Crowdfunding: Trial By Error [David Tuller]: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff, Fall 2020

via e-mail:

Project Update: Trial By Error: Reporting on ME/CFS and Related Controversies

With nine days to go, the crowdfunding campaign has reached 62% of the goal, with more than 400 donors. That's pretty good given what's going on out there right now! Many of you have already donated and as always I'm very touched by the support.

This is the link to the current crowdfunding site: https://crowdfund.berkeley.edu/project/22602

The funding will allow me to continue with the project for the first half of next year as a senior fellow in public health and journalism at Berkeley's Center for Global Public Health. Here are recent developments:
Click to expand...

*BMJ announced this week that it was retracting a CBT-and-music-therapy study that I had posted about multiple times. Retraction Watch cited my work in its story about the retraction. Because the retraction also functioned as a whitewash of the investigators' missteps, I will follow up with an analysis next week, followed by another letter of concern to the journal.

*I posted twice this week on issues arising from the emerging overlaps between ME (CFS, ME/CFS, etc) and the illness now being called '"long-covid."

*It is five years this week since I published the first edition of Trial By Error, a 15,000-word investigation of the PACE trial. I'am writing a post about where things are now and what it means that I'm still doing this after producing what I thought at the time was a one-off.

*And other stuff...

Please use the above link rather than clicking on the "Read Update" button included in this message. That button will take you to last year's completed campaign--not to the page for donating to this month's.

Thanks much!--David
Click to expand...
 
via e-mail:

Trial By Error: Reporting on ME/CFS and Related Controversies Project Update:
This Week is the 5th Anniversary of October 2015 publication of my 15,000-word PACE investigation!

I'm really pleased to have reached two-thirds of my goal for the October crowdfunding, thanks to 469 generous donors, including many of you--thanks! With one week left in the campaign, here's the link: https://crowdfund.berkeley.edu/project/22602
Click to expand...

This week is the 5th anniversary of my first Trial by Error report on Virology Blog—a 15,000-word investigation of the PACE trial that piggy-backed on the work of smart patients and advocates. I assumed that investigation was a one-off!

I thought The Lancet would have to address the trial's self-evident flaws and that would be that. Of course they didn’t address the flaws and that wasn’t that. I was really stupid then. It took a while to recognize that the obstacle was not a study but a powerful paradigm. So I kept chipping away at the paradigm.

And here I am five years later, still chipping away, and now crowdfunding donations to Berkeley to help support the project from January through June of next year, and doing this during an unfolding global disaster. Whatever the final crowdfunding outcome, I’m looking forward to continuing with my work.

(To donate, please use the above link--DO NOT CLICK on the "Read Update" button below that is automatically included in this message. That button will take you to last year's completed campaign--not to the page for donating now.)

Thanks much!--David
Click to expand...
 
I posted this in a number of places:

cleardot.gif

Five years ago this week, this important series was published in three parts: "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study" By David Tuller https://www.virology.ws/2015/10/21/trial-by-error-i/

I was honoured to be featured, but I was just one of many involved in the work. We are fortunate that David has been working diligently on similar issues for the last number of years (while some people such as myself are less involved in following the details). He is looking to support his worthy work here https://crowdfund.berkeley.edu/project/22602

There's a good chance that David's reporting & the open letters he organised with hundreds of international experts and patient groups turned the tide & helped persuade the Information Commissioner & the subsequent tribunal panel to release some data from the £5M PACE Trial. This data release led to our showing the recovery claims were without foundation in our papers, such as this one: https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3 Up to then, the PACE Trial team had got a lot of support from some within the UK establishment which probably influenced the Information Commissioner to turn down requests for the data.

Up to the last few years, graded exercise therapy and graded activity/exercise-oriented CBT were widely touted around the world as evidence-based therapies for ME/CFS. While things have not totally turned around, gradually attitudes are changing. I believe David has been an important person in changing attitudes and it's important that he is supported to stay involved at this time.
Click to expand...

 
Last edited:
via e-mail:

Trial By Error: Reporting on ME/CFS and Related Controversies Project Update: Two more days--and the campaign has reached 93% of the goal! Thank you!

In the beginning of October, I really didn't know what to expect with this effort, given the mess we find ourselves in. But now I've reached 93 % of the goal, thanks to more than 650 generous donors--thanks!! With two days, here's the link:

https://crowdfund.berkeley.edu/project/22602
Click to expand...
 
You must log in or register to reply here.
Back
Top Bottom