One of the commonest arguments against psychologists like myself,
i.e. people who believe that CBT/GET should be an adjunct, rather
than basis of the management of CFS/ME, is that 'we're out-of-date'.
We've been informed that CBT is often used to help in the management
of cancer, MS and rheumatoid arthritis, though the
writers invariably fail to mention that such interventions tend to
be limited to individuals with emotional complications and those who
do not respond to counselling e.g. by MacMillan nurses. Nor do they
generally mention that the effectiveness of CBT is often modest and
limited to emotional variables. These impressions are shared by the
various support groups dealing with those patients, including the
Terrence Higgins Trust, Cancer Bacup etc. Leaving aside the issue of
cost, the main reasons why I continue to take the position I have is
because of the following:
1. CBT assumes that psychological factors play a major role in the
aetiology of symptoms and the nature of those factors have been
discussed in detail in many articles and books. There is a covert
assumption of a universal response to CFS/ME, i.e. fear. According to
the CBT model of CFS/ME, this fear leads to avoidance, deconditioning
and stress, which in turn trigger physiological changes, undermining
recovery and complicating the condition. The less covert assumptions
are that there exists a strong association between deconditioning and
fatigue (yet to be proved), and that there is no clear evidence of
pathology which underlies the chronic phase of the illness, hence the
rationale for CBT, even if it's based on assumptions. (NB: Despite
the PR about the need to take a holistic approach and avoid Cartesian
dualism, the proponents of the CBT model have shown a surprising
fondness for the old biomedical paradigm, i.e. if there isn't a
single 'physical' cause or pathway, one can't classify an illness as
a disease. The fact that we're dealing with a mixed population and
that there's unlikely to be a single cause, is of little interest.
Why? Cartesian dualism doesn't do heterogeneous populations and
subsets. Hence the presence of pathology in subgroups is usually
dismissed under the heading of 'inconsistent results', and attention
is thereby directed away from these inconvenient findings and back to
the notion of CFS as a universal, maladaptive psychological response
to a virus etc.)
The CBT model, recently reincarnated but essentially the same,
provides the basis for the type of CBT programmes being discussed in
the medical literature today. It is compatible with biopsychosocial
approach to illness, but there again, one sees signs of
post-modernist, dualistic thinking. Thus in articles on CFS/ME, the
'bio' is limited to a viral trigger and the consequences of stress on
the HPA asis, and virtually everything is psycho-social. Well,
mostly psycho. As in psychiatric. There's little on positive
personality traits like hardiness and optimism, the use of
problem-focused coping, let alone pro-active coping strategies like
pacing (pro-active: to prevent problems). Again, there is the
assumption that everyone responds in the same way. The same, unhelpful way.
CBT is not appropriate for sensible people who use adaptive coping strategies but who could do with some more information and social support. Given the literature, I find it hard to accept comments
that the use of CBT for CFS does not assume that the latter is
psychiatric. If it is not, we need to clarify why if minimal exertion
exacerbates symptoms, the main aim of treatment is to increase
activity. As I've noted before, that is as logical as asking a smoker
with lung cancer to gradually increase the amount they smoke. The CBT
model can't provide an answer based on evidence (the existence of
deconditioning remains an assumption). Why is this important?
The assumptions behind the CBT model limit the type and nature of the
therapeutic options offered to patients. CBT is a relatively rigid
and inflexible approach, which cannot adequately deal with the
complexity of CFS/ME (not just the evidence of pathology but also the
fact that different people respond to illness in different ways,
depending on knowledge, personality, social support, resources
available to them, time, age etc). Though the NICE guidelines
encourage a patient-centered approach, the actual advice limits
therapists to CBT, GET and the untested intervention I've termed
GET-lite. Colleagues who describe CBT in terms of flexible,
multi-component programmes including education and dietary
advice are effectively blurring the boundaries. CBT was not
intended as a psycho-educational intervention for newly diagnosed
patients. If you don't believe me, read the information on
authoritative sites like those of the Royal College of Psychiatrists
and MIND. Psychologists use other interventions to education
medically-ill patients and help them cope. We refer to them variously
as self-management programmes, multi-component or multi-dimensional
programmes, coping effectiveness training (CET), and so on.
2. The above interventions are, based on evidence, as effective and
possibly cheaper than CBT. The important point to make first of all
is that they do not assume that people are adopting inappropriate
coping strategies because of factors such as fear, phobic avoidance
etc. Many are based on another model: the Transactional model of
stress and coping, devised by Richard Lazarus and colleagues (see
below). This is also consistent with a biopsychosocial approach, but
acknowledges the complexity of disease, and most significantly, the
fact that we're all individuals. The alternatives are more practical
too, they allow the therapist to mix and match. If psychologists
identify evidence of psychological distress and maladaptive coping,
then the normal protocol is to offer those affected appropriate
therapies, including CBT. It is recommended that these interventions
form part of a comprehensive programme offered by an
multi-disciplinary team. I believe that this is the most appropriate
approach when it comes to CFS/ME.
What is the evidence that alternatives to CBT work? I calculated
Cohen's delta (d), which basically measures the effectiveness of a
treatment ('effect size') and allows one to compare different
studies. A d of .8 is impressive. Using fatigue as the outcome
measure, I found little difference between the various trials. d
rarely exceeded .6, an indication of a modest effect. So why did NICE
dismiss the alternatives? Why did they leave health professionals
with such a limited number of therapeutic options?
There were at least four published studies on pacing and the type of
programmes I've described. One was probably not of sufficient
quality, so NICE had a good reason to ignore it. There were three
others, two were RCTs and one a perfectly valid, controlled trial.
One of the RCTs wasn't included, though a paper by the same author in
the same issue of the journal was referred to elsewhere. The
researcher found significant improvements on two outcome measures and
this was maintained at follow-up. Cohen's d was .6 if I recall. An
objective reviewer might have been impressed enough to add it to the
list of therapies but to my knowledge, the study wasn't evaluated,
thus reducing the apparent evidence. The other RCT (on pacing) was
classified under GET, though it was classic pacing (patients could
stop when they felt unwell, whereas GET encourages patients to stick
to pre-determined schedules and tolerate any mild to moderate
symptoms). The remaining study was dealt with as follows.
Significant group differences on five outcome measures exceeded the
criteria for 'positive treatment effect' *, so NICE changed two
significant differences to non-significant differences, (they had no
access to raw data so this was not due to a review of the
statistical analysis). A p value of .013 (significant) was changed to
.13 (not of interest) and although that was corrected when it was
pointed out to them at the discussion stage, the conclusion that this
provided additional evidence was not changed. Consequently, the
programme remained categorised as having no effect. The six-month
follow-up was ignored (loss of two validity points), and so on. An
objective evaluation might have concluded that this programme
produced modest results, similar to those found in trials on CBT,
with a d of .6, (though for self-efficacy, it was .8). The main
drawback of the trial was the small number of participants (just over
40), but this was balanced by the fact that it included additional
outcome measures, e.g. to assess symptoms other than fatigue. One
quarter of those in the trial had recovered to such an extent after
six months that they were discharged. That's quite impressive,
though NICE did not see it that way. The BPS reminded them of the
alternatives, including that study, but perhaps it was yet another
'inconvenient truth'? Suffice to say, the modus operandi adopted by
NICE dealt rather elegantly with their 'three-studies-or-we're not
bothered' argument. It allowed them to claim that there is no
evidence for techniques such as pacing etc but whether making
studies disappear and basing views on 'typos' and incomplete
information is good science, is another matter.
I've discussed the details about Cohen's d and NICE's attitude to
alternatives before on Co-Cure. Hence this is simply a review.
3. I may well be out-of-date but my approach to illnesses like CFS/ME
is consistent with those of other psychologists, and I highly
recommend the book edited by Paul Kennedy: 'Psychological Management
of Physical Disabilities', published in 2007 by Routledge. It reveals
that most contributors advocate CBT for some of their patients, but
it is clear they also use alternatives, and often as a first-line
treatment. The main aim when it comes to patients with spinal cord
injuries, heart disease and other conditions is primarily to meet
individual needs and preferences. Options available include
information, counselling, coping skills training, motivational
interviewing, written emotional expression and even aquatic therapy.
The book also reminds us of Lazarus's model of stress and coping,
which is as applicable to CFS/ME as it is to cancer, MS, RA etc.
Out-of-date? Absolutely not.
I wrote many years ago about SMI's (again, on Co-Cure). No support
groups took it up and therefore it was relatively easy for the people
at NICE to promote CBT. They had a clear run. After all, the CRD
review of treatments had made the alternatives disappear, and
support groups did not have the knowledge to promote
them. Incidentally, this is not a problem in the USA, where the team
run by Prof. Jason has worked hard to test alternative strategies
and offer them to patients.
Kennedy's book describes a perfectly reasonable model which can be
tested and used as a basis for management of CFS/ME. It places CBT in
context, and provides strong arguments for a more scientific,
evidence-based debate. I covered the same territory in my PhD more
than ten years ago. I hope it won'tbe anotherten years before the
CFS community looks at this material and recognises the benefits.
* Footnote
If I recall, the criterion for a treatment effect was a significant
group difference on at least two outcome measures.
----------------------------------------------------------------------
Ellen M. Goudsmit PhD CPsychol CSci AFBPsS
* * *
As Dr. Goudsmit notes, psychological approaches are appropriate to dealing with the side effects of CFS (such as depression BECAUSE you can't do the things you like), but are not helpful for the post-viral symptoms, which are not psychological in origin. People with any chronic illness may develop depression because of their health problems, but CFS is no more "caused by depression" than cancer is.
Only about half of CFS patients meet the diagnostic criteria for depression. That means the other half of us are not depressed, and treating us for depression won't do a damn thing. What I need -- what a lot of us Type A CFS-ers need -- is instead for someone to give us permission to do less, instead of urging us to give up our "fear of activity" and trying to do more. Trying to do more is what landed me in bed in the first place. But, instead, I was ordered to push myself -- appropriate advice for someone with depression, but which could be fatal for someone with CFS.
Pacing works. It's the only thing that works. Don't let someone guilt you into pushing yourself. We have PWCs who are permanently bedridden because they gave in to the pushing to do more. But, what we call "pacing", other people call laziness, and when you're seriously ill, it's hard to stand up to them and tell them that they're wrong: it's not laziness, it's self-preservation. It's doing what you need to do to get better. And no matter how much positive thinking you do, it's letting your body rest and get itself well that is the best treatment for CFS, not running around distracting yourself from your symptoms as someone suggested I do.
As Dr. Goudsmit says, there's little attention given to traits like hardiness and optimism. CFS patients tend to be very hardy creatures; they push themselves to the point of collapse. At which point, they are derided by people who don't understand that it's not a matter of picking yourself back up and going back to work the nextday -- that's a physical impossibility.
And optimism? That worked for me for until I realized that Modern Medical Science wasn't making any advances on a cure for CFS. It's hard to stay optimistic when you hear that the only research being done into the cause of your virus is research trying to pin your illness on psychology. We have 70-year-old literature relating ME to polio; information that lies dormant because the powers that be would rather ignore all the patients saying "I had a fever, a virus" and focus on telling us to ignore the physical signs, what we really have is a case of depressive laziness that can be cured by ignoring the objective symptoms and forcing ourselves to push beyond the point of collapse.
With any other illness, if you reported feeling feverish they'd tell you "get plenty of rest and drink plenty of fluids". But the psychobabble about CFS tells you to ignore the fever, you'll feel better if you exercise. Go run a marathon or something. Well, the experts know that the fastest, cheapest way to diagnose CFS is to ask the patient what happens when they exercise: a depressive will return energized, and a CFS patient will collapse into bed. Unfortunately, what the experts know doesn't always filter down to the PCPs, who still think that CFS can be treated with anti-depressants and exercise because it's just another name for depression.
Dr. Goudsmit, incidentally, is a CFS expert both academically and personally, since she studies CFS first-hand in her own life every day. I am more inclined to take her advice than that of a PCP who doesn't even know that CFS and depression will produce diametrically opposite test results on certain tests.
No comments:
Post a Comment