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NICE : "Do not do" recommendations for (not) treating ME/CFS

Discussion in 'General ME/CFS News' started by Valentijn, Apr 3, 2014.

  1. barbc56

    barbc56 Senior Member

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    The above being a prime example of brain fog.

    I'm not sure evryone will get the phrase "I feel your......". Is this just an American phrase? I can't even remember it's origins. (runs strolls to computer to do a search on Google.):)
    Last edited: Apr 3, 2014
    peggy-sue likes this.
  2. alex3619

    alex3619 Senior Member

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    I completely agree. The frequent failure of bureaucracy, academic and clinical medicine to admit "I don't know" is responsible for serious problems. I hope to write a lot about this in my book, which is on complete hold at the moment as my cognitive capacity has declined to circa 2006 levels. Without taking into account uncertainty, and especially the unknown, the bureaucratic need for certainty creates severe obstacles for progress.
  3. leela

    leela Slow But Hopeful

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    Wow, that list is basically the green light for criminal medical negligence.
    Cheshire and Valentijn like this.
  4. alex3619

    alex3619 Senior Member

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    Here is the problem: a doctor who follows those guidelines has a defense against criminal negligence, although I think a good prosecutor could demolish that defense if they wanted to.
    Valentijn likes this.
  5. NK17

    NK17 Senior Member

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    @SOC I'm afraid you can't reason with ignorant, inhumane bureaucrats/A*/ H$@&*, can you?

    By the way my ME/CFS doctor here in the US avoids writing in his patients files or using the code for CFS, he is that smart ;).

    Too bad I have a wastebasket list of diagnoses in my file at the major university hospital that is the only one approved by my very restrictive new insurance policy.

    Shall I try and eventually fight to get it removed?!
    Last edited: Apr 3, 2014
  6. SOC

    SOC Moderator and Senior Member

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    Why not? ;) It's on my bucket list to try to get depression out of my record. We'll probably be fighting hopeless battles, but heck, what else do we have to do with our time and energy? :rolleyes:
    NK17 likes this.
  7. Mij

    Mij Senior Member

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    I respected every single doctor I saw in the last 23yrs who told me sh/e didn't know enough about this illness to help me but ruled out all the obvious things.
    vamah, Valentijn, peggy-sue and 2 others like this.
  8. peggy-sue

    peggy-sue

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    No scientist is scared or frightened to admit they were wrong, science has never claimed to be anything other than "the best available knowledge so far".
    If new, better knowledge comes along - the old has to go. Science is a process.

    This is a very important basic tenet of science... one the psychiatrists don't recognise.
    alex3619, Sean, biophile and 3 others like this.
  9. NK17

    NK17 Senior Member

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    I also respect the few doctors I saw in the last 3yrs, at least the ones who are making sure that I don't have or don't develop another serious condition.

    What makes me mad is the status quo that we as PWME have to go up "against", in other words how are we going to get better when there are no doctors, or close to none (about 12 in the 50 United States) that is knowledgeable enough to try to help us?

    That's why I remain vigilant and skeptic towards any doctor and many of the so called diagnoses, such as fibromyalgia, since IMHO, in many cases, they are just a label for a symptom, albeit an important and very debilitating one, that has no well proven scientific background.

    My heroes are the Dr. Montoyas and the Prof. Davis (both @ Stanford), because they are brave enough to say that the medical/scientific community will have to formally apologize for what they haven't done for us and they emphasize the cardinal fact that no real clinician/researcher should be afraid, at this time, to learn, listen, study and practice in the ME/CFS field.
    Mij likes this.
  10. NK17

    NK17 Senior Member

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    I totally and completely agree with you @peggy-sue.

    Real Science is self correcting, the rest is pseudoscience and with that we'll go nowhere!
  11. biophile

    biophile Places I'd rather be.

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    Science should be self-correcting, but egos and ideologies are usually not self-correcting without humiliating smackdowns.

    Anyway, going back to the 'do not do' recommendations. Most of it is about testing and medications, but:

    Good.

    Notice how they state "slight" increase in symptoms, which does not sound too bad. However, for people who already need prolonged rest due to symptoms, a slight increase in symptoms can have a significant impact which requires more rest.

    For some of us, CBT and GET have imposed rigid schedules of activity and rest, yet NICE recommend CBT/GET. An example of the 'flexibility' can be found in the PACE Trial manuals, where exercises must not cause a significant decline in function (which for most of us means not doing anymore than we already are) and if symptoms arise from an increase in activity then try to tolerate them for a week or so before giving them up (which for most of us in unwise).
    peggy-sue, Valentijn and alex3619 like this.
  12. alex3619

    alex3619 Senior Member

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    Oh, it can go somewhere all right. The question is which circle of Hell does it lead people to?
    SOC, peggy-sue, leela and 2 others like this.
  13. NK17

    NK17 Senior Member

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    The circle of being condemned to a living death ...
  14. Snow Leopard

    Snow Leopard Senior Member

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    It is bizarre that they suggest no MAO inhibitors when the evidence base suggests the opposite - that SSRIs are ineffective in depression in CFS and MAOIs are the most effective. Likewise, there is also evidence that suggests that corticosteroids have some modest effectiveness at the right dosage (not too high!).

    So why aren't their recommendations evidence-based?
    Valentijn and peggy-sue like this.
  15. alex3619

    alex3619 Senior Member

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    I think in Dante's Inferno that would be purgatory.
    SOC likes this.
  16. Sean

    Sean Senior Member

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    As they say, all knowledge is tentative.
    alex3619 likes this.
  17. peggy-sue

    peggy-sue

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    Snowleopard makes a point I want to make - why no MAOs? Why no steroids?
    It's not as if I want them, or think I need them - I just want to know why they are "contraindicated" in "CFS/ME".
    Valentijn likes this.
  18. alex3619

    alex3619 Senior Member

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    That is the whole issue that arose out of correcting the mistakes of nineteenth century science, which was hung up on laws of nature. Psychiatry often uses nineteenth century scientific methodology and thinking. Its hung up on empiracism, the collection of facts to support their conclusions, while permitting and ignoring contrary evidence.
  19. A.B.

    A.B. Senior Member

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    I must object to this choice of words. Empiricism simply means observation of reality and is pretty important when it comes to deciding whether a hypothesis is correct or not. In the context of CFS/ME, psychiatry is failing to observe the reality of CFS/ME properly. Their view of CFS/ME fails the reality check but they're unable to admit it.
    NK17 and peggy-sue like this.
  20. Katherine

    Katherine

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    My doctor also employs this tactic. He describes my condition as long-standing fatigue of uncertain origin (along with other symptoms), therefore he is compelled to investigate.
    NK17 likes this.

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