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All plausible causes of ME

Discussion in 'General ME/CFS News' started by redo, Feb 22, 2013.

  1. redo

    redo Senior Member

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    Yes, exactly! And the thing which lurks inside us, if the Mella/Fluge study holds true, must be able to cause autoimmunity/autoinflammation once it's been triggered.
  2. SickOfSickness

    SickOfSickness Senior Member

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    Autism is somehow related. In people with ME/CFS you see family histories of autism, Asperger's, ADHD, fibromyalgia, prostate cancer, leukemia, lymphoma, bipolar disorder and other neuropsychiatric problems, MS, ATLS, Alzheimer's, Parkinson's, IBS, Crohn's, UC, etc.

    I think it's widely accepted that autism is a genetic thing, but some researchers suspect autism is not, and that it's more like an infection that could be reversed or cured. I believe that all of those illnesses have genetic predispositions but are activated by things we get infected with, which are all around us, so it's hard to avoid getting infected by them. A healthy person could avoid getting infected, but if you run into an infectious agent while you have the flu, for example, your immune system is overwhelmed, or if your body has gotten overloaded with mercury or toxins.

    I have a lot to say about women versus men:

    Don't women have some very clear immune system differences than men, since their bodies are made to carry a baby which is "foreign" to the body? I think that's the main reason why women get ME/CFS more.

    In some other illnesses where women are more affected, they say it's because the higher testosterone levels in men are protective. I think that's a factor for ME/CFS too. There are also other clear hormonal differences between men and women (progesterone and others).

    I also suspect that women are more likely to get infected if their body was stressed due to a pregnancy in the past few years. During the pregnancy their body will manufacture extra good hormones to keep them going, but I think most women will have postpartum depression because their body is fatigued from what it's gone through. Then add on top of that, they are waking frequently to care for their new baby.

    And I suspect that women have less frequent orgasms than men in general and that is a small factor too. Orgasm triggers lots of hormonal and neurotransmitter changes and I believe it helps the immune system and other body systems.

    Women are more likely to have eating disorders or go on crazy diets. I think the typical woman watches her fat intake more than a typical man, and this means their body has less resources when an infection comes around. I know there are many exceptions but I think this is a real factor for many women.

    I hate to say it, please don't take this the wrong way, but I think studies prove that women have more trouble with emotional stress too. I don't mean that women are weaker necessarily but they handle things differently because they were taught that or maybe for biological/hormonal reasons. I suspect that women are under a lot of pressures than men don't have. (Not to say that men have it easier, but their expectations are more physical or mental than emotional.) I won't get into the details but I think anyone who is going through emotional stress has a weaker immune system for that time, and some time after.

    I also suspect that men are more likely to use alcohol and drugs more often. I am not talking about alcoholism. I mean in moderation. I personally believe alcohol and most drugs are protective against some kinds of infections.

    In addition, what has been proven in the medical system. Women seek help, but it takes them years longer to get it, than the men who seek help. I think some of those men get helped quickly enough that they can overcome the infections.
    merylg likes this.
  3. SickOfSickness

    SickOfSickness Senior Member

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    I think this is undeniably true.

    I think epigenetics are the main reason. I don't understand them well, but I think they mean that the father's and mother's current state of health gets passed onto the child. Which leads to the child not just getting sick, but getting sick earlier than the parent(s). That is called Anticipation http://en.wikipedia.org/wiki/Anticipation_(genetics) Then they grow up and their child gets sicker sooner.

    And usually each generation has multiple children, so one may have ME/CFS and the other has autism. Or one might seem healthy but then when they are older they get prostate cancer or another cancer or neurodegenerative disease. Not enough researchers are considering the link between these illnesses because they happen so far apart, some like Parkinson's are in senior years of life whereas some like autism are in the early years of life. I am not so sure they are directly linked, but it seems there are some kind of genetic predispositions they have in common because of family histories.

    The secondary reason is all of the pollutants and chemicals we are exposed to now. Drinking water, air, chemicals in our produce, hormones given to the animals we eat or get milk from, chemicals in our toiletries, water we bathe in, etc.
    beaker likes this.
  4. redo

    redo Senior Member

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    I am curious to know how many of the hypothesis in this thread that fits with the list of things which must fit the puzzle (first post here). I think one of the most important things we do, is to gather info about what a hypothesis of ME must seek to explain. That way we could more easily both rule out mechanisms, as well as getting stronger indications on other mechanisms.
  5. alex3619

    alex3619 Senior Member

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    Hi redo, my use of the word trigger with LPS is misleading. I think LPS might perpetuate ME as one of the driving forces (though probably not the only one). It will constantly damage the immune and liver function and is a known inducer of TNFalpha when our body reacts to it. I am still looking into this. Some of this is not just from LPS alone, but what it induces as secondary and tertiary changes in the biochemisty.
  6. alex3619

    alex3619 Senior Member

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    I think this is a very good question. Psychobabble poses that its a disease of the age - its trendy. This is a nonsense. In many models of ME there are many layers of failure. This goes from population dynamics and environment, all the way down to nutrition.

    I think a factor may be the use of folic acid (the drug modified form of methyl folate) as a mandatory food supplement and in multivitamins, not to mention pregnant women being dosed with it. I might blog on that at some point, but much of it has been discussed in the methylation sections.

    We also live in an age in which there are more chemicals with unknown health effects, particularly in combination with each other, than at any other point in history. However some of the more noxious ones have been banned, and that might have a positive impact in the future. I include plastic outgassing here. The rise in use of plactics may have unusual consequences that we are not fully aware of.

    On population dynamics, we have more people with greater ease of travel than ever before. Some pathogens spread much more easily now, despite modern hygeine. Various toxins are so omnipresent that we cannot avoid them, even at the poles.

    We vaccinate people, systematically. I do not think this generally does damage, but even so it has a consequence that is often ignored. Most vaccines drive people to a Th2 immune response. This, I think, is a risk factor for ME. Hyperstimulation of the immune system with adjuvants might also risk autoimmune issues. The modern practice of rapid immunization with multiple vaccines might also contribute to this.

    Our foods are generally containing less and less trace minerals, and less specific nutritional factors like polyphenols. We have no idea what this does to us. Further, as the pateurization temperature in milk went up, its ability to induce glutathione synthesis declined, and from 1988 or so the benefit to glutathione status from drinking milk has been zero.

    I think lots of things might explain this recent historical increase. I also wonder at how many get sick, or got sick, and were kicked to the curb. Ignoring the sick is a time honored tradition.

    SickOfSickness, I think epigenetics might be important. Epigenetic mechanisms are ways we adapt to a changing environment with intergenerational effects. We do not really understand this yet though, research is still in its very early days.

    So the cause/s of ME, whatever they are, are in an environment of multiple risk factors that we do not even know how to properly assess.
    leela and merylg like this.
  7. xchocoholic

    xchocoholic Senior Member

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    Sorry I didn't have time to read all of this but here are two more known possible causes ... tc ... x

    http://articles.mercola.com/sites/a...the-Plague-Due-to-FDAs-Oversight-Failure.aspx

    http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/
  8. WillowJ

    WillowJ Senior Member

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    And this would explain sudden-onset OI, right? I think your theory is intriguing.
    ahimsa and Valentijn like this.
  9. alex3619

    alex3619 Senior Member

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    WillowJ , I think enteroviral infection could indeed explain OI, but its only an hypothesis at this point. It would take a biopsy to begin finding out - of blood vessels not muscle, then the muscle could be separated. I would not be keen on doing this on a living donor, it could cause too much damage. A deceased donor on the other hand could provide the evidence to confirm or refute this hypothesis.

    I think the reason that most do not get ME though most of the population have been infected by herpes or enteroviruses at some point is due to many layers of risk and protection factors. They have to substantially fail at all levels.

    While I state that enteroviral infection is part of my leading hypothesis, many other hypotheses are not yet eliminated as candidates. They all have to be considered. Further it would not suprise me if ME were due to some as yet unidentified problem ... nobody knows just yet.

    What I suspect might happen with a spreading enteroviral infection of the muscles surrounding blood vessels, is that at first the brain can compensate. Then the brain becomes stressed trying to compensate. Then it fails. Similar failures might occur in the physiology, I do not know enough about that to discuss it much though. Its too speculative at this point.
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  10. WillowJ

    WillowJ Senior Member

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    maybe endocrine disruptors.

    It's difficult for me to think diet plays a major role becuase we have people with all kinds of pre-illness diets. Of course, one's parents and grandparents' diets relate to one's epigenetics. Still, for me personally it's unlikely poor diet plays a major role, unless it's related to TVP (we had that sometimes because it was cheap, but we also had whole grass-fed beef, which, remarkably, we could also get at a good price).
  11. WillowJ

    WillowJ Senior Member

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    thanks, Alex

    now I'm confused whether this explains sudden onset of OI?
  12. redo

    redo Senior Member

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    I totally agree.

    Thank you for that. I'd appreciate it if you (and others here) could join in the brainstorming for adding to the list of "what a ME theory must seek to explain". I think it's very useful also for excluding various etiological explanations, such as the "it's all in the head" stuff.
  13. redo

    redo Senior Member

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    Thank you for your input Willow. First, it's important to say that I am deeply skeptical towards anything that smells of alternative medicine, and I not looking at this from some kind of 'new age' angle.

    Here's my thoughts on how diet might play a role: Mankind is over 200.000 years old, and some 10.000 years ago we changed from being hunter-gatherers (diet rich with meat, containing protein and fat) to building agricultural societies (diet rich with slow carbs). In the last couple of 100 years, we've had a new radical change in diet, and what we eat now are lots of sugar and quick carbs.

    [​IMG]

    Despite it being relatively few bacteria in the mouth, we know all to well that happens if we feed them with the wrong things (a modern diet). If we do that, then we get cavities. In the early stone age, cavities wasn't a problem at all. What I am speculating in, is that since it's known that the gut have 10 times more cells than in the whole human body (!), we're bound to get problems when we feed those bacteria with a radically changed diet. I don't think it stops with diabetes...

    Some people think they're living on a paleolithic diet, but in fact they're eating vegetables and fruits that are much sweeter than it was back in those times. I think it would be very interesting to see the prevalence of the great medical mystery illnesses (MS, ALS, Parkinson's, ME etc) in societies that are living like the paleolithic ones (although that's hard to find, since in most of the 3rd world, they eat both grains and rice).

    I don't think changing the diet once we're sick would make such a difference - and I don't think a "modern diet" is causing any of these conditions by itself. I think it's somewhat of a precondition to getting such illnesses. And if one never have had a modern diet (which by my definition is far less than 1 % of the population), then I think the chances for getting such illness are much lower.
  14. Marlène

    Marlène Senior Member

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    I'm convinced it has to do something with a (entero)virus in the stomach or upper-gut. My youngest child (8) has exactly the same symptoms in a "light" version.
    A few weeks ago he came down with a strange kind of stomach flu and he said he was going to die. In just 4 hours he lost consciousness every 30 minutes. His temperature dropped dramatically and a doctor had to give him an injection.

    He had exactly the same symptoms as when I became sick during his pregnancy. I had his stool checked right away but they found nothing.
    Yesterday those symptoms hit me too again, out of the blue. Huge stomach pain, the feeling as if electricity disappears out of your body and brain, an urgent need to lie down, ... It is still there, hiding in my body. Whatever it is, it triggers all dormant bacteria and viruses in the body by lowering the immune system.
    merylg likes this.
  15. WillowJ

    WillowJ Senior Member

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    I am not sure endocrine disrutpors is alternative? I cited NIH. However, it was only a suggestion, not a fleshed-out hypothesis.

    My point about diet is that generally, yes, people who live in the West typically as a group eat as you described but not everyone. Some people with ME fall into the groups who, before they were ill, already ate counter to mainstream. It's for that reason I find diet difficult to blame (even as a precondition), because of the people who don't fit the pattern of not eating much meat/fat and eating lots of simple carbs and sugar.
  16. WillowJ

    WillowJ Senior Member

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    my sister is having almost these same symptoms

    sorry you are your child are not well
  17. Waverunner

    Waverunner Senior Member

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    Many good points were made in this thread and regarding brainstorming a great job was done, but in the end we have to ask ourselves, how to proceed from here. In my eyes there are only two things we can do, diagnose and treat. All this theory has to be put to a test, otherwise it is worthless. MeSci pointed towards an increased intestinal permeability. This is a very nice theory and it can easily be proofed or falsified. There is the lactulose-mannitol-test, which can diagnose a leaky gut. Several PWCs should run it and tell us their results (I called two commercial laboratories yesterday but both removed the test from their offerings because of low demand).

    Regarding viruses we have two huge problems. One is, that we lack highly sensitive and specific tests. The other is, that we lack treatment. The first thing I would do, if I suspect a strong bacterial infection but don't have a test, is to buy antibiotics and see if they work. In the case of viruses, this approach doesn't work because we don't have antiviral medication for most viruses. So here we are, no good test and no good treatment.

    The same is true for autoimmune disease. I would beg all of you, to proof me wrong and point us towards a new study or something that solves CFS once and for all, but if you look at the last 50 years, very little has changed for PWCs. We didn't have any breakthrough and there is no light at the end of the tunnel. I do hope, that genetic sequencing and personalized medicine will help us, but we need more time before they become available.
  18. redo

    redo Senior Member

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    Ooh. That line wasn't meant as a critique of your post. Reason I put it in is that many people reading would get "red lights flashing" when they see the word "diet" - since there's so much totally alternative stuff going on in that field. Often without a shred of reasoning behind it. So, that was not meant to be related to your post.

    I described three different types of diet:
    1) A real paleolithic diet, which probably far less than 1 % follow, and even less than that have eaten all their life.
    2) A diet where grain, rice, milk, potatoes etc have been or is being consumed. But never anything rich in sugar.
    3) A diet relatively rich with sugar, which most people consume.

    My hypothesis is that the chances of developing western illnesses such as MS and the likes increase very, verymuch when going from group 1 to group 2, and some more when going from group 2 to group 3.

    When looking at what can happen in the mouth when the wrong bacteria dominate (because of a modern diet), I think it would at best be naive (from the scientific community) to assume that we wouldn't get much problems further down in the gastrointestinal tract, when it's after all there where the most bacteria live.
    _June and WillowJ like this.
  19. redo

    redo Senior Member

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    I'd appreciate it you could come up with anything else to add to the "list of four". And when it comes to those already stated, both critique and support are welcome.

    As I wrote in the first post, in early March I'll be in dialogue with someone who's got lots funds to spend, which can used on ME research - but the research has to be done on blood (research samples are being taken for another purpose, but it's possible to run more tests in the same go). The research tools available are PCR techniques made for searching for unknown pathogens.

    When millions of people across the world are sick with ME, and patients are more than willing to try something instead of doing nothing, such studies should have been performed years ago. There is one recent study though, which showed that, among others, CFS patients improved dramatically (but wasn't cured). It's from Donta et al. and was published last autumn. In post #12 and #17 in that thread, I argue why it's highly relevant for ME/CFS patients. The scientist performing the study said that those with CFS experienced an equally good response as those with only CLD. I think this study alone should be enough to warrant controlled pilot studies, which in turn could lead to large controlled studies.
  20. Waverunner

    Waverunner Senior Member

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    If I had the possibility to run a study, I would do two things.

    1) Run all Nanosphere tests for infection on all participants. These tests are state of the start, highly sensitive, specific cheap and cover a whole load of possible infections, ranging from bacteria to viruses. Since you said, that only PCR is available I would focus on enterovirus infection.

    http://www.nanosphere.us/page/infectious-diseases

    2) Run a Lactulose-Mannitol-Test on every participant to proof or falsify the leaky gut thesis (not possible through blood).

    I completely agree with you, that we lack action regarding treatment. As I already pointed out, the evidence based medicine leads to high entry barriers for new companies and keeps many compounds from entering the market because no-one can pay for phase 1-3 trials. After a drug is declared non-toxic, every patient should have the possibility to buy and pay for the compound himself. The patient himself has to have the possibility to find out for himself, if a drug works or not. Otherwise you are stuck with the current system, where only very little numbers of drugs get approved and the choice of drugs is very low.

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