It’s nice to have a billionaire in your corner. Earlier this year, billionaire Vitalik Buterin pledged to devote $100 million to high-risk, high-reward COVID-19 efforts. He made good on at least $15 million of that when he jumpstarted The Long COVID Research Initiative.

Led on the science end by microbiologist Amy Proal, the effort also includes a former Google employee and product manager, Henry Scott-Green, an investor, Helga Gutmane, and startup founder Nick Harrold. That’s not your ordinary research foundation group – and these are not ordinary times.

TechCrunch reported Green has got hit hard enough by long COVID that he was unable to do even basic tasks. Green’s experience clearly lit a fire in his belly – he wants answers sooner rather than later.

Run through the PolyBio Research Foundation, the Long COVID Research Initiative (LCRI) effort looks like something that happens when Generation Z, with its focus on rapid development and agile programming, runs smack right into a traditional and slow-moving medical research system – and finds it wanting. The LCRI isn’t panning the usual medical research efforts – they’re want to do them faster.

“We’re running as a lean organization that prioritizes fast execution and close collaboration — and generally, and where it makes sense, trying to apply the organizational principles that have allowed tech to deliver big, ambitious projects quickly,” Scott-Green .

They hope to be the answer – or at least part of the answer – to the millions of shocked and angry long-COVID patients who expect their medical system to at least have something for them (welcome to the club). The Initiative even calls itself “A patient-driven movement to accelerate Long Covid Research”.

Lighting a Spark

Lighting a spark long COVID

The Initiative wants to quickly light a spark – and get the long-COVID field moving.

E. John Wherry, an immunologist at the University of Pennsylvania, told Science, “We need a spark, we need a philanthropic organization that has a risk tolerance much greater than NIH.” Of course – a spark – something that ignites the research world – is what the ME/CFS community has been looking for, and praying for, for years.

Eschewing the long lead times of federal efforts –  grants can take a year or more to wind their way through the convoluted backwoods of the NIH – the group wants to function like a startup that balances “urgency with pragmatism”. The trick, of course, is how to do good science quickly.

That will take top scientists who can quickly pluck the wheat from the chaff and Proal – the lead scientist in the effort – has assembled a roster of respected scientists that hail from Harvard, Yale, Stanford, UCSF, Vanderbilt, Emory, and the J. Craig Venter Institute. Besides Proal and VanElzakker, some of the names – Systrom, Novak, and Iwasaki (recent keynote speaker at the IACFS/ME conference) – are familiar.

Viral Persistence Tagged

Viral persistence is “the trend we see the most evidence for.” Amy Proal

Instead of spreading itself thinly over the many areas of interest in the fast-growing long-COVID field, the LCRI appears to be doing a very smart thing – it’s throwing all its energy at this point on just one of them – viral persistence. Is the coronavirus – in one form or another – still present, and if it is, is it continuing to tweak the immune system in the long haulers?

You don’t spend $15 million to look for pathogens in the blood. This group is going to look in the tissues – something we’ve wanted to have happen in ME/CFS for a long, long time. If a pathogen or a piece of pathogen is putting the immune system on alert – which is then producing the symptoms in long COVID and/or ME/CFS – then finding a way to nail down that pathogen would be an immense step forward. No one has committed these kinds of resources to doing that. This is potentially a very big deal.

If the answer to the viral persistence question is yes, the Initiative plans to move into treatment trials that could include SARS-CoV-2 antivirals, immunomodulators, targeted anticoagulants, and microbiome-based therapeutics. If they get an answer for the SARS-CoV-2 virus, the next stop is the Epstein-Barr virus (EBV).

The group has already accomplished one of its main purposes – get the word out in a big way. The news of the new effort was quickly picked up by many major media outlets including Techcrunch, the Los Angeles Times, Yahoo News, Forbes, the Wall Street Journal, Science, and others. That’s good news for a group that hopes that their $15 million kickoff is just the start: it hopes to bring in $100 million over the next couple of years to dig deep into the molecular roots of long COVID.

Amy Proal – the Science Leader of the Effort on Long COVID Earlier This Year

The Disease That Shall Not Be – or At Least Is Not – Spoken?

The question of viral persistence has never gone away in that other post-infectious disease – you know – chronic fatigue syndrome (ME/CFS). Whether it’s enteroviruses or bits of enteroviruses, smoldering Epstein-Barr virus infections, or strange HHV-6 infections, researchers have proposed that all manners of pathogens may still be lurking somewhere. Nobody has had the money to really look for them outside of the blood.

Almost ten years ago, Michael Va Elzakker – one of the co-founders of the PolyBio Research Foundation – proposed in the Vagus Nerve Hypothesis that small infections found adjacent to the vagus nerve were tweaking it – producing the symptoms we see in ME/CFS. Now, we should be getting some answers to the viral persistence question – in long COVID, at least.

But what about ME/CFS and other post-infectious diseases? With four of its six projects featuring ME/CFS, the PolyBio Research Foundation that’s hosting the Long COVID Research Initiative has made ME/CFS a major emphasis. Amy Proal actually has ME/CFS, and in 2018 co-wrote a hypothesis paper proposing that “pathogen persistence” – the same topic the Long COVID Research Initiative is focused on – is driving it. Michael VanElzakker, of course, has been heavily invested in ME/CFS for the past ten years, yet I couldn’t find any mention of ME/CFS in the entire Long COVID Research Initiative website.

The fact that a group like PolyBio – which is so heavily invested in ME/CFS – chose not to mention it on the Long COVID Research Initiative should tell us something – and not something bad. Long COVID is where the interest and the money is. If you take as a given that much of long COVID is ME/CFS by another name, then what we really want is for the science on long COVID to move as quickly as possible. The faster it moves, the faster we move. If that’s true, why muddy the waters? Focus on long COVID – figure it out as quickly as possible – and open the door to ME/CFS.

Amy Proal, the originator of this effort wrote on Twitter:

 “Our long-term vision is to iterate our collaborative infrastructure and cutting-edge technologies toward the study of viral and bacterial #pathogen activity in related conditions. These include #ME/CFS, #LongLyme, MS, and Alzheimer’s disease”.

That applies to private efforts like the Long COVID Research Alliance that are seeking to throw some lightning bolts into long-COVID research and “spark” some real interest – not to the big federal institutions like the NIH and CDC, whose job it is to support everyone who is ill. They can and should immediately plump up the ME/CFS research field so that it is able to digest the insights that are sure to come its way in the coming years. They’re the only ones with the resources to do that and that’s where we need to put our focus.

A BIG thanks to the 320 people who helped make Health Rising's fundraising drive a success!

Stay Up to Date with ME/CFS, Long COVID and Fibromyalgia News

Get Health Rising's free blogs featuring the latest findings and treatment options for the ME/CFS, long COVID, fibromyalgia and complex chronic disease communities. 

Thanks for subscribing! :)

Pin It on Pinterest

Share This