Random Thoughts

As a CFS activist, I’m often subjected to venomous attacks from people who think my ideas that CFS is a physical illness are right up there with the wearers of tin foil helmets.

What they don’t understand is that I don’t give a flying rat’s patoot about public opinion.

I was performing all over the tristate area as a teenager. Sometimes we wouldn’t set foot inside the school building for a week at a time – our bus to a performance left before the doors opened and returned after school let out. We were on the road so much we sometimes joked "class? We’re supposed to go to class?!" I didn’t see M*A*S*H in the original run because I was never home when it was on; I got hooked on it in late-night re-runs, a good half-hour of laughs to come down from a performance high so that I could get to sleep. Other shows that our classmates were talking about and it just went right over my head, never heard of it.

We got used to being out of synch with the rest of the world, marching to our own drum, laughing about it that Karen and Peter were going to waltz to everything including Pink Floyd. (Hey, we did the best waltz this side of Vienna ... you play to your strengths.)

OK, it was not a normal teenagerhood, but it was good preparation for being an activist, because I learned early on not to care if people were making fun of our costumes, our dancing, our class attendance, etc.

If you’re going to be in the public eye (as I have been since I was 14), someone is always going to criticize something about you. At dancing weight – 20 pounds below the minimum acceptable weight on the height/weight chart – I was still a size 12 because I have linebacker shoulders and hips to match. There were people who complained I was too skinny (my friend Jon says I "looked like an Auschwitz survivor") and people who thought that anyone who wears a size 12 needs to lose weight because anything over a size 4 is "too fat". You can’t be too fat and too skinny at the same time, so you learn to ignore all the negative comments and do things your way, because in the end, the only opinion that counts is your own.

In this case, I know that the research supports my position. Yes, there’s research that "appears" to support the claim that CFS is psychiatric, but if you analyze that research carefully, the patients didn’t have CFS at all. They had depression (if that’s what the researcher wanted to prove) or stress (if that was his goal) or some other psychiatric problem; the diagnostic criteria that would differentiate CFS from depression were not applied to the patients in the research pool – they weren’t asked about infectious onset, fever, rash, swollen glands, etc., they only needed those symptoms where the two overlap, and then were passed off as having "CFS" when no ME/CFS researcher would have made that diagnosis because they don’t meet the criteria for True CFS. (See Dr. Hooper’s article posted recently.)

And since the research – which I have read and the attackers apparently have not – does support my position that CFS is a post-viral illness that in some ways resembles serious diseases like AIDS, MS and polio, I really don’t care what they say about me and my ideas, because all it does is prove their ignorance and immaturity to think that name-calling is going to either make me cry or crawl under a rock and hide.

As my debate coach used to remind us, ad hominem attacks prove only that the opposition has no valid argument and can only hope to win by attacking your credibility.

Except in this case, it’s not only my credibility, but that of Ivy League-trained doctors, some of whom are professors at Harvard. I may not have the medical credentials to come up with or support these theories on my own, but Harvard-trained researchers like Dr. Bell and Dr. Komaroff have all the credentials and credibility needed to support the validity of the notion that CFS patients are neither lazy nor crazy ... they’re being maligned for having had a virus that Modern Medical Science has not yet identified. Patients should not be held accountable for the failings of doctors.

But for too many of us, our lives and finances have been ruined through no fault of our own. When you give the doctor all the information he needs to diagnose post-viral CFS, including a previous diagnosis from a virologist, and he still gets it wrong, that’s not the patient’s fault.

But the patient is the one who will suffer the rest of her life because her condition deteriorated due to lack of proper treatment. And that makes activists for any disease very angry, in ways that insults and verbal abuse won’t.