Crowdfunding: Trial By Error: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms", Spring 2023

Link to fundraiser page, https://crowdfund.berkeley.edu/project/37217


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, ME/CFS, “medically unexplained symptoms,” and now long Covid. These tax-deductible donations to Berkeley will support my academic position as senior fellow in public health and journalism at the Center for Global Health from June through December of 2023. The Center uses the funds to cover my salary and health insurance.

**********

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. The PACE trial tested graded exercise therapy and cognitive behavior therapy as treatments for ME/CFS. 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. As part of this project, I also write commentaries for academic journals and stories for major news organizations.

**********

Some more background

In October 2021, 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.

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://trialbyerror.org/2015/10/21/trial-by-error-i/

This is a link to all the posts I have written on Virology Blog: https://trialbyerror.org/archives/


Link to fundraiser page, https://crowdfund.berkeley.edu/project/37217

 

Couple of social media posts if you want something easy to share.

Facebook: https://www.facebook.com/sci4me/pos...GTkmux55rPnjHGodYXWPwXc35jEDU8DgWJjqKHFC4w6jl
Mastodon: https://med-mastodon.com/@s4me/110128405809401848

 

Some more social media posts that could be shared
Twitter:

Facebook:

Mastodon: https://disabled.social/@tomkindlon/110135442395101022

 

$4,360 raised, 6% of total, 26 days left.

https://crowdfund.berkeley.edu/project/37217

 

$5,010 raised, 7% of total, 24 days left.

https://crowdfund.berkeley.edu/project/37217

 

$8,730, 13% raised, 22 days left.

https://crowdfund.berkeley.edu/project/37217

 

Worth every penny as always. Donated.

 

$11,407, 17% raised, 20 days left.

https://crowdfund.berkeley.edu/project/37217

 

$25,409, 39%, 13 days left.

https://crowdfund.berkeley.edu/project/37217

 

Thanks for tracking it! I've learned through experimentation that looking at the total multiple times a day doesn't make it go up any faster. Nor does not looking at it make it go up more slowly. Go figure!! There's a lesson in there somewhere.

 

(Off topic)
That reminded me of this:

I've discovered that I have a superpower.

I can melt ice cubes just by staring at them.









It takes a while though.
(Boom boom, as Basil Brush used to say)

 

I think that’s one ready rolled sausage-machine retort to Paul garner lined up there for anyone using social media!

Of course I can almost see the meme too.

the ‘expectation effect’ in genius action agsin hey

 

$34,466, 53%, 11 days left.

https://crowdfund.berkeley.edu/project/37217

 

I’ve just donated and shared on Twitter (two accounts), Mastodon, Instagram, Tumblr and Facebook account (personal profile and my ME page).

Have highlighted a bit in these places before including daily tweets, or retweets of others, on Twitter.

 

$41,127, 63%, 9 days left.

 

$45,051, 69% raised, 7 days left.

https://crowdfund.berkeley.edu/project/37217