VIROLOGY BLOG'S TRIAL BY ERROR: Reporting on ME/CFS

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VIROLOGY BLOG'S TRIAL BY ERROR: Reporting on ME/CFS

So it’s been almost a year since my last crowdfunding campaign for my ME/CFS and PACE-busting reporting project. At that time, I hadn’t necessarily planned to extend it beyond my one-year commitment. There have been significant positive developments in the last twelve months, and those seem likely to continue. However, it has become clear to me that at this point it is critical to maintain the momentum, so I have no intention of pulling the plug on my efforts. That’s why I am once again coming to you for support.

I would really prefer not to have to do this. As many of you know, I worked on this project for more than two years as a self-funded public service. During that phase, I took four trips to Europe (three to the U.K. and one to the Netherlands). I only turned to crowdfunding last spring when funding for my previous position at Berkeley dried up because of the University of California's distressed financial state. 

My target this year is $75,000. That's a lot of money, so let me be clear: I will continue this project for another year whether or not I make that goal. The amount needed to cover my half-time salary and benefits at Berkeley is about $72,000, which is what I raised during last year's crowdfunding effort. (Last year, I underestimated the costs in setting my initial goal.) Of that $72,000, $47,000 is for salary and $25,000 for benefits, which in the U.S. is mainly the cost of health insurance. The remaining $3000 would go toward travel costs. This time, I am working with Berkeley’s own crowdfunding platform, which is made available a couple of times a year for campus projects. That means the funds will go directly to my home base at the university's School of Public Health, the Center for Global Public Health

If I overshoot my goal—and I hope I do, as I did last year—the additional funds will be used to increase my compensated time beyond 50% and/or to cover more travel costs. I would be delighted to be able to spend more than half my time on this project.

Let’s review what’s happened since last summer. In late June or early July, the U.S. Centers for Disease Control abandoned its support for the flawed treatments recommendations promoted by the CBT/GET ideological brigades. In the U.K., the National Institute for Health and Care Excellence reversed its initial decision to reaffirm its flawed 2007 guidelines and announced that it would conduct a full overhaul of the recommendations. This is a hopeful sign, although pressure on NICE must be sustained to ensure that the agency fulfills its obligations. Most recently, on March 19th, a Dutch panel tasked with reviewing treatment guidelines reported in March that "the committee sees no reason" for GET to be recommended in the Netherlands. Pressure must be maintained there as well to make sure the government actually adopts the committee's recommendations.

In other news, Carol Monaghan, a member of Parliament from Scotland, held a half-hour debate on PACE in which she called the trial "one of the biggest medical scandals of the 21st century." This debate and MP Monaghan's unequivocal statement both represent significant milestones; it is hard to imagine that happening two or three years ago. And Professor Esther Crawley of the University of Bristol has stepped down from her role as a member of executive board of the CFS/ME Research Collaborative—a very welcome development.

But there is much more work to be done to ensure that the CBT/GET paradigm meets the oblivion it deserves. PACE has been effectively debunked, but its influence continues. Patients in the U.S., U.K. and elsewhere continue to find doctors who understand the illness and know how to help patients manage it. 

In the past year, I have also contributed to the peer-reviewed literature. I wrote a commentary for the groundbreaking issue of Journal of Health Psychology devoted to "PACE-gate." And I am beyond thrilled to be a co-author on the reanalysis of the PACE results that BMC Psychology published on March 22nd. That reanalysis documents once more that the reported PACE findings arose from rampant post-hoc changes to the methods outlined in their own protocol. The article triggered this fantastic headline in The Times: "Findings of £5m ME chronic fatigue study ‘worthless.’" 

(Just to be clear: I am one of many, many people who have played major roles in all these efforts. I could not do what I am doing without the invaluable contributions, insights and support of amazing patients and advocates, not to mention the scientists who are conducting the kind of research that will hopefully result in finding causes and effective treatments. We are all working toward the same goal.)

This year hasn't always been easy. As many of you know, my efforts to address Professor Crawley's unethical methodological choices in high-profile and influential studies led her to make the false and unsupported claim that I was engaged in writing "libelous blogs"--a charge she highlighted during her inaugural lecture at the University of Bristol. Because of my work, Bristol took the extraordinary step last year of complaining to Berkeley in an effort to shut me up. That hasn't worked. I'm still here--and with your help I plan to continue what I set out to do.

I haven’t accomplished everything I wanted to since last summer. I have yet to post at length about the deficiencies of the Cochrane reviews of CBT and GET. I have not yet written about the 1950s Royal Free Hospital outbreak in London, although I have interviewed two patients from that seminal event. I haven’t focused on the problems people in many countries confront in accessing disability and social welfare benefits because of their illness. I haven't spent much time examining some of the legitimate research taking place in the U.S., the U.K., Australia and elsewhere. I hope to start addressing all these issues later this spring and during my next year of reporting. 

I also plan to take a look at the "medically unexplained symptoms" (MUS) model that is taking hold in the psychiatric literature. Key members of the CBT/GET ideological brigades are among those pushing hardest for the adoption of this misguided and unscientific approach. The underlying assumption appears to be that fibromyalgia, irritable bowel syndrome, and a host of other illnesses, including ME, can be grouped together as variations of what are called “functional” or “somatic” disorders—which means, essentially, that they are regarded as psychiatric issues, not organic diseases. The standard treatments? Rehabilitative therapies like CBT and GET.

Another goal is to increase my efforts to write articles for other publications, whether mainstream outlets or those focused on health and science. I haven't pursued that strategy aggressively until now because of the difficulty of convincing editors of the seriousness of the disease and the importance of accurate and thorough reporting. But press coverage has improved significantly in the last year in both the U.K. and the U.S., suggesting that editors are generally more receptive to the issue. I plan to take advantage of that shift in attitudes so that more people outside the field learn about the anti-scientific "research" and the harmful treatments that have been inflicted on patients. 

I plan to travel again for the project over the next year. I spent a month in the U.K. late last year. I arrived in mid-March in Australia, where I will be until late April. In the next round, I again plan to spend time in Europe--certainly to the U.K. but hopefully also to countries where the CBT/GET paradigm remains strong, such as Germany. I would also like to return to Australia and include New Zealand next time, if it seems my presence could be helpful. And Canada is definitely on my list of countries I need to visit.

One final note: Crowdfunding on any platform is not free. Berkeley takes a 5% share as the university's standard fee for processing gifts, plus 2.5% as a crowdfunding fee. Therefore, adding 7.5% to your donation will help to maximize the effectiveness of this campaign. (Last year, Crowdrise took 7.5% as the crowdfunding fee, and Berkeley took its 5% gift fee, so the fees this year will be significantly reduced.) 

Thanks so much for your support. I really, really appreciate it. We are making progress and are reaching the tipping point in the debate. At this moment in time, it is critical to press on at full strength.

 

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/

University of Bristol's complaint to Berkeley: http://www.virology.ws/2017/12/23/trial-by-error-bristols-complaint-to-berkeley/

My six-month crowdfunding review: http://www.virology.ws/2018/01/15/trial-by-error-my-six-month-review/

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

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