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A neuro-immune model of ME/CFS.

Discussion in 'Latest ME/CFS Research' started by asleep, Jun 22, 2012.

  1. Mula

    Mula Senior Member

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    I can assure you that if you read the paper, as I have taken the time to do, all symptoms are covered by this model.
  2. jeffrez

    jeffrez Senior Member

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    They're all covered by mine, too!
  3. Mula

    Mula Senior Member

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    I am dreadfully sorry if you believe you were abducted by extraterrestrials.
  4. Lynne B

    Lynne B Senior Member

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    Mula, I really appreciate all your patient work on this thread, and I also understand some of alex's objections and his desire for the model to explain more. The difficulty for yet others like myself is that we want to do two things when we read these discussions. Ultimately, of course we want to find a cure, which may take years, but in the meantime we want to understand how to improve our condition right now. So when a model is presented here that as you suggest is not for lay people, what we need is an interpreter. Clearly, this is a lot of work for such a person, but I think that is what we are missing here. What do you think? Regards, Lynne B
  5. jeffrez

    jeffrez Senior Member

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    Hmm, I don't recall ever having mentioned abduction. You might have keyed in upon an important subset - or maybe you're just reading explanatory causes into the model the way you appear to be doing with the maes/morris paper. ;-)
  6. alex3619

    alex3619 Senior Member

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    Hi, the aim is to regulate arachidonic acid, which is the quintessential omega-6 fat. So it needs to be decreased, but he also regulated other fats. How our body handles other fats affects how we handle arachidonic acid (according to his model, and in his clinical findings). In my case I think my ideal was about 2.2% by calorie of polunsaturated fat, the same for saturated, and about 6% monounsaturated fat. Having to analyze this on a regular basis is extremely hard for sick patients, even with a computer program that did it for you. Each of these fats was individually titrated to symptoms, using what is called a hill climbing method. There were extensive symptom charts and a few tests that were used, and changes were made in the diet. If the symptoms improved, the direction of change was continued, in small increments. If it got worse, the direction was altered.

    Other factors into play as well. Redox balance is critical, and especially the absolute concentration of reduced glutathione. So antioxidants and even the methylation issues are important, not to mention nitrosative stress. Martinovic tried to account for nitrosative stress, but I never heard him discuss the methylation cycle in the context of our more recent understanding - his work was a decade and a half too soon for that.

    One thing needs to be made very clear though: decreasing omega-6 levels too far will have very severe negative consequences. This is about balance, these fats are essential fats and cannot be eliminated from the diet without drastic consequences.

    There is a problem with hill climbing methods, called false optima. If there is a local condition that is an improvement but not a good one the patient could go there and not improve further. If that happened it was back to the start and do it all over again.

    He never got around to splitting the polyunsaturated fat into omega-6 and -3 in his research that I know of, but this might have made a difference.

    Just a caution: only one other doctor that I know of ever worked on this model, it was not widely replicated. However I have seen long term highly disabled patients improve enough to regularly exercise. Thats a big deal. I think there were a very small number of spontaneous full remissions, but he never figured out why. In his later research he was tying this in with hormonal cycles, but at about that point he got out of research and I do not think it was ever published.

    This is not an approach that most patients can take on their own, it is too complicated and easy to do wrong. In addition if complications arise the patient had to go back to the doctor. Since he no longer does this, none of us have that option.

    Dr Sears' Zone diet aimed at doing something similar, but in this case it was a higher protein and fat diet, with decreased carbs, a very different approach. It can work but not as well, and is also difficult to sustain during relapses as its too much work to buy and prep the food, at least that was my experience.

    Bye, Alex
  7. alex3619

    alex3619 Senior Member

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    Hi Mula, I am a bodel builder by education and experience, and a biochemist. I am very familiar with models. I could write a book on them - indeed, I am writing a book using advanced model analysis amongst other things. One of my PhD supervisors was a world leading analyst who was paid thousands a day for consultation in analysis and model construction (in the 90s). I was aiming to get into bioinformatics but my biochem degree convinced me I had not recovered sufficiently for even part time work. Please do not jump to conclusions.

    On a private research forum I have also seen other models evolve over time, from first thoughts to latest releases. I am sure you have read some of them. I am not permitted to give details based on the rules of that forum, but some of them read this forum and they might like to comment. I have also seen models be abandoned when it was apparent they were not adequate.

    My own models on ME pathophysiology have had several incarnations, several were abandoned, and two are still in limbo awaiting further evidence to justify pursuing them. Recent developments in ME research suggest that with slight modification both of those models are still relevant and important. In time I might get around to doing something with them.

    If you wish to get a better understanding of models, I suggest you read up on systems theory.

    A meta- anything is a higher order construct. The Maes paper is about something that is not specific enough to be a model in my current interpretation. Its about delineating options and possibilities that with further investigation could lead to a model. That in itself is a very good thing, an important early step. As experiments are designed using these ideas the chaff will be winnowed away, extra pieces will be added, and (hopefully) we will have a working model of ME. The other thing that could happen is an incorporation of yet other models, including things like Lerner's model of pathogen persistence in which the "pathogens" are perhaps inactive fragments.

    The classic definition is that a metamodel is a construct of the rules and principles to apply to a model. In this case Maes is defining the boundaries of a model, and describing important options and mechanisms within those boundaries - a model would presumably emerge from within that framework.

    Some of the postulated relevent mechanisms in the Maes paper are specific enough to directly lead to experimentation. A lot of it is very vague though.

    You could instead of calling it a metamodel call it a source model. It is a construct from which specific and detailed models can be constructed with additional effort.

    Bye, Alex
    natasa778 likes this.
  8. barbc56

    barbc56 Senior Member

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    You may have spoken too soon.

    http://www.abduct.com/features/f10.php

    :lol::rofl::lol: :lol::rofl::lol::lol::rofl::lol::lol::rofl::lol:

    My point here is to show what happens when you have a theory and then try to fit the data to make sense of that theory. In science it works the other way.

    This is an important when reading studies and research papers.

    Barb C.:>)
    jeffrez likes this.
  9. jeffrez

    jeffrez Senior Member

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    Hahaha! Omg, that's hilarious! :D
    barbc56 likes this.
  10. Sing

    Sing Senior Member

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    Alex, would you please describe more about the specific diet or dietary policy you understand is helpful according to Dr. Martinovic and what you learned?
    If what you want to say is brief, maybe it could go here in this thread, but probably it would be best to make a new thread on this topic.

    Thanks,
    Sing
  11. justy

    justy Senior Member

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    Thanks again Alex for simplifying things for me - sorry weve gone a bit off topic, but just to say his work sounds very interesting (if not a bit complicated) what a shame Dr Martinovic is no longer in CFS research - it sound slike he was really onto something useful.
    I can appreciate that his approach is not something one could trial at home - it obviously is a very finely balanced diet, needing expert advice and help. I have read up a bit on arachidonic acid yesterday and appear to be expanding my mind all the time these days - hopefully one day all this medical/biology info will actually be useful for something.
    All the best, Justy.
  12. justy

    justy Senior Member

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    Wow! that's some theory. Either we have all been abducted by aliens who are draining our energy or being depressed by the illness has made a sizeable proportion of us believ we have been abducted by aliens. Very amusing.
    On a more serious note, his site, unlike most others does at least have a very credible account of what M.E/CFS is and some discussion of ther latest research - what is the 'new human enzyme' recently discovered in CFS patients but not healthy controls?
    Justy.
  13. alex3619

    alex3619 Senior Member

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    Hi Sing, I do not think the Martinovic diet is an ideal diet. It was great for the time, it suppressed symptoms, but it did not address the causal issue - which we still do not really understand. One of the things I did not mention is that he wanted patients consuming lots of bioflavinoids and other plant based antioxidants. He used to require patients eat a lot of fruit unless they had an intollerance. When I have said this to patients before, I often hear "oh, but I already eat a lot of fruit". In this case their lot was only a before breakfast snack. Fruit was a primary calorie component of the diet, with lots of vegetables too. In this respect its a lot like the Wahls diet, but with more fruit. Every meal, every snack, had one or two pieces of fruit before anything else was consumed. In part this was to assist digestion, as the fruit acids aided this. Seeds and nuts were also present in many cases, and were a big source of the fats in the diet. Meat was limited to limit arachidonic acid intake, something I have since come to disagree with.Its better to eat lean meat in my view, or cold water fish at least, than avoid meat entirely.

    I have been explaining this research because I was asked, not because I think its a good choice in the current world. It might have been if funding could have been obtained and further research done, but that is not the case.

    What is important from the research though is this: modifying redox status and arachidonic acid metabolism can shift, reduce or elimate symtpoms. It can induce improved exercise tolerance. There is something there, and papers which address this issue (such as Maes) interest me.

    When the research turned to omega-3 as a separate topic, largely at my suggestion, we looked at its impact as a medicinal measure. The results were not consistent. There were some benefits, but not reliable ones. This might have been pursued further in time, but it never went that way.

    Bye, Alex

    PS If you can, wash the fruit skin and consume it too. Many fruit skins such as apples contain lots of antioxidants.
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  14. Cort

    Cort Phoenix Rising Founder

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    I don't know what it means. My involvement in that other paper was minimal (really,really :) minimal). I don't know why Dr. Maes is having patients as co-authors rather than other researchers.
  15. Cort

    Cort Phoenix Rising Founder

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    For all his good work the fact that Dr. Maes is dealing with me or him (I think Frank Twisk is another patient as well) as co-authors is not going to go over well in the research community....I love Dr. Maes theories - they make sense to me - and I've heard from another researcher that they appear to be spot on but adding patients as authors is a bit puzzling.

    Whoops as I read further in the thread I see I've gone off thread a bit - my apologies...
  16. Bob

    Bob

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    I think it's a very democratising/egalitarian approach. Established researchers/scientists don't have a monopoly of wisdom, and they evidently don't have all the answers, and patients have a wealth of insight and knowledge between us. Many patients have an academic background, or are able to research/write with an understanding of the academic method, and are more than able to review the literature and to comment. Look at the comments published in the Lancet after the PACE Trial for an example. Tom Kindlon has published a paper, as another example.
    jace and natasa778 like this.
  17. roxie60

    roxie60 Senior Member

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    maybe cause patients dont require remuneration to be motivated and they can speak from first hand experience.
  18. Mark

    Mark Acting CEO

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    If the idea is to recognise significant contributions from patients who have provided ideas or material which has significantly affected the paper, that would seem to be a very fair thing to recognise. Even if they're patients, I think both Cort and Gerwyn have relevant masters degrees, at least, which I think (?) would mean they could legitimately be listed as co-authors on something they contributed to even if they weren't contributing as patients. I don't know whether there are really any hard and fast rules about what level of contribution, and what qualifications, are necessary to be listed on a published paper, but I guess it varies quite a bit. Anyway, I'll bear all this in mind for the research project I'm discussing at the moment...
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  19. Bob

    Bob

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    I wasn't aware that it is necessary to have any specific qualifications, or any association with an academic body, in order to have a paper published. I thought that it was just a case of getting the work past peer-review. Was I wrong in thinking that?
  20. Mula

    Mula Senior Member

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    When a scientist uses the word model they mean a causative explanation for the illness. This would be an alternative description for a scientific hypothesis of causation. Metamodel is incorrect terminology and is an empty phrase. The paper has provided a causative model of MECFS. A model as you should understand needs to explain all observations published on symptoms and biomedical abnormalities and it must be parsimonious and conciliatory.

    A paper which is written for scientists does not explain basic biology, as it is expected that they would already have sufficient understanding of the basics and connections, or the paper would be 30,000 words long. Details are then located within the references, as one would expect, for those who would like to delve further. A biochemist could never understand a model such as this, for it requires knowledge of many different fields. Chemistry and physiology are necessary but not sufficient. It is principally targeted at neuroimmunologists and will have been reviewed by similar scientists.

    Speculative potential models that are not published and certainly those with holes are not considered.
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