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 ($45,000), benefits ($17,000, 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.
Last October, after a years-long struggle, the UK’s National Institute for Health and Care Excellence released its new ME/CFS guidelines. NICE found that the evidence for the psychotherapy and graded exercise approach was all of "very low" or merely "low" quallty--as patients have known all along and as I have relentlessly asserted and documented in my work. 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 struggle continues! Publishing guidelines is one thing; implementing them effectively is another. Opponents have mounted fierce protests against the new guidelines continue to promote the same unproven therapies they always have. Now they are applying the same template to long Covid and post-viral illness in general. If successful, this effort will end up undermining the progress that has been in the ME field.
Because of long Covid's range of reported symptoms, many people with the illness have medical issues unrelated to ME and will not receive an ME diagnosis. But a great many will. So examining long Covid in the context of these scientific debates over the source and cause of the devastating symptoms is critical to sustain the momentum of change in the ME domain and affirming the advances in the ME field that have been made to date.
In fact, 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 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. Of courses, this parallels the experiences of doctors previously diagnosed with ME. 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. If these treatments are shown to be "successful" for long Covid, they will again become seen as appropriate for ME patients, despite what NICE has said.
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.
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, especially at this time of global trauma.
This is a link to my original Trial By Error series: https://www.virology.ws/2015/10/21/trial-by-error-i/
This is a link to all the posts I have written on Virology Blog: http://www.virology.ws/mecfs/