After two years of symptom-free living I had a relapse of my chronic illness. My health was back to pre-illness levels, and I thought I could move on. Well, sort of.
My last remission began, I’m estimating, in the first week of April of 2020, at a time when no average citizen could have known the entirety of the global chaos that would thrust so many of our own realities into a mass tragedy that would affect virtually every human on the planet.
Two and a half years into a pandemic that shows no signs of ceasing anytime soon, I’ve been deeply disheartened by the lack of mention let alone progress made in ME/CFS and Long Covid research. The mass ME/CFS cases arising from Long Covid seem to have done little to dissuade doctors who are still calling post-viral illnesses “new.”
photo by Ryan Grewell
The process of finding true, effective biological therapies for patients with post-viral illnesses is moving like a tortoise on tranquilizers and it is unacceptable. We are tired of feeling, ourselves, like the only way to manage our symptoms is to move about life like those giant-shelled beings, moving exponentially slower than we did pre-illness. Many of us were active, healthy people doing daily tasks with regular stamina and fulfilling our responsibilities until our lives were so suddenly stopped. Doing exponentially less with every day of my life is not acceptable for me. We all want our old lives back.
Long Covid patients, echoing the long-ignored and dismissed concerns of ME/CFS patients, are impatient and growing increasingly infuriated by the slow progress regarding interest, visibility, support, attention to scientific and evidence-based research, proper treatments and hopes of any cure.
But particularly infuriating was a recent post on Twitter with an article discussing replacing the now-debunked CBT (cognitive behavioral therapy) treatment model for ME/CFS with something called ACT (acceptance and commitment therapy).
This is what the blasphemous Psychology Today had to say about ACT:
“ACT shows you how to confront and accept your experiences, feelings, and thoughts and stop overthinking and struggling against them. ACT reminds you that stress and difficult emotions are parts of the human condition, yet you can find ways to still acknowledge and work through the issues that cause them.”
The article goes on to say:
“ACT is helpful if you avoid your problems because you’re encouraged to accept and work with uncomfortable feelings. In ACT, you’ll learn acceptance and self-compassion, which may be helpful for the rest of your life.”
I’m confident that this is one of the biggest loads of BS I have seen in my studies of the politics and treatment of ME/CFS and like diseases over the last many years of my quest to understand this ongoing nonsense. Oversimplified is such an understatement… I have no words.
These conditions have been around in rapidly alarming numbers since as early as the late-1970s. Moreover, similar, isolated outbreaks of post-viral “mystery” illnesses have been extensively documented from as far back as the late 1800s, and I suspect that, the dates go back frighteningly further. It is shocking and very worrying to me that global governmental concerns over Long Covid and resulting ME/CFS cases are being dubiously pushed back into the shadows from which they’ve briefly emerged.
ME/CFS needs no passport. Like a vampire, it can live indefinitely due to the public and governmental trivialization and denial of the condition as a real, organic disease.
Cases of ME/CFS-like illnesses have, since 1951, been reported in the US, the UK, Spain, Australia, Mexico, South Africa, China, Sweden, Norway, France, New Zealand, Canada, the Netherlands, Japan, Brazil, Argentina, Germany, Denmark, Poland, Iceland and beyond.
We are moving at the pace of a tortoise on tranquilizers. We must move faster than these ancient creatures with their leathery necks and century-old eyes. We have no idea how many lives depend on it, but the current trajectory and pace suggest to me that we may need to brace ourselves for the worst.
–Bridget O’Shea