Friday, March 9, 2007

Be your own Medical Expert

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.

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,, and

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.

Thursday, March 8, 2007

How is CFS like politics?

In withdrawing from the presidential race, Tom Vilsack said

"I came up against something for the first time in my life that hard work and effort couldn't overcome."

 That's a feeling that CFS patients know well.  Many of us were hard workers who were accustomed to overcoming any obstacle. 

And now we're faced with something that not only "hard work and effort couldn't overcome", but that hard work and effort make worse.  Some doctors recommended exercising your way back to health and were puzzled when this resulted in the patients becoming bedridden instead of returning to work.  Science has proved why, and experts now warn CFS patients to not exercise. 


Wednesday, March 7, 2007

The Issue of Disability

Mark Pellegrino, MD, who is both a doctor and a fibromyalgia patient, shares the following observations:
"It is my experience that the majority of Fibromyalgia workers are motivated and determined to maintain their jobs, but issues of disability may need to be pursued. I think that total disability should be rare in Fibromyalgia, and despite all the problems, there should be something that the individual should be able to do.  However, the economy is not always receptive to a worker with various restrictions due to a medical condition, and all factors have to be considered"

This is a situation that many disabled people face. They very much WANT to work, but no one wants to hire them.

VocRehab experts who have looked at my restrictions and limitations have said that "there are no jobs" that I could do successfully. Even a part-time desk job would require reaching and lifting.  Yet, the judge stubbornly persists in his belief that there must be some charitable employer willing to employ the disabled with whatever accommodations they need.  So, VocRehab says I can't work, but the judge contradicts their expertise with his notion that in an ideal world someone would hire me anyway, and over the objections of the experts deems me "not disabled" without doing anything to help me find that mythical employer he believes wouldn't care about attendance or productivity.

Since this is not an ideal world, employers don't offer charity (except to extremely valuable long-time employees), I started my own business working at home. The business is essentially paperless, so there are no files to lift. The only reaching I do is to set my computer aside when I need to run to the bathroom (something that I could not do as often as I do -- or as easily -- working in an office where time away from desk is noted by a supervisor and the restroom is a hundred yards further away).

I'm fortunate that, unlike some fibromyalgia patients, I don't have permanent "fibro fog". I have some clear-headed hours when I can work, but on MY schedule, not someone else's.  The cognitive/memory/judgment problems are the ones cited most often as reasons CFS patients cannot work. Certainly, if I were required to be downtown at 8:30 AM, they'd affect my ability to work, too.  But since I can sleep till I wake naturally, instead of having an alarm clock go off at 7 AM regardless of whether I only fell asleep at 6:30 AM, it's not as big a problem for me as it was when I was averaging 2 hours sleep because I wasn't falling asleep till after 5 AM.

As an employer who is disabled myself, I am certainly open to hiring other people who are disabled, but that's the nature of MY business; I work at home and my employees would work at their homes.  I've contacted other employers who are disabled, and they are not interested in hiring someone like me -- they want able-bodied employees who can do for them all the things that they can't do for themselves.

The thing that convinced me that I was wasting my time trying to get someone else to hire me was the response of an agency that finds employment for the disabled. I applied for a job in their agency, and even they said "No" and wished me "Good Luck, You'll Need It".  If even agencies dedicated to finding employment for the disabled won't hire the disabled to work with the sort of accommodations I need, there's definitely a problem. 

You can believe all you want in the ideal world where the disabled are given an equal shot at employment, but unless you are willing to advocate to your employer that they hire someone like me, don't tell me "just go get a job". 

It's not that easy.  I tried for years to "just go get ajob" and was turned down at every interview, as soon as it came out that I needed certain accommodations.  I didn't give up on job-hunting until the VocRehab experts testified "there are no jobs" that I could do and explained why I couldn't do any job.  Obviously, if they will testify to that in a Disability hearing where they're being paid to say that I could work if I tried, then they're not going to waste their time to try to place me if I show up on their doorstep.  They know what employers will and won't tolerate, and even they can't imagine anyone hiring me.

It's actually rather laughable that people call me "too lazy to work" when I've done something that most disabled people haven't even tried: I started my own business and put myself to work at a damn good hourly rate, working the number of hours I have doctor's permission to work.  But every time I've tried to work more hours than authorized, I've relapsed, which proves that it's not that I'm "too lazy to work" more hours, but that I'm too sick to work more hours.  I'm able to work 6-10 hours a week because I'm spending absolutely zero time commuting.  If I had to spend an hour a day on the bus getting to/from downtown, I'd be able to work 1-5 hours a week, because all the commute and preparation time has to be subtracted from that 6-10 hours.  If I have to spend half an hour putting on a suit, nylons, and make up and fixing my hair to be acceptable in a conservative law office, that's time that I cannot spend working.  Or I can work at home in my jammies, and put that time toward earning money.

The VocRehab experts are right: there is "no job" out there that I could do successfully because this is not an ideal world.  Employers put their bottom line first, and many of the disabled cannot produce at the required 110%.  Perhaps some day we'll have a society where employers have the Noblesse Oblige mindset to offer employment to the disabled because it's the right thing to do, even if the disabled aren't as productive or reliable as the able-bodied.

But for now, most employers think that providing full employment for the disabled is a great idea ... for the competition.  Not for themselves.  They'll complain about us being a drain on the taxpayers, but won't do a thing to helpus BECOME taxpayers.  Which is what most of us used to be, and most of us would like to become again.