Either Way, it’s Further Proof that ME/CFS is Not Psychological

Trying treatments and having them fail you is something you will most certainly experience if you have ME/CFS. Although a diagnosis can help at targeting any potential therapy, the disappointment and despair that occurs when yet another promising potential treatment fails requires no confirmation. The hopelessness itself is soul-shattering.

I’ve written previously about the many potential treatments I’ve tried and how little effect they had on my incapacitating fatigue, relentless insomnia, and all else that comes with this terrible illness.

This year, around mid-May, I was able to obtain a prescription for Maraviroc, an antiviral originally developed for treating HIV. It was not cheap, even with a steep coupon, but I’ve been utterly desperate. Several accounts I read online left me skeptical. I even began to suspect I might be getting scammed. With ME/CFS, you learn to distrust every single aspect of the medical establishment.

After a month of pretty much no improvement on the drug, I fell into my familiar pit of hopelessness. ME/CFS is not just life-destroying. It’s a disease that teems with false hope and mirages of healing.

ME/CFS isn’t an easily accepted on a social level, and snake oil salesmen and well-meaning friends alike often abound with questionable homemade remedies and so-called “cures.”

But Maraviroc was a real drug, not some wellness routine based on green juice and unregulated supplements, so my hopes were high. Four weeks in had me crying in despair over its ineffectiveness. Besides, I was told there was roughly only a fifty percent chance the drug will benefit me, and this just added rage to my despondency.

But then something amazing happened: I began to feel somewhat normal again. I’d still awaken with awful lethargy even after a full night’s sleep, but the feeling lifted rather quickly. One day I went out to run some errands. When one of the stores I went to didn’t have what I was looking for, I got back in the car to go look elsewhere. However mundane this may sound, this extension of my time out of the house was an illuminous revelation. I had the energy to do extra things. My energy level was such that this little jaunt out didn’t warrant immediately returning home.

A week later, I was going on walks on the shore of Lake Michigan. I casually perused job sites. I went to a free outdoor concert featuring drag queens and stood for several hours straight without issue. The huge speakers blasted out music that was so loud even my perfectly healthy friends commented about the excessive noise. I was able to stand it all though, even enjoy it, like a celebration of life returning to me, and me returning to life.

Just a few days later, I was reluctantly roller-skating my way around a waxy track in a tucked away rink on Chicago’s south side during an open skating party. I wore the same pink and white Sun-Ups I wore in third grade. Yep, my feet stopped growing when I was just nine years old, so I always kept those stiff plastic skates.

I was, by comparison, quite slow on that rink, but Marvin Gaye and the Village People sang out as I glided along in what felt like heaven, and every flash of music felt like gold.

In the midst of this newly evolving recovery story, though, there is a dubious caveat:

When treating ME/CFS with Maraviroc, the drug’s benefits reportedly begin to fade after about three months. Then what? Am I facing an imminent return to the prison of the living dead?

Indeed, is Maraviroc providing nothing more than a whisper of a promise, life slyly winking at me before vanishing back into the vast and shadowy abyss? Am I living within a shell? Will this freedom crack and plunder in on me? What if I begin working again and the beast moves back in? What then? The looming threats drive me mad. Like a dream, they fleet backwards when waking life sets in. The nightmare of the sick being the reality is endless.

For this reason, I’ve been reluctant to speak about my latest medication and how it has benefitted me. However, the recent uprising of the biopsychosocial (BPS) model of post-viral illness, however feeble, compelled me to speak on the reality of ME/CFS as a disease that is 100 percent physiological.

Years ago, I was prescribed antidepressants for my ME/CFS. I said to the doctor that I need antivirals, not antidepressants. The doctor laughed at me.

Now, here I am. And at the risk of sounding smug, I’d been right all along. I’m doing better than I have been in a long time thanks to this particular antiviral that is doing things no antidepressant could come close to.

Yet my future remains uncertain. Will the wonders of this drug last? Only time will tell. However my story with Maraviroc ends, it’ll inevitably be one among millions that dispels the BPS model. Even if I’m once again bedridden by autumn, the proof will be there, as it’s always been, that there is nothing psychological that causes a virus to wreak catastrophic damage on a person’s body and on their life. Can we please put this ridiculous theory to rest already?

The BPS model is more and more becoming the butt of jokes, which is a great sign. But so much more needs to be done. A celebrity recently went public about her struggle with ME/CFS, claiming that she cured herself with diet, exercise and meditation. It is these kinds of “advocates” that will ultimately set us back.

Drugs are the answer. Antivirals, antibiotics, antifungals, NSAIDs, whatever works. Diet and meditation may make slight dents, but real change will happen when harder science steps in and gives us real solutions. Until then, I can only hope against hope that my own improvement will sustain.

—Bridget O’Shea