When I hear the word ‘controversial’ being used to describe ME/CFS, it always sparks anger in me. I don’t like my poor quality of life being ‘controversial.” I want my poor quality of life to be cured.

This word also conjures thoughts of delayed research and, subsequently, delayed treatment, like the controversy is what happens while we remain sick. Ominous figures in some backroom arguing, voices piercing, while we try to make out the words. What does this uncertainty mean for research funding, pharmaceutical trials and advanced treatment?

Yes, all this attention is a good thing in many ways. Much of the controversy is a result of bringing to light the physical causes and suffering of a condition long believed to be psychological.

It’s just the word “controversial.” Like you might as well call it post-modern or a fad or something.

Like Sarah Ramey says in “The Ladies Guide to Her Mysterious Illness,” “Jeggings are a fad.”

An infectious pathogen is not.

So maybe it’s just the word. Controversy is preferable to blind ignorance. And the science seems to be proving time and again that ME/CFS is a physical and not mental illness. Much of the controversy is perpetuated by those in power grasping at the stranglehold of psychologizing the illness and insisting on antiquated treatment models that harm patients by chalking how awful they feel up to being “unconditioned” or some similarly vague, insulting simplicity.

I have been very pleased to see all the organizations in recent years who have come forward advocating for a change in the ridiculous treatment of this disease and for the rights of those of us who have lost so much of our lives to decades of abandonment from the mainstream medical profession.

With biomarkers possibly on the horizon, let’s remain guarded, strong and hopeful.

—Bridget O’Shea