Game-Changing Articles in The Guardian and The New York Times

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 “unhelpful” 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 “the 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 “a 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–“Call 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 “a 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.





13 responses to “Game-Changing Articles in The Guardian and The New York Times”

  1. Allyann Avatar

    Thank you, David, for all your continued reporting on the ME/CFS landscape. I truly have hope that the tides are turning to take ME/CFS and LongCovid more seriously. Allie

  2. Marilyn Gavranovic Avatar
    Marilyn Gavranovic

    David you do & have done wonders for the ME & CFS communities.
    Thank-You-Forever for all you have researched, written, spoken & promoted on behalf of our beleaguered patient cohort.
    Serious Kudos to you!

  3. Aisling McDonagh Avatar
    Aisling McDonagh

    Thank you so much David for all you have done for the ME community, and in spite of everything, not giving up! Very grateful to you.

  4. Lady Shambles Avatar
    Lady Shambles

    If it takes a village to raise a child, then so too does it take a ‘village’ of ethical observers to root out malfeasance and bring it to the public consciousness. Tuller has been one of those able to see what has been happening to people with ME at the hands of a cobbled and fake paradigm perpetrated against an innocent, but very sick, population.

    Both of the articles mentioned above illustrate that the wider world, wrt to health journalism, is also waking up to the fakery that the Wessely School has concocted. But in order for huge swathes of the world’s population to be properly cared-for if we discover that very many Covid survivors go on to succumb to ‘Long Covid’ (something which in my view should not be conflated with ME unless biological science can prove a solid and reproducible link), then real deal, organic research is what will save ‘us/ them’, whereas messing around with pseudo, psyche based, ‘isms’ won’t.

    And here is the warning, one which neither of those articles referenced: and that is the ability for the psyches, chameleon-like, to change their skins to suit the situation. This has already been happening in the UK in the form of creating spurious ‘conditions’ (already being adopted as ‘genuine’ within the healthcare system) which can silo difficult to treat or difficult to diagnose patients, thus doing ‘their’ master’s (as in Governments ) bidding in making healthcare cheap, because essentially there is no ‘care’ at all…just a bin, a pathway to nowhere’s-ville. At the same time lazy or underqualified doctors can keep face so that instead of saying “I don’t know, I believe you and we’re going to do everything to understand this and help you feel at least a little bit less ill”, they can turn us away without a second thought but with a cracking label! The roots of these ‘isms’ tail all the way back to the usual suspects. Although the roll-call for ‘MUS’ or ‘LTC’ or ‘FND’ might not be as familiar to some of us as those so-called ‘researchers’ we have grown detest who make up the biggest proportion of BPS ‘vomiters’ who turn our ME reality on its head where gaslighting is the order of the day, nevertheless getting to ‘know’ them, as distasteful as it sounds, might be something we need to do.

    But even if we have yet to recognise the main players the MUS / FND juggernaut is already rolling at great speed through UK ‘healthcare’ to the detriment of all of us, potentially. People with ME who can point to PACE being a crock of **** thanks to David Tuller are now at risk of being re-diagnosed as having one of the isms so that, rather like snakes and ladders, as soon as we feel close to winning the board we find ourselves right back to the beginning again, fighting another fight to be believed.

    But think!: Long Covid seems to be affecting a great number of people world-wide. Governments can be watched to ensure they properly provide appropriate care for desperately ill suffers fighting for their next breath in ICU’s around the world…but the quieter suffering that is already going on behind closed doors threatens to overwhelm both the public healthcare systems but also, of course, those friends of the BPS: the re insurance companies! They desperately require a nifty bit of new kit as a rationale to deny paying out to those with Long Covid who can no longer work, or those who want to access private healthcare when the NHS has nothing to offer. I think we can guess where most with Long Covid will end up: with the rest of us with ME in the ‘road to nowhere’s-ville bin’. The sooner the MUS / FND fakery is exposed the better for so, so many. Long Covid sufferers are watching people with ME with a curious gaze… maybe even taking cues and hearing the warning bells sound. MUS and FND can devour Long Covid as well as it can devour people with ME. The rabbit hole, to mix more metaphors, has been expanding at speed, we ignore it at our peril.

    (Note: Ladyshambles is not at all well. Cognitive function is poor. Rambling syntax is par for the course now. Apologies for typos or malapropisms if they occur. I hope the comment can be understood because this is important.)

  5. CT Avatar

    Well said, Lady Shambles. Indeed the MUS malarkey is a deadly threat, especially in the UK, and ME and/or ‘CFS’ patients will be redefined.

  6. Winston Blick Avatar
    Winston Blick

    Thank you for all that you do David. Plenty of helpful context you’ve provided here to help many of us fill in the gaps. Interesting to learn about your background as well. Will be reading more of your blogs in the days ahead.

  7. Richard Avatar

    Thanks David for all your efforts exposing errors of thought and conduct in medical publishing regarding ME CFS.

    I hope you feel these publications are a vindication of your strong ethical stance and work on this issue (which IMHO they are) and are encouraged to continue.

  8. Justin Reilly Avatar
    Justin Reilly

    Another excellent piece, Dr. Tuller. I was happy to see you call SMC “anti-science.” This term has long been used by those supporting unscientific and anti-science mainstream medicine narratives as an misdirecting aspersion on those who proffer legitimate questions. I have long called CDC, Wessely et al. anti-science re ME and other contested illnesses. Don’t recall seeing anyone else use that term and it’s long overdue.

  9. Ann Avatar

    Did anyone see the opera singer offering coaching for long covid yesterday!

  10. Paula Waugh Avatar
    Paula Waugh

    Love your blog.

  11. Michael Fitzgerald Avatar
    Michael Fitzgerald

    I need independant info on viruses.

  12. Kate Avatar

    Just bizzare to claim careful criticism of research methodology is somehow….not good? Isn’t that what editors, ethics committee and peer review should be doing? Someone has to do the job if they won’t. It’s certainly heartening to see some changes in media reporting.

  13. Maria Sue Avatar
    Maria Sue

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