Wednesday, October 22, 2008

Definition of "recovery" needs to be challenged

People may have noticed that more and more claims are being made that CBT is
leading to recovery in CFS in a decent percentage of patients.

In my opinion, this is very flawed for numerous reasons.
The most obvious ones that come to mind at the moment are:

(i) objective measures aren't being used - just subjective questionnaires*.

(ii) recovery should require measurement at more than one time-point given
the fluctuating nature of ME and CFS

(iii) the recovered group isn't being compared to a healthy group e.g. if
there is a recovered group of ME or CFS patients, the mean of their scores
on the questionnaires should be comparable to that of the healthy group.  If
most or nearly all of the scores are lower than the mean for the healthy
population and many are very much lower, this doesn't suggest it's a
"recovered group".

(iv) the patients aren't do a normal amount of activity at the same time as
being tested.  If a patient can walk 0.5 mile/1 Kilometre (say), if they
working full-time, that means they're fairly healthy for an ME or CFS
patient.  However if they are not working full-time and generally don't look
like they're that busy (e.g. judging by an actometer/pedometer), it seems
ridiculous to suggest that they are recovered if they can do one  0.5 mile/1
Kilometre walk per day.  They may just be living within their "envelope" but
still have an activity threshold that is quite low.  And may have cut out a
lot of other activities to do it.

Perhaps other people can also make other suggestions.

Anyway, I happened to come across the following last night:
"Predetermined criteria for "complete recovery" required that
patients no longer met chronic fatigue syndrome criteria, were
employed full-time, and scored less than 4 on the Fatigue Questionnaire
and more than 83 on the Medical Outcomes Study
Short-Form General Health Survey physical functioning scale."
Deale A, Husain K, Chalder T, Wessely S. Long-term outcome of cognitive
behavior therapy versus relaxation therapy
for chronic fatigue syndrome: a 5-year follow-up study. Am J Psychiatry.
2001 Dec;158(12):2038-42.

Notice how it requires a patient to be in full-time employment before they
are willing to class them as being "fully recovered".  As I say, this is in
complete contrast to how "recovery" is being defined in CBT studies
including the upcoming PACE trial (which includes Trudie Chalder who was
involved in the trial with the above definition of full recovery).

I submitted a comment last night on a study which had the lowest threshold
for recovery I've seen so far - I hope to be able to post it out in the next
month or two.  It shows how ridiculous some of the claims are.

It would be good if other people also started to challenge these claims of
recovery.  If all we need is CBT for us to recover, health bodies aren't
going to be willing to pay for drugs for us and drug companies may not see
us as a useful market to invest money in (Dr Chia has already pointed out
that he has found drug companies aren't really that interested in the area).


Tom Kindlon

* Although some questionnaires can be more subjective than others e.g. the
SIP-8 sounds promising: "The Sickness Impact Profile (SIP) measures
functional disability in different areas of daily functioning. Eight
subscales of the 12 available are generally used in CFS: alertness
behaviour, sleep, homemaking, leisure activities, work, mobility, social
interactions, and ambulation. Like the MOS SF-36, the SIP measures the
consequences of the entire illness. However, the SIP records disability in
concrete activities, which makes it less dependent on subjective
One can see a list of the questions at:
(pages 256-259 - remember that they're only recommending 8 of 12 subscales
for ME and CFS.  If anybody can give me a link to the list of SIP-8
questions elsewhere whence they can be copied and pasted, I'd appreciate it) tomkindlon@OCEANFREE.NET
* * *
As Tom notes, there's no showing of what these "recovered" patients are giving up in order to do what they're doing.  By one standard, I was cured in 1988 when I went back to work full-time.  Except that I had to jettison every other commitment in my life in order to work: no more church, no more community volunteering, no more home business.  I never got back to more than 85% of my previous energy level.  Fortunately, that 85% was enough to keep working, but I certainly didn't consider myself "back to normal", and neither did the friends who were in on the secret.  I may have looked normal during business hours, but most nights I was collapsed on the couch immediately after dinner.


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