Trial By Error: Reporting on ME, CFS, "medically unexplained symptoms," and related stuff
This is obviously a terrible time to be crowdfunding.
As in previous years, Berkeley had designated April as a month for campus projects to run campaigns on the university’s online crowdfunding platform—the last opportunity for the current academic year. Given the situation, the university has shortened but not cancelled the campaign. Some projects need to seek support before the next crowdfunding opportunity during the fall semester. In my case, the money I raised last year covers my salary and benefits through the fiscal/academic year ending on June 30th, so I am in the unfortunate position of having to crowdfund during a global pandemic.
As a result, I'm planning a more modest campaign now and a more robust approach during October's crowdfunding.
For the current academic/fiscal year, I have a 55% position at Berkeley, which pays me a salary of around $60,000/year. Last year's crowdfunding yielded $103,000 in donations to the Center for Global Public Health, my home department at Berkeley. After Berkeley's 7.5% gift fees, around $95,000 was left for my salary and benefits. In the US, of course, the bulk of the benefit costs are for basic health insurance. The amount I raised last April was enough to cover my salary and benefits at 55% time, with several thousand left over.
To continue at 55% for the first half of the fiscal/academic year from July through December requires $48,000--about $8,000/month to cover salary and benefits. Since I have some leftover funds, I'm setting the goal for this crowdfunding at $40,000. Then, in Berkeley's October crowdfunding, I will seek support for the second half of the fiscal/academic year. I wish I didn't have to do this at all, and especially in times as tough as these. But I want to continue pursuing this project. People who were sick before this crisis will still be sick after it's over.
Going forward, I will be looking at intersections between the pandemic and ME, such as concerns about whether some COVID-19 patients will develop an ME-like disease. I'll be keeping an eye out for new bad research from the CBT/GET ideological brigades, whether for what they call chronic fatigue syndrome or for other complex illnesses that fall into the suspect category known as "medically unexplained symptoms," or MUS. That also means continuing to look at the National Health Service's Improving Access to Psychological Therapies program.
Beyond that, I hope to look at the struggles over the nomenclature and classifications for ME and related terms in the international disease coding systems and the impact these and other factors have on the ability of patients to access benefits. In the US, I hope to keep more of an eye on goings-on at the CDC, the NIH and elsewhere than I have often had time for in the past. And I plan to keep looking at developments in countries besides the US and the UK.
Some of this reporting depends on how soon the world emerges from lockdown. And even in the best of circumstances, I won't be able to do everything I want or everything that should be done, so to a certain extent my goals should be taken as aspirational.
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. Since then I have written many thousands of more words and hundreds of blog posts about that piece of crap and other questionable trials from the same school of scientists and investigators.
Here are a few highlights from the past year:
*In July, Archives of Disease in Childhood posted a 3,000-word correction, along with an editor’s note, that acknowledged the unacceptable methodological and ethical lapses I had documented in the Lightning Process trial. Instead of retracting this bogus study, the journal allowed it to stand.
*More than 70 scientists, clinicians and other experts signed an open letter I organized and sent to Dr Fiona Godlee, editorial director of BMJ. The letter expressed dismay at the decision not to retract the Lightning Process study. I wrote an article about the issue for STAT, the highly regarded medical and science site.
*Professor Esther Crawley of Bristol University was ordered to make corrections to an entire series of published papers because of issues I brought to the attention of the UK Health Research Authority. (I believe this remedy is completely inadequate to the gravity of the documented methodological and ethical missteps.)
*Two major journals--BMJ Open and the British Journal of General Practice--were forced to correct factual misstatements about the costs of MUS to the National Health Service after I persisted in alerting them to the errors.
*I exposed how researchers from King's College London are now overhyping the benefits of a web-based CBT program for irritable bowel syndrome. KCL has licensed this program to a San Francisco-based start-up, which has made false claims about its effectiveness. The pandemic intervened as I was pursing this investigation.
*I presented talks on the egregious Lightning Process study last fall in Oxford and Newry, Northern Ireland, and a virtual Zoom talk about MUS with the Sheffield group last month. The videos of these talks have been viewed thousands of times.
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/