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POTS Is Actually Deconditioning

Discussion in 'General ME/CFS News' started by PhoenixDown, May 30, 2013.

  1. PhoenixDown

    PhoenixDown Senior Member

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    http://www.clinicaladvisor.com/should-deconditioning-be-a-stand-alone-diagnosis/article/274538/

    Here is the paper it references: http://jp.physoc.org/content/590/15/3413.full

    Sound familiar?

    PS: For those that don't know me, I do not agree with these author's conclusions, I think their evidence is lacking, and we all know where we've heard this story about similar illnesses, before.
    alex3619 and snowathlete like this.
  2. xchocoholic

    xchocoholic Senior Member

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    I wonder what it feels like to be this stupid ?
    Snowdrop, MeSci, SpecialK82 and 9 others like this.
  3. WillowJ

    WillowJ Senior Member

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    funny how they forgot to consider sudden-onset OI while people continue to perform normal activities
    xchocoholic, Allyson, ahimsa and 3 others like this.
  4. Kina

    Kina Moderation Team Lead

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    I didn't think it was possible.
    ahimsa, Shell and xchocoholic like this.
  5. taniaaust1

    taniaaust1 Senior Member

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    The issue is POTS "can" be caused by deconditioning or prolonged bedrest. **sighs** Unfortunately there seems to be a push towards "all" POTS is deconditioning which isnt true.

    At one point I was exercising at night when it was cold and with wet clothes.. I think it was winter too (as getting warm triggers off my POTS so this was the only way at the time I could do on feet exercise) for TWO HOURS per day (doing a run, walk, run thing), I did that for a couple of months but I STILL had the same severe POTS after those couple of months, I still couldnt just "stand" for very long at all. I certainly wasnt deconditioned at that point!!

    When will they accept that there is an illness.. ME in which POTS is often present, may be due to autonomic damage due to a viral attack or whatever (it is known virus's can cause POTS). I think this is a huge hundle the medical profession needs to get past as even when it becomes very recognised that many ME patients do actually have something called POTS which can be severe, they are still going to try to blame "deconditioning".
    biophile and Simon like this.
  6. Allyson

    Allyson *****

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    And thn there are the many many people who nevr do ANY exercise all their lives apart form walking to the car and back and do not get POTS/OI.

    And why do top elite superfit athletes get it?

    It is also a condition in older people too - where did this myth start that it is primarily a disease of young people?

    80 year olds canand do have it. They were often just never diagnosed earlier
    xchocoholic and ahimsa like this.
  7. xchocoholic

    xchocoholic Senior Member

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    Evidently. And there's even people out there who'll publish garbage like this. X
    Allyson likes this.
  8. Kina

    Kina Moderation Team Lead

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    Morbidity refers to the state of being diseased or unhealthy.
    Mortality refers to the incidence of death or the number of deaths in a population.

    So Joyner is saying that physical inactivity and lack of exercise not only causes illness, it also causes death.

    Physical inactivity alone may contribute to some illnesses but there are a huge number of variables involved. One does develop obesity by physical inactivity alone. One does not develop diabetes by physical inactivity alone. One does not develop Cancer, MS, Alzheimer's etc from physical activity alone. Physical inactivity does not necessarily mean you will develop POTS either.

    He's got it backwards when it comes to illness. Most illness causes deconditioning because it's hard to be active if you have a serious illness. Even with many acute illnesses you become deconditioned during the time you are ill. A week in bed with the flu can cause muscle loss etc.

    He needs to figure out the difference between lifestyle choices that lead to deconditioning and that deconditioning can be corrected by making different lifestyle choices. He needs to figure out that deconditioning as a result of illness can only be corrected when you eradicate the underlying illness.

    In all my years as a nurse, I never once say a person die of inactivity. I have seen many die but from their disease which caused them to become inactive due to severity of the illness.

    Exercise training will work for those who are deconditioned related to lifestyle factors. For example, take a person who is quite sedentary, overeats but otherwise healthy. If they start an exercise regime, pay attention to nutrition etc they will end up feeling better.

    Take a person with Cancer. As the cancer progresses, the person becomes more and more sedentary which leads to deconditioning. That's right start an exercise regime, you will be alright (sarcasm).

    More sarcasm to follow:

    Take a person with ME. You are deconditioned and it's all your fault because you are hypervigilant and merely think you can't exercise. Just think yourself better. Instead of getting out of bed and falling flat on your face. Just think "I am not going to collapse, I am going to jump out of bed, skip through the house yelling 'thank you Dr Wessely and Dr Joyner, thank you, thank you for your thoughfulness in providing us with a cure.' After that you can start exercising and you will experience a radical and miraculous recovery in your health. Do these morons not realize that ME is not a lifestyle choice. Yup, I am purposefully choosing NOT to contribute about 80,000 dollars per in wages I could be earning, I purposefully chose to lose most of my friends gradually, I am purposefully going out and catch every infection going so I can lie around all the time with fevers, I make myself have painful muscle spasms and I think myself into peripheral neuropathy. I poke myself awake all night on purpose just so I can't sleep. Yup it's all my fault, I perpetuate my illness with all sorts of crazy behaviour because I want to stay ill because I reap so many benefits from it. My life is so much better since I got sick back in 1997. NOT!
    MeSci, xchocoholic, SOC and 7 others like this.
  9. SilverbladeTE

    SilverbladeTE Senior Member

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    Kina
    *nods vigorously in agreement!*
    yeah I'm just imagining that once I was a big strong guy, who did weight training and martial arts
    now I have "less testosterone than a 90 year old man", to quote the consultant, and...other problems
    oh yes I CHOSE to be a lazy bastard and IMAGINE all this...yup it's the result of deconditioning!
    /sarcasm mode off

    I FREAKIN' DARE any smug stupid SON OF A BITCH to say it's "deconditioning and hypochondria" to my face!
    :devil:
  10. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    After 15 years of no exercise, I don't even think I'm remotely deconditioned. My body looks the same, my muscle tone has never changed and I'm still really 'fit' probably fitter than many healthy people. I'm just really ill!!! I know this because in the past whenever I've found something that helps temporarily, I almost 'snap back' to the way I was without any 'graded' anything.
    Deconditioned... MY ARSE!!!! and anyone who says that to my face can kiss my FIT arse!!!!!! these people are enough to make anyone sick!
    Valentijn likes this.
  11. lnester7

    lnester7 Seven

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    I have documented going from bed to walking 3 miles next day. I go to the gym about everyday. I still crash but I still have OI even though I work out (and not lazily). Not counting I am a normal person when I get my periods or colds.

    I wanna know who is the lazy one for not doing the homework right.:mad:
    MeSci, Allyson and Valentijn like this.
  12. snowathlete

    snowathlete

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    Why doesn't every old person who is unable to exercise get POTS then?
    redrachel76, MeSci, Allyson and 2 others like this.
  13. alex3619

    alex3619 Senior Member

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    Here is the basic reasoning that most babble follows: It might be true, therefore it is. Evidence, reason, scientific scrutiny seem to be lacking in these arguments. There is little doubt that some people with OI (in general) can improve with increasing muscle tone in the legs. "Some people improve with exercise" is not proof that "its all deconditioning". Thats irrational. Its right up there with "some fatigued people improve with exercise" being conflated with "exercise is good for anyone who is fatigued". To put it another way: If some, then all (or most).
  14. alex3619

    alex3619 Senior Member

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    None of their theories take into account our occasional sudden reversal to full function. Its like it never happens to them. Sure its rare that it happens ... except of course those who go into full remission. Deconditioning hypotheses have been debunked repeatedly in ME, but they keep reappearing. These myths propagate to any disease that are not understood ... because they might be right (if you haven't properly investigated), therefore they will treat them as right.
    Allyson and Valentijn like this.
  15. WillowJ

    WillowJ Senior Member

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    the fascinating thing is, it's not even necessarily true that obesity is generally linked to morbidity or mortality.

    http://www.nytimes.com/2012/09/18/h...ters-more-than-weight.html?smid=tw-share&_r=0

    This article focuses a lot on fitness/lack of fitness as a measure of health, but it mentions other things like genetics, catabolic state, bias against patients who are overweight, and insulin resistance.

    The interesting part to me is that assumptions doctors make don't necessarily hold true.

    unfortunately they don't link to or specifically cite particular studies, just mention them vaguely, though with one or three author names
    Allyson, Valentijn and ukxmrv like this.
  16. alex3619

    alex3619 Senior Member

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    Hmmm, I think that obesity is associated with both morbidity and mortality, but also that the association is complex. Sumo wrestlers are abese, but they are fit, and don't get the problems that many obese people do. Its not as simple as being heavy, its about all the other issues too. Fitness is critical ... fit overweight or obese people do not have the same issues. Of course that does not help us much with our limitations on exercise.
    WillowJ likes this.
  17. Allyson

    Allyson *****

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    yes i agree there is so much more to it and that speicfic stidies should be cited

    the theory that we all once knew to be "true" was that too much salt in the diet cause hypertension cardiovascular problems etc - so everyone cut back on the salt in their food.

    I read someone recently - forgot who now alas - who said he went to investigate it and COULD NOT FIND ONE SINGLE PUBLISHED PAPER OR STUDY that supported this theory!!
    so some proper research would always be a good idea when people make vague claims like this - so many elite athletes get ME/cfs/POTS/OI that is seems frankly impossible.
  18. Oh its just deconditioning? Oh thank god, for a second i thought all those blood tests that showed my immune system was working about as well as the Hindenburg meant i was actually sick. What a goof. I just suddenly became deconditioned over the course of a few days, as a 19 year old college student who had spent his entire life from age six on playing sports and working out. That's how deconditioning works right? It just sneaks up on you like a ninja and bam. Deconditioned. What a hilarious misunderstanding on the part of all my doctors.
    Sidereal, MeSci, ahimsa and 4 others like this.
  19. alex3619

    alex3619 Senior Member

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    The argument about salt is based to a big extent on known mechanisms linking salt and potassium. Sodium can cause a loss of potassium, and potassium is important for keeping blood pressure low. However it is not clear what other homeostatic mechanisms are involved. As is often the case when complex processes are reduced to simplistic claims a lot of important issues are lost in the argument. Reductionism has its value, its essential to science, but it has its limits too.

    What is clear is that iodine deficiency has been rising in this country, and probably others. Iodized salt is one way to get iodine, though the commercial salt in food is typically not iodized. Most of us need to eat more salt, just not the refined commercial variety. Other minerals in sea salt may have beneficial effects too. Just as not all oils are the same not all salts are the same, yet the simplistic public health message ignores this.
    helen1, MeSci and Allyson like this.
  20. Allyson

    Allyson *****

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    Well said - as usual - Alex; I have been having salt cravings for years - probably siince i first started cutting back for "health" reasons - now know to be spurious.

    I also have a benign goitre so tried to increase my iodine but nothing seems to affect the goitre and my thyroxine levesl are always on the lowest limit of normal.




    Cheers

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