Trial By Error: Reporting on ME, CFS, ME/CFS, "Medically Unexplained Symptoms," and now Long Covid
Dr David Tuller
https://crowdfund.berkeley.edu/project/31347
As in previous years, April is crowdfunding month at the University of California, Berkeley, and I am once again seeking funds to continue my work on ME (including iterations), “medically unexplained symptoms,” and now long Covid. I hope to raise $67,000 in tax-deductible donations to Berkeley to cover the Center for Global Health's costs for my position from July through December of this year. Given increases in costs for the academic year starting July 1st, I have raised the goal from $64,000 in last fall’s campaign. This breaks down to salary ($44,000), benefits ($16,000, mostly for health insurance), and Berkeley's 7.5 % gift fee (around $5,000)
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A Short Recap
Many or most of you reading this will likely be familiar with some of my work, but here's a short recap. I launched the "Trial By Error" series with a 15,000-word investigation of the disastrous PACE trial, published on Virology Blog in October, 2015. By now, I have written hundreds of blog posts about that piece of crap and other aspects of these issues not only in the UK but in the US, the Netherlands, Norway, Finland and many other countries.
Before the pandemic, I had figured I’d end this project after the UK’s National Institute for Health and Care Excellence released its new ME/CFS guidelines. That finally happened last October. The new guidelines aren't perfect but nonetheless represent an enormous improvement and a welcome reversal of the discredited psycho-behavioral approach championed by the so-called “experts” in the field. But the advent of long Covid seems to have interfered with my plans!
To anyone involved in the ME and ME/CFS world, it was clear that the coronavirus pandemic was likely to trigger a wave of post-viral illness—and that these patients would likely be treated with similar dismissiveness as ME/CFS patients have for decades. And that is exactly what has happened. I wrote about this issue in a piece published last month by Codastory.com, which addressed how even physicians with long Covid are being advised by their own doctors and colleagues that their symptoms are related to pandemic-related stress, anxiety and depression—and not to any ongoing physiological dysfunction. I recently posted about a high-profile study of an exercise-based rehabilitation treatment for long Covid that does not include any mention of post-exertional malaise in its protocol, participant information sheet and consent form. This is not acceptable.
Given the speed of events, it is hard to predict exactly what will be coming up in the next six months. I will certainly continue to smack down more bad research on psychobehavioral interventions for ME/CFS, “MUS,” and long Covid. My output for this project is a combination of posting on Virology Blog, writing articles for various news organizations, and working on academic papers for peer review. I also expect to be posting more video interviews with people involved in the field.
Dr David Tuller
https://crowdfund.berkeley.edu/project/31347
As in previous years, April is crowdfunding month at the University of California, Berkeley, and I am once again seeking funds to continue my work on ME (including iterations), “medically unexplained symptoms,” and now long Covid. I hope to raise $67,000 in tax-deductible donations to Berkeley to cover the Center for Global Health's costs for my position from July through December of this year. Given increases in costs for the academic year starting July 1st, I have raised the goal from $64,000 in last fall’s campaign. This breaks down to salary ($44,000), benefits ($16,000, mostly for health insurance), and Berkeley's 7.5 % gift fee (around $5,000)
**********
A Short Recap
Many or most of you reading this will likely be familiar with some of my work, but here's a short recap. I launched the "Trial By Error" series with a 15,000-word investigation of the disastrous PACE trial, published on Virology Blog in October, 2015. By now, I have written hundreds of blog posts about that piece of crap and other aspects of these issues not only in the UK but in the US, the Netherlands, Norway, Finland and many other countries.
Before the pandemic, I had figured I’d end this project after the UK’s National Institute for Health and Care Excellence released its new ME/CFS guidelines. That finally happened last October. The new guidelines aren't perfect but nonetheless represent an enormous improvement and a welcome reversal of the discredited psycho-behavioral approach championed by the so-called “experts” in the field. But the advent of long Covid seems to have interfered with my plans!
To anyone involved in the ME and ME/CFS world, it was clear that the coronavirus pandemic was likely to trigger a wave of post-viral illness—and that these patients would likely be treated with similar dismissiveness as ME/CFS patients have for decades. And that is exactly what has happened. I wrote about this issue in a piece published last month by Codastory.com, which addressed how even physicians with long Covid are being advised by their own doctors and colleagues that their symptoms are related to pandemic-related stress, anxiety and depression—and not to any ongoing physiological dysfunction. I recently posted about a high-profile study of an exercise-based rehabilitation treatment for long Covid that does not include any mention of post-exertional malaise in its protocol, participant information sheet and consent form. This is not acceptable.
Given the speed of events, it is hard to predict exactly what will be coming up in the next six months. I will certainly continue to smack down more bad research on psychobehavioral interventions for ME/CFS, “MUS,” and long Covid. My output for this project is a combination of posting on Virology Blog, writing articles for various news organizations, and working on academic papers for peer review. I also expect to be posting more video interviews with people involved in the field.
