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Time for the Big Talk. How's the CAA doing?

Discussion in 'General ME/CFS News' started by hvs, Oct 26, 2009.

  1. Koan

    Koan Be the change.

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    Brilliant.
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    [slanderous comment removed]

    It was a sarcastic but innocuous comment about what "Phoenix Rising" means- not slanderous; look up slander. The false statement "[slanderous comment removed]", made anonymously by a moderator or Cort, is itself the only slanderous one that was made.

    Kind of like when the Anti-Defamation League here in Colorado was sued for defamation and lost. True story.
  3. Wayne

    Wayne Senior Member

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    Exercise

    Hi Mithriel,

    I would agree with what you say above. A question I have: "Isn't your reference to "naturally increase their activity levels" referring to exercise?

    Perhaps I'm not differentiating between some kind of formalized exercise program, and other normal physical activity associated with everyday living. I tend to consider any physical activity as exercise.

    I don't have the energy to go back and look over all the semantics of this discussion, but it seems some of the differences have to do more with semantics, and less on actual disagreement regarding core principles of exercise (or physical activity) for PWCs.

    Best, Wayne
  4. Dolphin

    Dolphin Senior Member

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  5. Cort

    Cort Phoenix Rising Founder

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    inon the news
    What a breath of fresh air. Thank you Wayne

    Some people have noticed I've removed some slanderous comments about me - about Phoenix Rising is about rising from deconditioning and how I propose that CBT will cure CFS. You may think that's heavy handed but I consider it, considering what I spent my time doing, slander and I'm not going to leave it up there. Of course, feel free to critique, as always, whatever I post - I know that's not going to stop :)
  6. Dolphin

    Dolphin Senior Member

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    Article on the envelope theory from the CFIDS Chronicle

    This is in more formal language to the CFIDS Chronicle article on pacing. Unfortunately, I can't find it on the CAA website

    Full text at:
    http://www.me-cvs.nl/index.php?pageid=3625
  7. Cort

    Cort Phoenix Rising Founder

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    Please remember that the CME states that exercise can be very damaging to CFS patients and that patients should not exercise to the extent that they ncrease their symptoms. So if you couldn't exercise without getting worse -and it sounds you couldn't then they absolutely wouldn't ask you to. For very ill patients they simply talked about 'range of motion' exercises such as moving your arms up and down and grasping things. I assume that's what they would have reccommended to you - hopefully those 'exercises' would not have caused you organ damage.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Cort,

    I realize that writing removes the context of body language and vocal tone and I didn't put a smiley face after my comment, but my comment was obviously intended to be sarcastic and so was Brenda's. Noone, except you apparently, would ever think or believe that I was seriously saying that the actual meaning of Phoenix Rising is 'rising from the ashes of deconditioning.'
  9. Wayne

    Wayne Senior Member

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    Hi Justinreilly,

    I only just started reading on this thread today, and I had no idea you, Brenda, and perhaps others weren't totally serious about the posts that have been made. I pretty much took everybody's words at their face value.

    Wayne
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    OK; to clarify, Phoenix Rising Forum is not all about recovering from deconditioning. I thought this would be obvious.
  11. starryeyes

    starryeyes Senior Member

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    Tom, thank you very much for all your informative posts and helpful links. I'm copying these links to help us work on the CAA Materials committee.

    It's very telling that you can't find this at the CAA website. It looks like they disagree with this kind of information that's actually helpful to PWC.
  12. starryeyes

    starryeyes Senior Member

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    Tom, thank you very much for all your informative posts and helpful links. I'm copying these links to help us work on the CAA Materials committee.

    It's very telling that you can no longer find this at the CAA website when it seems to be materials they created in the past. It looks like they disagree with this kind of information now that may actually be helpful to PWC. I plan to look at it more closely later.

    ~~~~~~~~~~~~~~~~~~~~~~~~

    Justin, I have to say, it wasn't obvious that you were joking to me either plus, I don't think that's something we should be joking about. I think Cort is right for taking those comments down and I'm glad to see that you weren't serious.

    I really admire Cort for allowing us to have these kinds of debates and discussions on Phoenix Rising. I've never seen a CFS forum that allowed this and I'm really grateful for this place and the way it's being run.

    :hug: ((((Group Hug)))) :hug:
  13. Cort

    Cort Phoenix Rising Founder

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    it is
    My apologies then Justin - no harm intended - no offense taken.
  14. Dr. Yes

    Dr. Yes Shame on You

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    But if she (Brenda) was at a state where any exercise would have been damaging, according to the above argument she could only find this out by exercising in the first place! That is, as I put in bold above, she would come to this realization only if she tried to exercise and it made her worse. But if one was in a condition where any 'exercise' that was too much would be damaging, even that attempt would be unsafe.

    Furthermore, you took that bit of the CME out of context:

    As you can see, the grasping and so on is just the 'first step'; after that the recommendation is to increase activity to the point of essential ADL's. What on earth makes them think a severely ill ME patient can "recover" to that level simply by graded activity?? What are they talking about?? Patients aren't bedridden by their deconditioning - which would be the only way to explain the improvement to that higher level by graded activity alone - they are bedridden by the primary disease mechanisms of ME/CFS. (Deconditioning is a secondary effect of any disabling disease). Obviously the author of this section didn't understand this basic concept.

    Being able to handle our own ADL's is a dream for so many of those of us with severe ME/CFS. Believe me, it is humiliating having to be "bathed", or fed, or have your food cut up for you, or helped to walk a few steps to the bathroom. If anything, at all but my worst, I constantly pushed to do things myself to avoid the feelings of shame or helplessness that come with that, but always paid heavily for it. Like Robin described earlier, when I improved it was very sudden, unrelated to any exercise. When I later couldn't sustain the improved levels or crashed, it was sudden; in the former case it really felt like I had been cruising along carefully and then ran right into a wall. There was no more "forward" or "up". And at the same time I noticed I couldn't continue even what I was doing without sacrificing something else (like sitting up to eat lunch). None of this had anything to do with deconditioning, and no graded activity approach could fix it (I tried anyway). It appears that this is the experience being related most frequently on this forum and elsewhere among moderately to severely affected people.

    A doctor reading that section of the CME could easily conclude that the severely ill patient is in this state due to prolonged immobility and deconditioning and should be capable, eventually, through carefully graded activity, to reach a certain level of self-care (ADL's - activities of daily living, btw). That, of course, would be WRONG. And there is no indication in that section that this might very well be impossible and in fact dangerous for many of these patients. So what's that doctor going to think? Especially when he later reads this:

    OK, I will hope for the moment that all of us, including Cort, agree that this is complete and utter bullsh*t, so I will return to the perspective of the average doctor again. He has read the previous stuff, then comes upon the above (which follows immediately after a mild case study), from which it is possible to conclude that "couchbound or bedbound" patients either all have 'kinesiophobia', or that some do (obviously a significant proportion, such that it was worth mentioning at this relative length within the CME). The context of the statement is unclear enough that the former could be the conclusion if the Joe Doctor in question isn't very smart, or is already biased in that direction (or both). But even if only the latter is the conclusion, the damage done to the doctor's perspective on the patient's severe disability is obvious. Even a smart doctor should not have this terrible misinformation about 'kinesiophobia' put in his/her head. It is at least likely to further distort the view that was already being distorted by the passage I quoted previously. It is not reasonable to expect that a doctor will read this section and counter it with quotes selectively pulled from elsewhere in the CME for the very purpose of countering it, as you keep doing, Cort.

    A point on logic, before I go. I have noticed the repeated argument that "doctors will read this and understand properly" based apparently on no data, and another that "I have had no bad experiences with doctors" (implying that the prevalence of bad experiences could be mitigated by a single person's experience). Both of these arguments are on poor logical footing to begin with, but to advance them in the face of many, many testimonials to the contrary is not logical in the least. It is akin to someone saying "I have never been a victim of a crime in my neighborhood, therefore my neighborhood is safe" (or at least has a low crime rate), despite having read story after story in the newspaper about crimes in his/her neighborhood. The correct conclusion would be "I am quite fortunate not to have been a victim of a crime, as I live in a high-crime neighborhood."
  15. gracenote

    gracenote All shall be well . . .

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    Who are the they that you speak of here? It couldn't be the doctors who are just learning about ME/CFS by going through this online course. Because there is no way for you to know that these doctors "absolutely wouldn't ask you to" exercise. Or for you to assume that "that's what they would have recommended."

    I think that is why many of us here are so concerned. We can't "assume" that these doctors will now understand that ME/CFS is NOT LIKE the other illnesses they have encountered. And from the many, many patients here who are telling of their experiences with countless doctors, it would be safer to assume otherwise.
  16. Koan

    Koan Be the change.

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    Yes, Cort, truly, who are they?

    And how can you make this assertion about them with such confidence?

    I don't believe you give any credence to what we are saying. It seems you dismiss us out of hand. Do you think about what we are trying to explain? Why can't you consider there may well be some merit to what we have been saying?

    It is so dispiriting.
  17. Dr. Yes

    Dr. Yes Shame on You

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    Ditto for me. But it is far more dispiriting that this is the CAA's attitude as well.
  18. Wayne

    Wayne Senior Member

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    CAA

    Dear Koan,

    I have to say, I'm feeling fairly perplexed by what I've been reading on this thread. When I first started reading this morning, I was amazed at how upset people were with Cort. Unless I didn't go back far enough, I thought Cort was actually saying some pretty reasonable things.

    I also thought Cort was responding to some of the posts here in a pretty polite manner, especially given that some of the posts directed toward him seemed fairly antagonistic. I just don't see that Cort has not been giving credence to what you're saying, and I also don't get the impression he's dismissing people out of hand.

    I'm not sure why I'm seeing some of these things so much differently than many others here. It's really quite puzzling to me. As I said in a previous post, I don't get the impression that there's much difference in perspective between Cort and what many of you are stating here. It may just be a matter of semantics.

    Regarding the CAA publication, I've not read it, but as with all publications (I used to work in publishing), there's always modifications that can be made to make a better product. I would hope that a constructive dialogue could take place between CAA and those who would like to have things worded differently. Has anybody attempted to contact CAA and try to work out some kind of arrangement? I would think they would appreciate the input and passion that many here feel.

    Warm Regards Koan,

    Wayne
  19. Gerwyn

    Gerwyn Guest

    The best thing about the CME is that no one is likely to read it at all

    Science clearly proves that information is internally represented in accordance with the contents of internal cognitive content and not the content of what is recieved.

    There are hundreds of papers on the subject. I would have thought that the CAA could have found time to read at least one of them

    This is why professional organisations either don't commununicate in this manner at all, or reduce the communication to sound bites or one side of A4.

    There are specific techniques which have been developed to communicate with members of the medical profession

    The CDC have, very cleverly, realised this and are marketing their message aggressively to the people who really count namely key opinion leaders within the medical profession.

    If a commercial company engaged in such amateurish communication methods it would end up facing a winding up order or its directors would be removed by angry shareholders

    Science shows that the CME cannot provide any bebefit to people with ME and also shows that it could do great harm despite the good intentions of the people involved in its construction
  20. gracenote

    gracenote All shall be well . . .

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    Wayne,

    It really isn't just a matter of semantics. This dialog goes back pages and pages. Very few posters have been personally antagonistic towards Cort. Many have shared personal experiences and cautions which seem not to be heard no matter how often or carefully they have expressed them. It is dispiriting. I commend all of you who continue to try. Thank you. I'm learning a lot.

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