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Knowing a treatment option won't work

Discussion in 'General ME/CFS Discussion' started by cmt12, Sep 7, 2016.

  1. cmt12

    cmt12 Senior Member

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    John and Jane are unknown to each other but they both begin to have ME/CFS symptoms at the same time. They Google for treatment, find info on pacing, decide that is the answer to the problem, and begin to use it. The pain seems to be lessening but then a few days later it returns worse than ever. It makes sense to each of them that they weren't pacing enough so they lower their activity even more. Same thing happens - pain seems to lessen for a few days and then returns again. They both think to themselves that they better bring down the activity level even more. Once again, the same pattern plays out.

    At this point, John gets frustrated and decides that he has to bring the activity level down even more. Meanwhile, Jane also gets frustrated, but instead of automatically continuing along the same path as John, she starts to sense that there could be something she is missing. Maybe pacing by itself is not going to solve her problem she thinks. She decides to give it one last try.

    A few days later, they find themselves back at square one. Again, John decides that his pacing level hasn't been good enough and that he needs to pace even more. However, this time Jane feels that same sense that she felt before and it is even more compelling this time. She decides that she needs to figure out what she is missing beyond pacing.

    The question I want to pose to the forum is how are we able to know when our treatment option is not going to work rather than increasing the levels of it? Similarly, how do we get to the point where we are able to realize a treatment option is not going to work WITHOUT EVEN TRYING IT? This is a real thing right? There might be a treatment that multiple people claim has cured them that we have never tried, but we can still be quite sure that it won't work. Where does that intuition come from? It is the same thing when it comes to certain theories. For those of us who have been dealing with this condition for several years, we are able to quickly dismiss a theory as a failure even though we might have believed it if the first doctor we ever saw told us the same thing when we first had symptoms.

    It is not a matter of intelligence or reason. When I, or anyone else, initially get a diagnosis we know nothing about from an authority figure, we are going to believe whatever information we receive. If it were about intelligence, at least some of us would be able to see the information is wrong from the beginning even if it's completely new. Do we agree that the factor that allows us to not get stuck where others do is not the intellect? I'll stop here for now. I hope some of you guys will agree that this is a very important topic that deserves some focus.
     
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  2. frog_in_the_fog

    frog_in_the_fog Test Subject

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    Some additional fuel for thought:

    There is so much uncertainty when you are labeled as having cfs/me, and the journey to a cure is often a long one, if we can ever actually be truly cured.

    What works for you, may not work for me. There have been cases where a couple exhibited the same symptoms but had responded differently to the same treatment.

    We each know our bodies well enough to tell if a treatment is working for us. Though in some cases the effect of a treatment may be negligible or in fact make symptoms worse.

    Doctors don't always have the answers. Being told you are clinically depressed by four doctors doesn't necessarily mean it is so, especially if you don't respond to therapy.

    Sometimes treatments only provide temporary relief, are you willing to spend tens of thousands of dollars on a treatment that may only work for six months?

    Those that find a real lasting cure are the lucky ones and seem few and far between. For many of us it is all about managing our symptoms, finding that unique cocktail of drugs and/or supplements that bring us relief.

    We can be like lab mice in a cage, or be the mice that successfully navigate the maze. So in my estimation, we can do what our doctors tell us and see what happens if anything, or we can use our intelligence to reason out what may or may not work. For me it is about half and half.

    If you live in the UK or Canada, you would be programmed to believe that PACE is your only path to salvation through CBT and GET. Thankfully, this nightmare scenario will soon be over...
     
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  3. lnester7

    lnester7 Seven

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    Once you understand and organize the treatments in a certain way I can tell you what will work without trying. I hope some of this will help.

    Immune:
    1. Immune Modulators: This is the ones that makes me better. Acai tea made me feel amazing, or any inmume mod herb. I discovered all Booster would make me soooo sick. So I didn't have to try this treatments if I would of known how to organize it this way.
    2. Immune Boosters: Zin, Equinacea, Thiamus A.....
    3. Immune Suppressors.
    Orthostatic Intolerace:
    1. Vassocontrictions: Any foods/ herbs in this category I will do best with. Coffee is both and I tolerate ok so don't use coffee as a guide.
    2. Vassodilators: This makes me so sick, I could tell you inmidietly was not for me.

    Viral, Bacteria:

    1. Anything that is antiinflammatory will work.
    2. I did tests so I went based on results when the antiviral route.
    3. This category is more tryial and error.
    Methylation:
    This was tricky for me because I went by tests results, and the advise would make me so sick!!! so I tried it by what felt good. To this day I avoid folic acid (I go to sleep for 3 days) the brain inmflamation is intolerable.
     
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  4. cmt12

    cmt12 Senior Member

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    There is no doubt that reason is something we are using, but is it actually what is guiding us? When John's pain returns and he doubles down on pacing, is that reasonable? I'd say so. How about when he goes through this same cycle for the 3rd time, 4th time, etc? At what point, does continuing to double down on our current treatment path become unreasonable? When Jane, after the third time of doubling down on pacing, decides to consider something is missing, is she only using reason in that moment? The same reason that was completely confident that doubling down on pacing for a third time was the right move?
    Yes, I believe you, but I want us to take a deeper look at why. What exactly is going here. There is something else going on here in how we are navigating this maze and identifying it is necessary to ensure we don't continue to get stuck.
     
  5. *GG*

    *GG* Senior Member

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    I think some of it is being curious. And being willing to be your own scientist, experiment.

    Also, some of it for me is not "caring" to much what others think, and willing to give something a chance!

    GG
     
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  6. cmt12

    cmt12 Senior Member

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    Curiosity and being open to other treatment options doesn't happen while we fully believe that our current treatment is the answer right?

    After John and Jane read that pacing is the answer and then get their hopes up after experiencing some relief for the first few days, that belief that pacing is the answer has become pretty solidified. This shows when the pain returns, challenging the belief that pacing is the answer, they double down on pacing. They are operating inside the belief that pacing is the best treatment and that bias filters any conflicting feedback in order to preserve their belief.

    When the pain returns a second time, they both double down on pacing again. Their belief tells them that they aren't pacing enough instead of doubting the entire belief that pacing is the answer. Once Jane is able to loosen free of the core belief, only then is she able to be open minded to another path. This is universal in that we are all open minded to whatever is going to work as long as we are not inside of a current belief about what works.

    For the sake of being precise, I think the factor to focus on is not about being open minded, but about what allowed Jane to loosen free of the core belief, which then allowed her to be curious as you say. What is John not doing? What changed in Jane from the third time she reinforced her pacing belief to the fourth time when she began to doubt. Was the doubt not there for John and was it not there for Jane the first couple of times the pain returned?
     
  7. Valentijn

    Valentijn Senior Member

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    PEM isn't "pain". It's an exacerbation of neurological, immune, and muscular symptoms and signs, probably with some others thrown in as well. PEM has also been repeatedly and objectively documented in research, and is not just a "belief".

    But apparently you think John and Jane are complete morons who don't understand their own bodies, and suffer from an irrational fear of "pain"?
     
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  8. alex3619

    alex3619 Senior Member

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  9. alex3619

    alex3619 Senior Member

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    Figuring out what is what with treatments requires evidence, reason, experimentation and communication. Keep a log. Monitor symptoms. Figure out the safe maximum of something if it is known, and don't exceed it without very good reason. Start slow, or in other words, be conservative and patient. Try to minimize all other changes while testing something. Start and stop something. What happens?

    What-if scenarios are not as good as case examples.

    If something is important to you, question it and everything about it.

    For many medical issues you can never know, for sure, you are right. Neither can doctors be sure, even with tests, and are more likely to be wrong if using intuition, heuristics (both of which are part of clinical judgement) or written instruments such as a depression scale.

    It depends on the issue though. If you got run over by a bus, and broke a leg, then its certain enough for most purposes what the cause was. Yet .... what if you ingested something and it made you so foggy you just stepped out on the road. The proximate cause is clear, but there can be other circumstances.

    Like one time, stupidly, I was more than a bit perturbed and drove home. I got home fine but my concentration was not on driving. If there was an accident there would have been additional contributing circumstances.

    Or another example. I tried Resveratrol at a low dose. No adverse reaction. So I increased to the standard dose many use, 300mg per day. No result. I kept experimenting. At 600mg I get a result. BIG. It fixed a major breathing issue, one that threatened to kill me. Further experimentation led me to realize I only needed it every 4 days, or every 3 days if I ate wheat. Always questioning things often leads to answers.
     
  10. frog_in_the_fog

    frog_in_the_fog Test Subject

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    I find that if I hurt my back, I will tend to fear moving because of the potential for severe pain from said movement. This aversion to movement often continues for a while until I finally figure out that it doesn't actually hurt to move anymore.

    Conclusion: The fear that comes from experiencing pain may actually be stronger than the pain itself after a time.

    The conditioning of an organism's behavior with pain has been greatly researched and can even be observed in tiny little worms.


    Sometimes the mice are the ones that have to do the research.​
     
  11. alex3619

    alex3619 Senior Member

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    Fear exists for a reason. Its a survival factor. Not being afraid can be more irrational than being afraid.
     
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  12. lansbergen

    lansbergen Senior Member

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    A couple of days ago I did not watch where I put my feet and fell. I twisted my knee. That evening it hurt very much even doing nothing but breath. The next day I could move a bit with a stick. Today I could move with a stick without pain if I did not make a wrong movement. I did not even need to take a painkiller today.

    Where is the avoidance fear in that????
     
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  13. cmt12

    cmt12 Senior Member

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    Allow me the opportunity to establish credibility that I know what I'm talking about:

    Naviaux's recent study
    Me on 4/22/2015
    Me on 5/9/2015
    Naviaux's recent study
    Me on 7/12/2014
    Me on 7/12/2014

    Me on 7/12/2014
    Me on 8/4/2014
    Me on 3/29/2015


    From a paper published on 4/2/2015 discussing findings of enzymes involved in muscle contractions in ME/CFS, which is something I mentioned in my first thread on this forum in July 2014. It also discusses a connection to epigenetics which I also brought up previously (see below).
    Me on 7/12/2014

    Me on 7/12/2014

     
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  14. lnester7

    lnester7 Seven

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    The problem with CFS is we have so much broken, and when one starts you don't know the egg from the chicken.
    I had hypothyroid, sleep Apnea, Infections, OI, Colitis, Low NKs, Inmune deregulation....... I mean I was up to 50+ symptoms.
    So, I think it is hard at first to get organized and know what comes from what. Would be nice to do like a tree decision. So if we organize the Symptoms kind of like the ICC criteria (neurological, Autonomic, Inmune...) and then organize the treatments that way (the threads and sections), maybe we can say this treatment is addressing this part then if it doesn't work the next is This one for that section.

    It took me like 3 years to understand the drill. but at first was overwhelming and chaotic.
     
  15. Gingergrrl

    Gingergrrl Senior Member

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    For me it was the most helpful to learn that I have actual concrete autoantibodies and one that blocks the calcium channel. This led to doctors advising me that certain meds could be dangerous. I also know (from trial and error and past experience) which types of meds, dyes, fillers, etc, that I will be allergic to vs. those that are safe. So I have a starting point to work from that I lacked two years ago.

    Pain is not one of my major symptoms although I have chronic arm and neck pain from an injury and probably always will (but it does not stop me from typing or doing what I need to do b/c I am stubborn). My major issues are muscle weakness, shortness of breath, dysautonomia, and MCAS/allergic reactions. My doctors now believe I am in the autoimmune subgroup (or just have some type of autoimmune illness in addition to everything else) so my focus is now on autoimmune treatments to knock down the antibodies and see if this brings symptoms relief.

    I tried anti-virals, methylation, and all types of things that made me worse. I am now much more focused as I have spent two years studying the science (to the best of my limited ability) and am choosing my doctors and treatments much more wisely for my own situation (but of course knowing that it may not apply to anyone else). So I report what I am doing in the hopes it could help others (and get many PM's thanking me for the info or asking me follow-up questions) but never post as if what works for me will work for others b/c we are all so incredibly different.
     
  16. Valentijn

    Valentijn Senior Member

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    @cmt12 - You are using "stress" as a psychological reaction. That is completely different from the research, which is using the term "stress" to describe physiological stressors.

    And none of this relates to your ridiculous claims regarding people's "beliefs" that GET is a bunch of useless bullshit. GET/CBT doesn't work. That can be seen in the research, in patient reports from people with actual ME, in the reports of ME clinical specialists, etc.

    A great many treatments can be ruled out because they are incredibly stupid and completely unsupported by any objective data or even basic biological principles.
     
  17. cmt12

    cmt12 Senior Member

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    This thread was intended to be about bias, about how much of a problem it is in health, and how we can identify and avoid it. Ignoring bias ensures that we are affected by it. As I'll continue to say, based on my experience of navigating through chronic illness with an unknown cause, there is no topic that is more important.
     
  18. frog_in_the_fog

    frog_in_the_fog Test Subject

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    Not sure many people on this forum could carry on a deep discussion of the type you seek due to cognitive impairment.

    I think many of us are driven to initially solve problems through intuition and emotion, since we often lack the ability to fully understand just what is happening to us. So the typical decision making models could just as well be thrown out the door.
     
  19. cmt12

    cmt12 Senior Member

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    While I was just in the shower, it occurred to me that only someone who is obsessed with solving ME/CFS will be able to take on the arduous task of investigating their biases. There is so much resistance to the task that unless our desire is stronger than that resistance, there will always be an excuse or justification for avoiding it.

    The ironic thing is the process of investigating our biases is the same process of solving ME/CFS. It's how I got all of my answers.
     
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