A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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There are more things in Heaven and Earth .....

Discussion in 'General Treatment' started by TenuousGrip, Sep 1, 2017.

  1. TenuousGrip

    TenuousGrip Senior Member

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    Quite a few threads have prompted me to chime in, including one on the liver/gall bladder flush, one about a 'proven' treatment/cure for Chronic EBV, one about detoxification, and one about KDM. Among others.

    I have a number of Mayo-diagnosed Cytochrome P450 defects and a Mayo-diagnosed MTHFR defect. Like millions of people I have problems with detoxification of both exogenous (from outside the body) and endogenous (from within the body) substances.

    Which really calls into question the whole "the liver is a perfectly adequate filter" concept.

    It may be for some. It isn't for others.

    I've suffered numerous adverse reactions to prescription meds (and vaccines), each more serious than the last -- the last one nearly fatal (DRESS Syndrome). This has been attributed to my body's defective detox mechanisms, finally diagnosed when I was in my sixth decade, because I pressed and pressed and pressed for answers (beyond 'You just haven't been lucky' (Yes: literally)).

    Our bodies were NOT 'designed' or 'evolved' to deal with the onslaught of chemicals that began merely a blink of an eye ago. Not in evolutionary terms.

    What if I've been on -- literally -- hundreds of courses of almost innumerable prescription meds in my more than 50 years on this planet and my detoxification systems are faulty ? Biochemically, what happens to me ... as compared to a healthy person with normal detoxification mechanisms who has rarely taken a pill ?

    My wife is a Nurse Practitioner. She practices Western medicine.

    I'm not philosophically opposed to Western medicine (at all), and I truly admire my wife and her work.

    She knows that Western medicine doesn't have all the answers.

    She's acutely aware of what you can and cannot say with certainty based on the results of a Randomized Controlled Clinical Trial (RCCT). She knows that sample sizes are the best way we currently have to TRY to account for infinitely variable individual human physiology, but that it still doesn't even come close to doing that.

    She also knows that the US has hundreds of thousands of "iatrogenic" (caused by medical treatment) deaths per year.

    One example of the limitations of the RCCT: nobody can yet say for sure whether the drug in the trial cured or killed specific people. The RCCT only tells you whether the treatment group's results, in aggregate, were better than the placebo group's aggregated results to a degree that's unlikely to be coincidence.

    I think that we need all possible tools available to us.

    I also agree that agendas play a large role in the business of medicine. That's another weakness of the gold standard RCCT: what does, and what does not, get funded and studied.

    In my state, physicians have consistently been fighting to legislate reduced scope-of-practice for Physician Assistants and Nurse Practitioners. They scream and yell about how dangerous it is for these mid-levels, for example, to treat children of less than a certain age.

    "FOR GOD'S SAKE, THINK OF THE CHILDREN !!"

    But there's absolutely zero evidence that NPs and PAs aren't perfectly competent to treat young kids. It's a turf war ... about money.

    On this forum I'm constantly amazed, astounded, and impressed at how far outside of the mainstream so many PR members are going in an effort to regain their health. They're Science Projects With a Sample Size of One, using their own best efforts to synthesize a ton of knowledge, and then taking totally unquantifiable risks by "biohacking" in endless ways.

    But -- happily -- I rarely see anybody chastise, deride, and lecture them.

    Because most of us really don't have any other better options.

    We do need all possible tools available to us.

    The episodic dogmatism (bordering -- or maybe not bordering -- on religious zeal) on this topic (by just a handful of people or so), IMHO, is really not productive, and is my very least favorite part of this otherwise incredible forum.

    There's an old philosophy for people who go to the gym: unless you're awfully sure that what a person is about to do is going to hurt them ... don't correct other people's workout styles. Sometimes I wonder if we shouldn't move toward that kind of philosophy on this site.

    "There are more things in heaven and Earth than are dreamt of in your philosophy" --Shakespeare

    Just one man's opinion. Your mileage may vary. Closed course. Professional driver. Don't try this at home. No animals were harmed during the making of this film. Etc., etc.
     
  2. Mary

    Mary Senior Member

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    @TenuousGrip - Your whole post is very well said! :thumbsup: This quote in particular is hitting home today:

    I'm afraid I'm one of the ones who is generally on the receiving end of why whatever I'm doing is not real, results have not been proven, it's "woo", etc. But the persons doing the criticizing have no solutions to offer other than go see your doctor, who of course can't do anything, and often makes things worse. And the irony of course is that most doctors don't even believe ME/CFS is real, much less know what to do with it. But they're the only ones we are supposed to entrust with our health care?

    And the persons doing the criticizing apparently aren't aware of how demeaning their attitude is: in effect they're saying they are the only ones who have the answers, and if you go outside mainstream medicine, at best you're deluded, and at worst, an idiot. Instead of saying, as we all wish our doctors would, "I don't know. I think it's a crock, but hey, if it's helping you and not hurting you, and you certainly are the one who would know, who am I to tell you what to do or not do?"

    And I have made progress by using myself as a guinea pig with "alternative" (outside of "mainstream") medicine. But no one ever acknowledges this.

    OTOH, I've seen people post countless times about how they have been hurt by mainstream medicine with its innumerable drugs, etc. But no one says, stay away from the doctors! They're dangerous!

    Thanks for your post --
     
    Last edited: Sep 1, 2017
  3. Sushi

    Sushi Senior Member Albuquerque

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    So do I--though not diagnosed by Mayo but by another specialist who tested me. Knowing that certain drugs that are often prescribed for ME/CFS symptoms could literally kill me, has been sobering. I am thankful for this testing (broadly called pharmacogenetic testing).
    Many of us have had serious side-effects from medications prescribed for our ME/CFS symptoms (including me). I now wonder how much genetics and particularly SNPs related to the P450 pathway plays in this.
     
  4. Kina

    Kina

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    The liver isn't a filter at all.

    It certainly doesn't, there is a lot we don't understand about the body and that applies to the whole human race.

    It is fair to point out scientific incongruencies, statements that are false about how the human body works etc. Really, there seems to be a whole lot of dogmatism and religious zeal coming from those who don't want to discuss science versus pseudoscience. Why the split? Why not just have a discussion of facts. Why start a thread to split people even further. There are quite a few problems with alternative therapies eg lack of research. Is there a problem trying to drill down into getting answers. For some, it sadly seems so.
     
  5. Hip

    Hip Senior Member

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    Probably nothing much. Genetic weaknesses (SNPs) in the cytochrome P450 and other metabolism and detoxification enzymes are common, and in the case of taking pharmaceutical drugs, it means that it takes slightly longer for the drug to be metabolized. That in turn means that for a particular dose of a drug, blood levels will be a higher in slow metabolizers, and the drug will remain in the body for a little longer before it is cleared.

    Though detoxification weaknesses can have an impact on how quickly you process and remove toxins from the body, toxins such as organophosphate pesticides (which are broken down by the paraoxonase 1 enzyme made by the gene PON1). People with the TT mutation in the rs662 SNP on the PON1 gene are slower in removing organophosphates from their body, and so in these people, organophosphate exposure is liable to cause more damage (to neurons, etc). You can look up your rs662 SNP on 23andme here.
     
    Last edited: Sep 1, 2017
  6. Hip

    Hip Senior Member

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    I think the issue with the concept of "a detox diet" is that the health benefits it may provide (even if they are just subjective health benefits — ie, you feel better with a clearer mind) may not be purely to do with detoxification.

    In this online discussion, one person astutely suggests that a detox diet "merely calms down the inflammatory and regulatory responses in the body to their usually poor diet. No surprise, they feel better."

    In other words, many of us eat a poor diet containing pro-inflammatory foods, which ramp up bodily inflammation, and inflammation is something which generally makes you feel a bit under the weather. When you switch to a "detox diet", you tend to cut out inflammatory foods, and so that is one factor that may make you feel better.

    And if you are drinking a lot of alcohol, so that you are always in a state of constant hangover, obviously you are going to feel better when you stop drinking during your "detox diet". But that's just because you have stopped drinking the mild toxin known as ethanol.

    Thus the "detox diet" may work for reasons other than just the generally assumed idea that it detoxifies a backlog of toxins from a dissolute lifestyle.

    It does appear that "detox diets" might increase liver detoxification though: this paper says that:
    And a detox diet, if it involves caloric restriction or fasting, will also trigger autophagy (the ordered dismantling and recycling of the components inside cells). This I guess may have some cellular detoxification effects, although I am not aware of any specific examples (examples of toxins that autophagy might help clear from cells). But detoxification aside, autophagy has other health benefits: for example, it can help kill intracellular pathogens (although sometimes autophagy can do the reverse, and promote intracellular pathogens).
     
    Last edited: Sep 1, 2017
  7. alex3619

    alex3619 Senior Member

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    Or sometimes it increases the drug transformation rate. This means drugs might have a much shorter half life and be ineffective. Many detox snps work both ways, increasing or decreasing rates depending on the substance. I vaguely recall a case study when I was at uni, in a chemical plant. Many who worked there were happy and almost immune to problems, but anyone who was the opposite got into trouble very fast.

    This is very dangerous in the case of prodrug conversion to the actual drug. Instead of a slow conversion, or a small percentage converted, you can wind up with most of it converted very fast, which leads to sudden overdose at doses that most people would find barely adequate.
     
  8. alex3619

    alex3619 Senior Member

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    I like the concept of biohacking. I appreciate patients testing on themselves if its done carefully. I have done it myself. Where I have a problem is when something is badly overstated. Supercures, wrong information etc., do need to be challenged. Its not that such claims have to wrong, its that such claims need evidence to back them up.

    I would like to add my Rule 22, what I call the Lemon Rule -

    22. Most treatments for ME are lemons, they don't suit everyone - but you often wont know if it suits you until you suck it and see. If you see a soured look on my face you will know why.
     
  9. Valentijn

    Valentijn WE ARE KINA

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    Except it's the people with C alleles coding for Arginine (R) who were more likely to have the presumed bad reaction to sheep dip. TT was more common in the healthy controls from the area who also used sheep dip but didn't get sick.
     
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  10. sb4

    sb4 Senior Member

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    I see it from both sides. I absolutely think the mainstream scientific wisdom on MANY health related subjects is god awful, and encourage people to post about alternative things they think might work / have found to work. I also think it is very important to be skeptical and ask for reasoning / data behind these ideas.

    What matters most however, from both sides of the argument, is the tone. Don't state that you have a cure for something then provide little evidence/logic then get mad when people don't believe you. Don't ridicule someone who has found something non main stream that helped them by suggesting they are scientifically illiterate, a quack, etc.

    All in all, I think this pretty good when people are civil.
     
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  11. Hip

    Hip Senior Member

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    Not according to Rich Van Konynenburg who in this post said the risk allele is T. Where did you read that the risk allele is C (you didn't mention this in your previous posts on PON1 in other threads)?
     
  12. Valentijn

    Valentijn WE ARE KINA

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    https://www.omim.org/entry/168820#0001
    R = arginine, which corresponds with the C allele.
     
  13. pattismith

    pattismith Senior Member

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    These defect are very common and so are the loosers of the modern lifestyle...

    Roman civilisation poisoned itself with the lead pipelines but we have done far better nowadays!

    Our civilisation poisons ourself and the planet, with eyes wide open upon the ongoing process....
     
    Mary likes this.
  14. Hip

    Hip Senior Member

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    That's very interesting.

    It's peculiar that the findings of your study don't seem to square with the study discussed in this post, which if I understood it correctly, says that the T allele of rs662 corresponded with a reduced ability of the paraoxonase 1 enzyme to metabolize paraoxon (paraoxon is the metabolite of the insecticide parathion).

    So that's a bit of a discrepancy between those studies.



    The full paper of your study is available here. It says that:
    192 = the rs662 SNP

    So could it be that in the case of diazinonoxon (the metabolite of diazinon), the T allele is slower in metabolizing and detoxifying this compound, whereas with paraoxon, the T allele is faster?



    It's important to metabolize diazinonoxon (also called diazoxon) quickly, as diazinonoxon is up to 100 times more toxic than the parent compound diazinon. Ref: 1

    As far as I can work out from this article, in the body diazinon is first converted to diazinonoxon in the liver, and then later the PON1 enzyme in the blood will metabolize and detoxify diazinonoxon.

    So once the liver converts the pesticide diazinon to the more toxic diazinonoxon, that's when the major toxicity starts, and the faster PON1 can metabolize and remove the diazinonoxon, the better it will be in terms of avoiding toxic damage to the body.
     
    Last edited: Sep 2, 2017
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  15. Hip

    Hip Senior Member

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    Is there any evidence to suggest that the plethora of man-made chemicals are generally causing disease in people with genetic weaknesses in detoxification abilities? I know there are specific cases of man-made chemicals being linked to disease, as in the case of organophosphate pesticides discussed above; but specific cases do not imply that all man-made chemicals induce disease.



    For me, Mother Nature is the villain of the piece: she created a very toxic environment for humans to live in, with numerous nasty infectious pathogens causing death and disease everywhere. Most common chronic diseases are linked to infectious pathogens, and some biologists like Paul Ewald argue that the vast majority of chronic diseases will likely turn out to be caused by infectious pathogens, rather than by genetic causes.

    The logic of that argument is explained by Ewald in the following, where he points out that:
     
    Last edited: Sep 2, 2017
  16. alex3619

    alex3619 Senior Member

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    I have not checked anything about this, but this kind of thing is what I was talking about earlier. A change can increase or decrease activity depending on the substrate.
     
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  17. pattismith

    pattismith Senior Member

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    Evidences does exist, not only for pesticids, but also for endocrine dysruptors, solvents ( toxic for nervous contral system and mitochondrias), etc...I whish you will not ask me to quote the numerous studies about it


    My point of view is different. Yes I do agree infectious agents are the triggering factors,
    but contagious infections is the only way mother nature has found to keep under control the demographic evolution of a specie that has no more predator on the planet.
    The more populations are travelling and mixing around the world, the more infectious agents are shared.

    Some infectious agents that are not harmful for a population because of coevolution may produce other effect on another population which immune system differs.
    For example tropheryma whipplei a bacteria that can produce common digestive issue in Africa, can cause to some rare caucasian people the whipple disease that can be fatal if not treated.

    On the other hand, the more populations are weakened by toxic pollutions, the more the immune system will have difficulties to deal with these infectious agents.

    Autism, schizophrenia, allergies are growing among western world....If we agree that infectious agents are involved in it, would the infectious origin be sufficient to explain the boom? Are these infectious agents new ones to concerned populations? I don't think so, and this is why other environmental factors are necessarly involved.
     
    Last edited: Sep 2, 2017
  18. Hip

    Hip Senior Member

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    You are referring to specific cases, and I agree that in these specific cases, the toxic effects of chemicals can increase the risk of certain diseases. For example, organic solvents may increase the risk of autoimmune diseases.

    However, there are over 1 million man-made chemicals, and we are exposed to many thousands of chemicals in our everyday life. But I don't think there is any evidence to show these chemicals are causing disease, outside of the specific cases that we know are linked to disease.



    It's feasible, because the trend to increase urbanization places human being in much closer proximity to each other, so infections that pass by ordinary social contact may have more opportunities to spread in dense urban environments.

    Infectious causes for the global obesity epidemic have been considered: it may be due adenovirus 36. Ref: 1 Of course obesity would not be possible with the abundant availability of food, but nevertheless, a virus may well be the fundamental cause.

    Also, there is one theory that the poliovirus vaccine, by removing wild poliovirus from circulation, allowed other enteroviruses such coxsackievirus B to cause more severe effects. The introduction of the poliovirus vaccine might explain the increase in type 1 diabetes, which is linked to coxsackievirus B.

    Though it's quite feasible also that environmental chemicals might also play a role in diseases on the increase.
     
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  19. pattismith

    pattismith Senior Member

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    :thumbsup:. I don't know about the Coxsackievirus, but infectious agents like Chlamydia and HSV have co-evolved with us for a long time, and if we consider them as potentiel triggering factors of some increasing chronic illnesses, then we will have to think about other environmental cofactors involved
     
  20. alex3619

    alex3619 Senior Member

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    The more one species dominates and has contact, the more pathogens for that species will take advantage of that. Viruses are just opportunists, but we increasingly give them opportunities to exploit. Ditto the other pathogens. Overpopulation is probably more damaging in that respect than most other causes. That includes clustering such as in high rises with recirculating air, dense crowded cities, etc.

    Obesity appears to be multifactorial. Endocrine disrupters are a part of it in all likelihood. So are many other things. Simple solutions do not work well on complex problems. They only work if you can identify a single or a few critical causes.
     

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