#MEAction sat down with David Tuller recently for a wide-ranging discussion about the crowdfunding effort to help him continue his PACE investigations, the devastating stories he has heard from patients around the world, the poor media coverage of the PACE Trial flaws, and the ideal end result of all of the work he is doing.
David Tuller has been hard at work investigating the very many flaws of the PACE trial (which he has pointedly called “a piece of crap”) for more than three years. We at #MEAction are grateful for the work he has done to fight for good science and for people with ME. We know too many people who have gone downhill (including becoming housebound and sometimes bedbound) due to following PACE-based recommendations to exercise. When we found out that David needed to raise money to continue his effort “to expose the methodological and ethical problems in PACE,” we knew we’d do anything we could to help plan and publicize his fundraising campaign.
David’s first in-depth report on the PACE trial, a 15,000-word series published over three days in 2015 on the science site Virology Blog, methodically dismantled many of the study’s absurd premises and assumptions. As soon as those of us working on #MEAction read the first article in the series, we felt it had the potential to finally break through the seemingly impenetrable wall protecting the PACE trial from the valid criticism that knowledgeable patient-researchers had been making for years. The #MEAction petition with more than 12,000 signers asking for retractions of the misleading claims made by the PACE team got its inspiration from the series, and was eventually delivered to the Lancet. We worked with knowledgeable volunteers to summarize the articles and to gather signatures from dozens of researchers and clinicians on Virology Blog’s open letter to the Lancet last year demanding an independent investigation of the trial.
David has continued to investigate different aspects of the PACE debacle, as well as related studies like FINE and FITNET, largely as an unpaid “public service” project. David recently learned that his contract with UC Berkeley is not being renewed due to budget cuts. This means he cannot continue to rely on his earnings from his academic position to cover his bills while he continues to dig into the PACE trial and fight for a much-needed retraction of the papers based on the trial. To help support his work, the School of Public Health at UC Berkeley has agreed to create a new position “focused on investigating the PACE trial and other issues related to ME/CFS,” financed by his crowdfunding campaign. The Center for Scientific Integrity, a non-profit that publishes the site Retraction Watch, has agreed to serve as fiscal sponsor for this effort, which means all donations will be tax deductible. The campaign’s goal is to raise $60,000 to fund the position.
What led to you looking into PACE and what has kept you going?
For the last couple of years, I’ve been trying to bust the PACE trial and get these awful papers retracted. I took on this battle because I was horrified by the trial’s egregious flaws and I knew it needed to be smacked down to prevent further harm to patients. The effort to get rid of the PACE paradigm has now become an international movement. I am committed to seeing this effort through to the end, but at this point I really need some help to be able to do that.
The initial three-part series that you wrote had a lot of detail in it. How long did it take you to research and write the whole series?
David tears up Lancet paper on PACE at IiME
Well, I went to England to really start my research in the summer of 2014. I wrote multiple drafts between then and publication. I thought that would be it, like a regular journalism project which you finish and then leave behind for the next project, but it kept going on and on because I saw there was more and more to write. And I gave up thinking about making any money from it, because no one was interested in paying for and it was too complicated to explain to any editors — or they didn’t want to understand. I thought, ‘Why am I treating this differently than a regular journalism project?’ It’s not like I’m a fan of doing work for free! Good journalism is very time-intensive. But then at some point I realized that this wasn’t my journalism project anymore. It had become my public health project.
How do you mean that?
I guess I mean that I’m thinking of it as a long-term problem that needs my continued attention. As a journalist, it wouldn’t be my role to force action or rally scientists and academics to the cause — it would just be my role to expose what’s wrong and let others deal with the aftermath. But I’ve approached this differently. I’ve organized open letters to The Lancet, Psychological Medicine, PLoS One, and the head of Queen Mary University of London. I’m using my journalism skills but I’m also trying to be strategic about using the credibility I can leverage because of the four letters I am allowed to put after my name (DrPH), my Berkeley affiliation, and my extensive contacts in the public health and medical fields.
How much time have you spent on this project, would you say?
Oh, my. It’s hard to calculate. But with all the follow-ups and open letters and so on, I would say it’s been pretty much like a half-time job for three years. That would be my best guess. And my current trip to London, where I am now, is my fifth for this project. I also took a separate trip to Amsterdam, to give a talk and do some interviews. So I’ve invested a lot into doing this right. The only thing I’ve earned is $5000 for my piece in Undark last fall about the impact on rehabilitative therapies like GET in the U.S., $300 from the Berkeley alumni magazine for a piece I wrote about my effort, and $125, I think, for my share of the recent NYT editorial I wrote with Julie Rehmeyer, whose terrific book about her experiences with ME/CFS was just published.
I absolutely don’t begrudge the time or anything, or the fact that I’ve done it for free. I am not complaining in any way. It was important to do, and I chose to do it because I knew I could, and I had the bandwidth to do it in the way I wanted. So it’s been an amazing project to work on. If my job situation hadn’t changed, I would have just continued on doing it the same way. Crowdfunding just hadn’t occurred to me until I needed to strategize this spring about what to do to keep it going. I was uncomfortable asking the community for money, and I still am, because I know so many patients live on next to nothing. But others encouraged me in the effort and convinced me that it was an ok thing to do.
What do you think so far about the response to the fundraiser?
I am really, really gratified by it. To have passed the halfway mark on my goal of $60,000 after just nine or ten days is pretty cool! I’m especially humbled and touched by all the $10 donations. In the default template on the Crowdrise site, the lowest amount indicated for a donation was $25. You could donate $10 but you would have had to write it in. That didn’t seem right for this situation. I knew a lot of patients would really want to participate and help me out but that more than a few would find $25 to be a stretch and would feel ashamed or uncomfortable having to go out of their way to write in a lesser amount. I didn’t want anyone to feel shamed in that way, so I asked Crowdrise to change the template and include the $10 option in. I’m very glad I did. I think the number of donations, as well as the amount raised, indicates the level of support out there for what I’m doing.
You must often hear from ME/CFS patients who have been hurt by the recommendations made in the PACE trial and who are grateful for all of the work you have done. Can you share any story that has been particularly moving and motivating to you?
I would never have known before I started this how many lives have been ruined by this illness. It’s hard to pick out one story. They all break my heart. That’s why I’ve kept doing this. Each person’s story is worse than the last one. I don’t know how so many people can be so sick and just left to fend for themselves. And then treated as if they’re crazy, hysterical or delusional. I think maybe the worst stories are the ones from parents not only having to figure out what the fuck is going on with their kids but then being threatened by social services because they refuse to allow the kids to be exercised. It’s awful. And then the cases where two or even three kids in a family are sick. Just devastating. I cannot imagine a worse hell than being a parent in that situation. I don’t know how they stand it or how they manage to survive that kind of torment.
What are some other avenues of investigation into PACE and related studies that you are interested in exploring over the next year?
There’s so much to look at! Some ideas I don’t want to talk about at this point–I want to do some quiet research in some areas because I don’t know what I think yet. But certainly conflicts of interests of the researchers, for example — I’d like to look at not just their overall relationships with insurers but at how they have intervened specifically in cases, reviewing medical histories and suggesting that claimants must have rehabilitative therapies before they can receive any benefits — even though there isn’t any good evidence that are effective or get people back to work. I want to keep slamming the CDC for not doing what they are supposed to do as the country’s lead public health agency. The CDC was pathetic from the start, and continues to be.
I’d like to look back more at the Royal Free Hospital outbreak in the 1950s–I’ve just interviewed an 87-year-old retired GP who got sick in that epidemic. She remembers that she was patient #234. She got all better because at the first sign of illness, they made her rest for three months. They had already seen that those who returned to work too soon relapsed hard. So they knew the best treatment then, and now we’ve had to learn that lesson all over again, but only after the psychiatrists have spent decades arguing against it, to the detriment of patients.
I’d like to look more at the peer-review process — how the hell did these things pass peer review? I’d like to see what’s going on in Australia and other places under the thumb of the CBT/GET cult. I also need to keep responding to the new bullshit studies that these people keep publishing. And new things of course will come up. When Esther Crawley accused me of libel, that led to a whole series of posts. But before that happened, I couldn’t have told you that I would write thousands of words defending myself against ridiculous libel accusations.
That did lead to several great blog posts explaining how absurd her accusations were. Do you have any thoughts on why journalists in the UK have been so resistant to taking a critical look at PACE?
This has been a mystery to me. I can understand why no one bothered to bust them at the beginning. It’s very complicated, these are prominent researchers, and people are constrained by what their editors want. The Science Media Centre has also maintained an iron grip, it seems, over how this study and this issue should be framed. It is shocking to me that the series of stories starting in 2011 about harassment against the researchers, for example, included very serious accusations but no actual evidence from anyone but researchers that such incidents had occurred. It’s hard to believe that stories like that were approved by editors, and that no one ask the reporters, Where is the evidence? Is this all just based on the words of those who claim to have been harassed? That’s not what I consider responsible or accurate reporting.
When work is vetted and approved by top scientists and medical experts up and down the chain, and has been established as the basis for developing the standard-of-care throughout the National Health Service, it is very hard for journalists to crack that open. They have bosses they have to answer to. These people can complain to their bosses. It’s different for me. I’m outside this system. I haven’t done this work as anyone’s employee, so no one can fire me. I haven’t done this for money, so my pay can’t be withheld. I’m not looking for UK grants, so I don’t have to worry that these awful people might peer-review me. I’m not a member of the UK academic and medical establishment, so I don’t have to schmooze with Simon Wessely or Esther Crawley at social events and make small talk over tea and biscuits. I am not beholden to anyone and don’t have any reason to give them the respect and deference they apparently seem to expect from everyone no matter how awful their behavior and their science.
And let’s not exempt U.S. media from blame. In a way, American journalists have less of an excuse for not taking this. They’re not under the thumb of the U.K. medical establishment and would certainly have had more freedom to pursue this, had they wanted to. Besides me and a few others, like Miriam Tucker, who has done some terrific reporting on the issue, no one has been interested in this. Julie Rehmeyer has, of course, but she’s also a patient. And editors at U.S. publications have not seen it as anything worthy of attention. After a while I stopped pitching stories to anyone, because I could practically hear their eye-rolling over the phone whenever I mentioned chronic fatigue syndrome.
That’s a good point– the US media should not be absolved of their responsibility. What would the ideal end result of this project be for you?
There’s an ideal end of my project, and an ideal end for the whole situation. The ideal end of my project would be retraction of the various PACE papers and the discrediting of the work of all those involved in promoting CBT and GET for this illness — that would include people like Esther Crawley, the Dutch arm of the CBT/GET cult, and all the others. The ideal end of my project would also include some sanctions on researchers who have committed what I consider to be research misconduct, according to any standard definition. It would include as well the removal of GET and CBT from the CDC’s website, and a major announcement from the agency acknowledging that they’ve gotten it wrong all these years and apologizing for having ever endorsed or referenced the PACE trial. The CDC has a lot to answer for here — including inflicting the name CFS on the world, with all the harm that has come with that. And they have done very little, as far as I can see, to mitigate the tremendous damage they have done.
The ideal end of the situation, of course, would be much broader: more money spent on research, development of effective treatments or even a cure, a sea-change in society’s attitude toward patients, and so on. Much of that is beyond the scope of what I’m doing, but I think these things all work in tandem. The better the emerging research, the easier it is to document that PACE is insane. The more we can document that PACE is insane, the easier it is to shake loose money for research. So I feel I’m very much in league with many of those doing the actual medical research. I hear from them, and they are on my side and are urging me to continue because I don’t mind yelling “Fuck you!” and tearing studies up in public. That’s not how academics usually behave. But that doesn’t mean they are not also shocked and outraged by what’s gone on here.
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