Trial By Error: What I’ve Read Recently–Yong, Jason, Prior & Lowenstein, & Eliot Smith

By David Tuller, DrPH

*October is crowdfunding month at UC Berkeley. If you like my work, consider making a tax-deductible donation to Berkeley’s School of Public Health to support the Trial By Error: project: https://crowdfund.berkeley.edu/project/33528

Almost seven years ago—in October, 2015–Virology Blog published my 15,000-word investigation of the arguably fraudulent PACE trial. (Thanks, Professor Racaniello!). At the time, no one but patients and a few clinicians cared about ME/CFS—at that point mostly called chronic fatigue syndrome. Besides continuing to blog about it, I’ve published some other articles here and there: an opinion piece for The New York Times (co-written with Julie Rehmeyer), a lengthy narrative investigation for the online science magazine Undark, and a few pieces for STAT, the well-read health-and-data site. For the most part, however, editors at mainstream publications weren’t too interested, to put it kindly.

ME/CFS is finally having its moment. The most high-profile evidence yet: Ed Yong’s excellent take in The Atlantic, called “Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases,” which was posted last week. Yong’s body of coronavirus coverage in 2020 earned him a Pulitzer Prize. His work continues to play a key role in countering the pompous and dangerous nonsense still disseminated by the likes of Professor Trudie Chalder, Professor Peter White, and their comrades in the psychogenic ideological brigades, not just in the UK but in the US and elsewhere. (Since posting the piece, Yong has announced a six-month sabbatical in this emotional twitter thread.)  

After so many years, it’s kind of amazing and very moving to see an article like this in such a prominent venue.

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Leonard Jason, a psychology professor at DePaul University and a prolific investigator, also drew sharp links between ME/CFS and long Covid in a recent opinion piece. The headline of the article, which appeared in The Chicago Tribune, noted that “the key to demystifying long COVID-19 could come from studying another chronic condition.” The article, which called for the government’s big research program into long Covid to include a focus on ME/CFS as well, cited predictions that the prevalence of ME/CFS will rise dramatically because of the coronavirus pandemic.

Here’s the opening:

“Before the COVID-19 pandemic, 1.5 million people in the U.S. were estimated to have myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, with an annual economic impact of $36 billion to $51 billion. Due to COVID-19, the total ME/CFS prevalence could rise to between 5 million and 9 million people. This would cause the annual U.S. economic impact to rise to $149 billion to $362 billion in medical expenses and lost income.”

Jason also recently published an interesting study in the journal Molecular Omics that I meant to write about a month or two ago but then got distracted by other matters. Jason and colleagues took blood samples and data from incoming college students, then tracked those who developed mononucleosis and, after that, ME/CFS. They then assessed the baseline, pre-morbid samples to suss out differences between those who stayed sick and those who got better. Here’s what they found:

“Examining pre-illness blood samples, we found significant detectable metabolite differences between participants fated to develop severe ME/CFS following IM [infectious mononucleosis] versus recovered controls. We identified glutathione metabolism, nucleotide metabolism, and the TCA cycle (among others) as potentially dysregulated pathways. The pathways that differed between cases and controls are essential for proliferating cells, particularly during a pro-inflammatory immune response.”

I ran the study by my UC Berkeley friend and colleague John Swartzberg, a physician and infectious disease specialist. Here’s what he said: 

“I think this is a very interesting paper.  Metabolomics is a relatively new field, at least when used to understand disease processes.  Their results are intriguing and begin to build a foundation upon which we may be able to use metabolomics to predict outcomes (e.g., cancer) and explain the stigmata of disease (signs and symptoms).

“Because there is little context in which to put their results, it’s difficult to make causality statements at this point.  And, they had very few subjects (18 in each group).  Still, this is solid work. Bottom line:  This will likely be a fruitful line of inquiry into ME/CFS.”

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My friends and journalism colleagues, Ryan Prior and Fiona Lowenstein, teamed up recently this week to write a column for The Guardian about the impact of long Covid on the workforce. Here’s an excerpt:

“As two people personally affected by post-viral illnesses, we understand the difficult choices facing long-haulers who can’t survive financially without working. We both rely on remote work and flexible schedules to manage our health – privileges many with long Covid lack. Our symptoms are also milder than many, allowing us to work at all. More severely sick long-haulers face major barriers accessing social security disability benefits. Those who do qualify will receive a mere $1,358  on average each month.”

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For ten years, barrister Valerie Eliot Smith has offered smart, rigorous commentary and advice to the ME/CFS community through her no-nonsense blog, Law and Health: due process and civil society. I am sad to say she has recently written what she declares is her final column. I will miss her public voice on key issues. (Valerie and her husband, Robin Callender Smith, suggested the name “Trial By Error” for my initial PACE investigation. The name has stuck.)