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."
Doctors DON’T know it all. There are far too many CFS patients who are permanently disabled – some permanently bedridden – because they blindly followed their doctor’s recommendations to the letter. If you don’t know that exercise is hazardous to CFS patients and your doctor doesn’t know that exercise is hazardous to CFS patients, you might become one of them.
I do know quite a bit about CFS, but even I made the fatal mistake of trusting my doctors to know what they were doing. I assumed (wrongly, it turns out) that if I proved to them that anti-depressants weren’t helping me, that they would eventually prescribe something else. Instead, when I reported the pills didn’t help, I was accused of "not taking the pills because I don’t want to get well and have to return to work". Somehow, it never sank in to him that the thing I wanted most was to get well and return to work; he had the notion that CFS was something that liars and fakers claim to have because there is no way to prove that they are not sick. (Actually, there are tests that can prove it, but he didn’t know what those were, and wouldn’t order the one I specifically asked for.)
Letting them string me along with "if anti-depressant A didn’t work, let’s try anti-depressant B" (and C and D...) for a couple years resulted in an outside rheumatologist telling me that I had deteriorated too far and would never recover enough to return to work; I should’ve looked for another doctor willing to try sleeping pills and pain pills, instead of naively believing that at some point I would succeed in proving that none of the anti-depressants available were of any help, and at that point they would give me what I asked for, what I knew to be the right treatment. Instead of trying something new, they prescribed second rounds of not one, but two, anti-depressants that I’d already tried and found useless! (One of which I had been told to never take again because of the severity of the reaction I had; I could have died from filling that prescription.)
I also made the mistake of trusting that because the law says it is illegal to falsify medical records, that they would keep accurate and honest records. When I finally saw my records, I was horrified. There were false statements on every page. If you believe the doctors’ notes:
* I was "self-diagnosed", no doctor ever told me I had CFS;
* I have a long history of depression which I misrepresent as CFS;
* I quit working the day I got the diagnosis and never worked again;
* I have no objective symptoms, my only symptom is fatigue;
* I told him "I don’t want to ever work again" (at a time when I was doing freelance work and had gone into partnership in a friend’s business!);
* and, the real shocker, a lab report showing there were several EBV tests that came up positive despite the doctor’s note that "all tests are negative" (suspiciously, the page with the positive EBV test results had not been given to me along with the other results when I was reassured that the tests were all negative – coincidence or intentional?)
All of those statements are incontrovertibly false.
One doctor tried to excuse his actions by saying "nothing she said made sense". And it’s true – to someone who wants to diagnose depression, the symptoms of CFS don’t fit the mold. But that doesn’t give him the legal right to make notes based on what he thinks I should have said or what he believes I meant to say or what he wanted me to say. He was obligated to write down what I said, though he could have commented afterward that he questioned the accuracy of it.
There are things that can be done to help CFS. If what your doctor is trying consistently makes you worse, give him an ultimatum: if he doesn’t go to the Web or the library and figure out what those things are by your next appointment, if he doesn’t want to take your advice based on what you’ve read, you will go to another doctor who does know what he’s doing. Because the odds of your being able to function well in the future are increased when you get the right treatment early on, the longer you let doctors string you along with treatments that aren’t working, and promises that "the next one will work" (and the next one and the next one after that), the more likely that you will be permanently impaired.
The odds of improving drop off drastically at Year Five. I was beyond that when Dr. Murphree and I found the right dosage of 5HTP to put me to sleep, and I’m in Year Seven of this relapse now that Dr. Montoya is suggesting treatment with an anti-viral. I may invest thousands of dollars in Montoya’s treatment only to find that it was too late. I’m laying my hope on the fact that there was one year in there that I was on an effective sleeping pill that re-activated my immune system and allowed me to beat back the virus from the level it had reached; maybe that bought me some time, turned back the clock, and I can calculate the current relapse from the day that clinical trial ended, which would put me back into the first five years when treatment seems to be most helpful.
If you’re too sick to stand up to the doctors and demand they give you the correct treatment, bring a healthy friend or family member to the next appointment to stand up to the doctor for you. Or find a lawyer who will write a "bully letter" for $100, to let them know that research has shown anti-depressants are entirely useless against CFS, good results are being had with anti-virals, so the doctor better read up on Montoya’s protocol "or else". (Or have the lawyer demand that you be given some of the immune and neurological tests that would show abnormalities.) To get the lawyer to write that letter for one hour’s fee, you’ll have to provide him with the list of tests or the research summaries instead of asking him to track that information down himself, but they are easily accessible on websites such as Co-Cure.org, ahummingbirdsguide.com, and CFSfacts.org
It’s never easy to stand up to doctors, and especially not when you’re horribly sick, but the life you save could be your own.