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The CAA Pamphlet to Educate Doctors

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

  1. Samuel

    Samuel Bedbound with NO DOCTOR

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    A few questions

    Hi jspotila,

    Is the CAA contractually obligated, under a penalty large
    enough to materially affect it, to keep those materials on
    its website until the end of the contract?

    If not, can they be taken down now? If not, why not?

    If so, what is the penalty?

    Can you tell us who wanted them there? The CAA? The CDC?
    If it was the CDC, what did the CAA gain in return? Was it
    money? If it was the CAA, can you explain why?

    Are the minutes of those meetings avaiable to the public so
    that we can find out?

    I also have a question about what the CAA thinks of those
    materials. Does it stand behind them? Can the CAA issue a
    statement on this question?

    Transparency is a good thing. An important thing. A
    necessary thing.

    Your answers to these questions and your presence are
    greatly appreciated.

    Thanks.

    Samuel
  2. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Well, actually, this statement is true:

    The goal of CBT is to help patients cope with their illness and change perceptions and behaviors that can contribute to symptom expression.

    Many think they should push through their fatigue, that is a belief and behavior that can contribute to symptoms. It all depends on what is in that CBT. I don't think all would go along with what Tee says is in CBT, although obviously many psychologists do go for that, especially in UK.

    PEM should be emphasized more, including biological evidence of damage of it and importance of pacing and recuperation, so doctors don't get confused as to what those "perceptions and behaviors" are. Given ignorant doctors would naturally think "exercise=good", then more thorough information of what body activity is good, how much, when and based on level of illness should be given. This is not unproven.

    Tina
  3. oerganix

    oerganix Senior Member

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    "The goal of CBT is to help patients cope with their illness and change perceptions and behaviors that can contribute to symptom expression."

    No, I don't think this IS true. It starts from a presumption that CFS patients don't have correct "perceptions and behaviors" (otherwise, why change them?) Incorrect perceptions and behaviors? That is just another way of saying "illness beliefs".

    "Contribute to symptom expression?" This is just another way of saying the symptoms are caused by what patients think (illness beliefs) and how they behave (as if they really ARE ill, despite the 'fact' that it's all in their heads).

    This is just another way to not believe what patients say, which is disrespectful at the least. I don't know any CFS patients who don't do as much physically as they can, and oftentimes more than they should. Everybody I know, including myself, frequently does more than they should, just because we hope we can do it without crashing. Nobody is avoiding physical activity because of inappropriate fears of physical activity.

    The whole GET/CBT thing is just one more attempt to muddy the waters regarding the physical nature of the illness. It's a distraction from the real problems. If anything needs to be said to CFS patients about physical activity, it is that to overdo it is to provoke relapse and possible damage to organs. "Physician monitored"? Get real!! Our doctors don't 'monitor' any other aspect of our treatment all that well. How much attention are they going to give to exercise? And if they are ignorant of the possible damage it can cause, how are THEY to know when too much is too much?

    Why would any doctor even mention exercise to us, when, on our first visit to her/him we tell them about PEM and not being able to DO what we used to DO? The doctor would have to be crazy, cruel or a Wessely/Reeve clone, to even think about offering exercise as a treatment.

    Even mentioning GET in a doctor education pamphlet is a disservice to both doctor and patient. Any patient who wants to exercise, can and can ask for guidance if they think it is needed. No CFS sufferer goes to the doctor to find out how to exercise more. We can figure that out on our own!

    Apply this logic to polio, lupus, MS or AIDS. Are AIDS patients being sold GET and CBT? Treat the illness first, then we'll talk about getting back into shape!
  4. jspotila

    jspotila Senior Member

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    Tee, I appreciate your editing your post. I would like to address your concern that the Association is promoting CBT or that the Association in any way believes that patients are "lying about being physically ill and lying that our symptoms are worse after exertion."

    The CBT fact sheet that appears on the Association's main website includes the following excerpts:
    Here is another article specifically on "exercise" from the CFIDS Link which includes comments from Dr. Bateman, Klimas and Levine regarding how carefully they apply graded movement in their pratices.

    Samuel asked a number of questions about the contract with CDC, and I'll do my best to answer.

    First and foremost, the Association is legally obligated to abide by all terms of the federal contract. The Board cannot and would not endorse any deviation or breach of the contract, regardless of the size of the penalty. While the Association has no intention of seeking further contracts with CDC, we have applied for funding from NIH and the Department of Defense. Any irregularity in performance of one federal contract would make it impossible to obtain future funding and contracts from other agencies.

    The materials at issue here were created under the public awareness contract with CDC. The Association entered into that contract becuase we "believed that our direct participation in these efforts would contribute to more patient-centered messages and vehicles than CDC would have crafted without such a partnership. When the contracts were awarded, they were cost-reimbursement contracts and required that CDC approve all of the deliverables." (from the Association's FAQ page) In other words, the contract required CDC to approve every single item and deliverable for that contract.

    I think the Association's position on CBT is clear in the fact sheet cited above. The Association declined the opportunity to be a "sole source" contractor to CDC on physician education because there were far too many philosophical differences between our desired approach and the CDC's. Instead, the Association secured donor support to create the Medscape CME course which trained more healthcare providers in one year than the CDC's program managed in several years.

    As previously stated, the Association will fulfill all of its legal obligations under the contract. At that point, decisions will be made about the Spark site and materials. The Association strives to provide clear, accurate and credible information about CFS, even in the fast moving developments we are all confronting right now. We're doing our best to stay on top of everything, but with very limited resources not everything can be done all at once.
  5. oerganix

    oerganix Senior Member

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    "CBT will not cure CFS, nor will it alleviate all symptoms for people with the illness."

    Just what symptom(s) will Cognitive Behavioral Therapy alleviate?
  6. kerrilyn

    kerrilyn Senior Member

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    This may sound like an odd and/or stupid question - and please understand that I'm not trying to cause conflict, discord or controversy - it is just a question that I am interested to hear responses for my own personal information. And since you are discussing GET in depth in this thread I figured I'd ask.

    I've heard some people say that PEM is only present in CFS, that it is not present in other illnesses. Others disagree. It is assumed that some illnesses benefit from GET (true graded exercise that starts at 0 and each day slowly increases in duration and intensity). For example, GET is commonly recommended for FM. Is CFS the only illness where it can be strongly refuted as appropriate treatment?

    Why, I ask? I went through a 4 week GET program for FM. I had struggles with it that the other participants did not seem to experience.
  7. CBS

    CBS Senior Member

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    'Self-Powered Exercise' versus GET

    Kerrilyn,

    I've been dealing with this for a very long time and so I need to say that at least in my case, perspectives on this issue can change over time. For years I was ill but at times able to do LOW LEVEL activity without a crash. For me at that time, keeping active at a level below what would cause a crash was very frustrating but doable and up to a point, it helped me feel a bit better.

    Over time that has changed (and not because of deconditioning). After sixteen years of dealing with CFS, the level of activity at which serious neural dysfunction and the real potential for irreversible neural damage (according to my CFS doc as well as my neurologist) is so low that just the simplest daily activities on the wrong day are far beyond what is safe. Some days after a significant amount of rest the amount of activity I can undertake increases SLIGHTLY but the notion that some sort of graded exercise therapy could increase my activity threshold is not only misguided, it is dangerous.

    A very well written 2006 summary of the 2003 Canadian Criteria (http://www.cfids-cab.org/MESA/me_overview.pdf) uses the term Self-Powered Exercise. It is on page 18 of the above link and begins with the statement:

    This is a far more rational approach without the risk of serious damage that a blanket recommendation for GET could precipitate, especially if (as I believe is far more likely than not) the recommendation for GET were to be carried out by someone lacking a thorough understanding of CFS.

    CFS and FM are often co-morbid conditions. In these cases, the cautions surrounding CFS would apply. As for the processes involved in FM when CFS is not present, I'm not in a position to say whether or not GET would be advised.
  8. jspotila

    jspotila Senior Member

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    Post-exertional malaise is a hallmark of CFS. In fact, several of the Association's research studies are incorporating exercise "challenges" as a way of distinguishing CFS patients from controls. For example, Kathy and Alan Light have been able to distinguish CFS patients from both sedentary healthy people and MS patients after an exercise challenge by looking at cell receptors for pain, immune function, etc. Dr. Vernon showed some amazing results from the study in her webinar on February 18th.

    I love the phrase "self-powered exercise" because it points to the importance of moving at the patient's pace! My own experience with physical therapy bears this out. I worked with a PT for over a year before I could try a 4 minute walk. And I think I am one of my physical therapist's only patients who she has to hold back from doing too much. Most PT patients (all illnesses, not limited to CFS) need to be pushed. CFS patients don't fit in the standard PT frame of reference: we want to do more than we are capable of, and we make advances very very slowly, if at all.
  9. kerrilyn

    kerrilyn Senior Member

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    CBS, thank you very much for that information, that helps explains things for me very well.

    The program I went through was run in conjunction with a Rheumatology Dep't. I was the youngest participant of that particular group (my early 30's).

    Every day we used a treadmill starting with a minute walk and it increased by a minute each day. We were under the supervision of a PT, monitoring our heart rate. Shortly into it, neural dysfunction describes exactly what I experienced and I couldn't reach the optimal heart rate for my age. The PT said every once in a while there was a participant who was like this, but made no note of it in my chart.

    After the course we were encouraged to join a fitness program. I choose a seniors exercise class once/wk. No one in the class was under 65 except me, some were 80 - so not an intense class. It was all I could do to get through it and I had to come home immediately and spend the next 4 days in bed. I tried every wk for 7 wks to do less (pace more), even doing the whole class sitting in a chair and just lifting my arms, it still sent me straight to bed. That was a big wake-up call. I learned stretching is good, but rising my heart rate is not.

    I couldn't really describe what I was experiencing (I knew nothing about CFS so didn't see a connection) and the PT, Rheumy and my GP weren't interested in hearing it anyway. I was told I just not utilizing pacing properly and I was deconditioned. I felt like I was being blamed, not that I wasn't trying hard enough necessarily but rather for not understanding the concept of pacing. CFS was never and has never been mentioned. I'm guessing that like me, the other occasional participants of that course the PT referred to who had difficulty with the GET portion, may have had both FM and CFS, but CFS is not understood by the staff.

    As a side note - I'm in Canada and we have a fairly impressive CFS criteria. I fit that criteria. I've met lots of FM patients (some similar to me and some not), but only one CFS patient. I had a disability advocate help me get disability benefits who said if I had depression, saw a therapist and took anti-depressants I would be approved more easily. I don't have depression, so I wouldn't play ball so to speak. She also said if I had CFS she would not have taken my case because it's almost impossible to win with that diagnosis. That's pretty sad, we really haven't come very far.
  10. CBS

    CBS Senior Member

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    Kerrilyn,

    Your experience with PT and disability are very common. I'm sorry to hear that you've had so much difficulty. Perhaps it helps a bit to know that you are far from the first CFS patient to have been accusssed of 'not doing it right' when GET (or CBT) has failed. THE FAILURE OF 'GET' IS NOT YOUR FAULT!

    I do want to second the importance of JSpotila's recommendation to see Dr. Vernon's webinar from Feb. 18th. The work of Drs. Alan and Kathy Light speaks directly to your question (and I was remiss in not directing you to their work - Thanks Jennie). The Lights' work is early in the presentation (slides 4 - 8) and I recommend if possible, that you watch the video as Dr. Vernon does a good job of explaining their work. Dr. Bateman also has a presentation from 12/2/09 (http://www.offerutah.org/batemanxmrv.htm) in which she discusses the work of the Lights. There is also a talk by Kathleen Light on the OFFER web-page (http://www.offerutah.org/kathleenlight.htm).

    This is good stuff and JSpotila didn't mention it but the CFIDS Association of America (CAA) is responsible for funding it as part of the CAA's "Accelerate CFS Research Initiative" under the direction of Dr. Vernon (http://cfids.org/about/acceleratecfsresearch.asp).

    If you are looking for a place to contribute where your money will support important research, you can consider this an unsolicited plug for the CAA. I have personally have raised some direct questions about the CAA's physician education efforts but after exchanging e-mails with (and receiving very thoughtful and respectful replies from) CAA Director, Kim McCleary, I have come to the conclusion that for myself, this is an organization that is very worthy of our support.

    I would also ask you to consider supporting the work of Dr. Bateman and OFFER Utah (there is a special project to support OFFER that I expect will soon be announced on the forum).
  11. Mithriel

    Mithriel Senior Member

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    The cardinal symptom of Myalgic encephalomyelitis is an abnormal response to exercise. Exercise is to ME what pollen is to hay fever.

    I think the diagnosis of FM and CFS is all over the place. I suspect it is because severe pain is not considered a feature of CFS although it is part of ME - the myalgic part.

    In ME there is a threshold of activity, which changes day to day, beyond which damage will occur.

    For interest, the other cardinal symptom of ME is variability. The symptoms change hour to hour, day to day, month to month and year to year.

    Mithriel
  12. Orla

    Orla Senior Member

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    CBT is for mental health and behavioural problems

    Sorry, I haven't read all of the thread. But on the discussion about CBT, it is important to be aware that CBT is for mental healthy and behavioural problems. I studied psychology for a year in university and we were thought that CBT was for things like depression, anxiety, and phobias.

    The reason CBT was originally suggested for ME was because a CBT psychiatrist (Wessely) though ME was just the result of mental and behavioural problems (that seems to have been the beginnings of it anyway). See the thread I started here: http://forums.aboutmecfs.org/showthread.php?1843-The-Psychiatric-view-of-ME-CFS-What-is-it

    Sometimes CBT is dressed up as something it is not, sometimes what is called CBT is more like counselling or self-help advice, but CBT is for abnormal thinking and behaviours no matter what any spin says. The CBT industry is often quite open about what they do, it just seems sometimes that when it comes to ME/CFS, some of them do not want to be open with patients etc. about what they are really doing (because the patients would know it was crazy). I think that suggesting CBT for ME/CFS sends out a bad signal to doctors, psychiatrists etc.

    CBT is not like counselling, which a person without mental health problems could do. Basically counselling would be a more neutral to be suggesting if one wanted to suggest psychological support (and the evidence for it in ME is just as good as for CBT, it is just politics which has given CBT the greater influence).

    Here are a few quotes re what CBT is from sources which were not discussing CFS.

    From an interesting blog:


  13. Orla

    Orla Senior Member

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    Example of why CBT is pushed for ME/CFS

    I have put some in bold (somatic means bodily):

  14. jspotila

    jspotila Senior Member

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    :victory: Thank you so much!!!! The Board and staff work very hard, and it is always nice to get positive feedback that we are making a difference.
  15. Hope123

    Hope123 Senior Member

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    Kerrilyn,

    I'd also throw in that it depends also on how one is diagnosed with FM. FM according to the American College of Rheumatology has a specific pattern of muscle pain to a specific amount of applied pressure. However, I don't think many health professionals necessarily stick to the ACR's definition and probably diagnose people with FM from them just saying they have achiness all over. I suspect I could be diagnosed with FM if this was the definition but I know I don't fit into the ACR criteria and my achiness is more flu-like, less severe. And I've seen a rheumatologist about it.

    The other issue to keep in mind is that FM is often present along with other rheumatologic illnesses. So even if you fit ACR criteria, it doesn't mean you will respond the same way as someone with FM and rheumatoid arthritis or FM and lupus for instance. We know so little about CFS/ME, much less this combined with FM.
  16. starryeyes

    starryeyes Senior Member

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    Hi Jennie,

    It's the Spark! materials that I'm upset about and that I'm talking about right now. I don't really know how I feel about the other things the CAA says about CBT. Right now I'm concentrating on the detrimental educational materials for doctors about treating and in this case mistreating CFS that have been put online by the CAA.

    People with ME/CFS have been committing suicide and/or ending up in wheelchairs or bedbound for life because they are not believed and are forced to push themselves by the medical professionals. I hold the CAA responsible for that and for it continuing to happen.
  17. Stuart

    Stuart Senior Member

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    oerganix! A brilliant post, clear and well thought out, Kudos!

    This is the point, CBT/GET is inappropriate, even with the included waffle words about it not being a cure and needing to be with a knowledgable practioner (find one!) it becomes the primary not a supplemental treatment. And to put it on a "Fact Sheet" is laughable, you may cite selective literature as your source documents, but the real fact is that the 'studies' were flawed and meta-analysis showed them ineffective to harmful.

    How many Sofia Mirza's do there have to be? How many doctors have to say "Stop" your going to kill a patient like Dr. Cheney, have they even read about Mitochondria dysfunction and what that means?

    Teej is right, accepting money to tote the CDC line on bad studies was a disservice that haunts us to this day, and it isn't going away.:Retro mad:
  18. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Good points here, especially about the difference between counseling and CBT. Maybe I am ignorant, not having had either.

    I was told that sometimes a psychologist does help people who have MS, etc. to learn how to change their lifestyle to adapt to their new limitations and acceptance of their new life and find joys in that life. Maybe that is called counseling, but it would also be helpful for many people with CFS.

    I have seen many people who have CFS who expect they will return to their former life. Or they do not accept their limitations and they push themselves. In other words, they do not believe they are too sick to keep doing what they used to. This is an erroneous illness belief. They have not accepted they have a debilitating chronic illness. They believe that if they just keep exercising or pushing that somehow they will be better the next day.

    This erroneous belief leads them to continue pushing, a harmful behavior. As has been said, many doctors have this erroneous illness belief and recommend harmful behavior.

    Tina
  19. Dr. Yes

    Dr. Yes Shame on You

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    Hi Tina,

    Although semantically one could certainly make a very strong case that what you described above is an 'erroneous illness belief', the trouble is that in psychological literature and education it is not understood that way; they aren't open to the idea that one can actually be "too sick" to do something. I have read CAA literature claiming that some CBT practitioners do include this idea, but I have to this date never seen a psychological text dealing with CBT that really defines "erroneous illness beliefs" in that manner. Instead, the focus is entirely on the false beliefs that one is too sick. The central assumption is that we can do better than we think we can, and need to be (rather subversively) made aware of this.

    CBT was created to deal with certain mental health problems. As Orla just pointed out, there came a point when, for whatever reasons, it was co-opted by certain psychiatrists who were in the process of blurring the distinctions between mind and body illness, with CFS their cause clbre ; they twisted the definition of illness to make it appropriate for CBT and vice versa. This has led to the confusion we see everywhere about the definition of CBT. Adding to the confusion is the fact that some in the psychological field have begun to incorporate other counseling techniques into what they call CBT, as well as strategies like pacing (or things they erroneously call 'pacing')... so the popular definition of CBT keeps broadening and getting more amorphous and hazy.

    But the majority view on what CBT actually is remains either the traditional one in the textbooks and/or its misapplied version promoted by a number of psychiatrists (like Wessely, among others). CFS is not the only physical disease for which CBT has been proposed as a therapy, but it is the only one where it is promoted as the primary therapy, and the only one which is seen as largely (or entirely) psychosomatic by many of those practitioners. It is also the only one for which CBT is actually, routinely prescribed; CBT's efficacy is still being researched in the other diseases for which a possible role has been proposed (after all, those are REAL diseases... got to be careful!)

    The CBT practitioners the CAA is referring to must be very exceptional and rare individuals; to represent them as anything other than that - as in some CAA info - is misleading. (These individuals are among those I mentioned above who are not helping matters by continuing to misapply or unofficially redefine the term CBT!) Further, any practitioner who is committed to the idea of some form of GET is simply uninformed, no matter how highly respected they might be. The CAA has put out some good statements on these issues, but they are mixed with many bad ones; I don't know of any doctor who could read all that literature and not come away confused (at least!) by the contradictions.
  20. Mithriel

    Mithriel Senior Member

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    Well said Dr Yes.

    The problem with mixing CBT and "learning to cope with a chronic illness" is that any success with the latter is taken as confirmation that CFS is indeed a false illness belief. The confusion between the two things is being used against us, as CFS being a somatisation disorder where we only think we are ill is taken as justification for withholding benefits, treatments and services.

    One infamous description of us in the Handbook for people deciding if we qualify for benefits said

    "People with CFS think they can't walk but they could if they wanted to"

    This is what a false illness belief means. Every symptom we say we have is not true, we are just misinterpreting normal bodily symptoms (we get hot but whereas every one else would have a cold beer we think we have a fever) Saying it is relaly bad is just more proof. Seeing a doctor, more proof, getting angry more proof, it just goes on. Getting help and caring from your partner or parents will just make you worse so if they love you they must stop it. Investigating your symptoms will just make you think you are ill so don't do it, it goes on and on.

    Promoting CBT will lead to our circumstances becoming much much worse. I do not think the CAA was aware of all this but now thye are and these documents should be gone NOW, TODAY. I can see no reason for it not happening.

    If they are sued by the CDC it is just a great opportunity to take CBT to court, we could all help fund legal costs.

    Mithriel

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