One problem with medical care today noted by CFS/fibro experts is that the lab test has become all-important. Whereas diagnostics in the old days required listening carefully to the patient and sifting through the possibilities, nowadays it’s become strictly a matter of test results. If the tests are normal, the doctor tells the patient that she is imagining things because the tests are always right.
However, Devin Starlanyl, M.D., doctor and patient, observes "Just because standard testing shows normal values does not always mean everything is fine. It may simply mean that the proper tests have not been run."
How unfortunate that patients are now routinely disbelieved by their doctors!
When the AIDS epidemic began, patients who complained of not feeling well were told that there was nothing wrong, because there wasn’t yet a test for that virus. "All tests were normal". We know now that there is something very wrong with AIDS patients, and there is now a test to prove it.
The same happens to CFS patients. There are many tests that would show their immune system is malfunctioning, and scans that show lesions, but the blood tests that were done on me – both in 1987 and in 2000 – were reported as "all normal" and it was considered unnecessary to do more tests. The heck with what the patient said, the tests said there was nothing wrong. All the doctor had to do was trust his eyes (friends told me I didn’t look well) and ears (I told him exactly what was wrong with me, including my prior diagnosis). But he chose to trust the tests instead and call me a liar when those tests didn’t show abnormalities that they don’t test for.
But, when a new test was done, one that is not commonly part of the basic first-round blood tests, the results were described to me as "off the charts". With the addition of one new test, I went from having no proof that anything was wrong to something seriously wrong. No one had stopped to think that the basic first-found blood tests check for specific things: they proved that I did not have diabetes, that I did not have an autoimmune disease like lupus, that I did not have thyroid problems, that I did not have Lyme disease. But they couldn’t tell the doctor whether I was telling the truth about insomnia, or severe pain, or fainting.
Similarly, for years, CFS patients were told there was nothing wrong with their hearts. Until someone had the bright idea of changing the test. Dr. Paul Cheney comments "Unlike all other measures of cardiac output, this is the only one that can be done in the upright position. Which, as you'll find out in a second, was a critical step. Absolutely critical. All other cardiac output measurements are done in the supine position – laying down." And when a cardiac tests was finally done in the upright position, it documented what patients had been saying all along: "what they found is absolutely astonishing, truly astonishing. When [disabled CFIDS patients] stand up, [they're] on the edge of organ failure due to low cardiac output." "More importantly, all disabled CFIDS patients, all of whom have post_exertional fatigue, have low "Q" and are in heart failure."
The patients hadn’t been lying – the doctors simply weren’t considering that the test had to take into account what the patients were complaining about: difficulty being upright. You feel better when you’re lying down for a reason: when you’re lying down, your cardiac output is within normal limits.
I saw a cardiologist who clearly hadn’t read the CFS material I had sent to him before the test. My physiological response to the test puzzled him. When I got home and mentioned what happened to someone who knows about CFS, I was told that weird reaction is exactly what should happen to a CFS patient. As Dr. Cheney explains "There are two kinds of heart failure. There's the kind that any cardiologist can diagnose in about a minute. That you do NOT have. Which is why cardiologists missed this. What you have is Compensated Idiopathic Cardiomyopathy. ... The disease [CFS] itself is protecting you from a deeper problem that has been totally missed." Succinctly, the CFS serves as a governor so that your heart cannot go into overdrive, which might kill you.
It’s often said that God works in mysterious ways, and that little glitch is one of them. It makes perfect sense ... once someone opened their mind to the possibility that patient reports might be more accurate than conventional testing.
Someone finally had the idea of performing a functional MRI on fibro patients. Instead of them lying stock-still in a tube, this tests what happens when they are moving. The results proved unequivocally that their brains react differently than the brains of healthy people. Again, precisely what the patients had been saying, but which too many doctors had been writing off as exaggeration and excuses because blood tests were normal. But this is something that cannot be measured by the standard blood tests. It’s not caused by diabetes or thyroid or anemia. It is possible to test for Substance P levels, but it’s not a test that’s commonly ordered.
Dr. David Bell, another of the early experts on CFS, observes "Modern medicine prides itself on scientific accuracy. The days of clinical medicine, listening to and trusting patients ... have been replaced with sophisticated machines and tests that do not lie. The art of medicine gave birth to an unruly child, medical technology. ... [The modern doctor] listens to the patient only long enough to decide which tests will give the scientific answer. ... Physicians must discipline the unruly child, medical technology, and not abandon the art of medicine."
And it is important for doctors to recognize that a series of negative tests may mean only that they need to order different tests. Those patients who have doctors willing to continue searching until they find something wrong are at a great advantage over those whose doctors, whether through ignorance or parsimoniousness, stop after the first round of tests. (Some HMOs offer bonuses for keeping costs down, which may lead doctors to refuse to do expensive testing, like sleep studies or MRIs, which might document an actual problem, but cost the doctor his cost-cutting bonus in the process.) Others may have the erroneous impression that the standard tests would discover absolutely anything that is wrong. (The guy who graduated last in his medical school class is, nonetheless, someone’s doctor!)
And, unfortunately, the truth about CFS and fibro is not well-known in the medical community. Too many doctors consider them a "wastebasket diagnosis" when you don’t know what else to call it, with no idea how they’re correctly diagnosed, and too few doctors know what to do about them. Although these doctors don’t want to admit their incompetence, Dr. Bell writes "the uniqueness of the pattern of symptoms in CFS, and their persistence over long periods of time, make this an illness that can be diagnosed clinically, not just resorted to when everything else has been excluded." And he’s right – support groups made up primarily of laypeople can diagnose CFS (or rule it out) with near 100% accuracy. If doctors can’t do the same, it’s only because they’re not interested in learning the symptom pattern. "Historically, the pattern of symptoms has made the diagnosis of an illness", Dr. Bell writes, and so it is with CFS. Someone who knows the pattern will recognize it immediately. Someone who doesn’t know the pattern will continue to disparage it as random symptoms.
At present, the capital of California doesn’t have a single CFS specialist, and none that we know of within at least 2 hours drive. Sometime next year, there will be a CFS Center for Excellence opening in Reno (2 hours away), and we will probably all commute up there for our treatment, but for now, we’re making do with doctors who don’t know much, and, in the words of one of my former doctors, are "not interested in learning". Some of whom don’t even know that anti-depressants are useless and exercise is detrimental. Some of whom have never even heard of Paul Cheney, who was one of the first doctors to identify and research CFS.
Dr. Bell is familiar with that attitude, as well. "By making the diagnosis of depression ... the primary care physician could write a diagnosis into the chart, one that theoretically answered the questions and relieved the doctor from further responsibilities." But the problem arises that repeated research has proven that anti-depressants are useless against CFS, so at some point, the doctor has to face the fact that treating the patient for depression isn’t helping. Unfortunately, the predominant response to that is the accusation that this is a "non-compliant" patient who "doesn’t want to go back to work", rather than an admission that the doctor doesn’t know what has been shown to work on CFS and the doctor is just faking it to avoid admitting ignorance. In fact, the Cecil Textbook of Medicine makes it clear that if "the condition does not respond to psychiatric treatment", then it is an organic disorder.
Nearly a decade before my current relapse, Dr. Bell wrote "That fatigue can be caused by disease in the brain has been known for years. It is an extremely complex area of neurology." Yet, here we are almost two decades after he wrote that, and there are still innumerable doctors who are completely unaware of the CFS/neurology connection. They don’t order the neurological tests that would show a problem, and, of course, blood tests don’t show problems with the central nervous system, so they continue under the misconception that "all tests are normal" without ever considering what tests were not ordered, which might not have been normal if they had been done.
Let's go back to practicing medicine the old way, where the doctor listened to the patient, believed the patient, and diagnosed based on symptoms, and not on whether the wrong tests "are normal". There is a place for tests in CFS diagnosis: as a starting point to rule out other fatiguing conditions. But the real diagnosis should be made on the symptoms described in the literature: that combination of exercise intolerance, memory loss, swollen glands, fever, cognitive impairment, pain, and neurological abnormalities. It's not a wastebasket at all – it’s a well-defined condition that's easy to diagnose if you know what you're looking for.
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