Chronic fatigue syndrome – or myalgic encephalomyelitis (ME) – is the elephant in the long COVID room. For the past three years, much of the media and discussion around long COVID has treated the post-viral condition as an entirely new illness, a view that has been reflected in its research; scientists from around the world have scrambled to study the disease from scratch.
But if ME had been studied more thoroughly – or even just believed – years ago, much of the foundational work of long COVID research may already have been achieved.
That’s certainly the belief of many of those suffering from ME, who often live exceptionally stationary lives due to their condition. Some are bed-bound, quite literally, for decades.
“Half of long COVID symptoms are basically equivalent to ME symptoms,” says
Chris Ponting, a professor at the University of Edinburgh’s Medical Research Council Human Genetics Unit and lead investigator of its
Decode ME project.
If anyone is compensating for these “lost years of ME research”, it’s Ponting; he and his colleagues are currently conducting the largest study of ME ever undertaken. By analyzing the DNA samples of 25,000 patients, they hope to identify genetic markers that could underpin a person’s susceptibility to the disease. With that information in hand, they could then both validate the existence of the malady and identify targets for future drugs to treat it.
“We anticipate that we’ll be able to find a bunch of places in our genomes that scream at us: immunology, or mitochondria or some neurological phenotype in the genome,” says Ponting. “Then, through joining up the dots, we can make an evidence-based, cogent explanation for what is going wrong.”
It all sounds quite promising. But there’s an obstacle to follow-up studies, the same one that prevented ME research for decades: funding. “Our study was funded prior to the COVID-19 pandemic,” Ponting says. “There has not been further funding since then.”
Contrary to the hopes of many in the ME community, the relative surge of interest in long COVID has not translated into a research boon for other fatigue-inducing,
likely post-viral conditions, according to Ponting. “There has been a shift in the dial in acceptance of ME,” he notes, “which has not translated to substantial research funding that this disease deserves.”
And unfortunately, at the tail end of 2023, it’s not just ME that’s being starved of vital research. The funding well for long COVID is drying up, too.
