According to the old Borscht Belt joke, the response should be "so don’t do that."
But too often with CFS patients, that simplistic solution to the problem is overlooked, in favor of telling the patient to do more until it doesn’t hurt. The theory is, the patient is just making excuses not to do things, or is simply out of shape and needs to get back into condition. Once you’re tagged with the CFS diagnosis, it just doesn’t cross the doctor’s mind that you might be a Type A personality who needs permission to "don’t do that" because you’re going to push your limits every day, even if pushing yourself makes the symptoms worse.
According to the 2006 Nisenbaum study, only 1.6% of non-CFS patients report "post-exertional fatigue", which is a hallmark symptom of CFS. In plain English, it means you feel worse when you exert yourself. For some of the most severe patients, it’ll kick in after walking just a few feet. One-third of people with idiopathic "chronic fatigue" reported feeling worse after exercise; that jumped to three-quarters in people who met the diagnostic criteria for ME/CFS. Even sedentary morbidly obese people didn’t approach that proportion, which shoots to heck the notion that CFS patients are tired because they’re sedentary or because they’re carrying a few extra pounds. (While I weigh more than I did before I got sick, I have a long long way to go – most of a hundred pounds more – before I qualify as morbidly obese. This theory doesn’t explain why I was tired at my perfectly acceptable normal weight, while walking 4-5 miles a day, though doctors have come up with creative explanations to justify their belief that they’re right and I’m wrong about my prior weight and activity level.)
Another activist reports "I began an exercise program and have tried to do so several times since then. Each time my response to it has been bizarre. The symptom exacerbation has been immense, not just at the beginning of the exercise program but throughout. Over time I was able to increase my strength and duration. In fact I usually felt good while I was exercising – but the aftermath was always devastating." That response is only "bizarre" to doctors who don’t know that that is *exactly* what should happen to a CFS patient. It’s how you differentiate between CFS (where exercise makes the patient sicker) and depression (where exercise energizes the patient). Doesn’t even require insurance pre-approval of an expensive test, though it does require that you believe the patient’s report on the outcome.
As has been noted by a number of CFS experts, ALL symptoms are "self-reported", so the assertion that CFS is fakery because the symptoms of fatigue, cognitive/memory lapses, reaction to exercise, etc. are self-reported is simply unbelievers grasping at straws to find support for their beliefs. When’s the last time your doctor followed you into the ladies’ room so he could see with his own eyes that you’re telling the truth about having diarrhea? Probably never. Or crawled in bed with you for a couple nights to see for himself that you need sleeping pills for insomnia before he would prescribe them? Yet, I’ve had several doctors over the years tell me that I’m not vomiting every morning because I didn’t do it on their shoes, I can’t be having diarrhea as often as I claim because I didn’t do it in front of them, and I’m mistaken if I say that I was awake all night every night for days because "sometimes, we think we are awake when we are actually asleep". Why? Because those are objective symptoms that, if true, would prove I’m really sick, so they have to find some rationale for ignoring them, and the easiest way is to tell the patient you don’t believe her, she’s either exaggerating or imagining things.
www.name-us.org has a series of definitions on their website, definitions that all emphasize malfunctions in neurological, immunological, cardiovascular and other body systems, causing a long list of disabling symptoms (only one on that symptom list being fatigue). Those neurological symptoms are essentially unknown to those outside the CFS community – both doctors and laypeople – because of the misplaced emphasis on "fatigue". For years, CDC denied those symptoms existed, and they still say that the tests that would objectively document those symptoms are "unnecessary". The instant that those tests are done, they would prove incontrovertibly that the patient is not depressed or hypochondriac,
Dr. Daniel Peterson observes "Fact: CFS differs from depression in onset, incidence, major symptoms, attribution and 5 immune variables: there is very little overlap between depression and CFS." Even the fatigue which is a symptom in both differs in quality and quantity – someone who’s depressed could spend the day walking around Disneyland withoutneeding a month to recover. Or, as one CFS patient described it to me, a person who’s depressed would get up and run out of the house in case of fire; she has to hope that the firemen find her, because she could not even get out of bed under her own power before the house was fully engulfed. I believe her, because I’ve had the same experience – if I’ve done a lot of bending the day before (e.g., unloading the dishwasher or clothes dryer), my abdominal muscles will not pull me to a sitting position ... I have to use the blanket as a rope to pull myself up. If it happens in summer when I’m sleeping without a blanket, I’m in big trouble!
In CFS Medicine & Science in Sports & Exercise: Volume 39(5) Supplement, May 2007, p S445, it’s noted that "Symptom exacerbation following physical stress has been documented in illnesses such as multiple sclerosis (MS), lupus and rheumatoid arthritis (RA). Similar phenomenology has been reported in CFS." If it’s been documented in MS, SLE, and RA, then why do the doctors call it "bizarre" and "complaints not credible" when it happens in CFS? It’s not like this is a symptom never seen before. They have to deny this problem, which is documented as real in other more acceptable diseases, in order to continue denying the existence of CFS.
I actually got one of my doctors to admit that there is another disease where it’s detrimental for the patient to exercise; he immediately made clear "but you don’t have that." Never said I did. All I was going for was a statement that what I was describing was not beyond the realm of possibility, not totally unheard of. He had no explanation for why my report of being made worse by exercise was "impossible" even though he knew it was typical for patients with another disease. The explanation was clear to me: this known adverse reaction was only impossible for him to fathom in CFS; it was a perfectly logical symptom in a "real disease". (And, in fact, doctors are constantly lecturing that you shouldn’t exercise while you have the flu, but the same flu-like symptoms in CFS are not supposed to be used as an excuse to stay in bed, rest, and drink plenty of fluids.) It seems doctors’ logic goes out the window as soon as the phrase "CFS" is uttered.
"Within 24 hours of the exercise challenge, 85% of controls indicated full recovery in contrast to 0% of CFS patients. The remaining 15% of controls recovered within 48 hours of the test as opposed to only one CFS patient. Clear differences in number and type of reported symptoms were also found between groups."
The American College of Sports Medicine concludes "The results of this study indicate that CFS patients suffer symptom exacerbation following physical stress. As with MS, lupus and RA, post-exertional symptom exacerbation appears to be both a real and incapacitating feature of the syndrome. The delayed recovery response evoked by a single bout of exercise stress is distinctly different from that of sedentary controls. The debilitating effects experienced by these patients help to explain activity avoidance, which should be considered when prescribing exercise and activity management programs for CFS patients."
In other words, ACSM’s recommendation is that when a CFS patient says "it hurts when I do this", the doctor’s response should be "then don’t do that".
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