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ME/CFS: In Free Fall Through the Looking Glass
Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...
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Adrenal Fatigue: A Possible Element of ME/CFS?

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 2, 2012.

  1. HowToEscape?

    HowToEscape? Senior Member

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    "According to Dr. Joseph Mercola, as many as 80% of American adults may suffer from some degree of adrenal fatigue at some point in their lives."

    One should regard anything from Mercola with great caution, or better yet spend your energy elsewhere.

    Mercola is famous for
    i) combining medical knowledge with quackery ("adrenal fatigue", as discussed in the first post).
    ii) campaigning against medicine, except his "special" version
    iii) having a practice directed to patients with high disposable income offering expensive water (homeopathy), chiropractic (pt with a side possible spine damage), "emotional freedom technique" and digestive enzymes for pets.
    iv) promoting his brand of cure-all herbs and supplements, which are good for everything you might imagine ails you*
    Far below, in thinner type, one sees where the asterisk leads: *"This product is not intended to diagnose, treat, cure or prevent any disease."

    What kind of doc has a website with branded cure-everything products and a disclaimer?
    What kind of doc has an FDA order to stop making false and deceptive statements?
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  2. Jody

    Jody Senior Member

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    HowToEscape?

    I can't speak to your concerns about Dr. Mercola. I just know that I have read things in his articles that I have tried personally that made a difference for me.

    Mainstream medicine and mainstream news did not carry that information until a few years later. I'm glad I didn't have to wait for that. I started using vitamin D a few years ago for instance, because of something I read only in one of his articles, and several of my most severe symptoms lifted because of this.

    Other things are still not supported by conventional medicine, but they work for me and that's what matters most to me.

    I have benefitted from chiropractic, finding relief from swelling and pain in arms and shoulders and knees after getting no help anywhere else. Chiropractic got me through a very bad winter last year, returning the use of both arms and hands to me.

    A good friend of mine has experienced significant improvement in physical symptoms of ME/CFS from using EFT.

    As with so many things related to ME/CFS, not everything is going to work for all of us. But when something works, it's worth talking about and sharing with others in case they might also benefit.
  3. HowToEscape?

    HowToEscape? Senior Member

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    -Jody

    It's frustrating. A standard MD is often not only useless but harmful for us, so we look elsewhere. There's an entire industry of fake cure-all medicine targeted at people who conventional medicine can't help. So we can end up at slightly out-of-mainstream practitioners who can actually help us or con artists who are quite adept at their art. Not a great situation for folks with a disease which attacks the CNS and curtails cognitive ability.

    There are also herbs and "supplements" (drugs), which work for some people some of the time, if only we happen on the right one before too many mishaps. I agree that among these substances some are going to help us; I despise the "miracle cure" push, which amounts to "buy more of my magic pills, you desperate fool".

    Vitamin D deficiency does seem to be common with CF/ME folk - mine was low, which makes sense as I am forced to spend too much time indoors. I also used a chiropractor for a while, but now I'm going with massage, perhaps PT and if I recover a bit then Pilates.

    "As with so many things related to ME/CFS, not everything is going to work for all of us. But when something works, it’s worth talking about and sharing with others in case they might also benefit."

    Agreed, we have no other options. But this is can be misleading, as the disease ebbs and flows.
    Example: After resisting for some time, I tried an OTC supplement, SAM-e, at the suggestion of a local CFID group member. The results were dramatic, and I posted to that effect on the group message board. A few months later the effect seems to have disappeared. SAM-e is biologically active, it's a real drug not magic dust, but I can't tell if it's any real help.

    Oddly, I've found the same pattern with some prescriptions and vitamins. My GP theorizes that the body is reacting to an unfamiliar substance in a way that makes it a stimulant. Sort of like a fever.
  4. Jody

    Jody Senior Member

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    HowToEscape?

    Yeah, it is really frustrating. We are stuck having to find our own paths. I think that means we have to consider everything, even if it's from a source that others don't find credible. Mercola was one of the only places I was hearing about omega-3s way back when. Then my naturopath suggested them. I have found in the last 5 yrs that when I take them my pain level is way down and my brain works better and my mood is less funky. It's all pretty experiential and anecdotal but it's working for me so I lucked out, you know?

    That pattern you mentioned of something working for awhile and then quitting is something I remember Cort talking about a few years ago. It used to happen to him all the time. There's a thread somewhere about that. I don't know where or under which topic though.:D

    I seem to recall having read something about this type of thing in a research article, again from a few years ago. If that memory returns to my cfs brain, I will post it here.
  5. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Is that not to seriously overstate the position ? Is it not more accurate to say about solipsistic anecdotes: "that I have tried personally .. which appeared to make a ... difference for me ? To do otherwise is to fall into the, "correlation implies causation" fallacy. None of us can ever be sure that our subjective experience of the illness is not affected by our expectations (placebo effect), nor that temporary improvement may spontaneously occur, nor that unconsidered or unrecognised changes in diet, environmental characterisitics or other 'inputs' are material to any improvements in function or sense of well being.

    Of course from the perspective of the individual, to keep doing what is coincident with any improvement, makes sense, but extrapolating any broader meaning, or applicability to others will always be highly speculatative.

    IVI
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  6. Jody

    Jody Senior Member

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    In Vitro Infidelium

    I take your point. I could not offer proof that these things are reasons for some of my improvement. Over a period of many years it certainly looks that way to me.
  7. Mark

    Mark Acting CEO

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    In general, I think any reasonable person must accept and be aware of these points. You're right that a great deal of caution should be applied to such observations. But I don't think those principles mean that individual observations should be completely discarded and considered inadmissable evidence either. I don't think those cautions should prevent us from (cautiously and sceptically) experimenting on an individual basis and forming opinions based on our own experiences. Especially in situations where scientific evidence is completely absent, or can't be trusted to be unbiased, this can actually be the most scientific option available to us.

    The measures that I have taken - and continue to take - are quite different to those discussed in this article, but to give just one example: I was informed by Biolabs that I had a number of sensitivities, including sensitivity to a family of chemicals found in pretty much all washing up liquids. I was very sceptical indeed about the tests, because my GP didn't trust them and I could tell they were not accepted by the NHS. And I had never stepped into the realm of medicine outside the mainstream before. But I had to try something, and these were the only vaguely credible sources of help and advice I was being offered, so I decided to experiment. I obtained some eco washing up liquid and compared my experience with that. I had already noticed that whenever I did the washing up I got a kind of burning pain in a particular area of my back (below the left shoulder blade). It was so painful that I was hopping around while washing up, and I had to do it in short bursts, for as long as I could bear. I had been experiencing that for a few years, whenever I washed up. I had assumed that was down to difficulty standing and leaning forward, or perhaps some toxin (maybe mold?) in that particular location. But the first time I tried the eco liquid, I didn't have that experience. For the first time in years, I was able to wash up without pain.

    But that wasn't good enough for me to be confident that what I had observed was real. There could have been a psychological effect: I was very mindful of that. Because I was hoping for just that result, perhaps I might have deceived myself. Or perhaps it was a one-off. So I decided to alternate between the two, and see what I experienced. The difference was very stark and unmistakeable. Hands in conventional washing up liquid -> pain. Hands in eco liquid -> no problem.

    But that still wasn't good enough for me. I could still be deceiving myself. So I decanted the liquids into two separate identical containers, and labelled them on the back where I couldn't see, and shuffled them blind each time I used them. I was still easily able to tell the difference, from my experience of the pain I felt when washing up, and I was able to predict and confirm which one I'd just been using.

    And even then, I was still aware that this was not a test meeting scientific standards. I would need a second person to mix up and blind the samples for me, and monitor what I was experiencing. I didn't consider this a rigorous scientific test. But I was living alone and didn't have access to anyone who could help in this way. So I just stuck with the eco liquid, since it couldn't really hurt to make this choice.

    That was several years ago, and I still use the eco liquid. It's actually much better value for money anyway - a big vat of it (refilled from a tank in the shop) lasts me nearly a year, and it cleans very effectively. And that particular back pain is now a thing of the past. I used to get it from a few other triggers as well (all of them linked to similar synthetic chemicals), but I've eliminated those triggers too, in a similarly slow, sceptical and questioning fashion. It's been a slow and gradual process over many years, with occasional recurrences. Last year I felt a strong recurrence of the pain (which shocked me because I'd completely forgotten about it) when I was holding a glossy book in a bookstore, which began to subside when I put the book back on the shelf, but that's the only time I've felt that particular pain in the last couple of years.

    I'm still fairly tentative in my conclusions. I'm not sure exactly what's going on here. I know it's not just back pain because I've had years of other treatments for back pain, and still do, and this is quite different. But what it really is, I don't know. With other, similar pains, I've sometimes misunderstood the trigger. For example, I used to think that perfumes were a major problem, but now I realise that many other strong smells can also make me feel dizzy, nauseous and give me headaches. I try not to be dogmatic about my conclusions, and I aim to be as scientific as I can in my personal experimentation and observations. I don't expect my findings to be generalisable to everyone, but I do believe they may be useful for some people, so I offer them for free with lots of qualification. But many of these experiences, over decades, have been very stark, and very hard indeed to dispute: over years, certain results have been consistent, and for me at least that does count as evidence. For me, personally, it is a kind of scientific evidence that applies to me. It's very weak, as scientific evidence, but it's also very real for me. It's certainly infinitely better than any other approach on offer to me: conventional medicine just says "I don't know".

    I think that personal approach, if the individual is cautious and sceptical and observes effects very carefully, is a valid one. I think that, when the question is something like the possibility of individual sensitivities to synthetic chemicals, the absence of any scientific authority who can be relied upon to produce unbiased scientific evidence (given that so much science is now funded by industrial interests), and the skewing of science overall by those industrial interests, means that - sadly - personal experimentation (informed by suggestions from people we trust who have similar untreated problems) is often the most rational and scientific option available to us.
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  8. jace

    jace Off the fence

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    Indeed. For many of us it is the only road open. Love your care with analysing the washing up liquid effect, Mark. I have been taking a rainforest adaptogenic herb, Cats Claw. One time, I stopped taking it for a while to see what happened (one can get fed up with all the pills), another time I bought a cheaper version, a third time I plain forgot and ran out. On each of these three occasions, a rash appeared on my hand - I also felt a lot worse, but that's definitely subjective...

    [​IMG]

    Within three days of restarting the Cats Claw it subsided, each time. But, it's just another anecdote. What else do we have? Learned scientific studies, like PACE?
  9. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I don’t disagree with that at all, in fact were I to find something as simple as changing washing up liquid was of some benefit, no matter how unlikely I wouldn’t concern myself with need for proof or justification, given that the consequence of any change would be unlikely to have potential unrecognised negative impacts.

    However there is a different set of concerns in relation to Jody’s article which actually go beyond the article because they have a fairly long history in discussions about M.E/CFS. The process has tended be – a general assertion is made about the aetiology of the illness, usually in terms (as here) of some kind of hypothesis, where the source for the assertion is of uncertain science (as here - Mercola). The person offering the hypothesis then validates the source by referencing their solipsistic experience. Many of these types of hypothesis are then subsequently ‘voiced back’ as though there were definitive science that supported them. Of course that simply is not the case, because solipsistic experience can not validate a scientific position.

    I think I know what you mean, but I can’t accept the split infinitive – something either is or is not scientific. Coming up with subjective orders of ‘scientificality’ where part of the reference is to solipsistic experience just takes us down a route that seems to me to have no sound meaning. Which is a difficulty where someone is proposing a hypothesis of scientific validity – which really then just becomes story telling. The story may be ‘plausible’ in terms of shared solipsistic experience but that is not science. People may choose to inform their own approach to the illness on the basis of such storytelling, and this may be the only thing available to inform individual actions, but describing this as science only further confuses a deeply confused situation.

    IVI
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  10. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    jace, anecdotal evidence is good enough for me. What brand of cat’s claw have you has success with?

    P.S. Yes, IVI, I know that a sentence should not end with a preposition, but this has become so common that correct usage sounds stuffy.
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  11. Mark

    Mark Acting CEO

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    You describe here a pattern you perceive in the history of many discussions about ME/CFS. Obviously you have a concern, predating this particular article, about that pattern. But is it really fair to say that Jody's article fits that pattern you describe?

    Firstly, the article begins by acknowledging that there are conflicting opinions and controversy about the subject, and that the paradigm which is presented is just one of a number of paradigms, and one which has helped many people. That seems to me to give a reasonable context and provide some balance: there is no attempt here to mislead or pretend that this is the accepted scientific view

    The article then describes the paradigm presented, and it does quote Mercola and Myhill's views. Yes, the hypothesis is one of uncertain science, as you describe - but that has been acknowledged, which I suspect is not typical of the pattern you would rightly criticise.

    Next in your pattern is reference to "solipsistic experience". But in fact, there is no such reference in this article. Jody and others do mention their personal experiences later in the thread, but they do so in the context of a general discussion in which those with opposing views and experiences also share those experiences freely. There doesn't seem to be a strong attempt here to 'validate the source', or indeed the hypothesis or paradigm, but merely the sharing of an experience that says "in practice, this worked for me, but your mileage may vary".

    And I must take issue with your use of the phrase "solipsistic experience" here. Solipsism refers to "The theory that the self is the only thing that can be known and verified" or "The theory or view that the self is the only reality". It's an extreme philosophical position, and doesn't seem at all appropriate as a dismissal of a person sharing their own personal experience with others. The simple description "personal experience" seems more appropriate and a more balanced description. The inappropriate use of the phrase "solipsistic experience" suggests to me a rather extreme characterisation of the concept of "personal experience" or "individual experience", perhaps as a rhetorical tactic to devalue such personal experience.

    Next in your pattern is that the hypotheses are "‘voiced back’ as though there were definitive science that supported them". Again, I see no evidence that this has occurred in this article, nor in the following open discussion. It has been acknowledged from the outset that this hypothesis is not supported by definitive science, and it hasn't later been implied that it is.

    So: while the pattern that you describe would indeed be a problematic one, I think it's something of a strawman argument when applied to this article, and to this discussion. This article and discussion just don't seem to fit the pattern that you're concerned about.

    Having said all that, I am concerned that when Phoenix Rising publishes articles covering contentious or 'alternative' themes, we must take great care to do so in a responsible and honest way, and must be careful not to mislead people or to state things as facts which are not facts. So I value your presence here to critique and debate such articles, and any suggestions about how such articles might be improved in future will be welcome.

    I'm afraid this point could spark a quite deep conversation about the philosophy of science, which while it would be most interesting to me, is just the kind of thing that sadly I don't have enough spare time for these days. :(

    Without having time to think about it ever so deeply, I think I would say (following wikipedia somewhat) that the word "scientific" to me implies a systematic attempt to build and organise knowledge in the form of testable explanations and predictions about reality. Given that definition, I personally think it is reasonable to say that an individual who forms hypotheses, makes predictions, tests them, and then continues to reason about the results and test further, is behaving, to at least some extent, in a scientific fashion.

    For example, in my example about the washing up liquid, I did my best to test the hypothesis that using the eco washing up liquid removed the burning pain in my back that I was suffering from with the regular washing up liquid. I tested predictions about that, using the best of my abilities as an individual, and used my reason and scepticism to restrain the conclusions I drew - I did not conclude, for example, that everything the MCS doctors had told me was true, but I did take it as evidence that some of what they had told me was at least helpful to me as an individual, and might therefore be helpful to others too. My own experience was just one piece of evidence that confirmed the hypotheses of those doctors, but I would not expect it to be taken as evidence by others that these hypotheses were scientifically validated - that would require far more systematic study and far more evidence.

    I think all of that was reasonably "scientific" behaviour on my part - I was led by reason, testing, and observation - but I would not dream of claiming that this was "as scientific" as a team of people systematically testing my experience blinded, recording the experiences in a rigorous way, and documenting their findings.

    And I'm sure we can agree that any given scientific experiment, or any group of people experimenting in a given area, may make errors, may fail to control for some significant variable, or may misinterpret the conclusions of their own research. Research like the PACE trial, for example, may claim to be scientific, and in a sense it has some claim to be "scientific", but the methodology, the raw data hidden from public view, the transparently biased interpretation of the results and their politically-motivated presentation to the press and public, all suggest to me that it can reasonably be asserted that this work was very much "less scientific" than the experiments using the Large Hadron Colliider.

    So I'm not sure I can understand or accept the 'black and white' categorisation that something either "is or is not scientific". I have a suspicion that this categorisation you're arguing for will boil down - if analysed - to a distinction that makes reference to institutions and to political structures of validation and authority, as the sanction for what can claim to be "scientific" or not, which philosophically I doubt I could accept. It seems to me that it's the activity of hypothesising, predicting, and testing that defines "scientific" behaviour, and if my own experiments to draw conclusions about my personal experience of my environment can't be defined as "somewhat scientific" or "weakly scientific" as I would prefer, and if they are either "scientific" or not, then I'd have to argue that they are "scientific".

    As for the split infinitive, I could never complain about a fellow grammar pedant for pointing it out, but I do break the odd rule here and there for readability purposes. And I even start sentence with words I'm not supposed to, because I think it's fun to do so. :) But anyway, I'm concerned now that we are starting to take this thread off-topic, which wouldn't be fair to Jody or to our readers, so I hope the discussion returns to Adrenal Fatigue itself. I doubt I'll have time to write further on this subject, much as I'd like to, but if this 'philosophy of science' discussion does continue, perhaps someone can report and propose a spin-off thread?
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  12. jace

    jace Off the fence

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    I'm in the UK, and I started with the Rio Trading Cats Claw - 500mg 3/day. I now save money by capping my own, using powder from Baldwins, which has cut the cost to 20% of the ready made version. Baldwins' search engine is hopeless - best to use Google.
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  13. barbc56

    barbc56 Senior Member

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    I could write a book about so many of the issues brought up in this thread but at the moment I just don't have the energy. However, I do want to make a couple of points.

    It's just as likely that withdrawal from a supplement causes a rash as the likelihood of that supplement being beneficial. In other words, we just don't know what is going on when it comes to anecdotal evidence, which highlights why it's important to go up the hierarchy of scientific credibility.

    What really disturbs me about articles like this is that people might start self medicating or delaying getting appropriate medical attention. Some of these supplements do indeed stimulate the adrenal glands but like methamphetamines/speed/ steroids this causes more long time risks for your health than benefits. Check out:

    http://skepticsonthe.net/whats-the-harm/


    Lest I be accused of picking on you Mark, something like avoiding a type of laundry detergent is not on the same level of playing around with supplements and/or attributing what might or might not be going on with our illness without some type of credible scientific logic.

    If you suspect something might be going on with your adrenals, ask your doctor for a referral to an Endocrinologist. They have years and years of specialized training far beyond medical school. They know the appropriate tests and would most likely be able to give you the most appropriate diagnosis as well as treatment if a treatment is indeed deemed necessary.

    Barb C.:>)
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  14. Mark

    Mark Acting CEO

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    No problem at all Barb, I've replied to your own posts quite often enough for you to be excused if you did pick on me:) , and you make a very fair and important point. Self-experimentation is clearly more risky with supplements, powerful herbs, or drugs than it is with avoidance of potentially harmful environmental factors. The more powerful the drug, the greater the risk - and perhaps also the greater the theoretical potential for benefit, up to a point (if something definitely can't harm you, it follows that it definitely can't help either). I don't see any particular difference in this particular respect between pharmaceutical drugs, herbs or supplements, by the way. In every case, if they are so bio-active that there is a potential for benefit, then there must also be a potential for harm. I think there's a validity - again up to a point - for distinguishing between 'natural' and 'synthetic' solutions, but there are pros and cons on both sides.

    So I think it is right to caution about the risks, and I would agree that an appointment with a trained endocrinologist would be the most sensible first port of call if following this hypothesis. Having said that, I think it's also an individual right to make informed personal choices and to experiment individually, and I also think that the points I made about the potentially-somewhat-scientific nature of individual experimentation remain as valid for herbs and supplements as they are for washing up liquid.

    I'm glad that you appear to support my concept of a 'hierarchy of scientific credibility'. In relation to that point I should add that the experimentation of a physician (or indeed any practitioner) with treatments for patients - over the course of a career - is a big potential step up that hierarchy. So long as the practitioner is open-mindedly, rigorously and objectively hypothesising, experimenting and observing, together with the patients (and openly), then that is also scientific behaviour, and for the patient, the involvement of an independent observer makes the process 'more scientific'.

    Of course, there are significant ethical concerns that come in, in any such situation of self-experimentation or experimentation by a physician. That deserves some serious analysis, but I'll just make a couple of quick points.

    Firstly: if the physician or therapist is doing anything at all, beyond a merely computerised task, and if their experience counts for anything, then they are always experimenting to some extent, and learning from their experience. So I'd argue that this is a question of degree, not black and white, because the situation of 'patient as experimental subject' is always present to some degree.

    Secondly: there is a very real issue of the individual's right to be make decisions over treatment, and the important thing is that those should be informed choices: they should be fully aware of just how 'experimental' any given approach is, and what the potential risks may be, and should have information from a range of sources so they can make up their own mind.

    Finally, and crucially for us: there are many of us who are in situations where the justification for the decision to experiment is considerable, especially in situations where we feel we have "nothing left to lose" due to age or severity of illness - and this situation is very much driven by the apparent indifference of mainstream medicine to our plight. This does of course also entail vulnerability, so it's especially important that practitioners and advisers should always issue appropriate caveats and ensure that patients are aware when a treatment is controversial, disputed, potentially risky or somewhat experimental. But I do believe that these informational issues are the key to the ethical issues, and that ultimately individual choice is worth preserving.

    For those reasons, we've tried to enshrine appropriate cautions in our forum rules, in the form of the 'medical advice' rule particularly, and it will remain a guiding principle of Phoenix Rising to be similarly responsible in our articles and the related discussion threads. Accurate and reliable information, together with an openness to discussing a wide range of approaches from a wide range of perspectives, are key founding principles and they will remain guiding principles for the organisation. If we ever do fail to issue necessary or appropriate cautions, I'm sure there will always be plenty of people to highlight such failures and we'll always be open to correcting any mistakes we make.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    medicine has failed many of us which is why many self treat. A specialist like an endocrinologist wont treat someone unless they have obvious clinical testing that shows abnormalities. Reference ranges are so wide that test results can show u testing in the so called normal range but in fact u do have a dysfunction going on but these so called specialist wont treat u and say nothing is wrong with you, but u probably get a script for an antidepressant. Very few good docs and many docs have their hands tied due to the health system not allowing them to treat patients with dysfunctions unless obvious. There is a big gap between preventative medicine and actual obvious illnesses, so basically u wont get treated until its too late??
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  16. GracieJ

    GracieJ Senior Member

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    What on earth has happened to using common sense in observing clinical evidence?

    Especially in light of the growing prevalence of abnormal norms.

    We all have eyes, ears, brains, the power of observation.
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  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    doesnt exist, although the psychobabblers will put it down to a bad childhood.
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  18. barbc56

    barbc56 Senior Member

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    I am not talking about taking away any individuals rights but Caveat emptor (let the buyer beware). I am not saying that all sides of a discussions should not be written about.

    Experimenting withing scientifically validated information by doctors is called individualization and is in no way comparable to an individual who may be self medicating or self diagnosing.
    I can't write too much more as I am having computer issues, one of which is my enter button just stopped working along with font issues.
    I will come back later to address some of your responses. I wish I had the energy and wherewithal to write a blog here addressing why I believe in Science Based Medicine but wonder if it would be approved. Maybe I could collaborate with others?


    Barb C.:>)
  19. Hip

    Hip Senior Member

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    As is well known, enteroviruses (specifically Coxsackie B viruses and echoviruses) have been strongly linked to ME/CFS. Now interestingly, echoviruses are able to infect the adrenal glands.

    I have always thought that an echovirus infection of the adrenal glands might well damage or disrupt the adrenals enough to cause hormonal deficits or dysfunctions. An echovirus infection might damage the hormone producing cells in the adrenals, either directly, or by indirect autoimmune mechanisms, thus leading to hormonal deficits or dysfunctions.

    Hormonal deficits precipitated by echovirus infection of the adrenals might be analogous to the enterovirus model of type 1 diabetes, in which it is believed that a coxsackievirus B4 infection of the pancreas may destroy the insulin producing beta cells (reference: 1).

    I doubt if any researchers have conducted studies that biopsy the adrenals in ME/CFS patients to see whether they harbor a chronic low-level echovirus infection, but a study like this might be a worthwhile undertaking.
  20. Hip

    Hip Senior Member

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    In fact there is a lot that an individual can do to make their self observations more rigorous and scientific. Sure, the first time you get an improvement using a drug or supplement treatment, it might be just a coincidence, or might in fact be due to the other factors you mention, such as a change diet that you just happened to commence at the same.

    However, the first thing I do when I note some improvements is stop the drug or supplement after a few weeks or months, to see if the benefits wear off, and if they do, then restart again to see if the benefits again reappear. If you repeat this several times with consistent beneficial results, you can start to become confident that it is indeed the drug or supplement that your are taking that brings improvements in symptoms, and not coincidence or some other factor.

    The placebo effect is always a problem in scientific testing, but one thing that tends to control for the placebo effect is personally testing multiple supplements and drugs (at different times of course), as most people with ME/CFS tend to do anyway. How can this control for the placebo effect? Well presumably the placebo effect will be the same for each supplement and drug you test; so if only one or two of the many supplements and drugs you test bring noticeable benefits, but the others do not, you can be sure it is not the placebo effect, because clearly this benefit must obviously be over and above any placebo effect, which would be equally present for all supplements and drugs you tested. So in this way, you can quite easily control for and eliminate the placebo effect from your self-testing results.

    So personal supplement and drug testing can indeed be rigorous and scientific, if you make the effort to verify you results by repeated testing, and by testing multiple supplements and drugs to control for any placebo effect.
    GracieJ likes this.

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