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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. jackie

    jackie Senior Member

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    well I read the cme doctor education material...several times. (thanks orla, for making it easy for me)

    Under clinical pearls": "Avoid overexertion and UNDEREXERTION, both of which have adverse medical consequences." (my bold...sorry if this has already been posted)

    I think my doctors might like this as it's what they keep telling me (warning me), over and over - they call it de-conditioning. My days of FEARING the "consequences" of underexertion have long passed. It's my life.
  2. starryeyes

    starryeyes Senior Member

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    Glad that's working for you now Cort. In my case, typing is way easier for me than talking out loud.
  3. starryeyes

    starryeyes Senior Member

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    I agree!

    xxxxxxxxxxxxxxxxxxxxxxxxxx
  4. Cort

    Cort Phoenix Rising Founder

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    I'm sure there is not agreement on all these issues; I'm just pointing out that the CME is very mainstream in its approach....that its not different from what several prominent physicians recommend or even the IACFS/ME organization, as Orla pointed out - which is now international. Yes, Bruce Campbell does focus on pacing but that exercise section was straight from the exercise section, not the pacing section, in his book. He actually had, I thought, the best take on the whole thing as one would consider that he would because his work focuses so much on so determining what patients can and cannot do and slowly improving their functioning. I thought he was a bit more discerning and careful than the rest but, nevertheless, the recommendations were there.
  5. Cort

    Cort Phoenix Rising Founder

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    Mondesi
    I don't know what to say WildDaisy. I really meant it when I said that I think the CME program is 'an antidote' to those bad practices. I recognize the problems with any 'exercise' program. I recognize that it's a very complicated and dicey issue. I also think that if you're going to change those opinions that this is the way to do it. And by taking a look at other physician's books and talks on the Internet - its pretty clear that it's really out there anyway.

    I really think that any physician with half a brain who reads the CME will understand about the problems the physical exercise poses. That program describes in such clarity how physicians in the past have misunderstood 'exercise' and how damaging it can be that I really don't understand how the majority of them could come away not getting that. I really don't.

    Let's say most physicians coming to that program with the wrong ideas about exercise. We can say that can't we? They know CFS patients are tired but they don't have a clue how bad it is or what happens to them when they exercise. The program to its credit starts off with a discussion of post-exertional malaise and it hits postexertional malaise repeatedly throughout the document - so they've already learned something important; there's a strange problem in chronic fatigue called postexertional malaise they've never heard of in another disease that prevents patients from engaging in much activity.

    Lets say that 20% of the physicians somehow miss the point about exercise and they keep doing what they've always been doing, That still leaves us with 80% who now know that it must be done very carefully, that it should only be done when the patient has enough energy, that it should never make the patient feel worse, and that it should be done at very low levels regardless. I think that's really significant progress - I think overall that helps more than it hurts.
  6. lansbergen

    lansbergen Senior Member

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    I would not bet on that.
  7. jackie

    jackie Senior Member

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    orla, imo your assessments of some of the differences in the US way of viewing this, are correct! Many here in the US will be seen by a Rheumatologist for a dx of Fibro (not sure about quidelines currently, but some years back "we" were told that exercise could help with fibro - NOT with cfs...making it difficult to figure out treatment for a patient with both!) In my case Rheumy=FM, Neuro=me/cfs, I.D. Doc= confirm classic viral onset me/cfs, chronic enteroviruses/chronic shingles

    And orla and teej...dr. chia does "get it" re: exercise/activity! (my doc)


    Gracenote...must find a way to get you a Gold Star AND a sucker!
  8. starryeyes

    starryeyes Senior Member

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    Cool Jackie. That's great about Dr. Chia. I always think of that commercial, "Ch ch ch Chia!" when I hear his name.

    I have to hear that I need to exercise every 3 months too because I'm on Disability. So those of us who are bad enough to be on Disability hear it the most and are the most likely to suffer from it.

    The CAA may be mainstream but that's the problem! If the mainstream represented us we wouldn't have this issue with our doctors and the public. We need a Patient Advocacy Support Group that actually cares about the real issues for us and does what they can to try to educate the doctors and public about the seriousness of Post Exertional Exacerbation of Symptoms. (PEES) .. hmm .. not sure about that acronym either... lol
  9. jackie

    jackie Senior Member

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    Me too, teej...been on total, permanent disability since 2000 (and it wasn't that easy for us to get, back then - and i was approved on the first try...literally no questions asked. BUT - you ARE accountable for continuing dr. visits etc.)

    I always see those strange "Chia Pets".....the crazy little creatures with plants growing out of them! Fortunately the "real deal" is far from strange! If not for his care...i wouldn't be posting here.
  10. Dolphin

    Dolphin Senior Member

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    Great. :Retro smile:
    Dr. Chia has lived with it because of his son which I think can make a huge difference (as I said) in terms of understanding the issue - but not all the time.
  11. Cort

    Cort Phoenix Rising Founder

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    but, but, but he sputters! The CME is full of warnings about posting exertional malaise and the CAA Biobank requires that CFS patients have postexertional malaise in the other study. They're the first ones to do this. I really think you're both on the same playing field regarding this issue?
  12. starryeyes

    starryeyes Senior Member

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    The CME is full of advice to doctors to use CBT and GET on us. That's the problem.
  13. Dolphin

    Dolphin Senior Member

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    For anyone who is interested in some more information from this paper, I posted some at: http://www.forums.aboutmecfs.org/sh...ibition-and-post-exertional-malaise-in-ME-CFS on PR.
  14. Stuart

    Stuart Senior Member

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    Well done! :Sign Good Job:

    The full text of

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:
    Clinical Working Case Definition, Diagnostic and Treatment Protocols

    Bruce M. Carruthers, MD, CM, FRCP(C)
    Anil Kumar Jain, BSc, MD
    Kenny L. De Meirleir, MD, PhD
    Daniel L. Peterson, MD
    Nancy G. Klimas, MD
    A. Martin Lerner, MD, PC, MACP
    Alison C. Bested, MD, FRCP(C)
    Pierre Flor-Henry, MB, ChB, MD, Acad DPM, FRC, CSPQ
    Pradip Joshi, BM, MD, FRCP(C)
    A. C. Peter Powles, MRACP, FRACP, FRCP(C), ABSM
    Jeffrey A. Sherkey, MD, CCFP(C)
    Marjorie I. van de Sande, BEd, Grad Dip Ed

    Journal of Chronic Fatigue Syndrome, Vol. 11(1) 2003

    Can be found at http://www.cfids-cab.org/cfs-inform/CFS.case.def/carruthers.etal03.pdf

    It would be nicely paired with

    Defining CFS: Diagnostic Criteria and Case Definitions
    April 14, 2010
    Leonard A. Jason, PhD DePaul University

    http://condor.depaul.edu/~ljason/cfs

    If the CAA missed the first paper while writing their materials, they can hardly missed the Jason presentation, they hosted it! :cool:


  15. Dolphin

    Dolphin Senior Member

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    There is a lot to praise in the full "Canadian" guidelines.

    But it is long for the average doctor to read. And there are some bits I have some doubts about.

    I prefer the Overview:
    http://www.mefmaction.net/Portals/0/docs//ME-Overview.pdf

    They added some things and didn't include the bits I had problems with.
    Here's something they added:
    [​IMG]
  16. Stuart

    Stuart Senior Member

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    How about this bit from Vicki Carpman formerly the editor of The CFIDS Chronicle (CAA) writing about a Conference in Los Angeles in 1998:
    3. Exercise Intolerance


    It is widely documented that exercise is an exacerbator of CFIDS symptoms. Drs. Mena and Goldstein presented a series of SPECT scans which showed extreme hypoperfusion (reduced blood flow) in the brain following exercise. There appeared to be "holes" where blood would normally be flowing -- the degree of hypoperfusion was astonishing. Even 24 hours later, cerebral blood flow was severely reduced.

    Cerebral hypoperfusion is not the only result of exercise intolerance. Drs. Lapp and Goldstein referenced irregular tidal volume rates common in PWCs. Hyperventilation and shallow breathing are frequent results of exertion. Normal controls breathe irregularly at the start of exercise, but respiration becomes regular over time. Dr. Lapp reported that PWCs breathed more regularly than controls at the outset, but during exercise their breathing was more variable. Dr. Goldstein concurred, "This phenomenon has never been described before in any population and, as of now anyway, we think that it's a diagnostic marker for CFS."

    Neuroendocrine responses were often reversed or blunted in the Cheney-Lapp study. Cortisol, epinephrine, norepinephrine, DHEA levels and body temperature normally rise with exercise, but PWCs were found to have lower than expected measures of all of the above. Dr. Goldstein related this phenomenon to limbic dysfunction, as altered levels of interleukins and nitric oxide (NO) can result in altered neuroendocrine responses to exercise.

    Dr. Lapp and Dr. Kathy Sietsema reported that PWCs reached anaerobic threshold much sooner than predicted. Anaerobic threshold (AT) is the point at which a healthy person becomes completely fatigued and cannot exercise any longer (commonly called "hitting the wall"). In the Cheney-Lapp study, PWCs continued exercising beyond the point of AT. Dr. Cheney has hypothesized that PWCs normally perform above AT in everyday activity due to a metabolic injury, and therefore are more accustomed to performing at this level than controls.

    Source: http://immunerecoverywellness.com/pdfs/cancer/CFIDS_Brain.pdf
  17. Dr. Yes

    Dr. Yes Shame on You

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    Cort -

    I think it would be more productive not to respond here to your reply to my post. For that I prefer private communication or a discussion on a thread dedicated to such purposes. (See my previous post).

    Back to normal dealings...

    Cort:
    (1) Your estimated percentages border on hyperbole, if the experiences documented on this forum and elsewhere are any indication. I don't think reading this CME could alter significantly (or at all) that kind of widespread recalcitrance and dogma.

    (2) Even if we were to consider your estimations to be accurate, do you consider it acceptable that the 20% of "resistant" physicians reading the CME will now have additional information - from a CFS advocacy group no less - to convince them that they are right and to further deflect their patients' arguments? Surely, that is unacceptable damage.

    (3) you forgot that the CME contains all that drivel about kinesiophobia, avoiding activity, "underdoing it", etc, that could negatively influence any physician's perspective on ME/CFS patients and activity or exercise. I don't know why those parts were ever allowed in the CME. Surely the First Commandment of any ME/CFS advocacy group is "Thou Shalt Not State or Imply That Any Part of a PWC's condition is All In Their Head!"?

    Cort:
    You are saying, essentially, "I don't think many physicians are like that." While lots of others have been saying "trust me, I have HAD many physicans like that!" Perhaps without a controlled study we cannot prove that all those physicians would still be 'like that' after reading the CME, but it is safer to conclude from the many documented experiences that a very significant number still would be.

    Furthermore, the CAA is supposed to be OUR national advocacy organization. We don't have to settle for 80% understanding (your rhetorical guess-timate). We can have our cake and eat it too, to repeat a cliche. Why can't the CAA make it clear enough so that 100% will understand it? I don't want to risk anyone getting hurt. Of course the CAA can't stop all the iatrogenic harm that goes on out there, but they can at least do the simple things right - such as make physician education material that is aimed at that 100% effectiveness, taking into account the realities of physician bias, misconceptions, or lack of wisdom (the polite way to put it! ;))
  18. Dolphin

    Dolphin Senior Member

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    When clinicians (or anyone else) merge CFS and FM together to give exercise advice, I generally don't trust them. Some people with Fibromyalgia clearly don't have the exercise intolerance problems associated with ME/CFS.
  19. Dolphin

    Dolphin Senior Member

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    This is a line I'd like to see with pretty much any mention of exercise for CFS.

    Then many people can point out that they are not in a position to do this (drop other activities in lieu).
  20. Dolphin

    Dolphin Senior Member

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    Just to point out that nobody is stopping you. You have the guidelines from the doctors there.

    The one thing about exercise is that one doesn't need a prescription or FDA approval. One doesn't need a big bank account ... and yet, so many people are still sick - strange that.

    Of course, if one doesn't have the illness, one can also think it might work - but you can't test it out yourself - and one can easily think there is a flaw in the patient for not at least trying.
    And one will very likely think the patient didn't do it correctly if they say it didn't wrk or made them worse.

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