By David Tuller, DrPH
The relationship between what is being called long-Covid and ME/CFS (and its variants) is complex. The conditions overlap in ways that are poorly understood, and the mechanisms through which they produce such significant disabilities remain elusive. As the coronavirus pandemic enters its second year, many tens or hundreds of thousands of people around the world are suffering from long-term medical symptoms after an acute bout of Covid-19. It remains to be seen how long their complaints will persist.
From the start, It was clear to everyone in the ME/CFS community, patients, advocates, clinicians, investigators–that some proportion of Covid-19 patients would likely experience a subsequent period of prolonged illness. It was also clear that this secondary wave of post-viral complications would have serious but unknown implications for ME/CFS. (I wrote about this possibility here, here and here.) Many hoped, as I did, that the long-covid phenomenon would bring much-needed attention to ME/CFS itself, as well as greater awareness of the pervasive neglect and dismissiveness to which these patients had been subjected for decades.
Well, that’s happened! ME/CFS officially became Big News on both sides of the Atlantic on the same day–Thursday, January 21. (The first full day of a non-Trump presidency, what a lovely coincidence!) Finally, two smart journalists who have not previously focused on ME/CFS have done what many of their colleagues haven’t. They have connected with–and listened to!–key sources. They have ignored the propaganda emanating from the committed proponents of psycho-behavioral treatments like graded exercise therapy and cognitive behavior therapy.
As a result, both of them–Moises Velasquez-Manoff, a New York Times contributor who writes about medicine, and George Monbiot, a well-known columnist for The Guardian–have produced compelling and well-written pieces that fairly and sympathetically represent the plight of ME/CFS patients. These guys deserve serious kudos. Either one of these articles would have been a big deal on its own. Together, they signal a genuine tipping point in the debate–one that I have pushed hard for over the last five years, as have others. Hopefully, after this, those who continue to argue for remedies based on deconditioning and €œunhelpful€ beliefs of having an organic illness will be increasingly dismissed, accurately–as out-of-touch gaslighters.
I’ve lived in California for 30 years but I’m still a New Yorker, and The New York Times is my home-town newspaper, er, news organization. So it was a particular pleasure to see Velasquez-Manoff’s exceptional piece in the magazine section. (His book, An Epidemic Of Absence: A New Way of Understanding Allergies and Autoimmune Diseases, was published in 2017.) The piece is long (although not quite as long as my 15,000-word deconstruction of the PACE trial!) but the extensive treatment is warranted given the complexity of the issues. Velasquez-Manoff talked to many of the leading players in the field. He traces the history of past outbreaks of ME-like illnesses, explores the ongoing medical and scientific investigations, and discusses how they relate to the long-Covid situation.
In the US, this piece alone could go a long way toward preventing situations along the lines of what is happening with Thane Fredrickson, a long-time ME patient in Minnesota. Thane is currently in the hospital for nutritional problems and is under threat of being involuntarily committed for psychiatric treatment. He began tweeting about his plight a few days ago, I reposted the thread on Facebook–and a team of advocates has now taken on his case. (In my reportorial capacity, I’m reaching out to the hospital and the clinicians involved so they will know the situation is being observed.) The Times‘ high-profile acknowledgement of some ME/CFS realities could serve as a persuasive plank in the argument that this sort of approach to these very sick patients is unjustified and unethical.
The Guardian has not generally been great on the ME/CFS issue. Rather than acknowledging the real situation confronting patients, it has often offered a robust defense of the CBT/GET campaigners, as in a 2019 column that haloed Professor Michael Sharpe and criticized my own work, even though the author made no apparent attempt to contact me. (More on that below.)
Even before Monbiot’s article appeared, patients had been abuzz with the news that he was working on something about the links between long-Covid and ME/CFS. (I should note that Guardian correspondent Linda Geddes wrote a well-researched piece on the topic in November.) A couple of weeks ago, he announced his intention on Twitter and was immediately flooded with a mass of material about the PACE trial, Professor Sir Simon Wessely, and other salient information. Poor guy! (He also revealed that he himself had contracted Covid-19 and was concerned about possible long-term consequences.)
Anyway, he collated the information and has written just what was needed, an urgent appeal on behalf of the Covid-19 long-haulers backed by a short but powerful accounting of the long-term neglect and mistreatment of ME/CFS patients. He notes past efforts to dismiss it all as psychosomatic. He highlights that the National Institute for Health and Care Excellence, which issues clinical guidelines, has updated its recommendations. He warns that UK’s long-Covid clinics are at risk of making some of the same mistakes that have been made with ME/CFS.
With a few exceptions, in particular, the work of Tom Whipple and Sean O’Neill of The Times, the major UK press outlets have performed disgracefully in this domain. For years, coverage of ME/CFS has been controlled and dominated by the anti-science shills at the misnamed Science Media Centre. They promoted the PACE trial and orchestrated press attacks on its critics. Some of its BFFs among the UK health/science reporting ranks actually participated in the SMC’s 10th anniversary celebrations, writing glowing testimonials of its role in their own reporting.
In 2019, one of these SMC acolytes–a Reuters reporter–wrote a love-note to Professor Michael Sharpe, one of the lead PACE investigators, in the form of a hit piece on his critics, including a section about me. I was portrayed as some sort of Pied Piper of ME/CFS patients, leading them away from proper treatment while shoving their money directly into my pockets through my crowdfunding efforts. (I crowdfund on Berkeley’s in-house platform; the money goes directly to the Center for Global Public Health, my home base on campus, and is used to cover my standard academic salary and benefits.)
In its own 2019 article, by a contributor named Andrew Anthony, The Guardian picked up this meme of €œthe perils of internet activism€ and repeated nonsense from Reuters. It was interesting to read how Anthony explained my provenance–I’m apparently a consequence of the litigious nature of the American medical system:
“It’s a harsh environment, fraught with lawsuits, that has bred a tough kind of activist. One of these is a man called David Tuller, a former HIV campaigner, who has become something of a hero to the ME/CFS community in the UK. He takes a highly detailed approach to medical papers, closely reading them to uncover any inconsistencies or potential flaws.€
I should point out that referring to me as €œa man called David Tuller€ suggests there might be some question as to whether David Tuller is my actual name or only the name that I allow people to call me. This naturally brings me to Moby-Dick, whose first sentence–€œCall me Ishmael€–is among the most famous opening lines in American literature. Anyone who reads Moby Dick in a college literature course learns immediately that you have no idea if Ishmael is his name or not. All you know is that’s what he wants people to call him, for whatever reason. So, given that: Call me David Tuller.
Also, isn’t it a good thing to “uncover any inconsistencies or potential flaws” in medical papers? Are readers supposed to ignore inconsistencies and potential flaws? Why does Anthony allow Professor Sharpe to portray this sort of in-depth scrutiny of scientific research as in any way nefarious and suspect? If the criticism is accurate, as it is in the case of PACE, then what’s the problem?
The Guardian article included no mention of my doctorate in public health and my position at Berkeley, one of the world’s leading research institutions. Instead, my main qualification for my work appeared to be my status as what Anthony referred to as €œa former HIV campaigner.€
So, here’s the story about that: I was a member of ACT-UP in New York for two years, from its inception in 1986. I was a young gay man and everyone I knew was dying. In 1988, I moved to San Francisco to become a newspaper reporter at the San Francisco Chronicle, and that ended my life as an “activist.” To attribute my current work on PACE and related issues to what I did 30+ years ago is preposterous. My opinion that the PACE trial is a piece of crap and likely qualifies as research misconduct is based upon my public health training and expertise.
That’s just one example of The Guardian‘s iffy track record. But Monbiot got it right. His piece will definitely help shift the conversation going forward, and hopefully lead to improved coverage in The Guardian itself.