Trial By Error: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff
As in previous years, the University of California, Berkeley, had designated April as a month for campus projects to seek donations through the online crowdfunding platform. Given the situation, the university shortened the campaign and urged all the projects to crowdfund again in October. That's why I am now seeking funds to support my academic position at Berkeley's Center for Global Public Health from January through June.
I hope to raise $60,000 in tax-deductible donations to Berkeley to cover the Center for Global Health's six-month costs for my position: salary ($40,000), benefits ($15,000, mostly for health insurance), and Berkeley's 7.5 % gift fee ($4,500.)
A Short Recap
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, and many other countries.
Since my April crowdfunding, I have written more than 60 posts on Virology Blog. In addition, Northwestern University law professor Steve Lubet and I co-authored a commentary on ME/CFS and medically unexplained symptoms for Medical Humanities, a BMJ journal. I wrote or co-wrote articles on possible links between ME and symptoms being experienced by Covid-19 patients for STAT, BerkeleyWellness.com, and the health policy journal Health Affairs.
Given the speed of events, it is hard to predict exactly what will be coming up in the next six months. in the UK, the National Institute for Health and Care Excellence is expected to release soon its draft revision of the ME/CFS guidelines, so I definitely plan to address the developments. Now that we're past the sixth month of the pandemic, more and more Covid-19 patients are likely to be getting diagnosed with ME, CFS or ME/CFS, so it will be important to keep an eye on these definitional challenges. Certainly I will try to smack down more bad research on psychobehavioral interventions for ME/CFS and other chronic illnesses, including so-called "medically unexplained symptoms," although keeping up with the flow is impossible.
Some Recent Highlights
Here are a few highlights of my work since Berkeley's last crowdfunding effort six months ago:
*The GET/CBT enthusiasts, particularly in the UK, the Netherlands, and Scandinavia, are promoting their interventions as purportedly evidence-based treatments as for post-Covid fatigue. I have written about misinformation disseminated through media online video interviews, NHS pamphlets, and the like. I also wrote about a proposed Dutch trial investigating CBT as a way to prevent chronic fatigue after Covid-19.
*I have continued to press King's College London and a San Francisco start-up, Mahana Pharmaceuticals, about the fraudulent promotion of an online CBT program for irritable bowel syndrome. Proponents claim it successfully treats IBS when the research revealed that it had no clinically significant benefits in symptom improvement.
*I reported on the Merck Manual's continuing promotion of CBT/GET and the Mayo Clinic's modest efforts to update the language on its website.
*I analyzed a recent paper published by Professor Sir Simon Wessely and Professor Trudie Chalder in the Journal of the Royal Society of London. This review of clinical outcomes from almost 1000 patients who received CBT is full of questionable claims. Going forward, I certainly plan to alert the journal to the concerns.
*BMJ recently published a study of CBT plus music therapy as a treatment for chronic fatigue in adolescents after acute EBV (aka mononucleosis and glandular fever). The study violated multiple core scientific principles and the journal's review process broke down. Along with other experts, I have urged the journal to retract the paper and have followed up with multiple public letters.
*A Lancet journal published a deceptive study of CBT as a treatment for so-called 'psychogenic non-epileptic seizures." The intervention failed to reduce the number of seizures patients experienced, but King's College London and the investigators called it a success anyway. I wrote a number of posts about this mess.
*In June, a major Norwegian newspaper, Dagbladet, ran a series of articles related to a proposed Lightning Process trial. In one article, the journalist quoted my work but referred to me as a blogger without mentioning my academic position. I sent a letter noting the problem and explaining why I thought the Lightning Process was nonsense. The letter ran as an "opinion" column in the newspaper.
*A Canadian-based program called the Dynamic Neural Retraining System, which makes similar claims as the Lightning Process, is being promoted to ME/CFS patients based on a talk last fall, which has been posted. I recently wrote about the speaker's unscientific arguments.
*I have kept up a fairly consistent presence on Facebook and Twitter, posting interesting studies and responding to bad ones.
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/