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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. Orla

    Orla Senior Member

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    Quick reply to one thing Cort (I am working on something more detailed)

    You wrote:

    I think most people understand your position Cort. The issue for us is that ANY exercise, or even basic activities, can be harmful to some patients. And telling doctors that an exercise programme is theraputic (there is no good evidence for this) is a problem in the context of the real world. Most patients are already at their activity limit so cannot add an exercise programme on top of what they are doing but doctors, even good ones, often don't get this basic and simple fact.

    Sometimes patients can be quite high functioning, and getting regular exercise, and the doctors will still tell them to exercise and that it will help their condition, which makes no sense at all. So clearly some doctors don't think these things through. It happens often enough that it is a problem worth worrying about.

    I think that Dr Yes in his satirical take on Dr Joe got it exectly right as to how at least some doctors would read this document. I think that the document is not strong enough to counteract the prevailing trend to promote exercise for the population in general (which I generally agree with), or the prevailing medical "wisdom" on ME/CFS.

    And loved your take on it Gerwyn.

    Orla

    (CBS haven't read your post yet)
     
  2. oerganix

    oerganix Senior Member

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    IMO, that's a bit extreme. NO doctors have given their lives for PWCs, although some have done a lot for us. And I don't see that they created CAA, CFSAC, PR or any other of those organizations you mentioned.

    Orla didn't accuse Cort of dragging anyone through the mud. She pointed out that Cort accuses, and you agree, that Justin is doing that. Orla's point is that it isn't about Dr Bateman, whom you have defended quite adequately, but about the document on CAA....she's right. FWIW, Justin has already agreed to cool it, and has posted several conciliatory posts, so it seems to be a moot point now. I never took his characterizations of those doctors to be character assassinations, but I can see how someone else might, and I applaud him for cooling it.

    Cort responds quite strongly to ANY criticism of CAA, so he is going to get the opposing opinion, as long as the thread is open. If that opinion is squelched in this thread, another one will be opened to talk about this problem.

    Justin has agreed to cool it...let's all do the same. I know it's hard to do when someone, or someone's post rubs one the wrong way and we seem to develop a history with that person, but let's remember that we are on the same side at the end of the day.
     
  3. Orla

    Orla Senior Member

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    Hi CBS, when I posted my second post there (on criticisms of texts) I was doing it while you were responding to me, so that post wasn't a response to your reply. (I think this is obvious from my last message above, but I thought I should clarify that. The thread is moving a bit more quickly than I am!).

    Personally I would object strongly to this thread being closed. We are having an adult, mature, and calm conversation here (as far as I am concerned). And I think the discussion is useful and important.

    I understand if people want to take a break from it or whatever, but please don't try to stop the rest of us from discussing things.

    Orla
     
  4. CBS

    CBS Senior Member

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    Oerganix,

    I think we may have gotten our wires crossed a bit on this. To be more precise, some of these doctors that have been dragged through the mud (not by Orla) have given their professional lives and nearly every waking moment for decades to people with CFS. From where I sit, the dragging has been done by a lot of posters not just Justin but I wasn't referring to Orla here. The sentence I think you're referring to was intended to point out that discussion about individual doctors (rather than the document) wasn't initiated by Cort or myself.

    As you know, I also say go over ALL advocacy recommendation documents (and feel free to start with the CAA) with a fine tooth comb. Everyone - Just stop the BS about incompetence, lack of experience, hidden motives, etc.
     
  5. Dreambirdie

    Dreambirdie work in progress

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    I have avoided this thread as much as I possibly can, because even when I take a peek at it, it makes me want to cry. :(:(:(
    It's just really painful... like in OOOOOUUUUUUUCH! to see such brilliant and decent humans go at like this. :(:(:( Not just for a few pages of a thread, but for over a THOUSAND pages. :eek::eek:

    Jeez, you guys! I'm all for venting, but at a certain point it's not even a healthy release anymore, just an ongoing vicious circle of irritation and frustration.

    My wish is that you all take a BIG DEEP BREATH, STEP BACK and take some time to reflect about:

    1) what your intention on this thread really is
    2) what you want to accomplish here
    3) and HOW you plan to do that without hurting each other.

    Maybe that's the pragmatist in me speaking, but since we ARE all chronically ill here, wouldn't it be a good idea to ask ourselves what is the best use of our limited energy, and is this ongoing argument the best place to spend it?
     
  6. oerganix

    oerganix Senior Member

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    I agree. Take a break but don't squelch the rest of us.
     
  7. Cort

    Cort Phoenix Rising Founder

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    I agree that most patients do not need an exercise program. I'm doing fine where I'm at and I assume that many people are. I understand that simply having an exercise programme in there is very problematic given our history.

    My guess is, though, that if doctors take this course then they will finally understand how problematic exercise is for CFS patients. They will come away with a new understanding of this subject.

    Let's put it another way. We know that most doctors are misinformed about exercise and CFS - correct? We know that at least some doctors, hopefully fewer and fewer over time, but still a considerable number, think that CFS patients just need to start exercising again. When they hear 'exercise' they think just get on a bike and your troubles will disappear.

    Do you think they would think that after reading this program? Or would they understand that whatever exercise is done should be (a) very limited. ie its hardly 'exercise' (b)that it should fit each patients individual limitations (c) and that it should stop if it exacerbates their symptoms? That's my reading of it. I realize that I'm reading it from a different angle from you.

    I think Doctors would be shocked to hear that many patients can only tolerate anerobic exercise programs. I can't imagine that there is another disease in the world in which 'exercise' is necessarily limited to 'anerobic exercise' for some patients. That's got to be an eye-opener for them.

    That is why, no matter how disturbing the word exercise is, and no matter what horrific memories of prescribed exercise programs are out there, and I know there are horrific memories, I say I think the CME is an antidote to the misconceptions about exercise out there. That whatever its faults and I have found some - that in the broad context of things, that it is helpful to us.

    It clears up numerous misconceptions about CFS - it emphasizes post-exertional fatigue, it differentiates between depression and CFS, it provides many treatment options that traditional doctors would never consider. The Course basically gets doctors off the take an anti-depressant and pull yourself up by the bootstraps theme - and into much more productive territory - for that alone I welcome it.

    I'm saying its perfect; I think even though it does limit CFS patients activities to those that do not make them worse - it has a too optimistic tone to parts of it. If I wrote it I would emphasize more the fact that most patients are overdoing it (they do by the way say that) and more on the limitations of whatever activity program they're discussing. I would add sections on antivirals and pathogens and open up the treatment ledger a bit more. Still I think its a big improvement.
     
  8. Cort

    Cort Phoenix Rising Founder

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    Its fine to criticize the CAA or anyone else and I will point out that I have joined with others in some critiques of the CAA. Please don't think I'm overly sensitive to this issue but I don't respond strongly to ANY critique of the CAA.

    Of course I've been on their side in the great portion of my post but I have noted the problems with the SPARK document and I've noted several changes that I would like to see in the CME - some of which occur in the very activity management and exercise section that I've been defending. There's also my wish that they engage patients more, be more effective in advocacy, be less conservative with treatment options, and basically let down their hair more ;););)

    I know, though, that I'm usually on their side and I can see how that idea would come about it.

    My request was not for Justin to stop critiquing the CAA - just to cool down the language a bit. Justin has lots of fine posts - occasionally in his passion they get overheated. (I'm sure some of mine do as well :)). I appreciate that he's willing to do that.
     
  9. oerganix

    oerganix Senior Member

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    Sorry, the rest of that post wasn't done when it "posted itself"....sorta. In it I mention that Justin has agreed to cool it and I ask that we all do that.

    I agree with the spirit of what you have just posted (stop the BS about....), but forgive me if I'm wrong, you seem to be more upset than your usual self. I hope you're OK and that you'll do what you need to do for yourself and your wellbeing.

    FWIW, I doubt that most of us thought/think that those docs we disagree with on the CAA materials are villains, and if/when portrayed as such, we don't buy into it. (Not to include those from the UK/psychobabble gang, as I'm sure you know I mean.) As such, I don't think any reputations have been damaged let alone destroyed. As I've said before, "experts" can disagree and can change their minds.

    What I don't agree with, from anyone, is that we patients who have also, in a sense, dedicated our lives to CFS, can't possibly know as much or more than those CAA "experts" and therefore WE must have bad motivations, terminal stupidity or other nasty attributes when we disagree with Cort or the CAA "experts".

    As I see it, we are still trying to communicate our points of view, in good faith. I include everyone when I say "we", you, Cort, everyone, we are trying in good faith.
     
  10. Gerwyn

    Gerwyn Guest

    excercise medical definition and purpose

    efinition
    Exercise is physical activity that is planned, structured, and repetitive for the purpose of conditioning any part of the body. Exercise is utilized to improve health, maintain fitness and is important as a means of physical rehabilitation.
    Purpose
    Exercise is useful in preventing or treating coronary heart disease, osteoporosis, weakness, diabetes, obesity, and depression. Range of motion is one aspect of exercise important for increasing or maintaining joint function. Strengthening exercises provide appropriate resistance to the muscles to increase endurance and strength. Cardiac rehabilitation exercises are developed and individualized to improve the cardiovascular system for prevention and rehabilitation of cardiac disorders and diseases. A well-balanced exercise program can improve general health, build endurance, and delay many of the effects of aging. The benefits of exercise not only improve physical health, but also enhance emotional well-being.
    A study released in 2003 reported that exercise combined with behavioral therapy may even help manage the symptoms experienced by Gulf War veterans. Specifically, exercise helped improve symptoms related to fatigue, distress, cognitive problems and mental health functioning. In the same year, the American Heart Association released a statement saying that exercise was beneficial even for patients awaiting heart transplants. Another study showed that women who participated in strenuous physical activity over a number of years could reduce their risk for breast cancer. Finally, research showed that men and women age 40 to 50 who exercised moderately for 60 to 90 minutes a day were less likely to catch a cold than those who sat around.

    Definition and purpose of medical treatment

    management and care of a patient or the combating of disease or disorder.
    directed immediately to the cure of the disease or injury.

    Now Dr JANE/JOE are medically qualified.

    Three guesses as to what the words excercise and treatment mean to them

    The art of communication is not what message is delivered but excercising control over how it is recieved!
     
  11. Cort

    Cort Phoenix Rising Founder

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    I agree that we all have something to contribute and we have and the CAA has shown the willingness to bend and change several times. I think part of it is a matter of tone - that sometimes physicians have not been treated with a respectable tone. This would be particularly hard to take if you know and being treated by and have respect for a physician.

    Critiques - reasoned critiques - are always valuable. They're valuable on different levels. I think that the exercise programme on the CME is pretty darn good and I don't think it should harm people but its very clear that no one wants to hear about an exercise programme. That is the last thing, given our history, that they want to hear - even if its a good programme that does attempt to clear up the misconceptions of the past.

    I don't really want to hear about one either! As I stated its not a concern for me personally - which is one of the more bizarre things about this thread. I don't know whether to laugh or cry. :tear::tear:
     
  12. CBS

    CBS Senior Member

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    Oerganix,

    Personally, I'm pleased to hear that everyone has agreed to back off with the heated rhetoric for a while. Personally, I stayed away from this thread after the first few hundred posts. I wasn't comfortable with the tone. I jumped back in when I saw what to me were very unfair attacks and innuendo directed at someone I know and respect (Dr. Bateman). She's not my doctor, I watched her in SLC for over a decade. I've attended numerous talks she's given. I've questioned her on some of the very issues she was being criticized for and I can say with all confidence that her personal understanding of the dangers of excessive activity are second to none (see my posts about her sister). No one without CFS has given more and no one is more open to learning from her patients.

    It was at that point that I felt I couldn't let the innuendo stand unchallenged. This thread was starting to look like a mob with torches and pitch forks headed off the hang anyone and anything indiscriminately as I was reading comments that had no basis in reality (not referring here to anything about the danger of exercise).

    I don't want to be a part of this thread any longer but there are members here that I don't trust and I don't feel like I can leave without leaving the door open to more unchallenged and unreasonable accusations leveled against people that I KNOW TO BE OTHER THAN THEY HAVE BEEN PORTRAYED AND TRUST AND HAVE VOLUNTEERED (WHAT PRECIOUS LITTLE ENERGY I DO HAVE) TO WORK WITH and not just because they are nice. And that pisses me off.

    Personally, I view the attacks in this thread as even more of a threat to my own well being than exercise recommendations (I not going to exercise no matter what anyone says) as they endanger what I see as critical research and the willingness of a wider body of researchers to enter this cluster of subject.

    For the CFS community, I see the dangers of exercise recommendation being of equal importance but not for me. Still the attacks and innuendo do nothing for us as a community
     
  13. Orla

    Orla Senior Member

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    Hi Dreambirdie, we are just debating and not at one another (as far as I can concerned). If you cannot deal with the more "argumentative" threads there is no reason really to read them, or read them if having a bad day or whatever.

    I have only joined in this thread relatively recently, and people are coming in and out of the discussion.

    Personally I am not venting but trying to get across critically important points. I know others are doing this also. People can get frustrated when they feel they are not being heard, especially when their personal circumstances are very bad (and some people's circumstances are worse than others. This is not a judgement on anyone, as it sucks for all of us, unfortunately some people experience more problems in the world than others).

    You asked some important questions:

    It is always important to try to prioritise, and examine the best use of energy. I run groups so have plenty to do, and try to avoid what I think are futile internet debates. If I thought I was totally wasting my time I wouldn't post here. I could be wrong in my judgement, maybe no heed is being taken of the warnings I am trying to give (along with others). But I feel I must try.

    The issue I have been debating here primarily is the CME material. This is to educate doctors. I don't even live in the US but see this as an important enough issue to discusss. I think there are some potentially harmful and misleading statements in the document. I think these need to be changed. So I am trying to get across here what I think could be the effects of parts of the document and why they need changing.

    I do hope to go through the material properly and point out the most problematic bits and why.

    Orla
     
  14. oerganix

    oerganix Senior Member

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    Good, better, best

    Now we are getting to the crux of what we don't agree on.

    Let me repeat what I think you are saying. "This is BETTER than what we had before. Doctors are reasonable people so they will be re-educated about PEM, exercise and activity, the absense of depression."

    My opinion is, yes, it IS better than before, but only because what was there before was SO bad. Being BETTER doesn't make it GOOD.

    I don't agree that they will be re-educated. Maybe we will just have to disagree on this point. You seem very optomistic about this possibility, while I and other have had personal experience that has taught us just the opposite. Where some have had their feelings hurt is that it seems like you dismiss these personal experiences as meaningless. I don't really believe you are that insensitive, not at all, but that it how it sometimes comes across....when you get very abstract and theoretical when people are "witnessing" to us, their very non-abstract experiences. I don't want to go too far in interpreting Dr Yes, but I feel that was how he felt and why he turned to humor to soothe HIS hurt at what seemed a dismissive attitude.

    My other objection to your conclusion that this is good because it's better: I've read hundreds of pages of studies on exercise, as others have done (I really recommend "Magical Medicine" by Malcolm Hooper if you haven't read it...very cool, organized, factual, with just the right touch of irony and dry English humor) and I am convinced there is no good scientific evidence that supports any benefit to PWCs....none at all. As I've said before, we are already doing all we can and we don't need anyone to tweak our physical activity. It's all been inherited, and thus tainted, by the SW/its-all-in-your-head bunch. Any attempt to modify that inheritance still has the odor of it...recycled BS still smells like BS.

    What I want is the BEST. I, and those who see it as I do, think that the BEST (at least for now) is that there be NO mention of exercise at all. We think the docs will still get it wrong and any real or imagined benefit to even one person is not worth the very real harm that will almost certainly be done to more than one PWC if/when this exercise advice is poorly given. We think it is BEST that docs be taught that CFS/ME is so very different from all other illnesses that any exercise is contraindicated at this time.

    Maybe in future there will be tests that can tell a doc or PT which patients have the physical capacity to benefit from more activity. Until then, we want them to DO NO HARM.
     
  15. Gerwyn

    Gerwyn Guest

    CBS the dangers of EXCESSIVE activity is not the point we are talking about patients that can be permanently damaged by MINIMAL levels of activity which most GPS would not even think of as any form of excercise whatsoever.
     
  16. Cort

    Cort Phoenix Rising Founder

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    I get what you're saying Gerwyn. I'll just leave it that the CME program is very careful not to have CFS patients increase their symptoms with exercise, etc. and that any doctor who does happen to read it, and follows it's recommendations will NOT do that.

    I think doctors who take the time to take the CME program will change their views on exercise - you think they may just continue on.

    You know what I think one problem has been is that..... I say this program is different and some people respond by saying "Exercise! I've been killed by exercise programs in the past'...and I try to show how it is not like those programs.....and they state ...you know my life is misery NOW because of that damn exercise program I took. I then take offense because then I'm thinking they're saying that I'm suggesting that they do another horrific exercise program[..which makes me really defensive.

    So I try to even more show how this program is different.... and they think 'well, what the *(&(&! he's just not getting it - he believes all exercise is good!" And I think, of course, I get it.....having been down that road before.....I'm just trying to say that this programme is not like that...that is very, very mild, etc.....that if it makes you worse then don't do it....etc. and then I get a thread like Dr. Yes's which suggests that I don't realize that exercise can have serious consequences for CFS patients and that just makes me crazy. Obviously I've engaged in this the wrong way - if I'm going to get posts like that.

    Anyway I get where you're coming from. Its a problematic area and I can see how you would prefer nothing to be said about it.

    Maybe with Dr. Lights cytokine and receptor testing and Staci Steven's exercise testing protocols and the cortisol testing from that researcher in Spain we'll finally be able to define physiologically when to start and when to start.

    I would note that Staci Stevens has such a program. Its relies on a heart rate test - and a similar heart rate test is actually in the CME document. It gives a heart rate formula that patients can use to not surpass an given heart rate. That's pretty physiologically based

    My opinion on the program differs from yours. I'm sure that a doctor could sit down to take the course and then ignore or basically defy what it says. I grant that thats possible but I would think that the great majority of physicians would read it and learn from it. That's why I think its valuable and helpful for us.
     
  17. CBS

    CBS Senior Member

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    Gerwyn,

    In my book, ANY activity that causes damage or even temporary dysfunction is excessive. Do we have to parse every word as though it were a personal slight or an attack? Have you read any of my responses to your posts? Enough!
     
  18. jackie

    jackie Senior Member

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    orla...im totally lost and cant seem to even FIND the cme material now (ive been trying - ended up on medscape...that cant be it) i keep googling etc, no luck. can you point me in the right direction again..as I intend to spend as much time as necessary to read all (that is if i can - or is it only available to med. profs.?) for all i know it's right here staring me in the face - and i'm too foggy to see it!

    i came into this discussion quite late in the game...but was working off of some of the links and others personal experiences as well as my own to reach the conclusions that i did (and which i still hold, btw!)

    so..i do have a problem with the material (as has been DESCRIBED to me)..but once again...i have a problem feeling confident that the material/warnings etc. will be noted/respected by the average (which many of us rely on to be treated by) doctor (not good or bad - just average, NON-me/cfs specialists)....so it's important to me to understand exactly HOW/WHY MY doctors will/would have access to the materials in question.

    thanks!...jackie
     
  19. oerganix

    oerganix Senior Member

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    OK, now I'm hearing something else important. The matter of trust. I hear you. I have the same feeling about some posters...not you...not anyone we've been talking about.

    In retrospect maybe I should have spoken up when those posts came up that troubled you. I didn't because I dismissed the posts you object to as hyperbole, didn't think most others would believe them to be the literal truth because I didn't.

    I also understand you wanting to stand up for those you respect when it seems like there is piling on of the "school yard bully" mentality. For me it's not so important to do that, past the initial supplying of the facts, because I have noticed that, just as there are those who flock to celebrity and jump on the bandwagon to bask in the associated spotlight (not accusing you of doing this), there are also people who, when they see a "fight" want to jump in and land a few punches, too. I don't appreciate either type of behavior, especially online where we can so easily be misinterpreted, but I see it as a regrettable part of human nature and I tend to ignore it. Not saying that you should ignore it, but now that you have defended Dr Bateman and others, you have done the honorable thing and I don't think you owe anyone any more than that.

    Could it be that you are substituting yourself for Dr Bateman, since you say you feel these attacks are a threat to your wellbeing? I'm sure Dr Bateman has weathered opposition and controversy before and can take care of herself. I can assure from personal experience that one loyal, well reasoned message of support can neutralize a hundred negative rantings, as yours here have surely done for her.

    I really hope that you will take care of yourself and that you will take a break from this thread, as it seems to be stressing you out a lot. I promise you, in the threads that I take part in, I will, in future, pay more attention to those mob attacks and comment on them. So take a break, leaving the door open to come back whenever you feel like it. I'd hate to have you crash and not be here with us. Come back Shane, when you feel better.
     
  20. michal

    michal

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    I also ask myself why CAA dont put some money for XMRV research. The six announced studies look interesting but if there is a chance that XMRV is the main cause of CFS, the CFS research capacities should put their effort on it , I know that the science goes sometimes slowly but I have impression that in this case it s only because of missing money and bad coordination between research organisations. If XMRV is the reason, a lot of CFS research organisations are losing their time with inefficient research. if XMRV is not the reason WPI is losing their time. We need to know the answer as soon as possible to move the things faster.
    Anyway maybe its also mistake that many people here are already sure that XMRV is the cause. I dont want to imagine the disappointment of many CFS patients if it will not be true.
    But I hope even if it can be really bad viruse with difficult treatment it would be better for us if it would be the cause. without knowing reason there cannot be effectiv treatment
     

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