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Self Help Strategies - NOT CBT - We need the CAA to help!

Discussion in 'Action Alerts and Advocacy' started by CBS, Jan 12, 2010.

  1. CBS

    CBS Senior Member

    Not sure if this should go under projects or advocacy (I guess than depends in part on the CAA's response to the request I make at the end of this post).

    It is way past time to put the confusion around the utility of coping strategies and CBT to rest.

    Self-Hlep Strategies - great for CFS!

    CBT - worthless/harmful for CFS!

    The Canadian Consensus Diagnostic Criteria addressed this issue in a very clear and concise manner in 2003! Why are we allowing so called research into the efficacy of CBT to go unchallenged?

    In the booklet - A Clinical Case Definition and Guidelines for Medical Practitioners (2005), Bruce M. Carruthers and Marjorie I. van de Sande summarize the Canadian guidelines originally published in 2003. (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Guidelines A Consensus Document Bruce M Carruthers, Anil Kumar Jain, Kenny L De Meirleir, Daniel L Peterson, Nancy G Klimas, A Martin Lerner, Alison C Bested, Pierre Flor-Henry, Pradip Joshi, AC Peter Powles, Jeffrey A Sherkey, Marjorie I van de Sande. Journal of Chronic Fatigue Syndrome 11(1):7-115, 2003.)

    Here's the summary:

    This is what is posted on the CFIDS Assoc of America site (

    I know that the CAA has make some promising moves in the recent past. On behalf of everyone who has been dismissed or abused because of the inappropriate use or recommendation of CBT, I would like to ask (very politely and appreciatively - at first :Sign Please:) the CAA to rewrite their advice on 'Treatment: Supportive Therapy,' removing the paragraph on CBT and listing many (if not all of their supportive therapy recommendations) in a manner similar to the CCDC - under

    Why use such a confusing, poorly understood recommendation when there is such a clear concise and and useful alternative just waiting to be recognized. It is way past time to start cleaning up the confusion around CFS!

    As for calming exercises and counseling, it is my opinion (and only my opinion) that everyone could benefit from light yoga (if able), meditation, breathing exercises, therapeutic massage, etc. And if someone (anyone) needs short-term supportive therapy, then by all means - if the person finds it useful.

    To all patient advocacy organizations, we need your help! Please be careful that your work helps to bring clarity, not create more confusion or perpetuate harmful assumptions.

    Thank you!
  2. _Kim_

    _Kim_ Guest

    Shane you mind reader!! :eek:

    This morning, I busted out the Canadian Consensus and read it over again, looking at their treatment recommendations. That section that you excerpted stayed with me all day. I was wondering why it hadn't been picked up by our advocacy groups.

    Bam: from my head to your hands just like that. Good work:victory:
  3. Dr. Yes

    Dr. Yes Shame on You

    Hey Shane,

    The last part in red is the part that most of the medical establishment will rebel against. It goes against everything that is drummed into the heads of medical students, nursing students, medical social workers and physical therapists. It's also the part that every closet subscriber to at least partial psychosomatic theory will howl about.

    I'm not certain when this attitude became the prevailing one in medicine; it wasn't always.. I'd guess that the increasing prominence of psychiatry had a lot to do with it, but so probably did the discovery of antibiotics and other treatments which led to the extreme reductionist model of medical treatment ("one symptom, one pill")... after a while I think doctors came to rely too much on what they could measure and treat, and were eager to dump any case that did not fit into the laps of psychiatrists. Maybe doctors never were good scientists on the whole, and the result has been the acceptance of the unfalsifiable somatization 'theories' (a theory, strictly speaking, must be falsifiable, so I have a hard time calling many psychological ideas "theories" or even "hypotheses"). Anyway, this 'approach' happens to be very economically favorable to insurance and pharmaceutical companies in our time, so it gets reinforced.

    The insistence on CBT and GET, no matter how they are 'adapted', come directly from that psychological ideology. CBT stripped of the "false illness belief" ideology is no longer CBT; it's just psychotherapy. By clinging to the label "CBT" we inadvertently allow the somatization school legitimacy, since anyone who really knows psychology knows what CBT is based on. The insistence on graded exercise (no matter how scaled-down) is also based on a lack of understanding about ME/CFS, specifically the concept of absolute limits placed by the disease in the vast majority of cases.

    OK, getting off the soapbox..(thump).. I think the only way it will be possible to get the medical establishment itself to accept what we may be able to get the CAA, etc to endorse is to highlight research studies like the one Tom K. posted, which clearly show that when even the psychosomatizers bother to do half-decent science involving measurements they find that GET is NOT helpful; this plus the (fingers-crossed) recent discoveries in ME/CFS aetiology would be the only way I can imagine a very conservative, hard-headed establishment coming round to embrace reality.

    Still, we have to start somewhere, and I don't see why any advocacy group worth its salt should disagree with adopting the ideas on activity in the Canadian Criteria. If they do, they shouldn't be our advocacy group! But the CAA would have to overhaul all its literature, not just one paragraph; they have a lot of stuff on their site or in other documents referring to CBT and graded exercise...

    I'm tired. :In bed: I hope this was helpful in some damn way. Can't
  4. CBS

    CBS Senior Member

    CBT and GET - Like a glove

    Cognitive/Behavioral Therapy (CBT) and Graded Exercise Therapy (Get) could not have been more tailored made for each other. When used in the context of CFS, neither is benign.

    Dr. Yes - you are absolutely right about the need to highlight the studies showing that CBT and GET are not effective, but are instead dangerous.

    Here are a few of the recent links to articles/threads on the dangers of CBT/GET:

    CBT found not to increase activity levels in 3 Dutch CFS studies
    "Importance of Objective Measures of Therapy" by Peter Kemp
    CBT/GET Assessed in Belgium
    CBT/GET potentially harmful to ME/CFS patients

    If you break down CBT into its two primary components the connection (and the fact that in the 'B' in CBT is really just GET) becomes clear.

    According to Judith Beck, Director of the Beck Institute for Cognitive Therapy (and daughter of the psychologist Aaron Beck, the founder of the Institute as well as the 'father' of Cognitive and Cognitive/Behavioral Therapies themselves):

    The essential components of CBT are:

    1) identifying distorted thinking
    2) modifying beliefs
    3) relating to others in different ways (hmmmmm?)
    4) changing behaviors

    CBT for CFS assumes - and has no place without - DISTORTED THINKING!

    Those distorted thoughts lead to beliefs that MUST BE MODIFIED.

    The goal of modifying your distorted beliefs IS CHANGING YOUR BEHAVIOR.

    GET as an integral part of CBT is intended to show you that you are not as sick as you think you are (identifying and modifying your distorted thinking).

    If your immune system is in overdrive trying to deal with excessive viral loads,etc., GET as a mechanism to overcome the belief that you are actually sick (and feeling sicker because of the added strain of physical exertion) is INSANE.



    As Dr. Yes said, without the ASSUMPTION of distorted beliefs, CBT falls apart.

    Is it the position of any patient advocacy group that:


    If not, then why are advocacy group promoting an approach that is entirely dependent upon this assumption?
  5. jspotila

    jspotila Senior Member

    Many respected CFS clinicians recommend CBT as part of an overall treatment strategy, including Dr. Nancy Klimas. The Association recently revised its fact sheet on CBT. I've excerpted some quotes from the page:

    Speaking from my own personal experience, one of the "distorted beliefs" I continue to struggle with is the belief that I can just keep pushing myself without dire consequences. My husband constantly points out that I say things like "I don't know why I feel so bad" or "I don't know why I'm crashed out today" and he just looks at me with disbelief! HE can predict better than I can whether an activity is going to set me back. A course I took on coping with chronic illness pointed out that denial is a very double edged sword. Denial may be what gets me out of bed in the morning (I don't feel THAT bad) but it is also what puts me back in bed well before evening.
  6. CBS

    CBS Senior Member

    How would our lives change without CBT?

    Jennie, Thank you for your reply.

    The CFIDS Assoc description of the cogntive aspects of CFS seems much more benign and differs from the description of Cognitive Therapy given by the Beck Institute ("identifying distorted thinking").

    CBT is so loaded and it isn't clear to me how recommendations that "the person can examine beliefs, concerns and coping behaviors and modify these as necessary, to develop constructive coping strategies to compensate for the multiple physical and emotional impacts of CFS" differ in any significant manner from supportive counseling when needed. Personally, I saw a Medical Psychologist for 9 months after having been ill for over 3 years. I needed to discuss/"examine" the impact that CFS had had on my dreams and career as well as how to deal with it (and everything that comes with it) on a daily basis. I'd strongly recommended that anyone struggling in a similar situation consider doing the same.

    As for the behavioral aspect of CBT, I think that anyone professing to provide relief for CFS patients need to recognize that a large majority of us do too much, not too little. I'm all for getting help when you need it. CBT and it GET have been so thoroughly abused by those that cannot see the physiological basis for CFS - and advocates, in efforts to ensure that they don't make the same mistake seem to have taken a position on CBT that leaves it devoid of the very essence of Cognitive Therapy (identifying and changing distorted thinking through behavior change - the hallmark of CBT is the treatment of anxiety disorders and the classic example used in every graduate level course is that of "exposure" to the feared stimulus (maybe a snake but in our case is it work?) and after a period, the anxiety response lessens with the help of counseling/belief examination and exhaustion).

    The Self Help Strategies and supportive counseling by someone who appreciates the physiological basis of CFS is so much less loaded and more importantly, gets straight to the point of what really helps with CFS.

    I guess I can sort of see the CAA's view on this. I still feel strongly that it is unnecessarily confusing to recommend CBT when the Canadian Consensus Guidelines are straight forward with much less potential for harm by inexperienced and wrong headed practitioners and naive physicians.

    Along with the Self Help Strategies these activity guidelines made too much sense to not be a central part of any advocacy group's recommendations.

    Why couldn't I find these recommendations on a site that advocates on my behalf?

    How many physicians (and mental health providers) are unaware that these guidelines exist?

    And if physicians did know of them, would our treatment, and therefore our lives, improve?
  7. Dr. Yes

    Dr. Yes Shame on You

    I think Shane's points are all excellent, and I'd like to add my own take on the problem to his.

    First, for some clarification -- from the definition of 'cognitive behavioral therapy' in the Encyclopedia of Mental Disorders ( the bold print mine:

    There is no mention here of applications to real physical illness except when it goes on to state:
    But note one essential point (in red above) - the use of CBT in treating hypochondriasis. THAT is the crux of the problem. If a practitioner is of the view that your condition is partly or completely a result of hypochondria, i.e. psychosomatic, their 'CBT' will instantly change from a sunny-sounding coping strategy to a challenge to the very reality of your CFS. And far, far too many practitioners in all fields are of that view. Even in otherwise decent papers on CBT one can find statements like this when the issue turns to treating 'physical' disease:

    I read through the CAA's updated "Fact Sheet on CBT". But, as Shane said, doesn't that just amount to psychological counseling for chronically ill/ disabled people? Why call it CBT, which has a very specific clinical origin and definition that assumes the existence of false illness beliefs, psychosomatic symptoms, or maladaptive behaviors, and is understood by many doctors and psychiatrists to mean exactly that?

    I think the only issue here is to change the label from "CBT" to "therapy" or "counseling" for physically ill/disabled people. Some CFS doctors are using the term CBT in its vaguest definition. We have enough problems with fuzzy definitions of our disease; why add more confusion by using a term that is at BEST a semantic mess, and at worst can lead to abuse or stigmatization of patients?

    I am aware of Nancy Klimas's (surprising) endorsements of CBT, despite being one of the authors of the Canadian Consensus documents. I don't know her full opinion on the matter, i.e. if she believes her patients have some degree of false illness beliefs or maladaptive behaviors that so reinforce the disease that they require psychological treatment. But I tend to doubt it; I think she's just using the term extremely vaguely like so many others. But definitions do matter a lot in medicine, as all of us know only too well. I think we should be pushing for the general embrace of both the Canadian Consensus criteria and its treatment guidelines. It is a more intelligent and informed view of ME/CFS, and CBT as it has been most commonly practiced, as well as GET, have no place in such a view.

    From the CAA's updated fact sheet on CBT:
    Using myself as an example: I have had asthma all my life (I am currently seeing a pulmonologist and an allergist for it) and to this day have never had CBT even mentioned to me. I have recently read papers by psychologists advocating the use of CBT in many illnesses, including asthma. Aside from the fact that many of these studies target cases of anxiety or depression disorders comorbid with asthma, all of them would have to be considered experimental at best and not something to be applied by practitioners at this stage. There is a somewhat scattered group of psychiatric professionals who promote CBT for just about everything and, within this group, a much more cohesive lobby that promotes the idea that all medical disease can have a psychological component that should be separately diagnosed (see the discussion on the DSM threads). Clearly, the last thing we should be doing is endorsing that very unscientific and potentially dangerous agenda.

    This extremely influential and powerful lobby of psychological and a few allied medical specialists - for whom Wessely, White, Sharpe and others are only the 'pointmen' - promote a view that CFS is in part or in whole psychosomatic and have widely defined CBT accordingly. The CAA and doctors like Nancy Klimas state that they completely disagree with the view of CFS as psychosomatic/ hypochondriasis, yet endorse a therapy of the same name. The result is that no challenge to the 'somatizers' view is registered in the minds of medical practitioners at large. All they hear is that CBT (and GET) is recommended. How is my doctor supposed to know that what the CAA or Dr. Klimas means by CBT is really the polar opposite of what all those others mean by CBT -- especially when the latter have published stacks of papers and are widely considered the experts on the subject? How will my doctor be able to determine whose opinion to trust -- especially since patient advocacy groups and specialists like Klimas have nowhere near the exposure of the psychosomatic lobbies?

    With the table already tilted heavily in their favor, it is essential at the very least that we do nothing that works further into their favor. Since they have so appropriated the term CBT, we cannot afford to use it; we have to make clear by the simplest means possible that we are on a totally different page than they are. That means using a different term for what is in fact a very different therapy.
  8. gracenote

    gracenote All shall be well . . .

    Santa Rosa, CA
    Thank you Shane and Dr. Yes. :Sign Good one:

    I think you both made your points well, and I agree. I want to say something brilliant to add to this discussion but the brilliant bit hasn't come to me yet. :ashamed: Maybe tomorrow.
  9. jspotila

    jspotila Senior Member

    In my own very limited and non-expert experience, CBT is more than psychological counseling or supportive therapy for the chronically ill/disabled. I know two people who - in addition to allopathic treatment - went through CBT for attention deficit disorder. The program addressed the "distorted beliefs" and "maladaptive behaviors" that were preventing them from functioning on their highest levels. Neither the CBT nor the therapist EVER suggested that the ADD was not real or was actually a product of the distorted beliefs. The premise of that CBT was "you have ADD; let's teach you how to function with it better."

    CBT has not been used this way for many CFS patients, and the "psych group" has used CBT in the way Shane and others describe. I think it is also likely that a doctor, hearing that CBT helps CFS patients, might not take the time to dig deeper, learn about CBT, and think critically about what kind/approach to CBT would best help the patient (although I think the Association's fact sheet on CBT summarizes the complexity). And those of us who are educated about CFS and CBT know how it has been misused, and so we are highly skeptical whenever ANY doc mentions CBT.

    My personal opinion is that until we have a validated diagnostic test for CFS, the "psych group" and others will have traction in the debate. But once we have that diagnostic test, the only thing the "psych group" will be left with is CBT as a method to help CFS patients function at their best levels: "you have CFS; let's teach you how to function with it better," and everyone will know that this is the only way CBT helps CFS patients. How do we get a validated diagnostic test? Research. Research. Research.
  10. starryeyes

    starryeyes Senior Member

    Bay Area, California
    This "vague" or "vogue" use of CBT is serving to harass and abuse PWC. That's what I object to.

    Thank you for all you're writing about this
    CBS and Dr. Yes. You guys sound like a rap duo. :victory::victory:

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