http://www.biomedcentral.com/1471-244X/6/53
A case control study of premorbid and currently reported physical activity
levels in chronic fatigue syndrome
Wayne R Smith , Peter D White and Dedra Buchwald
BMC Psychiatry 2006, 6:53
Comment:
Accumulating evidence that CFS patients were actually more active on average
than controls before becoming ill
Tom Kindlon (14 April 2008)
The main finding in this study is that "patients with chronic, unexplained
fatigue rated themselves as more active before their illness (p < 0.001)"
and that "these differences remained significant for the subset of patients
who met strict criteria for chronic fatigue syndrome or fibromyalgia"[1].
The authors then spend a lot of time speculating about whether this could
have been an "overestimation of previous activity" and giving the "altered
perception" hypothesis.
Given that they only had self-report data to go on, it is interesting to
read a recent prospective population study on the illness[2]. It followed
4779 people from birth for the first 53 years of their lives. At age 53, 34
reported a diagnosis of CFS. Amongst other things, it found that "increased levels of exercise throughout childhood and early adult life and a lower body mass index were associated with an increased risk of later CFS." As it was a prospective study, there was no issue of recall bias. It also wasn't
simply self-rated, as it also involved reporting by a teacher at age 13.
Also they used the subject's BMI index - patients who went on to have CFS at
age 53 had a (statisically significant) lower BMI than those who did not go
on to develop CFS at ages 36 and 43 (before they had CFS). The authors say
this "this may provide some indirect but objective evidence of increased
levels of activity at these ages, especially as this difference had resolved
by the age of 53 years" (when the people with CFS were no longer more
active).
In the current study[1], the authors say "the only prospective cohort study
of risk factors for CFS found that sedentary behavior at 10 years of age
doubled the risk of self-reported CFS in adulthood"[3]. I thought I would
give more information on that finding as it only related to a small
percentage of the "CFS/ME" patients and doesn't show that on average
patients were more inactive: in response to the question, about the amount
of sport played in spare time at 10 years, 16% of the people who ever had
CFS/ME by age 30 were in the "never or hardly ever" category compared to 8%
in the people who didn't go on to have CFS/ME (so 8% more than expected -
but it still meant that 84% in the "sometimes" and "often" categories).
However the authors of the study[3] didn't combine this data in some way
with a question on sports played within school: for the category "Played >2
hours/week of sport at school at 10 years", 52% of those who ever had CFS/ME
by age 30 were in this category compared to 44% of those who never had
CFS/ME by age 30. The unadjusted OR for this at 1.4 nearly reached
statistically significance (95% confidence intervals: 0.9 to 2.2). Some sort
of combination of the two pieces of data would have been preferable - a
person's body doesn't distinguish between activity done within schools hours
and in their spare time.
In the current study[1], the authors point out that their "findings are congruent with those of 3 retrospective studies reporting that CFS patients
perceived themselves as more active before their illness began than healthy controls"[4-6]. They also that "the high levels of physical activity reported by patients have been corroborated by their spouses, partners, or parents."[7]
With all this evidence from various sources about pre-morbid levels,
researchers perhaps need to start showing more evidence before they will
convince many of us of any speculative theories about CFS patients
misperceiving how much activity and exercise they used to do.
[1] Smith WR, White PD, Buchwald D: A case control study of premorbid and
currently reported physical activity levels in chronic fatigue syndrome. BMC
Psychiatry 2006, 6:53. http://www.biomedcentral.com/1471-244X/6/53
[2] Harvey SB, Wadsworth M, Wessely S, Hotopf M: Etiology of Chronic Fatigue
Syndrome: Testing Popular Hypotheses Using a National Birth Cohort Study.
Psychosom Med. 2008 Mar 31
[3] Viner R, Hotopf M: Childhood predictors of self reported chronic fatigue
syndrome/myalgic encephalomyelitis in adults: national birth cohort study.
BMJ 2004, 329:941. http://www.biomedcentral.com/pubmed/15469945
[4] Riley MS, O'Brien CJ, McCluskey DR, Bell NP, Nicholls DP: Aerobic work
capacity in patients with chronic fatigue syndrome. BMJ 1990, 301:953-6.
[5] Van Houdenhove B, Onghena P, Neerinckx E, Hellin J: Does high
"action-proneness" make people more vulnerable to chronic fatigue syndrome?
A controlled psychometric study. J Psychosom Res 1995, 39:633-40.
[6] MacDonald KL, Osterholm MT, LeDell KH, White KE, Schenck CH, Chao CC,
Persing DH, Johnson RC, Barker JM, Peterson PK: A case-control study to
assess possible triggers and cofactors in chronic fatigue syndrome. Am J Med
1996, 100:548-54.
[7] Van Houdenhove B, Neerinckx E, Onghena P, Lysens R, Vertommnen H:
Premorbid "overactive" lifestyle in chronic fatigue syndrome and
fibromyalgia: an etiological relationship or proof of good citizenship? J
Psychosom Res 2001, 51:571-6.
* * *
Another one disproving the theory that CFS is another word for "lifelong couch potato".
Doctors have argued with me that I don't want to exercise because "you don't want to ruin your hair and make-up" or because "women don't like to sweat". They have no clue that I have a history of dancing many hours a week, playing softball, winning volleyball championships; they just assume that women don't like exercise, and that that is why I am telling them that I can *not* exercise. They haven't read the studies showing that aerobic exercise makes CFS worse; they'd rather spend the time coming up with ridiculous, discriminatory, prejudiced excuses based on what women were societally-constrained to in the 1800s, not what modern women enjoy doing.
Hillary Johnson observes "Many doctors have tried to find a causal link between CFS and personality traits that, in the case of any other illness, would be considered exemplary: blaming patients for having had a strong work ethic (calling them "overachievers") or exercising regularly (being "too driven")."
Erik Johnson (no relation to Hillary) has often commented that doctors like to play Opposite Day: if you disprove their theory that you're too lazy to work by saying you regularly worked 60 hours a week, or their theory that you don't want to exercise by saying you used to run marathons, they'll suddenly come up with a new theory that you drove yourself to sickness by overdoing, without acknowledging that this completely contradicts everything they've said to that point about your "obvious inherent laziness".
Still, I'd rather be accused of driving myself to exhaustion than accused of being too lazy to work. I'm a Type A personality and the former is closer to the truth than the latter. I go to work when I'm sick -- even when I started my own business and no longer had a supervisor standing over me, it was not uncommon for me to be working with a heating pad wrapped around my spasming back or an ice pack on my forehead because I had a 101 fever, and a deadline that could not be moved.
It's just the way I was raised, and I don't consider being called an "overachiever" or a "workaholic" to be nearly as big an insult as "lazy". Unfortunately, no one acknowledges the amount of work that I accomplish DESPITE my symptoms, they only see the fact that I don't work a 5-day/40-hour week.
Starting your own business when no one will hire you because you're too disabled for ADA-mandated accommodations is not proof of laziness; it's proof I'm a Type A. Starting a second business when the first one isn't bringing in enough money isn't proof of laziness; it's proof I'm a Type A. Continuing to work even after Disability benefits kick in is another sign that you're not lazy; you're too Type A to even consider quitting, because you like working too much to ever give it up. But the denialists will find some way of misconstruing all these things, like assuming that because I can work 6-10 hours a week lying down in bed, I'm perfectly capable of working 40 hours a week sitting at a desk in an office. Or, at the very least, 40 hours a week at home.
Even in my personal life, there are people who cannot understand why, if I can knit for their grandkids, I can't clean my house. They can't (or won't) get their heads around it that there's a big difference in the physical exertion of sitting and knitting versus carrying laundry, climbing stairs, scrubbing, reaching, etc. And they really don't like it that my response is to argue with them that they don't know what they're talking about, rather than to get up off the couch and Tasmanian-devil-like clean the whole house in 15 minutes.
I do as much as I can without making myself sicker. If it makes me sicker, I won't do it. That goes for cleaning, that goes for misguided doctors telling me to "exercise your way back to health", that goes for eating vegetarian and falling below *my* body's minimum protein requirements (which are higher than healthy people's).
I have to keep myself healthy enough to stay out of the hospital. If that means not doing something that other people consider mandatory, oh well. I answer to the needs of my body, not to any other person. It's a lesson learned the hard way, from running myself down trying to meet someone else's expectations.
The question will always be there: if I had taken a few days sick leave in January 2000, would I still be in relapse in 2008? More than a few people think that if I had put my health ahead of my job, I could've turned it around and not gone into relapse in the first place. But I didn't, and there's your evidence that one thing I'm not afflicted with is laziness. (Although I know a lot of people who would have quit working and applied for Disability with far less impairment than I had the last several years that I was working and doing very little else because I had to spend my non-working hours resting up in order to work the next day.)
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