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POTS Is Actually Deconditioning

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

  1. Valentijn

    Valentijn Activity Level: 3

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    Funny how it's always psychologists and psychiatrists using that explanation. They know absolutely nothing about the biological processes of deconditioning, but still push it with great conviction. Whereas the orthopedists and even most physiotherapists know how ludicrous such a theory is.
    SilverbladeTE likes this.

  2. I know right? Its almost like their profession stands to gain from a new client base if they can just convince the world its what said potential client base needs. Strange. Really a kind hearted group of people those medical professionals.

    I hate knowing that people are out there trying to profit from our illness. They are like vultures picking at a dying person, when they should be trying to help us by admitting what is so obvious, which is that nothing about this condition is mental. We seem depressed at times? How odd. Its as if we have an illness for which there is no known cure, is hell to live with, and is generally ignored by the people who could really help us. What a group of bummers we are that we don't seem more cheery.

    It seems to be pure ego when it comes to that sect of medicine, they come off as too arrogant to admit that their methods are about as useful to us as silent movies are to the blind. I go see a therapist, and after a few visits he told me that if i was looking for treatment, there was nothing he could do for me because i seem perfectly sane, well adjusted and rational to him given my situation. He said all he could help me with was the burden of dealing with a chronic illness. I feel really lucky because as far as i can tell he is a rare to non existent breed. The people at the Mayo Clinic were the worst, they were visibly disappointed when i passed their psychiatric evaluation.
  3. Allyson

    Allyson *****

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    And of course the simple fact is that if it is i deconditioning then regular exercise will fix it - so do that study - it does not fix it in us ....so do the math.!

    Or show us the people that it cured please.
  4. Allyson

    Allyson *****

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    Hi YOung stick and welcome

    could not agree more

    and in fact i thnk the opposite may be true - a lot of people who they say are depressed actually have ME - those physical "crashes" that seem to come out of the blue could well be ME crashes that they have not identified the cause for.

    But just the other day on another site a woman who went to her GP for a referal to a great POTS/OI specialist she had been recommended was refused it by the GP...............
    "I am NOT your agent "she told her

    GP then proceeded to refer her ( without her asking) to her good mate psychiatrist who told her that "50 per cent off docs don t believe in "CFS'"
    and "everything starts in your brain, even pain.....(so pay me 250 an hour for interminable sessions while i "fix" you!.)

    Vultures indeed ...she now has a new GP and the referral to the POTS specialist for some real treatment.
    Young&sick likes this.
  5. alex3619

    alex3619 Senior Member

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    [Sarcasm] Perhaps its a morale problem on the Hindenberg? The crew need a holiday, or antidepressents, or to be replaced with a cheaper crew who will do what they are told. If the engines are not working then we need to give more counselling to the engineers. If anybody is complaining its a flight risk, or too flammable, they need to be investigated for serious delusions ... they need therapy.
    SilverbladeTE and Young&sick like this.
  6. alex3619

    alex3619 Senior Member

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    If you ask to show you people who were cured they will trot out their occasional patient who is better, without giving proper evidence for either diagnosis or efficacy of cure. What they need to do is cure almost everyone in a large controlled study. They also need to not claim a "cure" by redefining things ... like the PACE trial did with "normal" and "recovered". We then have to scutinize the study very very carefully, because people make such claims have, in my personal experience, produced some of the sloppiest studies I have ever read. If they presented something typically along these lines to me as an essay when I was a uni lecturer, they would have scored a big F.
    Allyson, WillowJ and Valentijn like this.
  7. WillowJ

    WillowJ Senior Member

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    right, and the flip side is that normal weight or skinny people are also not necessarily healthy as it is assumed. Of course, when it gets really bad skinny then people assume one is sick, but if it's not outrageously bad then it's just assumed that one is a runner or whatever.
    Allyson and alex3619 like this.
  8. alex3619

    alex3619 Senior Member

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    The first time you talk with normal weight or thin type 2 diabetics is an eye opener: prevailing dogma says these people do not exist, yet here they are.
  9. biophile

    biophile Places I'd rather be.

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    Psychobehavioural-babble is often due to deconditioning of reason.
    alex3619 likes this.
  10. alex3619

    alex3619 Senior Member

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    I really liked this line! :)
  11. alex3619

    alex3619 Senior Member

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    Seems like they need to go back to school to learn logic and reason then, exercise their reasoning talent gradually, and recondition their beliefs about evidence, reason and fallacy.
  12. Kina

    Kina Moderation Team Lead

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    I am reading an excellent book right now called 'How Doctors Think' by Jerome Groopman MD.

    There is a lot in the book about applying logic and reason and the errors doctors make in this regard. There is also a lot about how doctors make snap judgements about patients which hinders a proper diagnosis. The thinking processes they are taught in medical school is also addressed. Its really interesting and refreshing that a Doctor wrote the book and is pointing out all the errors that doctors make everyday.

    The book begins with a detailed description of a woman who was misdiagnosed for 15 years as having purely psychiatric problems because her symptoms were 'all in her head' -- even to the point of being hospitalized on a psychiatric ward. It turns out she had Celiac disease. That sounds quite familiar.
  13. Allyson

    Allyson *****

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    Good point Alex - maybe we cona do our own study and prove that we are NOT cured - oh no that would be too painful. I worked out every day for 3 years and got no imporvenment at all - in fact i think it made me worse. WOuld not want to put anyone trhougth that again. And iwas also extremely fit when i got ill.

    But if they are not diagnosising us or even looking at people who get ill and when they do - how can they claim anything about theses ilnesses with any scientific validity?
    Yes a lot of people deserve to get F...d in my opinion.... sorry i mean get F...s
    alex3619 and merylg like this.
  14. alex3619

    alex3619 Senior Member

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    Critical Thinking in Clinical Practice
    Improving the Quality of Judgments and Decisions
    By Eileen D. Gambrill

    This is a book I recently bought along similar lines. It discusses hysteria very early on. Unfortunately I have not finished it, nor am I even close ... its very very long. I think this one is written as a textbook for medical professionals.
    Kina likes this.
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Not sure if you're referring to me, but I am one of those who strongly doubts the 'salt is bad' claims. Almost every scientific paper I have read on the subject estimates salt intake from urinary sodium rather than blood sodium - why, I don't know. Many people suffer from sodium deficiency due to natriuresis - excessive sodium excretion in urine. So many of those with high urine sodium, who are being assumed to be consuming excessive sodium, are actually probably sodium-DEFICIENT due to natriuresis.

    I discovered in 2010 that I was one of these people, and have been dangerously ill with it twice. I have not had a recurrence since increasing my salt intake.

    Salt is essential.
    golden likes this.
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Conversely, if you have ME, or severe heart disease, and probably numerous other conditions, over-exertion can kill. Like that poor man who was turned down for UK disability benefits and died shortly afterwards while cleaning his car. He was trying to be active as the powers-that-be said he could.

    And I realised after my hospital stay in 2010, when I finally worked out what had caused the hyponatraemia (low blood sodium), that overexertion could kill me by causing hyperlactaemia leading to loss of lactic acid in urine along with sodium.

    I just wish that these quacks would get one of the illnesses they prattle on about so we can watch them try their own medicine.
    Sidereal, golden and Valentijn like this.
  17. Kina

    Kina Moderation Team Lead

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    There is a good article regarding the 'salt is bad' reseach here
  18. Desdinova

    Desdinova Senior Member

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    The thinking that all POTS must be deconditioning is right up their with thinking that everyone with a high BMI is overweight.

    Where I work they offer $250 additional dollars added to your HSA account if you take the entire health fair that's offered at the start of every year. This includes blood work, BMI work up, Checking the attires in your neck for blockages etc. Along with an intrusive health survey.

    You get sent your results in a tidy packet a few weeks latter along with a health plan on improving you health based off your test results (that includes the intrusive health survey you filled out). Two weeks after you get your packet you get a call from your assigned health coach. One guy I worked with is a weight lifter and extremely health minded. Every two years he does the test to measure his body fat to muscle ratio.

    So last year he gets a call from his assigned health coach who tells him that his tests / results are good except one. And they want to see him evaluated by a doctor for stress and depression based on his health survey questionnaire that he filled out. And they questioned his responses to certain questions in the questionnaire about exercise and diet.

    They told him he needed to be honest about these to help address his High BMI. Puzzled he inquired "So you think I'm over weight is that it? I can tell you for a fact I'm not over weight." Only to be told his BMI was in the morbidly obese range. He would tell them that he had taken a muscle to fat test one year ago and told them the ratio. He was still told that he needed to resolve these and received the same annoying phone call for months.

    Finally he complained to the Personal Benefits director in PR. She notifies the company nurse who notifies the company doctor. The doctor faxes them a copy of his last test showing his actually body fat ratio. The Doctor also faxed photos of him posing in only workout shorts. The phone calls stopped after that. Seems seeing is believing. And assuming just makes...well you know.
  19. WillowJ

    WillowJ Senior Member

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    Those screening surveys are very interesting. They often put questions like the following in the depression/anxiety section and nowhere else:

    are you tired?
    do you have low energy?
    do you have trouble completing tasks?
    do you have a lack of concentration?
    do you have low appetite?
    do you have trouble sleeping?

    I want to know... do they really think anxiety/depression is the only reason in the world they might want to know about people having issues with concentration, lack of appetitive, vitality, fatigue or weakness or both, trouble sleeping, and having trouble with activities of daily living?

    I tend to answer "yes, but not from this"
    Valentijn and Desdinova like this.
  20. Simon

    Simon

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    Few comments after reading the article:

    Theory without the evidence:
    Like every assertion of deconditioning-caused problems I've seen (excluding the case of extreme bed rest), this statement comes without any referenced evidence. I've been looking for such supporting evidence for over a year without any luck, though have found the same unsupported argument used in numerous illnesses.

    Many studies (though not all) in CFS and other illnesses have looked for deconditioning and failed to find it, though that hasn't dampened enthusiasm for the theory. Specifically, a study by Peter White of CFS patients enrolled in a Graded Exercise programme found patients were not deconditioned, and the minor gains in exercise capacity they made during the study did not correlate with improvement in their CFS.

    The article specifically includes CFS:
    Exercise is the answer - ALWAYS:
    Again, evidence for this is lacking, or not cited by the author.

    As for the specific study on training POTS patients, I've not yet read the full text, but judging by the abstract the results are not spectacular. However, says the author of the opinion piece, 'with prolonged training, even more dramatic improvement [note not cure] of symptoms is possible', citing "personal communication" - ie unpublished findings. Hardly compelling.

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