Letter in the Psychologist, June 2008. Response to Deary.
The Psychologist, 2008, 21, 6, 549.
Letter.
I was interested to read in the 'Out now in BPS Journals' section of the
Psychologist (April 2008) that patients with chronic fatigue syndrome (CFS)
cope with their illness by operating "within a narrow energy budget, which
ultimately becomes self-defeating". As a specialist in this field, I accept
that most patients try to control their fatigue by restricting their activity levels. However, I am yet to be persuaded that this is maladaptive and I’m concerned that the item may have given readers a distorted view of this disabling condition.
The claims made by the author seem to be based on a number of assumptions. The first is that all patients respond to their symptoms in the same way, i.e. fear, avoidance and misattribution. However, studies have shown that the majority of people with CFS use a range of coping strategies, that most remain ambulant, and I’ve seen no evidence yet that this illness is linked to a general ‘fear of fatigue’ (Lovell, 1999). Moreover, it is difficult to reconcile theories focused on challenging somatic attributions when research has identified abnormalities in the cerebrospinal fluid, brain, muscle and
immune system (Goudsmit & Howes, 2008).
However, the author’s main assumption is that his approach to the
management of CFS is superior to strategies such as pacing, where patients
conserve energy to avoid exertion-related fatigue. In the case of graded
exercise, the effects tend to be modest, and studies using objective
measures have not found significant or sustained increases in activity
levels. The second alternative is mindfulness. This has been tested in three
small studies, and while it reduced fatigue, only the uncontrolled trial on
9 patients found a significant improvement in physical functioning (Surawy,
Roberts & Silver, 2005). Most notably, the author recommends that patients
adopt a third approach: to accept the “symptoms and distress”. Firstly,
this implies that the first two interventions don’t work. Secondly, given
the severity of the illness, is this best practice? Thirdly, the paper
challenges homeostasis, yet we are asked to encourage acceptance. Isn’t that
homeostasis?
The essence of the author’s argument is that pacing is associated with a
poor outcome. However, this is speculation and there is no evidence from
trials or surveys to support this negative view. A summary of the
literature relating to pacing, plus a discussion of the abnormalities
referred to above, can be found in the current issue of Health Psychology
Update, also published by the BPS.
Goudsmit, E. & Howes, S. (2008). Pacing: A strategy to improve energy
management in chronic fatigue syndrome. Health Psychology Update, 17, 1,
46-52.
Lovell, DM. (1999). Chronic fatigue syndrome among overseas development
workers: a qualitative study. Journal of Travel Medicine, 6, 16-23.
Surawy, C., Roberts, J. & Silver, A. (2005). The effect of mindfulness
training on mood and measures of fatigue, activity, and quality of life in
patients with chronic fatigue syndrome on a hospital waiting list: a series
of exploratory studies. Behavioural and Cognitive Psychotherapy, 33,
103-109.
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Ellen M. Goudsmit PhD CPsychol CSci AFBPsS
For information on ME and CFS,
see: http://freespace.virgin.net/david.axford/melist.htm
* * *
A friend who is a trained counselor has often pointed out to me the differences between "irrational fear" and "reasonable concern". For someone who has repeatedly gotten worse by exceeding her limits, it's not an "irrational fear" to think that doing too much will lead to getting worse ... it's something that's been proven via experimentation to be fact.
Unfortunately, those who are dead-set on believing that CFS is a psychological problem won't accept either my experience or the mounds of clinical evidence proving there are biological abnormalities as proof that this is not an irrational fear. The real "misattribution" isn't in my mind, but in theirs.
FACT: I was happy and healthy until I had a 105 fever for several days. Psychological problems do not start with a virus.
FACT: I was happy after the fever, but my health never fully returned.
FACT: I went back to work a few days after the fever broke, and remained at work full-time for another 13 years -- this isn't a case of laziness or unwillingness to work, because I perservered at working against the odds. I'm still working part-time.
FACT: No trained counselor, psychologist or psychiatrist has ever found anything they felt required counseling. Only people who are not trained/licensed to make psych diagnoses have tried to affix a psych label to me. The psych experts recognize that some symptoms of physical illness (fatigue, sleeping, inability to concentrate, etc.) are similar to some symptoms of psych problems, and that I lack the necessary emotional components to warrant a psych diagnosis.
FACT: There are symptoms of CFS which are not symptoms of depression. Depression does not cause fever, swollen glands, abnormal blood tests, viral damage to the heart and brain, etc.
We often see in other people what exists in ourselves: people who would gladly fake an illness in order to quit work will assume that everyone would do the same. People who get married so they won't have to work any more will assume that this is everyone's goal in getting married. People who are looking for a psychiatric reason for symptoms can find it in anything, even claiming that fever can be psychosomatically induced.
Before casting aspersions on the character of a CFS patient, look inside yourself. How much are you projecting your own character flaws onto someone else? People are different -- there are those who live to work, those who work to live, and those who will do absolutely anything so they'll never have to work again. But someone with a lifelong reputation as a hard worker does not magically become lazy overnight -- it took a serious virus and severe symptoms to make me stop working full-time, and despite a specialist's assessment that I will never work full-time again, my goal is to prove him wrong. However, getting there requires doing something out of character for me: resting enough to get well, rather than pushing my limits every day and getting steadily worse because I'm not being patient and waiting to get better before I start running full-tilt again.
Dr. Murphree www.DrRodger.com says that for each year of deterioration, it takes at least one year of recuperation. Which means that the soonestthat I can expect to reach maximum improvement is 2010-2011.
Since I was half-dead from sleep deprivation before that problem was finally addressed, it may take longer: the specialist was clear that I was allowed to deteriorate too far without proper medication, and some of the damage would be permanent as a result of the doctors' refusal to prescribe what's appropriate for my actual diagnosis, instead of incorrectly changing my diagnosis to something they know how to treat. (One of the doctors who preferred a different diagnosis couldn't explain WHY he changed it, what symptoms told him it was That rather than This. If he doesn't know how to differentiate the two, then how does he know the specialist was wrong?)
Pacing works for me. If restricting activity now means that I can go back to work full-time later, I'll do it. But that doesn't necessarily mean that I've got activity-phobia ... it may just mean that I'm following the advice of the experts, which I've proven through trial and error to be what keeps me healthiest.
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