TymesTrust.org (The Brief, March/April 2005) writes:
"The belief that doctor ‘knows best’ was never taken for granted by all, despite the myth. ... doctors are fallible, just like anyone else. Doctor may well know best in certain circumstances, but by no means all. An attitude of superiority is misplaced ... Scientific knowledge is patchy; theories and therapies may become popular via a few proponents who are eventually proved wrong ... The best doctors work in partnership with patients, sharing knowledge and expertise and admitting areas of uncertainty, as in ME."
Any doctor who tells you that your CFS can be treated with anti-depressants does not "know best". It has been repeatedly been proven by researchers over many years that anti-depressants are useless against CFS. A doctor who doesn’t know even that much about ME/CFS has no business treating CFS patients, since he clearly does not even know the most basic information that it’s caused by a virus and not by depression. (Dr. Bell’s book lists several symptoms common to CFS which are not seen in depression; Dr. Berne’s book contains a two-page chart of differences between CFS and depression. Clearly, CFS and depression are not the same condition and should not be treated as the same condition.) The credo to "first, do no harm" should suffice to persuade doctors that they should not treat a patient when they don't know anything about that patient's condition; the wrong treatment for the wrong condition can cause irreparable harm.
I have read thousands of pages of doctor-written books and research/journal articles about CFS. I may not be a doctor, but I can understand a plain-English conclusion that says "this works" or "this had no effect" or "this made things worse". A doctor who is willing to accept that I have some intelligence and can do the library research to help myself is a doctor who is more interested in my health than in his ego, and will do me a lot more good than a doctor who dismisses anything that I bring in because of an "attitude of superiority".
When a patient comes in with information from a reputable source (e.g., CFIDS Association researchers or a respected medical journal), it would behoove the doctor to read the information being provided in order to provide the patient with the best possible treatment.
This is not to say that information found online should automatically overrule the doctor, since some of what is found online is not accurate, but if the information was published in a medical journal (such as much of what is in this blog) or came directly from researchers specializing in a condition (such as the information I provided my doctor from CFIDS.org), it is reliable regardless of whether the patient printed it from an online source or went to the medical library in person. "Consider the source" – a medical journal article is a medical journal article no matter how the patient became aware of it.
I have had doctors tell me that they know best what goes on behind closed doors when they’re not here. They "know" that I’m sleeping more than I think I am, and they don’t even want to hear my rationale that if I’ve spent 1 AM to 6 AM surfing the web or reading a book or knitting, I’m absolutely positive that I was not "actually sleeping and just think you’re awake all night". Yes, some insomniacs do look at the clock at 1:13 and look at the clock at 5:48 and conclude that they were awake all night when they were actually sleeping, but when someone could produce e-mails or a knit scarf or has read an entire book to prove that they were sitting on the couch doing things, not lying in bed sleeping, the doctor is wrong in assuming he knows the patient was actually asleep.
Clearly, the doctor doesn’t know what happens when he’s not here, and he’s doing the patient a disservice to insist that he does, without listening to the patient’s evidence of why he is wrong. I went to college, I have the intelligence to tell the difference between lying in bed watching TV versus sleeping, or sitting on the couch knitting versus being in the bedroom asleep.
I actually dealt with a doctor who couldn’t comprehend that "in bed" is not the same as "asleep"; I was sleeping 2-3 hours from 5 AM to 7 or 8 AM, but he later testified that there was no need to give me sleeping pills because I was "already sleeping too much": I had told him that I was spending 15 hours a day in bed and he understood that I was sleeping that much, not tossing and turning in pain, watching TV, surfing the Net, lying down to avoid fainting....
As a result of his inability to understand what I was saying, his unwillingness to hear anything that contradicted his desired diagnosis of post-divorce depression, I was refused the proper, expert-recommended treatment for CFS, and have been told by a specialist that the resulting deterioration from years without decent sleep means that I will never work full-time again. I will pay the price every day for the rest of my life because he didn’t "know best"; in fact, after my last appointment, he made a number of statements making it clear that, in fact, he didn’t know diddlysquat about CFS.
But his arrogance prevented him from learning anything from someone who's studied CFS intensively for many years. And he apparently still thinks the one (erroneous) paragraph he read in a textbook years ago outweighs the thousands of pages of research/journal articles and doctor-written books that I have read.
Mike Riley, head of the SacValley CFS/FM Support Group writes:
"If you are going to be a CFS patient, you are going to have to learn some medicine, and you are going to have to be your own advocate. If you wait for the medical system to take you by the hand and solve your condition, you are going to wait for a very long time, and become very frustrated. We are our own doctors. Treat the medical community with respect, but not reverence."
And that’s good advice. Expect to meet up with doctors who don’t know anything about fibromyalgia or CFS, and who need to be educated. It will be an exercise in frustration trying to get better when the doctors think the only treatment is anti-depressants and will not consider anything else. A patient who needs pain pills or sleeping pills should get those, not a psychiatric diagnosis (that the MD is not qualified to make because he is not a psychiatrist).
No comments:
Post a Comment