So, this was the appointment for which I waited a total of seven months. The first time I went to the Chronic Fatigue Clinic was laughable. It turned out to be an intake appointment: hours of question-answering and no information or practical advice beyond that I should eat pickles and pizza to get my blood pressure up. This time around, the vast majority of the discussion was with a “pain specialist” who works with the main doctor. I answered a long list of questions again, this time about my current symptoms and their debilitating-ness on a scale from 1 to 10. Pain and headaches are currently my worst symptoms, followed by stiffness, achiness, exhaustion.

When the main doc finally joined us, he said…very slowly… “your symptoms are confusing” …pause… “they’re so varied” …pause… “but” …pause… “we still consider this chronic fatigue syndrome.” About five minutes later he said, “the reason you’re confusing” …pause… “is because you tested positive for…” For what? FOR WHAT!? “…plasmodium.” Oh. Yeah. But that was a false positive. Right? He didn’t seem to quite buy the false positive for whatever reason, which now has me thinking about malaria again. He didn’t want to pursue it, but he just was so slow and thoughtful about this malaria conundrum that it made me think he knew more about how those tests work than I do and that the positive results shouldn’t just be swept under the rug. Regardless, I have no symptoms of active infection, so he thought we should move forward with CFS symptom management.

Both doctors gave me a brief synopsis of “central sensitization” and how chronic pain manifests itself. Although I still felt like I knew more than both of them about ME/CFS, I’m hoping this was just because doctors never show all their cards (or even that they HAVE cards) in one office visit. I’ve stopped holding it against them. They don’t have time, after all, to convince me that they know their shit. And the main doctor’s eyes said he cared, so I’ll trust him. The first doctor did try to explain things as succinctly as possible (nerves, serotonin inflammation, blah blah), although I knew it all already and, after talking fairly quickly for 45 minutes, I felt like I was about to pass out. I start out so strong and drain out so quickly. I felt myself slipping lower in the chair. My head felt like it was being held up by a noodle. I kept looking longingly at the rumpled, beaten-down gurney.

The main doc, to his credit, didn’t dumb anything down and emphasized repeatedly that the medical community does not fully understand the mechanisms behind what happens in chronic fatigue syndrome, but that it is a central nervous system disorder. He said the etiology of CFS, fibromyalgia and chronic pain is the same, so the treatments are similar. He used to work with Jon Kabat-Zinn, which excited me since I’ve read Kabat-Zinn’s book, listened to his meditations and podcasts etc., and my therapy has been based on his mindfulness models.

Unfortunately, I didn’t get a chance to ask any of my questions: Should I see a rheumatologist? Cardiologist? Neurologist? Should I be tested for heavy metal toxicity? Hormone levels? Serum electrolytes? Coxsackie? XMRV? They didn’t want to retest any of my year-old blood tests without any new and/or severe symptoms.

Ultimately, my marching orders were to start Cymbalta at 20mg, see the clinic’s psychotherapist and read The Pain Survival Guide (written by Dennis Turk, a colleague of theirs, incidentally). Also, both doctors were emphatic that exercise was the best medicine (although, they called it “activation” to try to trick us into thinking it was more technical and less threatening). My husband piped up about our fears when it comes to graded exercise. I said, “I try to keep active, but if someone is going to ask me to lift a weight… forget about it.” Momentarily, I wanted to scream: Get into my body for one week and then tell me to exercise or waste energy seeing your psychotherapist or come back to useless appointment after useless appointment! But, it was only momentary. They’re trying. They’re treating us. They’re our only hope.

As we were leaving, I said, “Call me if you need a guinea pig.” The main doctor said, “You’d be amazed how many people say they’d like to be part of research studies.” “Not really. When you don’t want to live like this, there’s not much to lose. We need all the help we can get.” This coming from the lady who has unopened bottles of SIX different prescriptions that might supposedly help me. I’ll participate in a research study as long as you don’t touch me or give me any drugs.

Daily gratitude: for all the doctors and researchers trying to find the answers to ME/CFS/FM. Thank you.