In 2000, I walked into the doctor’s office and told him what pills the experts recommended. I got something else entirely, and when I didn’t improve, the blame was put on me, rather than on the doctor giving me the wrong pills – pills repeatedly proven by researchers to be useless for CFS.
He never asked any questions about my feelings/thoughts/emotions, just made accusations without the necessary information to make an educated statement. I was accused of "not wanting to have to go back to work" at a time that I was struggling, against all odds, to try to work. The doctor changed the subject whenever I tried to bring up the difficulty I was having trying to work; he didn’t want to hear that his assumption that I didn’t want to work was wrong. Similarly, he rejected the opinion of a medical specialist on my medical diagnosis and the opinion of two psych evaluators that I did not have psychiatric problems. He had already made up his mind and didn’t want to be forced to change it.
When I finally got a sleeping pill (the first thing I requested, on the advice of my former specialist), my immune system regenerated, fought back the virus, and I started to feel human again after years of sleeping only 2 hours a night.
When I finally got a pain pill (the second thing I requested, again on the recommendation of a CFS expert), I started waking up feeling good.
Obviously, if I had not wanted to return to work, I wouldn’t have repeatedly asked the doctor to give me the right pills, and wouldn’t have argued as strongly against the wrong pills – I would have gladly taken the prescription for the wrong pills, knowing that they wouldn’t help me.
Those facts tend to fall by the wayside when people want to "prove" that CFS is simply fakery by people too lazy to work. My doctor was so busy accusing me of being too lazy to work that he couldn’t hear me saying "I struggled to work right up until I was fired because the objective symptoms were so bad" or "I’m trying to work but it’s impossible to keep up because of the objective symptoms" or telling him what pills I needed in order to get back to work; he didn’t want to hear that, so he tuned it out – it didn’t fit with his prejudice.
Nor did it fit with his prejudice when I gave him a printed copy of a CFIDS.org press release recommending cortisol testing – the results would be off in one direction for CFS but in the other direction for depression. If the patient insists that shehas CFS and you adamantly believe that all divorcees are automatically depressed, you’re not going to order the test that will definitively prove one of you is right and the other is wrong. The test was never ordered, so that he could continue to say "all tests were normal". It was easier for him than admitting that (1) he was wrong, and (2) there is objective proof of the existence of CFS as a biological problem.
Similarly, the innumerable research studies showing biochemical, neurological, immunological, endocrine, viral, cardiac and other physiological abnormalities are ignored. The facts are there, and have been there for decades, that this is not a psychological or psychosomatic problem, and certainly isn’t just fakery by lazy people, but too many people (including doctors) refuse to change their opinion when faced with the facts. Don’t confuse me with facts, my mind is already made up.
From the start, patients have reported a viral onset. That didn’t fit what some people wanted to hear, and it was swept under the rug; instead, patients with fatigue from any cause, including psychiatric reasons, were lumped in with post-viral CFS, and research studies were loaded with those psychiatric patients in order to "prove" what the researcher wanted to prove: that the problem was purely psychiatric.
Yet, when the patients who had reported infectious onset were given psychiatric treatment, it didn’t cure them. It became obvious that some researchers were intentionally mixing apples and oranges, in order to prove that oranges are red outside with white interiors. When the patients insisted that they became ill following and as a result of a virus, that was brushed aside and they were told they were mistaken, there was no virus, there was never a virus. The problem is, too many of us are educated, intelligent, self-assured people who not going to back down when told that our own experience and observations are wrong because they don’t square with what the doctor hypothesizes: I was there, he wasn’t, my statements are grounded in reality, not baseless assumptions. Nonetheless, I’ve been bullied to accept that the doctor knows better than I did what happened before I was his patient, and to ignore what I know to be the truth, because my story doesn’t support his diagnosis.
One doctor told me "nothing you said made sense", and it’s true. It did not make sense in terms of the depression diagnosis he wanted to make – I knew which symptoms would differentiate CFS from depression and made sure to stress those symptoms. It made perfect sense in terms of post-viral CFS, but the doctor didn’t know enough about CFS to know that it made perfect sense. Experts have told me I’m "a textbook case"; I should not be that difficult to diagnose if the doctor knows how CFS is diagnosed. That doctor clearly didn’t know the first thing about CFS, as evidenced by his statements after he stopped treating me.
As time has gone on, the definition of CFS has been rewritten by those who want to see a psychiatric cause, to the point that the original patients on whom the definition was based find themselves no longer fitting the definition of the disease that was patterned on them! If we no longer have CFS, then what do we have? It’s been proposed that those of us with infectious onset be re-diagnosed with the pre-1988 name: Myalgic Encephalomyelitis. But to do that would require CDC to admit that they made a mistake in the first place, by not recognizing ME when they saw it. They don’t want to own up to that.
In the mid-1980s, the first MRI machine in the Tahoe/Incline area proved CFS patients had bright spots in their brains similar to MS patients. More than 20 years later, most doctors are still unaware of this objective abnormality which could be used as a diagnostic tool. So, the excuse that the proof of a biological basis for CFS is too new to have been taught in medical schools is just that: a very poor excuse for not knowing the facts.
The facts have been there for more than 20 years, but have been repeatedly ignored and denied by people who have an ulterior motive in covering them up, or who are simply too stubborn to change their minds in the face of new evidence.
At some point, the evidence of biological causes will become too overwhelming, and too well-known, and those who have refused to accept that this is not caused by being lazy or crazy will find themselves on the receiving end of the "crazy" accusation, when it becomes obvious to every other doctor that the patients were telling the truth, and that the psychologizers and deniers were the ones who were lying, even after it became crazy for them to refuse to believe the facts.
As a psych professional has observed about one of the commenters to this blog, "When someone responds to an issue with sincerity, and the recipient of the information is so disturbed that she can't flex her view enough to take in an alternative viewpoint, that's when we want to call in the men in the white suits." The same licensed psych referred to this behavior as "pathological". The same observations would apply to any of the deniers and psychologizers who won’t accept the overwhelming body of evidence that proves them wrong. I would suggest that most of them will never accept the reality until it is them or one of their loved ones who comes down with post-viral CFS, forcing them to re-examine their beliefs about laziness and psychosomatic origin.
The comments in this blog prove that there are still plenty of people who stubbornly refuse to accept the facts about CFS as a biological illness. It is easier and safer to blame the patients than to face the frightening fact that this is a virus without a vaccine: anyone – including you – could be the next victim.
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