What can long COVID research tell us about ME/CFS?

Cort Johnson from the Health Rising blog looks at the potential links between long COVID and ME/CFS, and whether the massive surge of interest in the former will ultimately benefit people with ME/CFS.

The most important question facing ME/CFS right now might not be whether or not a virus or inflammation or blood vessel damage is present, but rather how much does ME/CFS resemble long COVID. A close match between the two diseases would mean that the billions of dollars pouring into long COVID should benefit ME/CFS as well.

Common findings

So far, things are coming up aces. While it should be noted that some findings are preliminary and need to be validated, the long list of common pathologies so far is impressive indeed. They include the generation of large numbers of autoantibodies, inefficient energy producton, a low energy/hypometabolic state, reduced exercise capacityEBV reactivation, reduced cerebral blood flowblood vessel/coagulation problemshypocortisolismaltered gut microbiome, autonomic nervous system issuesbrainstem involvement, increased oxidative stressmitochondrial issuesT-cell exhaustionmast cell activationincreased brain white matter hyperintensities, and small fibre neuropathy. It seems like just about everywhere you look similar findings are popping up in long COVID. 

All that raises the very interesting question – what can long COVID research tell us about ME/CFS, now or at some future point? The many commonalities found suggest that at least one crucial question – whether the specific pathogen really matters – is so far being answered in ME/CFS’s favour. 

If every pathogen produced a different kind of post-infectious disease, the search for an answer to ME/CFS would be a long and arduous one indeed, given the many different infectious triggers (EBV, Giardia, Coxsackie, Ross-River Virus, enterovirus, etc.) that can cause it. Thus far, thankfully, the long COVID triggered by the SARS-CoV-2 virus looks very much like the multi-triggered ME/CFS. That suggests similar core issues may exist and that a treatment that helps long COVID may very well help ME/CFS.

Indeed, long COVID and ME/CFS researcher Avindra Nath recently told me that he believes the best way to solve ME/CFS and its cousins (fibromyalgia, post-treatment Lyme disease syndrome, Gulf War illness, environmental illness) is to throw everything you can at one of them. Once we figure out one disease, he believes we’ll be able to figure out the rest.

Larger studies

Size matters a lot in research. Many small ME/CFS studies have provided intriguing findings that have either been left on the vine or haven’t amounted to much. That should change with long COVID.

Complexity matters as well, and any disease that features blood vessel, energy production, autonomic nervous system, brain, immune and hormonal issues is going to be quite complex. That’s a lot for a small field like ME/CFS to take on. In fact, it’s a recipe for decades of slow work. Not so, though, for long COVID.

To take just one effort, the $1.15 billion (or £1 billion) long COVID Recover Initiative in the USA. This National Institutes of Health Initiative gave researchers the opportunity to tackle a complex new disorder from the ground up. The project has been designed to provide answers and not leave behind a litter of potential leads. Large research studies that can talk to each other are in; small research studies that can’t are out. Massive databases are in; research silos are out. Large clinical trials that can provide definitive results are in; small clinical trials that don’t are out.

We should expect that mysteries that have dogged the ME/CFS field for decades to finally be fully explored. The idea that a pathogen or even a piece of pathogen, for instance, is still present and driving symptoms in ME/CFS has been around in various iterations (enterovirus, EBV, HHV-6) for decades. With the Long COVID Research Initiative devoting $15 million and up to $100 million to dig into that question, and with the RECOVER Initiative starting off their clinical trial push with an antiviral, that crucial question might be answered in the not too distant future.

The question that virtually every person with ME/CFS has pondered again and again – “Why me?” – might be one of the first questions solved. That’s because: a) participants that were already being closely tracked in other studies are being included in the RECOVER Initiative, and b) the biology of people as they come down with long COVID is being assessed.

That means RECOVER researchers will have a wealth of data to help them determine why one person is vulnerable to a post-infectious disease while another is not. That finding, in turn, would provide a nice string that researchers can pull on and, who knows, perhaps unravel the mystery of why long COVID occurs and how to stop it.

Fast moving

The long COVID field is moving quickly – almost too quickly to keep up with. Dr. Danny Altman, a professor, and director of an immunology lab at Imperial College in London, stated, “The knowledge we now have [about long COVID] is fast forward times 10. I know as much about long COVID in two years as I’ve known about many other diseases in perhaps 20, 30 or 40 years.”

That’s an encouraging report given we’re at the very beginning of the effort to understand long COVID. The slow moving but massive RECOVER Initiative, for instance, has published just one study thus far. 

That suggests that before all is said and done, researchers have a good chance of putting the pieces of long COVID together, and if Avindra Nath is right – that’s all we’ll need for ME/CFS.

Better healthcare

The massive interest in long COVID is translating into a massive increase in potential providers for long COVID – and ultimately, for ME/CFS. While most of the long COVID clinics undoubtedly have a lot of catching up to do, the dozens of long COVID clinics in the UK, the hundreds of clinics in the USA, and the many long COVID clinics opening up in cities worldwide that have no ME/CFS experts, provide the possibility that a knowledgeable and up-to-date healthcare provider will, as the field evolves and more treatments become known, be available close by.

Dr Bateman of the Bateman-Horne Clinic in Utah has said that she hopes that in a few years not just a hundred more, but a hundred times more doctors will know the basics of how to treat ME/CFS.

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