Lancet Editorial - Peter White & Trudie Chalder CFS: treatment without a cause

[Firestormm]

Am probably out of my depth here but the authors of CBT in ME have also looked and published CBT in MS for example, haven't they?

Was that the same approach? I only did a short google but came up with a few 'hits' and this one looked at 'fatigue' in MS using CBT and Chalder was an author: http://www.ncbi.nlm.nih.gov/pubmed/18256342 2008

'The results from this RCT suggest that CBT was a more effective treatment for MS fatigue than RT, but that both treatments resulted in significant improvements in fatigue which were maintained over the 6-month follow-up period.'

All right the above example is a little 'old' and CBT here is applied differently I suppose (haven't read the whole thing) and it was compared to Relaxation Therapy - but it would be interesting to discover if this type of CBT uses similar language to that used in the ME studies and applications I think.

I guess my point is that CBT is used to 'treat' and overcome 'fatigue' in MS and I am wondering if it can be compared? Here's the beginning of the introduction from the above paper:

'Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system. There is substantial variability in the symptoms experienced by patients, but between 76% and 97% of patients complain of fatigue (14). The pathophysiological mechanisms of this fatigue are still poorly understood (5), but for many, fatigue is one of their more debilitating symptoms, having a substantial impact on their quality of life and ability to carry out day-to-day tasks (2,6,7)....'

Ok so far with the language? And then later:

'...This model proposes that primary disease factors trigger the initial symptom of fatigue in MS, and the fatigue is perpetuated or worsened depending on how people react to the fatigue cognitively, emotionally, behaviorally, and physiologically...'

Here they seem to suggest that the 'fatigue' is largely based on one's 'reaction' i.e. that a patient has some control of this debilitating symptom.

Sound familiar?

 

[Esther12]

If that's the CBT for fatigue in MS study I'm thinking of, they end up with MS patients feeling less fatigue than the healthy population, and make it clear that the subjective measures they are using may not represent actual levels of disability and exaggerate the efficacy of treatments. To me, it was interesting to see how the problems with these sorts of studies are more honestly discussed with MS, than CFS.

I cant remember the details, but didn't this study show CBT for MS to be much more effective than CBT for CFS? And the control therapy (relaxation) was really effective too? I think that there may have been a discussion of it in the PACE thread.

 

[Dolphin]

Am probably out of my depth here but the authors of CBT in ME have also looked and published CBT in MS for example, haven't they?

Was that the same approach? I only did a short google but came up with a few 'hits' and this one looked at 'fatigue' in MS using CBT and Chalder was an author: http://www.ncbi.nlm.nih.gov/pubmed/18256342 2008

'The results from this RCT suggest that CBT was a more effective treatment for MS fatigue than RT, but that both treatments resulted in significant improvements in fatigue which were maintained over the 6-month follow-up period.'

All right the above example is a little 'old' and CBT here is applied differently I suppose (haven't read the whole thing) and it was compared to Relaxation Therapy - but it would be interesting to discover if this type of CBT uses similar language to that used in the ME studies and applications I think.

I guess my point is that CBT is used to 'treat' and overcome 'fatigue' in MS and I am wondering if it can be compared? Here's the beginning of the introduction from the above paper:

'Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system. There is substantial variability in the symptoms experienced by patients, but between 76% and 97% of patients complain of fatigue (14). The pathophysiological mechanisms of this fatigue are still poorly understood (5), but for many, fatigue is one of their more debilitating symptoms, having a substantial impact on their quality of life and ability to carry out day-to-day tasks (2,6,7)....'

Ok so far with the language? And then later:

'...This model proposes that primary disease factors trigger the initial symptom of fatigue in MS, and the fatigue is perpetuated or worsened depending on how people react to the fatigue cognitively, emotionally, behaviorally, and physiologically...'

Here they seem to suggest that the 'fatigue' is largely based on one's 'reaction' i.e. that a patient has some control of this debilitating symptom.

Sound familiar?

I read the study. It is quite similar to the CBT therapy for CFS.

However, just because Rhona Moss-Morris & Trudie Chalder are now expanding in to MS, it doesn't make their therapy any more acceptable to me.

Also, people with MS don't seem to have the unusual response to exercise seen in ME/CFS e.g. see recent White*, Light et al study http://forums.phoenixrising.me/show...se-in-CFS-MS-and-Controls&highlight=sclerosis

* not PD White

If that's the CBT for fatigue in MS study I'm thinking of, they end up with MS patients feeling less fatigue than the healthy population,

Yes, a lot better! Hard to believe.

and make it clear that the subjective measures they are using may not represent actual levels of disability and exaggerate the efficacy of treatments. To me, it was interesting to see how the problems with these sorts of studies are more honestly discussed with MS, than CFS.

They did it more than the ME/CFS studies alright. Still not enough for me.

I cant remember the details, but didn't this study show CBT for MS to be much more effective than CBT for CFS?

Yes

And the control therapy (relaxation) was really effective too? I think that there may have been a discussion of it in the PACE thread.

Yes, and Yes.

 

[Firestormm]

The therapy isn't acceptable to me either I was just trying to demonstrate the language used is as similar as the approach i.e. a blanket one. 'Any 'fatigue' then get CBT!'

The CBT I have been involved with personally as a patient, was useful in that it tried to teach me acceptance. Indeed I sought out counseling because I was unable to accept the limitations imposed by my conditions and kept fruitlessly fighting against them and beating myself up about my 'failure' to push through like I presumed everyone could.

This led to me getting all ******-** about the impositions of my 'new life' and was part of the supposed 'boom and bust' cycling. But like I said before - to my knowledge I have not partaken of the PACE protocol of CBT and neither - to my knowledge - have I been taught to overcome my illness beliefs - unless of course you consider my belief to have been that 'I can fight this' which sadly proved to not be the case.

For the record - from the papers that I have managed to read I do question the ability to objectively measure progress and report the results as well as the language used so often and then spun in the press. I have also always regarded CBT as a 'therapy' and not a 'treatment' for my conditions. Relatedly, I have sought 'help' for dealing/managing my limitations and 'new life' almost every time I have relapsed following a protracted and diagnosed 'viral infection' that has dragged me from my new-found (and hard-won) plateau.

Not once have my primary diagnoses been questioned as being incorrect or as being anything other than chronic and debilitating long term conditions and the only additional diagnosis (on occasion) has been depression caused by (in part) my unwillingness to accept and effectively adjust. Something that those concerned (if not me) found perfectly understandable.

 

[Snow Leopard]

I wouldn't have nearly as much issues with CBT if they used the Friedberg/Jason type models, simply where coping and management is the goal, rather than "recovery". My problem is this frequent talk of recovery and dishonest cherry picking of results by certain individuals to make it look like recovery is possible.

 

[oceanblue]

Just to join in the fun.

Yes, that Rona Moss-Morris stuy on CBT for MS did find CBT worked so well that patients had better-than-healthy levels of fatigue; it also found that Relaxation Therapy worked very well (and was not statistically significantly different from CBT). Also the same study did acknowledge the problem of self-report bias.

However, the results for CBT in MS are all over the place and one review, which I have now lost, concluded that what was needed was yet more reviews/meta-analyses of the small no. of CBT for MS trials to date (which overall are inconclusive) but some decent trials. The same applies to CBT for fatigue in Rheumatoid Arthritis and SLE.

Finally, MS patients respond very differently to exercise than CFS patients. The Lights gene expression study showed this for gene expression but also for self-rated fatigue and pain after moderate exertion. And exercise as a treatment for MS was first trialled after reports from MS patients that exercise helped fatigue. MS organisations are generally supportive over exercise for MS, presumably because their members respond very differently to exercise than CFS patients.

 

[Enid]

Sorry can't see this as fun oceanblue - far too much coming to light now of the pathologies involved (real medical understanding - no games).

 

[Dolphin]

The therapy isn't acceptable to me either I was just trying to demonstrate the language used is as similar as the approach i.e. a blanket one. 'Any 'fatigue' then get CBT!'

The CBT I have been involved with personally as a patient, was useful in that it tried to teach me acceptance.

That's the opposite of Dutch/Nijmegen CBT anyway:

Getting Rid of the Patient Label

Many patients find it hard to stop seeing themselves as
patients. The term chronic fatigue syndrome already seems to
imply a permanent condition. The fact that many CFS
patients have been suffering from symptoms for quite
some time before they are referred for CBT does not
contribute to their developing an optimistic outlook as far
as a full recovery is concerned. In addition, patients who
are referred to a psychotherapist for CFS generally
assume that they will learn to cope with their complaints
rather than learn to perceive themselves as healthy
individuals again. This is why shedding the patient
label should be one of the first points on the treatment
agenda. In the final phase of the treatment this point is
raised again when the patient is asked what he thinks still
needs to be done before he can replace the marker
reading patient by a label indicating healthy. The
response of healthy individuals who are suffering from all
kinds of flu-like symptoms will be quite different from the
reactions of CFS patients, who, when they are incidentally
experiencing symptoms again, will usually interpret
signals from the body as symptoms of CFS instead of
normal and temporarily fluctuations of the body.

Sounds different from PACE Trial CBT, except maybe in the initial stages where they try to get people to get well by sticking to the program.

 

[Snow Leopard]

A side note, Dr Andrew Lloyd and Dr Rosanne Coutts were interviewed on Radio National (Australia) and both seemed to be emphatic that CBT was not a cure. Which seems notable given the focus mentioned above (and the 'is recovery possible after CBT') study a while back.

 

[Esther12]

I thought I might mention in here that the follow up study for FITNET showed no statistical difference between treatment and control groups after more time had passed.

"Just because we don't understand it, doesn't mean we can't make money from treating it. Ineffectually."

http://pediatrics.aappublications.org/content/early/2013/05/08/peds.2012-2007.abstract

Internet-Based Therapy for Adolescents With Chronic Fatigue Syndrome: Long-term Follow-up

1. Sanne L. Nijhof, MDa,
2. Loudy P. Priesterbach, BSca,
3. Cuno S. P. M. Uiterwaal, MD, PhDb,
4. Gijs Bleijenberg, PhDc,
5. Jan L. L. Kimpen, MD, PhDa, and
6. Elise M. van de Putte, MD, PhDa

1. aDepartment of Pediatrics, Wilhelmina Children’s Hospital, and
2. bJulius Centre for Health Sciences and Primary Care, University Medical Centre Utrecht, Utrecht, Netherlands; and
3. cExpert Centre for Chronic Fatigue, Radboud University Nijmegen Medical Centre, Nijmegen, Netherlands

Abstract

OBJECTIVE: Cognitive behavioral therapy (CBT) is known to be an effective treatment of adolescents with chronic fatigue syndrome (CFS), but its availability is limited. Fatigue in Teenagers on the Internet (FITNET), an Internet-based CBT program for adolescents with CFS, has been developed as an alternative to face-to-face CBT. Recently, its short-term effectiveness has been proven in a randomized clinical trial. Here we aimed to assess the long-term outcome of CFS in adolescents after FITNET treatment and after usual care. In addition, factors related to recovery at long-term follow-up (LTFU) for adolescents treated with the FITNET program were investigated.
METHODS: The study was an LTFU of participants of the FITNET trial. Data were completed for 112 (88.2%) of 127 approached FITNET study participants. Primary outcomes were fatigue severity (Checklist Individual Strength–20), physical functioning (87-item Child Health Questionnaire), and school/work attendance.
RESULTS: After a mean follow-up of 2.7 years, 66 (58.9%) adolescents had recovered from CFS. Most adolescents who recovered directly after treatment with FITNET were still recovered at LTFU. At LTFU there was no difference between the recovery rates for the different treatment strategies (original randomization: FITNET [64%] versus any form of usual care [52.8%]). Per additional month of “pretreatment disease duration,” the odds for recovery were 4% lower (odds ratio: 0.96; 95% confidence interval: 0.93–0.99; P = .016), and per added point on “focus on bodily symptoms” (Body Consciousness Scale) of the mother (0–20 points) the odds for recovery were 11% lower (odds ratio: 0.89; 95% confidence interval: 0.80–0.99; P = .029).
CONCLUSIONS: The short-term effectiveness of Internet-based CBT on adolescent CFS is maintained at LTFU. At LTFU, usual care led to similar recovery rates, although these rates were achieved at a slower pace.