Long-term follow-up after cognitive behaviour therapy for chronic fatigue syndrome

[user9876]

the small drop in physical function with increasing fatigue ie those recovered are having more fatigue as time goes on - just doesnt add up; CFS patients experience clear problems with physical function and social function and fatigue --- one wouldnt fall without the other

when it doesnt add up.....?

If changes are small it might add up. The scales are in no way linear so there may be places in the scales where quite big changes in physical function don't lead to big changes in the question answers and numbers. But if that is the case all their stats are basically rubbish.

 

[Sean]

...it would be wrong to compare to healthy people.

Nothing wrong with comparing to healthy people, though no doubt there can also be value in comparing to other sub-populations (e.g. elderly), other major diseases (e.g. multiple sclerosis, cancer, etc), and in other ways (e.g. case-control).

 

[slysaint]

you all might want to 'compare notes' with the discussion here (if you are not already):
http://forums.phoenixrising.me/inde...raud-or-incompetence.50183/page-6#post-831370

 

[RogerBlack]

Nothing wrong with comparing to healthy people, though no doubt there can also be value in comparing to other sub-populations (e.g. elderly), other major diseases (e.g. multiple sclerosis, cancer, etc), and in other ways (e.g. case-control).

That's not what I meant.
A proper definition of recovery is to compare the patients to their normal functioning with whatever other diseases or properties they have, not to healthy people, as that standard will never be reached, as the CFS population is not abnormally otherwise healthy.
To insist on recovery being precisely to this level is probably silly. I'd want a level of recovery at which at least half of those recovered to that level could work fulltime. (idly wondering on employability with a 30 year gap in my CV and no work experience ever)

However, this error is in the noise if you're using 65 as a limit for 'recovered' on the SF36.

 

[Valentijn]

They don't mention that the Dutch form of CBT encourages patients to see themselves as not CFS patients.

Good point. It's a specific part of the Dutch CBT process. I remember my Dutch psychologist exclaiming "You are not a patient!"

It goes to the specific brain-washing process, which is purely aimed at changing questionnaire or outcome measurements. Instead of being told they will recover if they stop believing they are fatigued and then being handed a fatigue questionnaire, they're being told they need to stop believing they are CFS patients and then asked if they have CFS.

Basic quackery, in other words.

 

[user9876]

That's not what I meant.
A proper definition of recovery is to compare the patients to their normal functioning with whatever other diseases or properties they have, not to healthy people, as that standard will never be reached, as the CFS population is not abnormally otherwise healthy.
To insist on recovery being precisely to this level is probably silly. I'd want a level of recovery at which at least half of those recovered to that level could work fulltime. (idly wondering on employability with a 30 year gap in my CV and no work experience ever)

However, this error is in the noise if you're using 65 as a limit for 'recovered' on the SF36.

It is normal in a trial to control for co-morbid disease as otherwise it is unclear as to what the treatments are treating.

Don't confuse improvement with recovery. If some patients improved enough to work full time then this would be good but that is not recovery or even remission.

 

[lansbergen]

Don't confuse improvement with recovery. If some patients improved enough to work full time then this would be good but that is not recovery or even remission.

I agree

 

[Snow Leopard]

Something to look forward to … not.

Heh.

Or maybe just the effect of biased (optimistic) questionnaire answering behaviour wears off after a few years.

 

[RogerBlack]

It is normal in a trial to control for co-morbid disease as otherwise it is unclear as to what the treatments are treating.

Don't confuse improvement with recovery. If some patients improved enough to work full time then this would be good but that is not recovery or even remission.

I'm not.

The patients in a study related to the above were being compared against a (Dutch?) household survey, and someone made the argument that you don't know that the patients in the household survey were healthy.
I was trying to point out that this is the wrong metric, and you want to compare against equally otherwise healthy as the CFS patients, and screening for only healthy people in your comparator population means comparison isn't valid.
(yes, you can control for this by making alterations to the numbers for healthy people to a limited extent, but comparing them against a population survey of age-matched controls isn't invalid).

 

[Effi]

Frank Twisk sent a Letter to the Editor in response to this study. It got rejected within the hour, because, according to the Editor in Chief, it is 'not suitable for publication in their journal'...

Long-term follow-up confirms:
Cognitive behaviour therapy (CBT)/graded exercise study (GET)
is not an effective therapy for chronic fatigue syndrome (CFS).


A recently published study [1] analysed
the long-term effects of cognitive behaviour therapy (CBT) [2-5]
on fatigue severity (CIS F) and physical functioning (SF-36 PF)
in chronic fatigue syndrome (CFS).

As the authors acknowledge:
"sustainment of treatment effects is not self-evident" [1],
even when subjective measures are considered.

This is confirmed by
the observation that the difference between groups
was not significant for fatigue at short-term follow up and
the fact that
the improvement in physical functioning post-treatment
partly vanished.

"At long-term follow-up
fatigue severity significantly increased [..] and
physical functioning significantly decreased [..]
compared to posttreatment assessment." [1].

Despite this ... (read on)

 

[Dolphin]

I'm not.

The patients in a study related to the above were being compared against a (Dutch?) household survey, and someone made the argument that you don't know that the patients in the household survey were healthy.
I was trying to point out that this is the wrong metric, and you want to compare against equally otherwise healthy as the CFS patients, and screening for only healthy people in your comparator population means comparison isn't valid.
(yes, you can control for this by making alterations to the numbers for healthy people to a limited extent, but comparing them against a population survey of age-matched controls isn't invalid).

To be included in CFS studies, a lot of chronic illnesses will be exclusions.

So if such people are recovered from CFS, it's not unreasonable to expect that scores should be close to those of healthy people of a similar age.

 

[Dolphin]

Frank Twisk sent a Letter to the Editor in response to this study. It got rejected within the hour, because, according to the Editor in Chief, it is 'not suitable for publication in their journal'...

http://www.hetalternatief.org/CGT GET Lange Termijn Twisk Janse 2017 1395.htm

Onderstaande brief aan de hoofredacteur van Journal of Psychosomatic Research,

in reactie op een analyse van de lange termijn-effecten van CGT/GET in Nederlandse studies,

werd (binnen één uur) afgewezen voor publicatie door de hoofdredacteur,

omdat het volgens de hoofdredacteur "niet geschikt is voor publicatie in zijn tijdschrift".



De analyse van Janse en collega's, waaronder een ver familielid (?),

bevestigt de conclusies die ook op basis van de PACE-trial getrokken kunnen worden:

• het subjectieve effect is bescheiden en op langere termijn uitgewerkt,
• het subjectieve effect is onvoldoende om 'normale waarden' te bereiken, en
• er is geen enkel effect als we uitsluitend naar objectieve maatstaven kijken.

De analyse van Janse e.a. bevestigt 'het failliet van het (bio)psychosociale verklaringsmodel'.



Een nauwgezette analyse van studies, waarvan de meeste afkomstig zijn van het NKCV,

is kennelijk 'niet geschikt' voor het 'clubblaadje' van 'psychomatiek-geloofsgenoten'.



De redactie acht het 'wel geschikt' dat enkele 'geloofsgenoten' stellen dat een grote groepen

CVS-patiënten 'normale waarden' bereiken t.a.v. vermoeidheid en fysieke beperkingen na CGT/GET.

Dit terwijl die 'normale waarden' bij lange na niet 'normaal' zijn volgens andere NKCV-studies.

https://www.bing.com/translator

The following letter to the editor of Journal of Psychosomatic Research, in response to an analysis of long-term effects of CBT/GET in Dutch studies, (within one hour) was rejected for publication by the editor-in-Chief, because, according to the Chief Editor is not suitable for publication in its magazine".

The analysis of J. and colleagues, including a distant relative(?), confirms the conclusions that also on the basis of the PACE trial can be drawn:
- the subjective effect is modest, and in the longer term,
- the subjective effect is insufficient to 'normal ranges' reach, and
- There is no effect if we look only to objective standards.

The analysis of J. and others confirms 'the bankruptcy of the (bio)psychosocial explanation model'.

A careful analysis of studies, most of which come from the NKCV, is obviously 'not suitable' for the 'leaf' from 'psychomatiek club-fellow believers'.

The editor considers it 'suitable' that some 'fellow believers' claim that a large groups CFS patients' normal ranges 't.a.v. reach fatigue and physical limitations after CGT/GET.

This while that 'normal' not 'normal' values are NKCV-according to other studies.

 

[Snow Leopard]

It's well known that J of Psycho Res is willing to publish biased studies and unwilling to publish criticisms of those biased studies.

 

[slysaint]

I found this comment under the Harriet Hall article (on another thread)

"Well, but CBT is not a black box. You have to open up the box and see what is inside. If the purpose of CBT is to try and convince patients that their belief they are physically ill is "false," and that they would function better if they came to believe that they could overcome their illness by ignoring its symptoms...then CBT can start to look rather sinister.

Imagine a program of CBT designed to convince diabetic patients that they really do not have a problem with their blood sugar, and what they really need to do is overcome their irrational fear of eating sugary junk food at irregular hours and skipping meals, and stop monitoring their blood sugar because doing this reinforces their "false beliefs" about having an illness. You would rightly think this was not just useless, but very damaging to these patients. Yet this is pretty much the aim of the PACE trial's CBT program - to convince patients that their pain, fatigue and debilitation is something to be ignored, and that they must continually increase physical activity, and disregard it if that activity worsens their symptoms.

On the other hand, I completely agree that coping with a serious illness like ME/CFS is extremely tough on the psyche, and that therapy for the emotional fallout can absolutely be helpful - just as it could be for any other physical illness. I have benefited greatly from therapy myself since falling ill seven years ago. But I have never had a therapist try to convince me that I am being irrational to manage my disease in the only way I can - by carefully monitoring, curbing, and pacing all forms of physical activity. That's where helpful therapy differs from the CBT program included in the PACE trial.

Always be careful and critical of the part of CBT that identifies which bad "mental habits" need to be overcome. CBT can all too easily be used as a political tool to try and fit patients into a Procrustean bed of an incorrect disease model, with devastating consequences."

 

[arewenearlythereyet]

I found this comment under the Harriet Hall article (on another thread)

"Well, but CBT is not a black box. You have to open up the box and see what is inside. If the purpose of CBT is to try and convince patients that their belief they are physically ill is "false," and that they would function better if they came to believe that they could overcome their illness by ignoring its symptoms...then CBT can start to look rather sinister.

Imagine a program of CBT designed to convince diabetic patients that they really do not have a problem with their blood sugar, and what they really need to do is overcome their irrational fear of eating sugary junk food at irregular hours and skipping meals, and stop monitoring their blood sugar because doing this reinforces their "false beliefs" about having an illness. You would rightly think this was not just useless, but very damaging to these patients. Yet this is pretty much the aim of the PACE trial's CBT program - to convince patients that their pain, fatigue and debilitation is something to be ignored, and that they must continually increase physical activity, and disregard it if that activity worsens their symptoms.

On the other hand, I completely agree that coping with a serious illness like ME/CFS is extremely tough on the psyche, and that therapy for the emotional fallout can absolutely be helpful - just as it could be for any other physical illness. I have benefited greatly from therapy myself since falling ill seven years ago. But I have never had a therapist try to convince me that I am being irrational to manage my disease in the only way I can - by carefully monitoring, curbing, and pacing all forms of physical activity. That's where helpful therapy differs from the CBT program included in the PACE trial.

Always be careful and critical of the part of CBT that identifies which bad "mental habits" need to be overcome. CBT can all too easily be used as a political tool to try and fit patients into a Procrustean bed of an incorrect disease model, with devastating consequences."

Ahh but gluttony is not as easy a stick to bash people with as sloth apparently