Cognitive behaviour therapy for chronic fatigue syndrome: Differences in treatment outcome between a

[alex3619]

There is just too much contrary evidence at this point for 'experts' to not see, imo. It's unconscionable and unacceptable.

(my bolding) We should never accept it. Its not just our right, its our duty to not accept it.

 

[Luther Blissett]

Which phobia produces symptoms for 24 hours or longer after exposure to the object of fear has ended but not during or in anticipation of the exposure? It's like these people are making an extreme effort to avoid checking the validity of their own ideas, and unfortunately they seem to be very good at it.

Chronohodophobia

 

[JaimeS]

Chronohodophobia

LOLOL!

I suffer from this, too. Written a lot of time travel stories...

 

[Snowdrop]

It seems to me that with regards to culpability there is no one set level.
If you are a Dr practitioner seeing patients and you believe in the efficacy of a treatment you've been told by authority works--to me you are less culpable than the person who is an expert--and here an expert doesn't have to be self proclaimed--if you are oft quoted in the media on the subject you claim the mantle of expert and that carries a level of culpability that cannot be escaped from by claiming genuine belief or having been fooled by your own understanding when there is good evidence to the contrary and/or the evidence for the belief is known to be faulty.

 

[alex3619]

It seems to me that with regards to culpability there is no one set level.
If you are a Dr practitioner seeing patients and you believe in the efficacy of a treatment you've been told by authority works--to me you are less culpable than the person who is an expert--and here an expert doesn't have to be self proclaimed--if you are oft quoted in the media on the subject you claim the mantle of expert and that carries a level of culpability that cannot be escaped from by claiming genuine belief or having been fooled by your own understanding when there is good evidence to the contrary and/or the evidence for the belief is known to be faulty.

One of my favourite words that describes this is ineptitude. Medical ineptitude occurs when the evidence exists and is ignored. Let us be clear, many doctors and even psychiatrists are also victims of these practices, though they don't have to pay the heavy price.

 

[Comet]

We have this myth that people are rational creatures. It underpins much of economic theory for example. Yet the evidence shows otherwise.

To prove deliberate fraud etc. requires evidence. We may now have that for PACE, but I am unaware of anyone pursuing this currently. If my brain were working better I would be pursuing that angle.

I suspect most cases of fraud are people fooling themselves, though deliberate scientific fraud is often found. Take a typical charlatan offering a quack treatment. Sure, many will be deliberately misrepresenting, but I think many cases are from doctors or others who find something they think works, and are blind to contrary evidence because they become committed to their belief. They focus on apparent successes, and ignore failures, and surround themselves with True Believers, i.e. patients who think they have been helped.

Small schools within psychiatry sometimes follow that path.

I am also concerned that along with citation circles we need to be concerned with review circles. If only True Believers review their papers then they could all be published regardless of genuine merit.

In the case of low grade psychiatry we have a long history of nonscience, pseudoscience, and psychobabble. Psychiatry, more than any other professional discipline, needs to clean up its act. Major systemic methodological flaws basically guarantee bad science at best for much of psychiatry, and fraud at worst. Either psychiatry is scientific or it isn't. Under a scientific claim almost all diagnoses vanish because very very few are provably well founded.

There is a move afoot in the US, NIMH I think, to completely revamp diagnostic criteria, essentially starting from scratch. There needs to be a movement to switch to objective evidence and rigorous scientific methodology. If I were being treated for a psychiatric disorder I would want objective and indisputable positive outcomes in the literature. Psychiatry systematically fails to deliver those. The problem is that most of psychiatry would be under threat if that happened, as most of it is either unscientific or of dubious scientific providence, and so there could be expected to be massive systemic resistance from psychiatrists.

Psychiatrists are not immune to becoming self-deluding.

I wasn't trying to accuse anyone of fraud. I'm not sure where that came from. It was not my desire to express that at all.

I was merely saying that there is just too much contrary evidence at this point for 'experts' to not see, imo.

Wasn't trying to be argumentative either. . But, regardless of cause, for 'experts' to prescribe treatments without appropriate knowledge is, imo, unconscionable and unacceptable.

 

[alex3619]

I wasn't trying to accuse anyone of fraud. I'm not sure where that came from. It was not my desire to express that at all.

I wasn't trying to imply you were. I was just trying to clarify things.

 

[Comet]

I wasn't trying to imply you were. I was just trying to clarify things.

Thanks. .

 

[matt3n]

I think this emphasises the fact that nobody actually knows what CBT is. Is it just talking to somebody, or talking to somebody with a nice blue cardigan, or talking to somebody you wouldn't want to upset so you say you are better to keep them happy or talking to someone with something useful to say that you could not read in a book (and if so what the heck is it?). It would be useful to know because it it's just nice blue cardigans then it would save a lot of expensive 'psychology training'.

I really agree that testing interventions like CBT is nothing like testing a chemical in a lab.

Anything based on mental states and social interactions is inherently difficult to draw conclusions from, because the statistics assumption of a "homogeneous population" is clearly not satisfied (and samples are seldom truly random anyway!).

But what you wrote sounds like a possible misunderstanding of CBT as being the same as "talk therapy" so I thought I would add my 2 cents about it.

I have NO expertise other than a good Psych 101 course back in college, and especially reading "Feeling Good: The New Mood Therapy" by David D. Burns (I consider it my "bible" on CBT as self-help), but I understand it as helping a person identify the mental/logical errors that are making them feel depressed, anxious, stressed, etc. (there are approximately 10 common ones) and addressing each one by finding rational responses to the negative automatic thoughts.

I think it can help people to LIVE with their CFS/FMS etc. but since they are real, *physical* illnesses / handicaps with no known cure (or at least no widely accepted or universally applicable one) -- cognitive therapy can at best help people function a little better while living with it.

That can which actually be a huge benefit. But the therapist and patient have to both understand and accept that the condition and symptoms themselves are "real" and not curable, UNLIKE the way that physical symptoms that go with textbook depression can disappear with a change in thought patterns (or sometimes with a pill).

Otherwise, I would imagine people get *worse* if they're repeated told that their symptoms are *caused* by their own psychology, and if they only thought differently and maybe went out for a good run (!) they would get over it.

I think that's why there is so much controversy about CBT and graded exercise therapy: if applied incorrectly, patients are encouraged to push themselves way too hard and they simply crash, sometimes over and over - getting worse each time!

On the other hand, if applied correctly, they can in many cases improve quality of life...to a degree.

Over time, hopefully professionals everywhere will come to accept the limits of what is and can be known about these chronic conditions experienced by unique individuals who are probably the best experts on our OWN minds and bodies, and treat us with the dignity and respect we deserve - as well as a huge dose of humility about what their area of speciality can and cannot reliably accomplish.

Someday maybe we'll crack a code and medicine will be a science. It's still very much an art, whether most doctors and therapists believe it or not.

I hope I'm not just stating the obvious or repeating what many already know.

I've been reading posts here (mainly on methylation and the "Freddd protocol") for years without posting and recently decided to jump in and see what happens.

Cheers!

No signature yet: I'm diagnosed with CFS and fibromyalgia, anxiety, depression, hypothyroidism, low-functioning adrenals (not Addisons -- diagnosed by an "enlightened" integrative/holistic physician), IBS-D, low-normal testosterone, occasional "brain fog"...and many other bothersome symptoms that keep me at home most of the time. Many of these things have improved with various supplements and medications. High-dose vitamins geared toward supporting methylation seem to have helped the most. CBT performed on my self also helps me get through the bad days and take advantage of the occasional good days (more like "good few hours")--while pacing myself is key to avoiding too much post-exertional malaise and "crashes" the next day.​

 

[Valentijn]

I think that's why there is so much controversy about CBT and graded exercise therapy: if applied incorrectly, patients are encouraged to push themselves way too hard and they simply crash, sometimes over and over - getting worse each time!

This is the only type of CBT which has been studied in ME research. Any time someone is referring to CBT as an evidenced-based treatment for ME, they are referring to CBT being used for symptom denial of a (presumed) psychosomatic disorder, not for coping with a biological disease.

I don't think coping-CBT has ever been studied in ME, so there's no evidence that it's of any use at all.

 

[matt3n]

I don't think coping-CBT has ever been studied in ME, so there's no evidence that it's of any use at all.

Thanks Valentijn! I wasn't sure, or I would have written that myself. I wish they would study what I consider to be "correct" use of these things..

 

[Snowdrop]

@matt3n

There's also the issue of CBT even properly applied as not being suitable for so many people with ME because they are either too sick to attend sessions or sick enough that going to a clinic would be a physical burden.

I'd be interested to know if there is any kind of general consensus as to what portion of the population has this kind of 'wrong' thinking. Are we all subject to it? It would seem that the idea was that all patients could benefit from CBT and it has been described as a 'gold standard' of treatment. Only someone who is not sick with ME could possibly believe such a statement.

 

[matt3n]

@matt3n

There's also the issue of CBT even properly applied as not being suitable for so many people with ME because they are either too sick to attend sessions or sick enough that going to a clinic would be a physical burden.

I'd be interested to know if there is any kind of general consensus as to what portion of the population has this kind of 'wrong' thinking. Are we all subject to it? It would seem that the idea was that all patients could benefit from CBT and it has been described as a 'gold standard' of treatment. Only someone who is not sick with ME could possibly believe such a statement.

Hi @Snowdrop ,

I doubt I've ever met a single person that doesn't make some those logical errors every day. Mentally, we're all on a continuum: no one is 100% "basket-case" in all areas and no one is 100% emotionally perfect.

So to me CBT is simply a tool for better living - liking eating well and exercising (as able). It's ridiculous to think that it can "cure" ME, or even reduce physical symptoms -- and that's exactly the problem with these studies and the way it's apparently applied by many practitioners.

I agree about getting to appointments being a burden. I would love to be able to go to a good CBT practitioner sometimes to help me deal with being the only child of aging parents, with no partner or kids of my own... but it would be far too much of an ordeal, so I use the book I mentioned instead. That way I guess I also avoid peoples' faulty assumptions about the nature of my illness getting in the way of progress on the (mainly internal) things I CAN control.

It's really sad that they torment people who already suffer more or less relentlessly by making them feel like they're crazy or lazy because they don't get better.

 

[Snowdrop]

I doubt I've ever met a single person that doesn't make some those logical errors every day. Mentally, we're all on a continuum: no one is 100% "basket-case" in all areas and no one is 100% emotionally perfect

I just call that life. Whatever errors in logic that are supposed to be challenged using CBT I think of as the challenges of everyday living.
If you find something useful in a book that uses CB thinking then it's all good. The point is to function as best we can.

 

[JaimeS]

This is the only type of CBT which has been studied in ME research. Any time someone is referring to CBT as an evidenced-based treatment for ME, they are referring to CBT being used for symptom denial of a (presumed) psychosomatic disorder, not for coping with a biological disease.

I don't think coping-CBT has ever been studied in ME, so there's no evidence that it's of any use at all.

Friedberg put out a recent paper about why patients hate CBT that was well-reasoned except IMO, at least on PR, we seem to know the difference between CBT as it's taught in medical school vs the "CBT" practiced in the PACE trial; and we seem to view GET vs CBT in a somewhat different light. Just from reading posts for the past year or two, it seems that some have reported that coping-based CBT has helped them, whereas I am unaware of anyone posting that GET of any sort has been helpful... separating GET from pacing, where you do more if / when you feel better.

At least on the surface of things, Friedberg's intent in publishing this paper was to highlight the differences between CBT as he intends to study it, vs 'brainwashing the patient to believe s/he is not sick' in preparation for a study for which he was just funded. On the surface, this appears to be a study on coping-based CBT in ME.

However, the study design is meh (to my novice eye), and focus is at least in part on adverse life events. Moreover, I can't help but resent that funding continues to go towards psychological intervention because there is supposed 'high quality evidence' that this is what works in ME. I can't get super-excited because it isn't part of Friedberg's modus operandi to try and convince patients they aren't sick, if his focus is on, say, childhood trauma contributing to ME.

Friedberg was funded by the NIH to the tune of 1.5 million for his study on coping behaviors in ME.

Finally, Cort just wrote about how few studies are submitted to the NIH for approval per year on ME, CFS, or ME/CFS. It was dismal. I fear researchers have gotten used to being turned down and the message is now that the NIH will only support psychological intervention studies. Whether that is still the case or not may be immaterial: it's the perception. The grant process is onerous. If people who head departments at Stanford U. get turned down -- which was highly publicized -- from the point of a new or established biomedical researcher, what's the point in going through all the work? Researchers may still think, rightly or not, that the only way they'll get funding is through the patients, and through private donations.

-J

 

[medfeb]

This is the only type of CBT which has been studied in ME research. Any time someone is referring to CBT as an evidenced-based treatment for ME, they are referring to CBT being used for symptom denial of a (presumed) psychosomatic disorder, not for coping with a biological disease.

I don't think coping-CBT has ever been studied in ME, so there's no evidence that it's of any use at all.

This is an important point. CDC recommends CBT and have justified this because CBT helps lots of chronic conditions. Leaving aside the disputes highlighted above on the correctness of that assertion, the key point is that in this disease, CBT has been studied to reverse fear of activity, false cognitions, etc. Trying to co-opt the term "CBT" to mean something different than what has been studied for ME at this point is likely to confuse doctors and puts patients are risk of harm - especially when the intended impact of that therapy is not stated or is just handwaving.

 

[Dolphin]

@A.B.'s idea is nice. Another variation on this theme is to include an "organic" control (e.g. MS, lupus). If its CBT for CFS, the control group will probably exhibit similar improvements to the target group.

A trial of a similar form of CBT on people with multiple sclerosis with fatigue found that after treatment and at follow-up patients with multiple sclerosis fatigue reported lower fatigue scores than healthy people (Chalder Fatigue (likert scoring): 7.90 at post-treatment, 8.99 at 3 months follow-up)!

Psychosom Med. 2008 Feb;70(2):205-13. doi: 10.1097/PSY.0b013e3181643065. Epub 2008 Feb 6.
A randomized controlled trial of cognitive behavior therapy for multiple sclerosis fatigue.
van Kessel K1, Moss-Morris R, Willoughby E, Chalder T, Johnson MH, Robinson E.

 

[Dolphin]

This exercice phobia theory is just the stupidest and most illogical element of their theory. Trudie Chalder keeps telling how she has to first help people reduce their activity to reach a baseline upon which to built up stamina, ie people are doing too much.

In which phobia disorder do you have to first reduce the exposure to the feared element? This is just insane how such poorly designed theories make it in the medical field.

Also they also say we boom and bust with regard to exercise and activity. That doesn't sound like a phobia i.e. that you expose yourself last to something some of the time

 

[Dolphin]

Over time, hopefully professionals everywhere will come to accept the limits of what is and can be known about these chronic conditions experienced by unique individuals who are probably the best experts on our OWN minds and bodies, and treat us with the dignity and respect we deserve - as well as a huge dose of humility about what their area of speciality can and cannot reliably accomplish.​

There have been more claims that CBT can lead to recovery in the last 5 years than there were previously.
​

 

[Dolphin]

Dubious claim:

Research has shown that fatigue related behaviour and beliefs play a crucial role in the persistence of CFS [5–7].

[5] T. Chalder, S. Butler, S. Wessely, In-patient treatment for chronic fatigue syndrome, Behav. Psychother. 24 (1996) 351–365.
[6] J. Vercoulen, C. Swanink, J. Galama, J. Fennis, P. Jongen, O. Hommes, J. van der Meer, G. Bleijenberg, The persistence of fatigue in chronic fatigue sydrome and multiple sclerosis: development of a model, J. Psychosom. Res. 45 (1998) 507–517.
[7] H. Knoop, J. Prins, R. Moss-Morris, G. Bleijenberg, The central role of cognitive processes in the perpetuation of chronic fatigue syndrome, J. Psychosom. Res. 68 (2010) 489–494.