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The CAA Pamphlet to Educate Doctors

Discussion in 'General ME/CFS News' started by starryeyes, Dec 24, 2009.

  1. Dr. Yes

    Dr. Yes Shame on You

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    War and Peace

    Hey folks,

    So many of you have done an outstanding job on this thread already. I think Mithriel, among others, explained the exercise issue in ME/CFS beautifully...better than anything I've read from any of the famous CFS docs or the best the CAA has printed. Island finn posted a great little summary from an Australian ME group on another thread, too.

    I've posted this elsewhere, but it's more appropriate here...For those who still feel the terms CBT or GET are appropriate, I urge you to watch this four-part video, which features the amazing Trudy Chalder and Mrs. Simon Wessely, who like her husband is also a psychiatrist who denies that ME exists (it's great that they found each other):

    http://www.youtube.com/watch?v=bvArXvqAMiA

    They have so corrupted the meanings of traditional psychological terms and of the terms CBT and GET that none of them are useable anymore. Furthermore, as others have said, even the "good" versions are inappropriate for many of us. Perhaps hearing all the others here and elsewhere on this forum, those of you who were defending the promotion of CBT / GET in CAA literature or anywhere else now understand that there is a good deal more to your own disease than you previously understood, and more to it than the CAA seems to understand, and that a HUGE overhaul of patient and doctor and institutional education is long overdue. That's partly what I meant by the "last straw" comment, Cort. It's not like all of us have been silent til now, it's that we have been ignored, or that nobody bothered to ask.

    In the UK there is a group called the 25% ME group. I mentioned them in another thread and gave bjsmith from the CAA their web address, etc. Just google 'em. They're a national charity group dedicated to providing information, outreach, and support - including financial and physical assistance - to ME patients who are housebound or bedridden. They are a small group, with nowhere near the resources of the CAA (the comparison is laughable). There is no group like that in the entire United States. The CAA rarely mentions people at this level of disability - estimated in the UK at 25% of the ME population, hence the group's name - in its literature on exercise. And it makes NO mention of those of us who can do no exercise at all - not in its literature to doctors, certainly! (And you don't have to be bedridden or housebound to be completely exercise-intolerant, as others have said here.)

    Cort, you stated that:
    If I understand this statement correctly, you're saying that everyone with ME/CFS can do some level of exercise? But if exercise itself is precluded by a patient's health, then, obviously, even a careful exercise program will be harmful. I am frankly shocked that you were not aware of this. But more shocked that people in the CAA were not aware of this. Both you and they, as advocates who actually have a voice and a capacity to influence others, have greater responsibilities for what you say. To you I ask that you please research before you write on this topic or you are doing damage - indirect or not, I don't think the distinction matters - to people who are desperately ill. I recommend you start by contacting the 25% ME group for information.

    To the CAA I say the same thing but with greater urgency, and add that 'research' means first inquiring of your own constituency, and surveying patients of CFS doctors, to find out the truth. (If they say they already did that, then I hate to say it but they've done a lousy job!)

    Back to Cort:
    You need to re-read what I said, and not reinterpret my words. I even went back and highlighted the argument! Here it is again: Peter White is a psychiatrist who fervently believes and promotes the idea that our disease is totally, completely, and utterly psychosomatic. No viruses, no cytokines, no nothing. He has described those doctors you mentioned - Peterson, Klimas, etc - as 'enablers' of our delusion that we actually have something wrong with us. He lobbies doctors and government health policy makers to discourage patients from getting help from support groups or advocacy groups (like the CAA) or from seeking specialists or even laboratory tests to see if they do have something physically wrong with them.

    So, if the CAA leadership knew who Peter White was but still decided to go ahead and endorse him to OUR FUTURE DOCTORS, what would that make them?

    The key word there is "knew". You could argue that the people at the CAA responsible for that brochure, and for general and continuing oversight, all have no idea who White is. I don't want anyone that ignorant holding a position of that importance in my only major advocacy group. Do you? Others have and will continue to point out how impossible it is that this was done out of sheer ignorance. Someone had to know. That suggests that someone at the CAA is on the wrong team. (NOTE: I did NOT say the WHOLE CAA, I said "someone".) But I'm not even dealing with that.... WHEN the leadership of the CAA is made aware of this shocking contradiction, if they do not immediately remove that brochure and check all their other literature to make sure there are no other "boners" out there and (perhaps) issue a retracting statement intended to reach doctors who have already seen the brochure....then yes, the CAA, as defined by its leadership, would be in a state of absurd self-contradiction. That's how I meant it. I did NOT say that the good things the CAA as a whole has been responsible for would be negated. But how could we take them seriously from that point on in this scenario?

    Sorry to have kept pounding at that point, but I think you were failing to see the significance of that "little mistake". There are mistakes, and then there are specific actions that betray either subversion or major organizational incompetence. If the NAACP sent out brochures to Congressmen on the issue of affirmative action that included a sidebar by David Duke explaining that he is unjustly 'demonized' and really does have some good ideas on how to reduce inner city crime... that wouldn't be a mistake, nor sloppiness; that would mean there's something very wrong back at the NAACP. (uhh..for you folks across the pond or in Canada, David Duke is a white supremacist who became a Louisiana state representative in 1989. Yes really!)

    I hope after reading all you've read since you wrote that you realize what a confused statement that is. And I hope that you now see the real big picture - that far more people with this disease are far more debilitated than you or the CAA ever realized. That's a HUGE part of the picture you were missing -- bigger than you or me, bigger than the CAA. That's what most of the arguments about CBT and GET are actually about. That's why for many of us this brochure was not a minor detail, not one of a few scattered mistakes, but the last straw after years of a very simple reality being ignored by an organization of vital significance, and by the medical establishment at large. See why it was such a big deal that this was a CME -- a release to educate doctors?

    I know that you are passionate about defending the CAA, and I understood your reasons as you explained them. But I really hope from this debate -- which is healthy, folks, and has to be heated at times when whole lives can be ruined so easily -- you and others have come away knowing more about this horrible disease that, oddly enough, unites us. The CAA is important, but we need you more than they do, Cort. I could really use your help in telling them about me, and about the many others they clearly aren't aware of. Please use that determination to spread this larger awareness of the disease that seems to have escaped even some of our most prominent doctors.

    That's only a request, of course; I would never demand of you more than you are physically capable of doing. ;)
  2. Robin

    Robin Guest

    Sure. I'm not in an official program or anything, I just use the technique promoted by Bruce Campbell. Campbell was a moderately ill patient who had designed CBT programs for other illnesses before getting ME/CFS, and he decided to create one for himself.

    CBT is just taking a moderated approach at your inner dialogue in order to influence your behavior, and it can really be anything.

    He says, "So the beginning of my journey was the brute fact that CFS had imposed severe limits on me, changing my life perhaps permanently and certainly for an extended period of time. My focus would have to be on adapting to those limits."

    He goes on to figure out what helps him and what hurts him, and concludes that avoiding relapses is crucial to helping him feel better.

    Campbell: "The first challenge was to determine what I could do to reduce the length and severity of my relapses. The number one answer was to rest. Staying in bed until I felt better was the quickest and surest was to improve. Stating that obvious truth to myself was helpful because it gave me permission to acknowledge that at times I was powerless over my illness and the best strategy was to give in to it. "

    So, he encourages patients to be disciplined with pacing, adhere to a schedule of regular rest periods, and be active only at levels that can be sustained, or to stay within their "energy envelopes". Even if you feel good and you want to do a lot in one day, the CBT part would be to think about how you would feel if you relapsed.

    Campbell: "I also hoped that I might be able to extend those limits gradually by making small changes."

    He defines "exercise" can be any activity that is performed out of bed, even though he was able to do gentle walking for his exercise. You stick to your daily schedule and when you feel able you add a small amount of activity, and then through record keeping make sure it hasn't made you worse. If you can incorporate a 1% or 2% increase in activity, then that's your new envelope. You do it on your body's schedule.

    This summer I relapsed from moderate CFS to severe; I couldn't leave my bed except to use the bathroom and eat meals (sometimes). My first "exercise" was sitting in the living room and watching CNN for 10 minutes. Then back to bed.

    There's a lot more to the protocol but that's the gist. Campbell recovered fully from CFS but acknowledges that many people don't, and his goal is to help people improve and cope. From what I understand, his protocol is quite different from what is done in the UK.

    Hope that helps. It's helped me a LOT. :)
  3. Martlet

    Martlet Senior Member

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    First of all, it is not a UK version of GET and CBT that I was thinking of. I thought I had made it really, really clear that I don't support exercise "programs". Again, that is not what my doctor suggested to me, but that I should do what I comfortably could and then add more as and when I was able. For me, that generally meant minimal housework in short bursts, a few minutes at a time and then resting before doing a little bit more. Back then, I couldn't walk a hundred feet without my legs totally cramping. Also, I said that it was not these therapies that helped me improve but that self-understanding enabled me to cope with my limitations and that being as active as I comfortably could prevented deconditioning. That is hardly amounts to me thinking that it's just fine for our American patient advocacy group to be promoting the British version of CBT and GET and I am not sure they are.

    Until this thread, I had never heard of Dr. White. Wessely was a already a villain when I fell ill, seventeen years ago, but I do not remember Dr White at all. Since leaving the UK and eventually (okay, no comments) dropping my subscription to CAA I have been very much out of the loop until now, so I assumed (wrongly, it seems) that he was promoting the same sort of thing my own doctor suggested to me.

    But that still leaves us with all the other ME/CFS doctors who also believe that some exercise is necessary. If they removed White from the pamphlet, we would still have consensus that some activity is good for us.

    I have a very close relative in the UK whom I suspect has ME/CFS. She certainly has enough symptoms, but I only recently told her of my suspicions and told her that I did not recommend her trying to get a diagnosis at this point, but rather to keep going to see her different specialists and having these various symptoms treated without connecting the dots because, as I told her, she risks a psychiatric label and totally inappropriate treatment. Why would I have told her that if I thought that what they are doing over there is good for us?
  4. starryeyes

    starryeyes Senior Member

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    Ooops....thanks for pointing that out.
  5. Martlet

    Martlet Senior Member

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    I hadn't read that before but some of his words jumped right out at me. Thanks for the link.

    I have had a 13-year remission, with some symptoms remaining and with an annual mini-crash with my flu shot but this year a lot of things have conspired to throw me back to the very early days, so I needed the reminder about envelopes and graph-keeping. And what you describe - like sitting up to watch CNN for ten minutes - is very much how I see "excercise". First find your limit and live within it, then test, trying gently to increase by just a little at a time.
  6. Mithriel

    Mithriel Senior Member

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    Robin, you describe what you do as a technique. I have no problems with techniques.

    I do take issue with Cognitive Behavioural Therapy. The word therapy implies that something is wrong and needs treated; that our thoughts are wrong and our behaviour is wrong.

    Diabetes is continually floated before us as a physical disease where CBT is accepted, not dismissed the way we do, yet when I was diagnosed with diabetes a few years ago, I was given lifestyle advice from the diabetes nurse and a large pile of leaflets covering diet, eyes, feet, medication and so on, as well as one from the national diabetes patient group.

    I did not need therapy, all I needed was information. I go back every few months and I get checked and can ask questions. I am asked how I am doing mentally and if I wasn't coping I would be sent for therapy. I would be treated for mental ilness consequent to a chronic, incurable disease

    I do not see why this sort of information on lifestyle change is not enough for the average patient with ME or CFS. Therapy is only necessary if someone can't make the required changes to thought processes or if they are not coping.

    People who are told they have terminal cancer are not routinely sent for psychological therapy so why do we need babied as if we can't take control over our own lives?

    Information for new patients, monitoring and treatment as required is what we need in exactly the same way it is offered in other illnesses.

    Mithriel
  7. PoetInSF

    PoetInSF Senior Member

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    I'd agree with this. However, while the risk can be extreme, the benefit should not be underestimated either. I've been walking bi-daily ever since I was able to get out of the bed, and I had my share of crashes while trying to push the envelop. Now a days, I stay within my limitation. Still, it has improved the quality of life vastly, enough that now I think I can live like this for the rest of my life if I have to. (I don't have to hike/bike as I used to; I can stay home read/write and annoy fellow CFSers with contrary opinions as long as I'm not sick).

    Does the benefit worth the risk? I suppose you get different answer if you ask different people. For me, the answer has been a resounding yes. And I think the risk can be reduced if you make it the goal to improve the quality of life rather than to recover.
  8. starryeyes

    starryeyes Senior Member

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    I thought they did a great job in the beginning but then they and Klimas bizarrely changed their tune.

    I don't see it as just sloppy. They contradict themselves completely in just this packet alone. I guess we do disagree on this then.

    So I looked it up: http://cfids.org/resources/patient-ed-cbt-fsheet.asp

    Lying on a couch would make far more sense for us. As to intimate details... well.. I just don't want to go there so I'm glad they don't want us to but do they realize that many of us are grilled about such things by the psychiatrists that our Disability Companies force us to go to when we're applying for Disability? I know this happens in the UK too because the movie and book The Wedding Gift shows this very thing happening to a woman who gets ME and it's a true story.

    Here's the clip I'm talking about at YouTube which illustrates the very way PWC are treated in the UK and the USA and every other country from what I have read. This is Part 3 of The Wedding Gift and it's at 7:50:

    http://www.youtube.com/watch?v=_p_UE6nY2z4&feature=related

    So, the CAA doesn't really know that yes, the medical professionals do interrogate us on personal matters and yes, they do draw erroneous and horribly wrong conclusions about CFS patients and this happens in the U.S. too.

    Oh my.... this probably sounds very reasonable to healthy people. This would be impossible for me or anybody as ill as I am with CFS.

    No, see that's what they don't understand. CFS doesn't work like that. If this works for you as it once did for me when my CFS went into remission after the first 6 months then fine but this doesn't work as a rule for most PWC or even the same PWC that it may have at one time. This is what makes me angry. This the kind of misinformation that harms us.

    Okay... I'm gonna stop there. I just can't take this piece on as well right now in it's entirety. The CAA are harming patients. Period. They don't realize it. They don't get it. This is extremely frustrating.

    No I don't. And I'm very glad about this. However that doesn't change their educational materials that damage us nor their British psychiatric-like beliefs and propaganda about CBT and GET for CFS.

    Well we both clearly agree on that! :)

    Yes. I agree. This is very apparent by reading the literature they put out. The problem is that those patients who know how seriously severe CFS can get aren't well enough to run patient organizations. Those who can are either very healthy or mildly affected with CFS if they have it.

    Amen.

    That makes sense.... someone or some of the members. There may be more than one but one is all it would take.

    Bravo Dr. Yes on your last post here!! Thank you so much for articulating so well what many of us have been feeling.

    Robin, thank you for posting about Bruce Campbell here. I've read your post and glanced at his page so far and plan to read it more in depth. So far, his information looks good. :)

    Martlet, I see what you're saying here and I agree with it. :)

    Very well said. THAT is exactly what we need to do when in the severe stages of CFS. BRAVO!!
  9. hvs

    hvs Senior Member

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    We have a number of facts:
    1. we have a small study from Pacific Fatigue Lab that shows exercise is (maybe) uniquely injurious to CFS patients
    2. we have anecdotal evidence from folks like Poet (which I do not discount) that some of our fellow patients have managed, within limits, to increase their capacity for activity, even if highly circumscribed.
    3. we have a lot of documentation of horrible VO2 max scores among very many of us which shows our exercise capacity to the equal of Montgomery Burns.

    But the reason some of us are concerned about the focus on CBT and exercise in the physician education pamphlet is not related to facts 1-3. It's because CFS is an intensely political disease like AIDS, cervical cancer, and others. We can never--our political organization the CAA can never--forget that, even when talking to physicians. We can never lose sight of the fact that there are individuals and institutions that would love to capture the disease definition and turn it to their own purposes and beliefs.

    So when the CAA signs off on a document with a focus (among other focii) on exercise, yes, it is a instance of politics. It is a moment with the potential to tip things towards the Wessleys and Simons of the world or the legitimate CFS researchers of the world. It is imperative that our political organization never legitimize a document that can be interpreted as abetting those who argue--despite a preponderance of evidence--that CFS patients are "fetishizing" the illness experience and, in fact, are simply de-conditioned and need to exercise.
  10. fresh_eyes

    fresh_eyes happy to be here

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    So, um, how is the CAA funded?
  11. Robin

    Robin Guest

    Hi Mithriel,

    First, I don't think every patient needs CBT, I just meant to point out that it can be helpful and patient friendly for patients who want to try it. ME/CFS does not come with an instruction manual. After over a decade with this illness I found that sometimes I still need help.

    But in no way should CBT of any kind be mandatory!!

    Also note that CBT is not talk therapy or psychological counseling; they're different birds. It's more of a way to help change habits. Smoking cessation, for example, employs cognitive therapy.

    Yes, Campbell's protocol is a technique... of behavior modification. Behavior is not wrong or right, with ME/CFS some behaviors can influence better health or exacerbate symptoms. Campbell believes that pacing and scheduled resting is helpful, and overdoing promotes relapses.

    The CBT part is used to reinforce the behaviors. (You can't really employ cognitive behavior therapy without some type of target behavior.) I gave an example of the CBT in my earlier post, but, here are more:

    Campbell: "... I believed that pacing offered my best chance for long-term improvement, I developed several strategies to help me live consistently within my limits.

    Perhaps the most useful was to visualize how I would feel if I went outside my envelope. Imagining the fatigue and brain fog provided a counterweight to the immediate pleasure I anticipated from doing something that took me beyond my limit. I pictured and felt the consequences of doing too much by imagining myself lying in bed in pain."

    That's CBT.

    In this example, he talks about coping with the losses imposed by ME/CFS:

    Campbell: "I was able to replace resentment about not being able to do all that I wanted to by focusing on what I could do. I consoled myself with the idea that half a loaf is better than nothing. "

    There are more examples but again, that's the gist.

    I hope that explains a little bit.
  12. valia

    valia Senior Member

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    Hi Countrygirl, sorry I missed your post yesterday, I was just looking for a link I saw somewhere here and spotted it.

    I saw the CMO update to GPs, it is really unfortunate for those who have managed to get their GPs on side (not many have), they will probably have their treatment withdrawn now. It makes no difference to me, as my GP provides no treatment for M.E. or Chronic Lyme disease, I have the choice between CBT/GET or nothing and I have chosen nothing. I buy my own antibiotics and a few supplements when I can afford them.

    Well, I am a very calm bunny today and can appreciate better the many intelligent posts here, so I think I may take the time to read some of them again.

    Best wishes.
  13. Martlet

    Martlet Senior Member

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    TeejKay - The Wedding Gift was first shown on British television not long after I fell ill, and I think it is a brilliant depiction of the illness, but it took place during the Seventies. By the time I became sick, in 1992, things had changed, depending on which doctor you had. My friend fell ill in 1990 and had a superb GP who was as up to date as anyone on ME. Another friend - a nurse - came down with it after I did, and she too had good doctors. The ones who suffered - and I emphasis in my area at that time - were those whose doctors had referred them on to a particular psychiatrist. So back then it seemed like it was pretty much a matter of luck. :( Not much different from being in the USA, really, where my doctor is great but a thankfully now-retired cardiologist screamed at me (and I mean screamed) that it does not exist.
  14. Martlet

    Martlet Senior Member

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    Not even aids with sleep or pain?
  15. PoetInSF

    PoetInSF Senior Member

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    For the record, I'm not walking in order to increase my activity capacity any more. I'm just walking withint the limit, and that's enough to elevate my mood and let me sleep well at night. (i.e., improve the quality of life).

    This is what I object to: politics ahead of the solution. By all means, feel free to argue that GET is bad because it leaves half the patients worse off. But to argue that we should abandon it because it gives comfort to the enemy is throwing the baby with the bath water. And why are we still worrying so much about the fringe quacks as if we are still in the 80s and 90s anyway? Even CDC goes out of their way to state that CFS is not a psychiatric condition and not caused by depression.
  16. starryeyes

    starryeyes Senior Member

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    I relapsed in 2000 and have encountered exactly the same kind of horrible treatment from many doctors including things like being told to breathe into a paper bag when my symptoms come on by a neurologist.

    I don't understand how you can think things have changed so much because there are some examples of good doctors out there.
  17. fresh_eyes

    fresh_eyes happy to be here

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    Surely you jest, Poet?
  18. PoetInSF

    PoetInSF Senior Member

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    Maybe I'm lucky. I've seen a half dozen doctors since 2004 and none told me that I'm mental. On the other hand, none of them could help me either. But then, I've never relied on doctors to fix my diseases, ever. I simply use them to help me solve my problems. Some doctors don't like that, I know. But there are good doctors and bad doctors like in any profession, and I wouldn't entirely relegate the responsibility to them. It's MY responsibility to get well, not theirs.
  19. Andrew

    Andrew Senior Member

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    Exactly which sheets on the CAA site are we talking about. Can someone give me an exact link.
  20. valia

    valia Senior Member

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    Hello again Martlet,

    Nope, nothing. if I beg nicely I may get my blood pressure taken...well at least I did once this year.

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