the Confusion and Concern Over the Campaign for One Name

We are all – ME/CFS and Long Covid patients – under the same cloud of misery. Some are on the brighter edges where the sun sometimes peeks through, while others are stuck in the black hole. Wherever you are in this massive, malevolent storm, let’s stick together and protect each other from the giant scientific and political hurricane that is deadest on dismantling us.

I first became ill in 2009, right at the dawn of social media. For this, I feel incredibly grateful. I’ve read accounts from people who were massively ill during the 1980s and 90s and the utter and complete isolation they felt must have been unimaginable.

Of course, I never thought, back in late 2009-early 2010, that I’d still be suffering from the same viral infection in 2023. But another thing I never expected is some of the volatility and infighting I witness among the online chronic illness community.

A recent point of contention I have come across is the issue of umbrella terms like Long Covid, ME/CFS, fibromyalgia, and so on. Many long haulers argue that their disease should be the focal point considering the exact origin of the onset can be traced. Those of us who have been suffering with ME/CFS long before the pandemic, on the other hand, have a feeling of being pushed to the back of the line even though many of us have been sick for much, much longer.

While there is no doubt that there are some marked differences among these frustratingly neglected conditions, I find the similarities, both in numbers and severity, to dwarf the differences.

The infighting, as it always does, comes down to money. And we can all agree on the tremendous frustration at watching the CDC and the NIH nibbling away at this urgently serious issue with “symptom management.” Where are the drug trials that were supposed to start so many months ago?

Yes, there are some differences between the conditions. Hair loss, a rare symptom of ME/CFS, seems to occur much more frequently with Long Covid. Microclots have become a new addition to the chronic illness lexicon due to Long Covid. In contrast, painful lymph nodes and chemical sensitivities are more commonly reported by ME/CFS patients than by those with Long Covid.

Elisa Perego of the U.K.’s Wellcome Open Research, who reportedly coined the term “Long Covid,” even spoke in a peer-reviewed journal in 2020:

“The term ‘Long Covid’ has now been taken up in scientific literature, the media, and in clinical, policy, and governmental spaces. Uncertainty regarding its value and meaning, however, remains.”

The same has been true, hidden from the public for decades, regarding ME/CFS. In addition to her referring to Long Covid as a “new entity” (which shows her lack of knowledge on the subject), ascribing voluminous and valuable meaning to this term will most certainly take the spotlight once again off us ME/CFS fighters and throw us back into the shadows where we have slithered for decades, waiting all the while for an opportunity just like this.

My personal belief when it comes to Long Covid is that if you’re either lucky enough to recover naturally (like grifter Paul Garner) or are one of the very rare cases in which meds, supplements or some combination has gotten you back on your feet, that is fantastic. However, far too many have sunken into the thick and insufferable swamp of ME/CFS.

I’ve also recently witnessed the term “post-infectious” and “post-viral” being furiously thrown around. I’m not exactly wild about this phrasing myself, but that is mostly because I (and many others) see it as a thinly veiled maneuver to further muddle transparency, for which there is already far too little.

This is an absolute carbon duplication, albeit on a far larger scale, of the government’s response to ME/CFS and similar complex diseases for decades.

The small morsels of transparency that did emerge since the $1.5 billion RECOVER program have been less than thrilling.

Lauren Stiles, president of the patient advocacy organization Dysautonomia International told CBS News earlier this month that she was particularly frustrated with RECOVER’s two internet-based training programs that are part of the neurological arm of the initiative.

"NIH chose to study what is essentially a computer game, not a treatment that actually addresses the underlying biology that is causing cognitive impairment," she said.

In many ways, we are all being played like computer games, or guinea pigs, or lab rats. Whatever you want to call it, we are in this holy hell of a mess together.

But then I see online feuds in which long haulers accuse M.E. patients as giving up and giving into their illness. M.E. patients attacking long haulers for being overly optimistic. However, this all makes perfect sense to me. No one wants M.E. People who have been sick anywhere from 2 months to 3 years with Long Covid are gripping with bleeding knuckles to the possibility of dodging the never-ending, lifelong wallops dealt by M.E., and I can’t blame them in the slightest.

What confuses me is this: it’s abundantly clear that causes, severity and symptoms of M.E. vary tremendously among patients. The same is true for M.S. and many other long-term illnesses.

The bones being picked on social media are disheartening. Yes, I do think an umbrella term – a good and scary one – would be useful in uniting us in raising awareness and, more importantly, research funds.

To separate M.E. cases from Long Covid in terms of causation and treatment would shatter the already-overburdened M.E. community into a trillion pieces. Considering almost all M.E. cases are diagnosed long after the initial pathogen has subsided, what would that mean for us?

We need to unite. We all agree that the current symptom management state of research is unacceptable and has been for a very long time. We all have so much in common and so much to fight for.

I remain skeptical that a cure for M.E. and other post-viral conditions will surface within my lifetime. However, if we approach this battle as two divided armies, I’m almost certain none of us will see that cure. Only more useless nutritional supplements. And of course, more gaslighting.

—Bridget O’Shea