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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. barbc56

    barbc56 Senior Member

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    (my bold)

    Hmmmmm, if my tests are normal, I certainly don't want to be treated as if they weren't. The norms for a test are determined by a complicated scientific process. New scientific evidence is considered which may show a need for a change in the reference range of a test. Doctors may also go by relative changes in your test results. For instance, some people might test in the lower range of normal and at that point the doctor needs to keep a check to see if your level is dropping or if that is your "normal" range. Of course this is a simplistic example as there are even more factors that go into making a diagnosis using the input of blood tests and symptoms.

    If I take uppers, they will give me more energy. When I stop taking them I have less energy. I can change the methodology of testing this a myriad of ways and still come up with the same results. However this does not address other issues such as risks vs. harm nor does it consider medical information about how our bodies work. You need these pieces and more to put together the puzzle of what is happening when you take these supplements.

    Barb C.:>)
  2. In Vitro Infidelium

    In Vitro Infidelium Guest

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    The article fits the pattern because when a source was criticised, the author invoked solipsistic authority as validation of the source. The article isn’t a first person testimony in which solipsistic authority would stand as validation of itself, it’s an hypothesis (published as a PR front page article !) which proposes a scientific reality. Science (and the processes of reasoning which underly science) doesn’t command fairness but harsh rigour – I’m not being nasty to Jody, I’m just arguing for the use of rigorous logic when hypotheses about M.E/CFS are being advanced. Claims that “the paradigm …………….. is just one of a number of paradigms, and one which has helped many people" (who helped where ?) when advanced without supporting evidence, stand only as anecdote supported by implied crowd sourcing. Multiple solipsistic testimonies are still just solipsisms.
    It’s not the ‘uncertainty’, it’s the lack of validity, that is the problem. Multiple rigorous studies may still only provide results that do not provide certainty – this is very different from the inadequacies of Mercola and Myhill, though I recognise that conflation of ‘uncertain science’ with ‘lack of validity’ is frequently used for arguments of equivalence. Those arguments are wrong.

    Well of course there’s no reference in the article because it doesn’t concern itself with validation of the sources. It’s only in the discussion when someone has questioned the validity of Mercola, that the validation by solipsistic authority has been given. Jody could have sought some other validation but didn’t either because it doesn’t exist or at least isn’t available – which is where my questioning came in, and in answer to which Jody ackowledged the limitations involved.

    Hmm – tedious little ad hominem thrown in there. I’ll answer it but I think it’s evidence this exchange has reached any useful limit. “Personal experience” is simply too imprecise to allow identification of the problem, which is why I deliberately used ‘solipsistic’. The issue is about validation – no individual has to justify to anyone else (at least not outside their immediate real world relationships) the choices they make regarding their own health – but that is not what is in question. What we have here is a purported process of presentation and argumentation that is apparently geared toward a reasoned outcome – in this case an informative hypothesis of illness causation. Either there are processes of validating references that are accepted as scientific – published peer review etc or we have anecdote.

    Personal health anecdote – what ‘I’ observe about ‘my’ body from inside the experience of that body is unequivocally and utterly unavoidably ‘solipsistic’. I have the distinct feeling that someone will raise the self infection experiments of Marshal and Morris as support for ‘personal experience’ – lets be absolutely clear, those researchers used external references – knowledge of the organism, definitive testing etc, to raise their process of hypothesis formation far beyond any experiential validation by solipsistic reference.

    There may be a useful role for the ‘expert patient’, but the usefulness will be entirely dependent not upon expressed solipsistic experience, but upon the capacity of the ‘expert’ to reference their illness experience to external sources which are demonstrable and communicable to sceptical audiences. Relyingsolely on solipsistic references produces not reasoned proposition, but story telling – the stories may be very attractive but that will never be science and they will frequently be sources of confusion if seen as anything other than what they are.

    IVI
  3. In Vitro Infidelium

    In Vitro Infidelium Guest

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    That profoundly understates the extent of the placebo effect. No individual can exclude the placebo effect - it will not matter how much testing you do - the individual will always be self referencing and therefore incapable of responding disinterestedly to the accumulating data. People are free to experiment upon themselves, but no one should be under the illusion that such experiment will have meaning beyond that one mind/body.

    IVI
    barbc56 likes this.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    barb, the link to the video explains why normal lab values arent normal. Apparently normal lab values are selected from a wide range of ages as well as a wide range of people with different health issues, lab ranges arent picked from healthy people and definately arent correlated with age for many labs. So low normal lab value could be normal for a 70 y/o with underlying health issues, so the normal lab values are far from perfect. If u watch the video link it explains how they tighten the lab reference ranges to optimise health, there is a big grey area between healthy and disease, why wait to get to the disease end to treat it if it can be prevented. once again watch the video for a better explanation of what im trying to get at.
    jace and Shell like this.
  5. HowToEscape?

    HowToEscape? Senior Member

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    "but story telling – the stories may be very attractive but that will never be science and they will frequently be sources of confusion"

    Story telling can take you places.
    Worked for Ronald Reagan.
    barbc56 likes this.
  6. Mark

    Mark Acting CEO

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    IVI, you make a very strong argument indeed and I accept much of what you say. That includes your highlighting of an unintentional ad hominem of mine; given your clarification of the sense in which you describe this kind of description of personal experience as 'solipsistic' (with a real stretch I can now begin to understand what you mean by using that word here, even if I can't accept it as appropriate), I'll withdraw the 'rhetorical tactic' part of that sentence, and I apologise. You're right: I got carried away there. 'Tactic' was unfair.

    However, although I accept the validity of the points you have made, I still think that when you use words like "solipsistic" and "story-telling", they very much over-emphasise those valid points - yes, in a rhetorical sense - because they tend to devalue that "story-telling" and unfairly characterise the "story-teller" as "solipsistic". The effect of that language (intended or not) is to suggest that the activity of "story-telling" is quite worthless because only "science" has any value at all, and to imply that the "solipsist" relating their experience cannot also see beyond that experience and put it in context.

    "Story-telling" feels belittling, "experience-sharing" doesn't. "Solipsistic experience" suggests a dogmatic and individualistic disinterest in anything beyond the individual's own experience, "individual experience" or "personal experience" is more straightforwardly accurate and less loaded.

    Again: solipsism is "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 when people share stories about their experiences with each other, they are not asserting that extreme position at all. By sharing stories, they are neither asserting that nobody else's existence is verifiable, nor that their sharing of stories is 'science', nor that they have 'proved' the hypothesis that seems to be supported by their experience, and they are not saying that the hypothesis couldn't be better known or verified by scientific research. You are quite right that people will tend to (often quite dramatically) overstate the value of the evidence they are sharing, but wrong in my opinion to assume that they are incapable of recognising the limitations of this activity.

    As I see it, where we differ is that I do not believe that the quite valid cautions you have rightly pointed out mean that the 'story-telling' activity is worthless. As a vehicle for the pursuit of verified truth, it is indeed very strictly limited as you have described, but I see this quite natural human activity of sharing experience as a complementary process to the scientific pursuit of truth.

    To illustrate the point: If, in a discussion like this one, we find that an overwhelming majority of the participants pop up to describe extremely positive experiences, and if then a large number of forum members experiment 'solipsistically' and report success, then yes, we should still be very cautious and note that there is a high degree of self-selection involved in that group, and we should apply our critical faculties and refrain from describing this as if it were as solid a result as a rigorous scientific evaluation, but neither should we dismiss our findings outright. I believe we are quite right to be more interested in such a scenario than in another scenario where few report benefit and those who experiment report their disappointment. I also believe that the knowledge we build up about each other as individuals gives us very useful additional clues that put the findings in context and gives them - and the process - more value to us than may be perceived from outside.

    If we do find that some such approach gives overwhelming results, then the next step is to say: maybe this is something worth testing scientifically. We should of course be cautious again at this point not to assume that the original hypothesis is necessarily what should be tested: the apparently-successful treatments themselves are what our shared experience is pointing at, but if large numbers of people begin reporting positive results for a given approach there is at least a valid source there that suggests something worth exploring.

    In other words: I do believe that the sharing of human experiences between humans has value. I have 'solipsistic' confirmation of this too since the treatment that helped me dramatically came from personal recommendation, from someone whose balance and objectivity I greatly respect, and he in turn got his recommendation by word of mouth. I do also accept that this 'knowledge source' falls well short of the potential power of science to deliver useful results to everyone. I would even go further, though, and suggest that the overall results of these popular shared experiences are quite likely a key source which does (or at least could) usefully inform the formation of actual hard scientific hypotheses. Perhaps sceptics, as they scrutinise and explore what seems to them questionable, are actually gaining useful information that informs (perhaps less than consciously) their hypothesis-generation.

    So the way I see it, this ubiquitous phenomenon of humans sharing their individual experiences is, and always has been, a huge part of the environment within which scientists generate hypotheses, and in testing the hypotheses that attract the most interest, scientists find their raw material - it would be quite wrong for them to devalue all of that. As the quip goes: "What do you call alternative medicine supported by evidence? Medicine" - conversely, all of medicine and all of science was "alternative" once, and so completely writing off the entire "alternative" realm would be a little like cutting off one's own oxygen supply.

    Perhaps I'm off track, and your main point is that however many people may report benefits from these treatments, this would still not scientifically validate the hypothesis described in the article. I can entirely agree with that point, and if you accept that sharing experiences of treatments is worthwhile then I may have been making that case unnecessarily.

    But In the end, I suppose the reason why I am here arguing these points at all is because mainstream science and medicine (at least what is officially accredited in the UK) offers me nothing whatsoever for what ails me. Not only does it offer no treatment or pain relief, more importantly it offers me no research into my illness either. It's that lack of interest in our plight which creates this vaccuum, and so by far the best and most effective way to deal with the valid concerns raised by IVI and others about the 'alternative' world would be to advocate for medical researchers to fill that void themselves and take a scientific approach to the millions of people who are ill and who are being ignored by medical research. Far better to light a candle than to curse the darkness, after all, and it seems to me appropriate for scientists to address their own failure to provide answers rather than focusing their attention on the shortcomings of those who attempt to make up for their lack of interest. I'm sure you do both, IVI, and all credit to you for that, but there are far too many who seem to criticise those making an effort without offering any scientific path as an alternative. Offer us an alternative to the alternative, and this whole argument would simply disappear.
    Valentijn likes this.
  7. jace

    jace Off the fence

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    Barb C said, on the last page
    But I had the rash before I'd heard of Cats Claw too. It's very like a lupus rash picture I found, it's similar to a parvovirus rash, and a HHV1 or was it 2 rash too. Cat's Claw has been used as an immune modulator and anti-viral for centuries, and is considered 'possibly safe' by WebMD. Cancer.org says
    and that's in doses of twice to ten times as much as I take.

    What choice do we have, Barb? Before I started experimenting for myself I was going downhill fast. I had vertigo, temporary paralysis, insomnia and brain pain like you wouldn't believe (or perhaps you would). Everything the docs gave me made me worse. Now my brain works the way it should, most of the time, and I do have some sort of life. No, you cannot tell us we should not try and treat ourselves, if we are careful and cautious and do our research. It's the only choice some of us have.

    Cats Claw is not all I take. I have quite a protocol, which I test and record. It works, not perfectly, but better than anything medical advice has given me. It's my life. Warning, however, there are medical contra-indications to Cats Claw. Everyone must do their own research.
  8. barbc56

    barbc56 Senior Member

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    Heapsreal, I have read enough of this kind of material ad nauseum so am opting not to watch the video. This type of "medical advice", as portrayed in books such as Stop The Thyroid Madness, is not scientifically sound as well as dangerous. I have seen forums where people are self medicating and experimenting with such things as upping their thyroid medication. Upping your thyroid medicine when you don't need it nor know about dosing will probably make you more energetic but it can also cause such things as heart attacks, high blood pressure and something called "thyroid storm". All of these conditions are lethal. I was hyperthyroid at one time and was hospitalized as it was giving me heart arrhythmia. which resolved once I was treated for this.

    The endocrine system is a delicate balance and if you end up needlessly messing around with one part of this system it can have the effect of messing up your whole system.

    Dr. Bryan P. Walsh is a naturopath and for me that says it all.

    http://www.drbryanpwalsh.com/

    We live in a society that wants a "quick fix" for whatever ails us. Look at all the ads that give out the message, have this symptom?, well just pop a pill or supplement and you will feel better.

    The reality is that right now there's not a lot that can be done about our condition other than symptom control. So when a doctor says this we start doctor shopping and this is where the alternative medicine industry rushes in to fill this gap and we end up not only uselessly spending money but also possibly putting our health in jeopardy. This applies for other health conditions as well and the everyday aches and pains that come with life.

    This is just being realistic. This is why it's important to advocate for more research about me/cfs.

    I'll let others choose to go down this path.

    Barb C.:>)
  9. Valentijn

    Valentijn Activity Level: 3

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    Odd. Because where I live there is a naturopathic university that is as rigorous as the allopathic schools of medicine. And when they graduate, and pass whatever tests, they become licensed just like the allopathic doctors, with the same privileges. Naturopathic doctors are doctors, just with a different focus/view of health, which is actually pretty useful when you have a disease that isn't easily categorized.

    I don't think anyone is proposing that treating their adrenals has cured their ME - it's a temporary fix to keep us somewhat functional while waiting for something better. We see naturopathic doctors, try supplements, try herbs, etc, because allopathic doctors are often not even treating symptoms, certainly not adequately. If I stayed away from naturopaths and supplements, I would probably be bedbound, and definitely housebound.

    Conventional doctors have failed us for decades and are still doing so. That doesn't mean we nod politely and go off to slowly die or lay down for a few decades while waiting for a cure. It's worth some risk to try things, preferably after researching them as best we can.

    We don't do this because we want to - we do it because we literally have no choice. We're not qualified to be doing it, but in most cases, the professionals aren't doing it for us.
    Snowdrop, SunnyInside and heapsreal like this.
  10. barbc56

    barbc56 Senior Member

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    This is something I just saw on the bottom on another forum for another health related issue:



    I wonder if we had this posted on Phoenix Rising, people would feel more comfortable about expressing an opinion as well as reducing some of the defensiveness sometimes seen when posts have a different perspective than our own. I am not saying people shouldn't respond to posts but it might improve the tone. Please understand that I am not referring to specific people or topics. :) Barb C.:>)
    MishMash likes this.
  11. barbc56

    barbc56 Senior Member

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    @Valjean

    Not only do naturopaths not have to do a residence, but their training is not science based. D.O's, I believe, do have a more rigorous education. I find this rather concerning.

    http://en.wikipedia.org/wiki/Naturopathy#Practitioners

    I think I have done enough posting for one day, LOL!!

    Barb C.:>)
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  12. Valentijn

    Valentijn Activity Level: 3

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    I think we'd all love some large double-blinded randomized studies on the treatments that a lot of us have found helpful - but it doesn't happen, especially not in the context of ME/CFS. Lacking that gold standard, we do the best we can with what is available - the experience of ME experts and the experience of patients, hopefully while using good judgement and reading between the lines as best we can.

    Those self-experiments conducted by other patients have been helpful. I don't look at them and say "OMG, I have to try that because X said it's great!", but it does give me something to look into. I can evaluate the risks versus the benefits, discuss it with a doctor, and give it a shot if it looks workable. For example, fish oil - it gets rid of my ME headache 12 hours after I start taking it. If I stop taking it, the headache comes back after a day or so. There's no studies I know of regarding ME headaches and fish oil, but I heard about it, there's basically no risks, and it's' been extremely beneficial in reducing my pain.

    Same thing with trying Strattera. I only know of one person who believes it helped them, but I had low blood platelet norepinephrine levels and low blood pressure, so it seemed worthwhile to try a low dose of an NRI that can raise blood pressure, even with the potential side effects. And as a result, I've not been housebound for the past month, and I can sit up all day, stand up for an hour or more, and think quickly and process things properly again. This has been objectively verified by my doctor to some extent by checking my blood pressure laying, sitting, and standing, before starting Strattera, after two weeks, and after 4 weeks. I went from a pulse pressure of 25 to 32 to 45.

    If not for people sharing their personal experiences, my life would be far more limited and unpleasant than it is now. I'm always hoping for more quality studies, but I'm not going to discount other people's experiences or my own when I've experienced how helpful they can be. The alternative would be to sit around and wait X years for a drug company to repurpose some drug or other, and suffer a lot more than is necessary during the interim. Screw that :p
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  13. Valentijn

    Valentijn Activity Level: 3

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    It depends very much on the state. In Seattle we have Bastyr, which is mentioned as having residencies in the Wikipedia article, and if you look at the credits and courses required, it's almost identical to what is required by the University of Washington's medical school (I was rather skeptical too and did my homework before going to see a naturopath). Residencies probably aren't required for licensing because naturopathic medicine is a new area, and there probably aren't anywhere near enough residency opportunities for the students.

    Their training most certainly is science based, unless you're talking about non-practitioners in states where they can't be licensed. For Bastyr the prerequisites are: a bachelor's degree, college algebra, 4 chemistry courses (2 organic or 1 organic and 1 biochem), 1 year of biology (including cellular biology and labs), physics, and psychology.

    Bastyr's program is 4 years long, and the courses taken each quarter (and clinic requirements) are listed at: http://www.bastyr.edu/academics/are...naturopathic-doctor-degree-program#Curriculum

    Some of the courses make me wince, but they're also studying the same systems the UW med students are.

    Course descriptions are at http://www.bastyr.edu/sites/default...talog/2013-catalog/13-Course-Descriptions.pdf (includes non-ND courses).
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    If your happy with the health care your getting then i suppose thats fine and thats all that matters.
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  15. August59

    August59 Daughters High School Graduation

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    The one thing that most of the main stream and even some of the intergrative doctors don't seem to know is if the case of some that is probable for AF and if this patient is one of the subsets that have the the horrible unrelenting pain and is by chance on even low doses of opiate pain medication, the ACTH test is worthles due to the opiates blocking most of the receptors that ACTH uses to transport it's signal. Now there is a different stimulation test and I haven't found where it is affected yet.
  16. jace

    jace Off the fence

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    Strange how many people have reported greatly improved health by following the model explained in STTM... your personal experience is anecdotal, and not necessarily relevant.
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  17. barbc56

    barbc56 Senior Member

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    My "anecdotal" reference may not have been relevant in the strict sense of the word but I used it to to show the dangers of getting too much thyroid which is a realistic medical based consequence if you take medications/supplements that stimulate part of the endocrine system when it's truly not needed and possibly creating an imbalance that does more harm than good. Look at steroid use by athletes. It may improve their performance in the short run but in the long run is very dangerous. Therefore it's important to get a doctor who knows how the endocrine system works, not just based on studies but also taking into account the latest scientific medical knowledge of which an endocrinologist has spent years studying.

    If I had said this is my experience so it must be correct and stopped there it would have been purely anecdotal.

    The following shows what I mean when I say science based medicine.

    http://www.sciencebasedmedicine.org/index.php/about-science-based-medicine/

    Is the system perfect? No. But I would rather choose a doctor who is a practitioner of SBM than a naturopath whose knowledge base, IMHO is within a framework of treatments based on antiquated and/or unsubstantiated theories of medical knowledge

    If a medication is making someone feeling better that may or may not be meaningful and is rife with logical fallacies some of which are correlation does not mean causation, self limiting conditions, conditions that wax and wane and personal bias. It takes a lot more than just this one factor, feeling better, to come up with a definitive diagnosis and subsequent treatment.

    Using this model, IMHO, is not only the better way for science to progress but ups the chance that a treatment will be developed that will really help a medical condition.

    While this is my take on the matter what others choose is their business.
    Barb C.:>)
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  18. jace

    jace Off the fence

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    Nice one, Barb :thumbsup:
  19. Hip

    Hip Senior Member

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    It is interesting that cats with interstitial cystitis (a common comorbid condition in fibromyalgia 1) have shrunken adrenal glands, and may have mild primary adrenal insufficiency:

    Small adrenal glands in cats with feline interstitial cystitis

    Since interstitial cystitis (and the similar condition of overactive bladder) involve urinary tract abnormalities, and since the adrenal glands sit on top of the kidneys (the kidneys being the beginning of the urinary tract), it may well be that whatever process (perhaps an autoimmune process?) is damaging the urinary tract in interstitial cystitis and overactive bladder, this same process might also be damaging the adrenal glands.
    Ema and MishMash like this.
  20. Steve Boyle

    Steve Boyle

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    Acknowledging that there is a percentage of ME/CFS sufferers who have severe sypmtoms all the time, it is fair to say that a greater percentage have fluctuating symptoms [frequently referred to as 'good days' and 'bad days']. In some people these changes are very marked [I'm one of those] which could be one of the reasons some of the non-believers point the finger at us; "how can you do that if you are so ill ?". They don't think we should have any sort of a life when we are well enough to do so.
    Is there anyone out there who, like me, wonders why there isn't more research on what happens to our metabolism to give rise to such significant changes between good days and bad days ? I've been tested ad nauseam, but I've never been tested on a good day then on a bad day, then the results compared, despite requesting this be done on more than one occasion. Yet on one occasion I was diagnosed with Addisons, only to be told two weeks later following a second [blood] test that there had been a mistake.
    The adrenal stress profile test is reputedly very accurate - I would very much like to have that test done on a good day, then a bad day, but can't afford to do that. And I'm not well enough to keep abreast of all the research that goes on, so if work has been done on the lines I'm suggesting, I'd be very grateful if someone would post the details on here.
    I found the reference to damaged/atrophied feline adrenal glands most interesting; another bit of research I'd not come across before - has similar research been conducted on humans ?
    O'baoighill.

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