Does Awareness day only highlight a lack of awareness?

Friday, May 12 was Myalgic Encephalomyelitis (ME) Awareness Day. If I did not suffer from this devastating and life-limiting disease, I would never have known there even was an ME Awareness Day.

Those who spoke on the lawn of the Washington Monument gave heart wrenching accounts of how post viral illness has wreaked havoc on their lives, as has the dismissal and gaslighting by medical professionals.

In the live chat broadcasted during the event, many lauded the speakers for their efforts. While watching the conference from afar on a Twitter stream, I couldn’t help but feel a bit underwhelmed.

The crowd looked sparse despite the backdrop of rows of cots representing the Long Covid and ME/CFS patients missing from our lives. I saw several others watching from home criticizing the event for focusing too much on Long Covid and not enough on ME/CFS. Although Long Covid did receive the lion’s share of attention that day, my disappointment had a more nebulous origin.

I do not see politicians taking seriously the issue of post viral illness. I don’t see urgent calls for reform in medical education to include these diseases in their curricula. And I don’t see a society that recognizes, respects and accommodates individuals suffering these illnesses.

At the start of the pandemic, for the first time ever, I had real and tangible hope that the landscape of post viral illnesses would soften into something that is more socially acceptable. To do this, though, the public had to properly portray the pain, suffering and isolation that are so intrusive when ME/CFS or Long Covid move into your life and suffocate you.

But this effort failed on many fronts, but the biggest failure was ingrained into the public consciousness decades ago: the name chronic fatigue syndrome.

I have written before about the incalculable stupidity of this name. Many who I have spoken to online say that everyone they know still calls it chronic fatigue syndrome. This name conjures ideas of normal tiredness, nothing that a little rest won’t fix, and of course, this could not be further from the truth.

At my sickest, I literally thought I might die. The feeling of my body rejecting its own tissues is still fresh and haunts my mind. The sense of doom and helplessness. The grief over your lost future. The inescapable physical agony. No one who thinks of chronic fatigue syndrome imagines these horrors.

Instead, they see laziness, weakness, selfishness and self-indulgence. I blame all this on the antiquated moniker of chronic fatigue syndrome.

I blame the historically grievous lack of funding largely on the name. Chronic fatigue syndrome sounds vague, unexciting and inconsequential. In reality, the ramifications of your body betraying you are unimaginable to your previous self. They are also usually permanent. The gravity of the illness warrants that “CFS” be removed from the name entirely. (I use it on this blog for clarity purposes.)

I also think the CFS moniker is partially driving the division between Long Covid and ME/CFS. My personal belief is that if someone has Long Covid and meets the diagnostic criteria for ME/CFS, then that person has ME/CFS. Essentially, they are the same disease, and trying to separate the two has led to infighting on social media. In turn, the infighting hampers efforts to unite the two conditions and their respective communities.

To most Covid long haulers, the prospect of an ME/CFS diagnosis is the worst possible outcome. Having been forced into this dismal world, I’ve seen many clinging desperately to hope that one day soon, they will find a way out. Some people do recover from Long Covid, but the majority are still having their lives hindered tremendously even after years of attempts to reclaim their health.

On the other end of this argument is the ME/CFS community, many of whom share my belief that the two diseases are one in the same. Furthermore, many ME/CFS sufferers expressed anger and concern on ME Awareness Day that Long Covid was overshadowing the original purpose of the day.

Infighting aside, what left me feeling so dismayed on ME Awareness Day was the general feeling of a lack of inertia that has so plagued post viral illnesses for so long. The National Institute of Health RECOVER initiative is out of money after wasting two years on debunked therapies rather than useful and urgent drug trials. In contrast to my blind hope at the start of the pandemic, it feels instead like we swung the bat and missed big time.

What also left me feeling hopeless were the countless comments on social media from all those ME patients mourning another awareness day that the world continues to largely ignore. Our hope was that the condition would eventually be looked at with the seriousness that it deserves. Unfortunately, it looks like we still have a road ahead of us that is much too long.

—Bridget O’Shea