME, and never have been - and do not want to be, as drugs so often have side-effects which are worse than the original problem. I do not eschew drugs completely (and never have), and use them carefully for other problems.

    Maybe you could put aside your doubts, at least for a while, and try a leaky-gut diet? What have you got to lose?

    Also, if you haven't yet read the paper I linked to, why not do so? I'm sure many of us would like to hear your comments on it.
    WNM likes this.
  20. WNM

    WNM

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    I agree. The role of diet, sleep, exercise and psychology in chronic illness is massively underestimated. These are the foundations of health. Unfortunately the establishment of the current reductionistic pharmacological paradigm in medicine and society has biased and flooded the research literature. I think diet is a particularly complex and changeable factor. It always amazes me how those with a scientific interest can so effortlessly disregard such a deep and complex topic, especially considering your body is constructed from what you eat and your microbiome greatly defined by it!

    A random selection of free and interesting papers to inspire healthy lifestyle:

    https://www.ibp.ucla.edu/research/GomezPinilla/publications/nrn2421.pdf
    http://www.ncbi.nlm.nih.gov/pubmed/23690582

    http://www.mdpi.com/2072-6643/4/8/1095/pdf
    http://www.ncbi.nlm.nih.gov/pubmed/23305038
    http://www.plosone.org/article/info:doi/10.1371/journal.pone.0053867

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2917728/?tool=pmcentrez&rendertype=abstract
    http://www.nih.gov/news/health/oct2013/ninds-17.htm

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3160470/?report=classic
    http://www.frontiersin.org/Dementia/10.3389/fneur.2011.00028/abstract
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3629142/
    Last edited: Oct 30, 2013
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