Trial By Error: Reporting on ME/CFS and Related Controversies

So it’s been a year since the last crowdfunding campaign for Trial By Error--my investigative reporting and public health project. While Trial By Error began 3+ years ago as an in-depth look at the PACE trial, it has expanded to include other research from the GET/CBT ideological brigades and some of the controversies around the illness or cluster of illnesses known variously as ME, CFS, ME/CFS, and CFS/ME.

In the last three years, I have seen patients’ suffering and their courage. I am in awe of their analytical skills and scientific smarts. This project has been and continues to be such a moving and rewarding experience for me. I had no idea it would last this long, but my work seems to be helping to push events forward. That’s why I am seeking another round of support through Berkeley’s crowdfunding platform. The funds I raise through April 30th will go toward covering my position for the fiscal year from July 1, 2019 to June 30, 2020.

As many know, I initially worked on this project for more than two years on my own, without funding from anyone. But after a grant supporting my half-time position at Berkeley ended two years ago, I decided to crowdfund so I could continue working on Trial By Error. The money goes directly to the university, not to me. Pursuing this project is now my primary responsibility as a senior fellow in public health and journalism at Berkeley’s Center for Global Public Health.

Through my crowdfunding campaign last April, Berkeley received $87,500 to cover my position for the fiscal year from July 1, 2018 to June 30, 2019. Here’s an accounting (in rounded numbers). My half-time salary is $50,000. Another $20,000 goes toward employment benefits--which in the U.S. is mostly health insurance. Berkeley takes 7.5 % in crowdfunding and gift fees--in this case $6500. A small amount was used to cover a shortfall in my first year’s crowdfunding. I will also get $5,000 in reimbursement for some of my project-related travel expenses. Anything left over will be bumped forward into the next fiscal year.

For this year’s crowdfunding, my goal is $95,000. I spend significantly more than half my work-time on Trial By Error. Raising $95,000 would allow Berkeley to increase my position from 50% to 60% time for the 2019-2020 fiscal year. I will definitely continue this project for another year even if I don’t make that target, although in that case I might decide to crowdfund again sometime next fall.

If you’re reading this, you’re likely already familiar with my work. But by way of background, my initial 15,000-word investigation of the PACE trial was published in October, 2015, on Virology Blog--a science site hosted by Professor Vincent Racaniello, a microbiologist at Columbia University. Since then, the Trial By Error series has focused international attention on the study’s methodological and ethical lapses and on the similar failings of related research. I have now written 150+ posts on Virology Blog as well as articles for The New York Times and other publications. My investigation has been covered in Science, The Guardian, Slate, The Wall Street Journal, STAT, BMJ, and elsewhere.

I have been subject to attacks. Most recently, in March, Reuters published a biased "investigation" that slammed patients for their purportedly belligerent behavior and me for my willingness to engage in forthright criticism of bad research. In the past few years, I have been accused of libel, defamation, causing reputational damage with inaccurate and misinformed reporting, engaging in behavior warranting police intervention, unleashing social media abuse, and so on. The vice-chancellor at Bristol University has complained multiple times to Berkeley about me. These people obviously would like me to stop what I'm doing.

But I've kept going, with Berkeley's continued support. Based on my investigation, I have organized a series of open letters to The Lancet, Psychological Medicine, and other journals, all posted on Virology Blog. With their high-profile signatories, the letters have received widespread attention. Last August’s open letter to The Lancet, which referenced the PACE trial’s “unacceptable methodological lapses,” was signed by more than 100 scientists, physicians and other experts, 10 members of Parliament, and many dozens of patient and advocacy organizations. The Times (UK) and BMJ both ran articles about it.

In the last year, I have also kept up with the Cochrane situation. I met last summer with Cochrane editors and pressed them to address the problems with the 2014 review of exercise therapies. In addition to posting several analyses of developments, last October I organized a letter of support for Cochrane’s decision to temporarily withdraw that review. The letter was signed by more than 40 experts. (Unfortunately, Cochrane ultimately did not implement that decision.)

I have sustained my criticism of research conducted by Professor Esther Crawley of Bristol University. After reviewing my expressions of concern, the National Health Service's ethics oversight arm requested that Bristol University conduct an independent investigation of some of these studies. That investigation is ongoing. How independent it will ultimately be and whether it will examine the issues honestly remains to be seen, but the fact of the investigation is itself a modest victory, given the incredible resistance to scientific accountability that has marked this saga.

In U.S. news, I took on Danish psychiatrist Per Fink’s appearance at Columbia University last fall--an invitation to speak that appalled not just patients but also leading scientists in the ME/CFS research field. I also wrote about the Mayo Clinic's stubborn refusal to acknowledge changes in the international and national approach to the illness. I recently broke the news about Kaiser Permanente’s decision to change how it handles ME/CFS. I hope this year to follow up with other major US medical institutions and track their progress. And I plan to keep trying to hold the US Centers for Disease Control and Prevention to account; as I have noted repeatedly, the agency refuses to acknowledge that it dropped the PACE/GET/CBT paradigm because the science cannot be defended. Maintaining pressure on the CDC and other US agencies on issues related to this illness is essential.

I have also started looking into the "medically unexplained symptoms" (MUS) model being promoted by the biopsychosocial cabal. This construct is linked to the troubling effort in the UK to shunt ME/CFS patients and others with so-called MUS into mental health care through the Improving Access to Psychological Therapies program. I will deepen my investigation into these issues in the upcoming year. I also hope to examine the struggles over the ICD (International Classification of Diseases) codes used for the illness and the diagnostic controversies that continue to roil the field. In addition to keeping up with events in the UK and US, I hope to be able to track developments in the Netherlands, Australia, Scandinavia, Germany, and elsewhere.

I have traveled a lot since last summer and plan to again over the next year. I spent most of September and October in England, with side trips to the Netherlands and Northern Ireland. In November I took a five-day trip to Norway, and early this year I visited England again, with a stay in Finland as well. I gave public talks and/or recorded video interviews in Amsterdam, Newry in Northern Ireland, and Sheffield in England, as well as in Oslo, Helsinki and Boston. Collectively, these clips have been viewed online many thousands of times. In London and Oslo, I met with members of parliament, health officials and others to lobby them on the various issues.

I am currently planning a trip to New Zealand for late summer/early fall. I will also spend more time in Europe--again to cover issues in the UK but hopefully also to visit other countries grappling with related concerns, like Germany. And if I don’t manage to get to Canada before this fiscal year ends on June 30, I will definitely make up for it after that.

I know I won't get to every subject I'd like to. I’m sure things I haven’t anticipated will come up, as they always do. One way I hope to deal with all this is by posting updates or short comments on an upcoming Trial By Error/News page. That way I can keep up with events but not clog up the main Virology Blog site with items that have more specialized appeal. (I'm still trying to figure this out.)

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One final note: Berkeley takes a 5% share as the university's standard fee for gifts, plus 2.5% as a crowdfunding/credit card fee. Therefore, adding 7.5% to your donation will ensure that the full amount you intend is going toward the project itself. The donation is tax-deductible (for US taxpayers at least).

Thanks so much for your support. I really, really appreciate it. This whole situation is just unbelievable. I’d like to be able to see it through.

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For those who want to review my work, here are some links:

Virology Blog's 15,000-word expose of PACE: http://www.virology.ws/2015/10/21/trial-by-error-i/

All Virology Blog posts on ME/CFS: http://www.virology.ws/mecfs/

My New York Times opinion piece (with Julie Rehmeyer): https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html