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

[CBS]

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:

SELF-HELP STRATEGIES (SHS)

A hypothesis underlying the use of Cognitive Behaviour Therapy (CBT) for ME/CFS is based on the premise that the patients impairments are learned due to wrong thinking and considers the pathophysiology of CFS to be entirely reversible and perpetuated only by the interaction of cognition, behaviour, and emotional processes. The patient merely has to change their thinking and their symptoms will be gone. According to this model, CBT should not only improve the quality of the patients life, but could be potentially curative46. Supporters suggest that ideally general practitioners should diagnose CFS and refer patients to psychotherapists for CBT without detours to medical specialists as in other functional somatic syndromes47. Proponents ignore the documented pathophysiology of ME/CFS, disregard the reality of the patients symptoms, blame them for their illness, and withhold medical reatment. Their studies have often included patients who have chronic fatigue but excluded more severe cases as well as those who have other symptoms that are part of the clinical criteria of ME/CFS. Further, their studies fail to cure or improve physiological impairments such as OI, sore throat, IBS, etc. Dr. A. Komaroff48, a Harvard based world authority, stated that the evidence of biological process is inconsistent with the hypothesis that (the syndrome) involves symptoms that are only imagined or amplified because of underlying psychiatric distress. It is time to put that hypothesis to rest. Some physicians, who are cognizant of the biological pathophysiology of ME/CFS, teach patients coping skills but call them CBT. We urge such doctors to use the term Self-Help Strategies and avoid using the terms Cognitive Behaviour Therapy and Cognitive Retraining Therapy.

46 Sharpe MC, in Demitrak MA, Abbey SE (editors). Chronic Fatigue Syndrome. Guilford Press, NY 1996, pp. 248.
47 Wessley S, Nimnuan C, Sharp M. Functional somatic syndromes: one or many? Lancet 354(9182):936-939, Sept 11,
1999.
48 Komaroff AL. The biology of the Chronic Fatigue Syndrome. Amer J Med 108:99-105, Feb 2000.

This is what is posted on the CFIDS Assoc of America site (http://www.cfids.org/about-cfids/supportive-therapy.asp):

Mental Health Counseling
Anxiety and depression are potential effects of CFS as PWCs strive to cope with the life-altering changes that occur with a chronic illness. The primary treating physician may conduct a brief mental health evaluation and, if necessary, make a referral to a mental health professional who can conduct a more in-depth assessment and assist the PWC in making positive adjustments.

Cognitive Behavioral Therapy (CBT)
This form of therapy combines cognitive therapy with behavioral therapy and focuses on the person's thoughts, assumptions, beliefs and habitual reaction to these thoughts and beliefs. During CBT, PWCs learn methods to help re-direct thinking processes and take steps to modify their reactions. Relaxation techniques, such as deep breathing or meditation, are often utilized in CBT. There is evidence that this therapy has helped some PWCs cope better with the effects of a chronic, unpredictable illness, although it doesn't offer a cure.

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

Self-help Strategies (SHS) assist patients in coping with their chronic illness by conserving energy, minimizing symptom flare-ups, and maximizing coping skills and functionality.
1. Patient Education: (The CAA should encourage physicians to) Meet with the patient and her/his meaningful others as soon as possible after diagnosis to discuss the illness, what to expect, develop SHS, and provide educational information.

• Assist patients in recognizing aggravators and early warning signs so they can stop before exceeding their activity boundaries and prevent crashes. Encourage patients to take their temperature before and after an activity. If their temperature drops after an activity, they may have done too much.
• Provide information on relaxation and stress reduction techniques.
• Provide information regarding energy conservation techniques and environmental modifications.
• Encourage avoidance of known aggravators as much as possible in order to prevent flare-ups.

2. Self-Development: Encourage patients to

• trust their feelings and experiences
• set aside a time to rest and do something they enjoy
• set personal and activity boundaries and find their optimal activity rhythms
• gradually extend boundaries, if and when able, but do not exceed activity boundaries

3. Maximizing Sleep: Patients should be encouraged to

• conserve energy by pacing daytime activities
• listen to their body signals and incorporate rest periods into their day as needed. (Sleep dysfunction and low energy reserves
• are prime concerns. Over-exhaustion may increase insomnia.)
• establish a regular bedtime and do quiet activities, or use relaxation tapes before bedtime
• have a warm bath before bed to relax their body and keep their body warm at night
• reserve bed for sleep and sex
• give their body proper postural support e.g. use a contoured pillow
• keep the bedroom as a worry-free sanctuary
• do calming and slowing meditations if sleep is impossible

4. Balanced Diet and Nutritional Considerations: Encourage patients to

• eat a balanced, nutritious diet and eat meals at regular times
• keep well hydrated
• take a multi-enzyme tablet with meals if indicated or if they have IBS
• take nutritional supplements as needed. (The biochemistry and needs of each patient is unique. Chronically ill patients require nutritional support for healing. If practical, a vitamin and mineral profile can assist in assuring that the patient is receiving adequate nutrients and indicate specific deficiencies. Start with a one-a-day vitamin/mineral supplement, replenish electrolytes, and add supplements as required.)

5. Body Movement and Fitness: Encourage patients to

• use good body mechanics and use techniques and practices, such as yoga, to improve balance
• stay active within their limitations; avoid activities and work which takes them beyond their capacity

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!

 

[_Kim_]

Shane you mind reader!!

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:

 

[Dr. Yes]

5. Body Movement and Fitness: Encourage patients to

• use good body mechanics and use techniques and practices, such as yoga, to improve balance
• stay active within their limitations; avoid activities and work which takes them beyond their capacity

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 think...must...rest..

 

[CBS]

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):

In Cognitive Therapy: ...patients learn specific skills that they can use for the rest of their lives. These skills involve identifying distorted thinking, modifying beliefs, relating to others in different ways, and changing behaviors.

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.

IT IS NOT THE CFS PATIENT THAT HAS DISTORTED BELIEFS.

THE PROPONENTS OF CBT AND GET ARE THE ONES HARBORING DISTORTED BELIEFS.

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

Is it the position of any patient advocacy group that:

A PRIMARY COMPONENT OF CFS IS DISTORTED BELIEFS?

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

 

[jspotila]

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:

CBT is not a cure for CFS and it is not a substitute for medical care. Working with a CBT therapist, 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. . . .

Research conducted in the U.S. and other countries has shown that CBT can improve function and symptom management for people with CFS. It appears to have limited effect on pain and fatigue. CBT will not cure CFS, nor will it alleviate all symptoms for people with the illness. It is simply intended to assist the individual to better manage the illness. . . .

Psychological factors are relevant to any illness process. CBT has been shown to help people deal with these factors and better cope with the life-altering issues of chronic illness. . . .
Recent studies of CFS patients have shown that over-exertion can have harmful results because of energy production defects occurring at the cellular level.

CBT is used to improve coping and symptom management of many chronic illnesses, including asthma, diabetes and heart disease and much has been written about its application in these conditions as well as CFS. It is actually one of the best-studied therapies for CFS but has been extremely controversial when used to falsely justify a psychological basis for the condition, especially in countries whose health care systems have used CBT in place of standard medical care for the treatment of CFS. . . .

The CBT therapist needs to be familiar with CFS, be aware of the evidence for CFS as a biologically-based disorder and genuinely validate a persons experience of living with a misunderstood illness. . . .

CBT has been well studied in CFS with funding from the U.S. federal government and other countries. The CFIDS Association has not funded any CBT research, or research on other psychological treatment approaches and does not advocate further spending on this form of adjunct therapy.

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.

 

[CBS]

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.

Canadian Consensus Recommendations for Self-Powered Exercise:

Even though post-exertional malaise/fatigue is a hallmark feature and a criterion of ME/CFS, patients are often prescribed exercise unwisely. Research studies confirm that ME/CFS patients have different physiological responses to exercise than those who are healthy or depressed, as indicated in the chart on page 4. While not all patients exhibit all of these abnormal reactions, most exhibit some of them.

Traditional exercise programs can provoke relapses. As much care must be taken in prescribing exercise as prescribing medication to ME/CFS patients. Exercise must be individualized, entered into cautiously, and monitored diligently. Exercise programs should adhere to the previously stated goals and guidelines and the following principles:

1. Initial Patient Evaluation: A thorough history and examination, with particular attention to cardiac vascular responses to activity, must be completed before considering any exercise program. The reality of the unique medical issues, biological dysfunctions and limitations, risk factors, and pain generators must be identified and addressed.

2. Medical Management must be optimized before introducing exercise. Patients with less severe symptoms that are under control may benefit from very gentle exercise to maintain functionality. Some patients may only be able to exercise in bed, but exercise is not recommended for all patients.

3. Principles of Treatment: Exercise should be done under the guidance of a well qualified exercise physiologist or physical therapist, who is knowledgeable about ME/CFS.

Minimize relapses: Exercise should be individualized, based on the patients abilities/limitation, accommodate energy fluctuations, and focus on improving function. Exercises must be very gentle and carefully paced. Incorporate frequent rest breaks to ensure complete recovery. Often it may be appropriate to begin with two minute exercise periods three times weekly. The patient should be well hydrated before exercising.

Accommodate circulatory and cardiac impairments: Many patients have reduced maximum heart rates and must not be pushed towards standardized age-predicted target heart rates. Significantly impaired oxygen consumption levels suggest there may be an abnormal reliance on anaerobic energy pathways during exercise in patients with ME/CFS, thus exercises that would be aerobic for healthy individuals may be anaerobic for patients. Any graded exercise expansion may be inappropriate for some.

Maximize self-efficacy: Involve patients in planning. It is imperative for them to maintain autonomy over the intensity and pacing of exercise and activities.

Cautions: There are potential dangers if ME/CFS patients are pushed to increase their heart rate to age-predicted target heart rates. As indicated in the chart on page 4, research studies suggest that their hearts may be functioning at a suboptimal
level and many have autonomic disturbances; thus they may not be able to accommodate the normal target heart rate. Externally paced Graded Exercise Programs or programs based on the premise that patients are misperceiving their activity limits or illness must be avoided. (emphasis in original document)

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?

 

[Dr. Yes]

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 (http://www.minddisorders.com/Br-Del/Cognitive-behavioral-therapy.html)... the bold print mine:

"Cognitive therapy is a psychosocial (both psychological and social) therapy that assumes that faulty thought patterns (called cognitive patterns) cause maladaptive behavior and emotional responses. The treatment focuses on changing thoughts in order to solve psychological and personality problems. Behavior therapy is also a goal-oriented, therapeutic approach, and it treats emotional and behavioral disorders as maladaptive learned responses that can be replaced by healthier ones with appropriate training. Cognitive-behavioral therapy (CBT) integrates features of behavior modification into the traditional cognitive restructuring approach."

"Cognitive-behavioral therapy is a treatment option for a number of mental disorders, including depression, dissociative identity disorder , eating disorders, generalized anxiety disorder , hypochondriasis , insomnia , obsessive-compulsive disorder , and panic disorder without agoraphobia ."

There is no mention here of applications to real physical illness except when it goes on to state:

"Precautions:
Cognitive-behavioral therapy may not be appropriate for all patients. Patients with significant cognitive impairments (patients with traumatic brain injury or organic brain disease, for example) and individuals who are not willing to take an active role in the treatment process are not usually good candidates."

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:

"For example, chronic pain behaviors are believed to be maintained in large part by attention from others."

http://media.wiley.com/product_data/excerpt/22/04700213/0470021322.pdf

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:

CBT is used to improve coping and symptom management of many chronic illnesses, including asthma, diabetes and heart disease and much has been written about its application in these conditions as well as CFS.

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.

 

[gracenote]

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. Maybe tomorrow.

 

[jspotila]

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.

 

[starryeyes]

Dr. Yes wrote: 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.

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: