Crowdfunding: Trial by Error [David Tuller] Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff, Spring 2021

What a year.

One thing that's happened, for obvious reasons, is that the rest of the world has discovered the existence of serious post-viral conditions. That means the illness or cluster of illnesses known these days as ME/CFS is receiving more attention.

Berkeley has again designated April as a month for campus projects to seek tax-deductible donations through the university's online crowdfunding platform for my Trial By Error project. I hope to raise $60,000 in gifts to Berkeley to cover the six-month costs for my position as Senior Fellow in Public Health and Journalism at the Center for Global Public Health, which is part of the School of Public Health. The funding will cover from July through December of this year.

Of that amount, approximately $40,000 is for salary, $15,000 is for health insurance/employment benefits, and $4,500 for Berkeley's 7.5 % gift fee.

....

Some Recent Highlights

Here are a few highlights of my work since Berkeley's last crowdfunding effort six months ago:

*The Journal of Health Psychology has accepted an analysis I co-authored (with Irish psychology professor Brian Hughes) of a recent paper 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 bogus and unjustified claims. Our paper documents the many flaws and formally requests that the misleading abstract be corrected.

*I have written multiple posts about the complicated and unclear overlaps between ME/CFS, MUS and the Long Covid phenomenon. The biopsychosocial brigades are seeking to colonize Long Covid as they have these other fields, and it is important to keep critiquing their research and assumptions.

*Medical Humanities, a journal from BMJ, has published a paper I co-authored (with Northwestern University law professor Steven Lubet) about MUS, which called for humility on the part of experts in making definitive statements about conditions of unknown etiology. The commentary was a response to an egregious 2019 paper co-authored by Professor Michael Sharpe, one of the lead PACE investigator.

*Another co-written paper is current under view, and a couple more are in the works. While I have devoted most of my time to reporting, it is important that scientifically illiterate studies are also debunked in the medical literature and not just in journalism or blogging venues.

*BMJ Pediatrics Open has retracted 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. A smart patient initially pointed out some of the issues to the journal, and I followed up with multiple posts and letters to BMJ. (Unfortunately, the journal posted a very bad revised version, but still.)

*I have maintained a consistent presence on Facebook and Twitter, responding to events and drawing attention to bad research and anti-scientific claims.

https://crowdfund.berkeley.edu/project/25504

 

Social posts, if people want something to share.

 

Thanks. Not my favorite thing to do.

 

Is one of mine...

 

@dave30th --

As I try to make some people who show an interest in Covid sequelae aware of your work and your current crowdfunding, would it be possible for you to add hyperlinks to the articles you (co-)wrote?

 

Good idea, thanks!

 

Thanks for the thought! I originally did it once a year because I hated doing it and didn't want to inflict it on myself or anyone else more than that. With it coinciding last April with the pandemic, it forced everyone onto a twice yearly schedule. And having done it that way now, it does seem easier all around than once a year. I wish it were possible to donate by PayPal and other means. I have asked repeatedly. But they use a specific platform that isn't that flexible.

 

I understand that. I wish I could. I'm really careful that the money goes to Berkeley and not to me, except in the form of salary and benefits. Taking money personally is not something I am at all comfortable doing. But thanks.

 

Understood. And in any case you would not want to make it possible for some to potentially accuse you of mishandling funds. No matter how unfounded such claims would of course be, there is no sense making things easier for such people to smear campaign. The way things are everything is clear for all to see.

 

Yes, that's my thinking. I have been clear that all money raised goes through Berkeley. Kate Kelland made it appear that I was running around the world crowdfunding money directly into my bank account.

 

Given the alacrity of some of the GET/CBT defenders to slander and defame and the willingness of some journalists to repeat this unquestioned, it is import that there is no scope at all for them to twist the truth on issues like funding sources.

 

Precisely.

 

$7,575, 12% raised, 27 days left.

https://crowdfund.berkeley.edu/project/25504

 

I am very grateful to Berkeley for giving us this opportunity.

Berkeley has a storied reputation in the struggle for justice, on the battlefield of perspectives their oversight provides a professional context and legal awareness which adds weight to your words @dave30th .

I feel the best we can do as a patient lobby is support your (EDIT - correction tenure ) project at Berkeley and maintain 100% transparency.

I dont begrudge one cent, justice needs support, I am just grateful I can support your work without having to run around with pamphlets and posters etc! Which for obvious reasons would not be practical.

I learned to live on £45 a week while ten years undiagnosed 1986-96. Since diagnosis with ME CFIDS I have been able to claim benefits which far exceed this and am glad to be able to allocate some of it to the greater good of getting this medically forsaken condition recognised once and for all. I have a niece and nephew who thankfully remain free of this horror, but among my cousins' children two have ME and I dont want the next generation to live through what I have been through. We have to find out why this happens, the neglect has to end and we have to make it happen, because the people perpetuating confusion about ME wont stop while they make money out of it, so neither can we.

 

I am very appreciative of the role Berkeley has played. I'm not tenured so have no guarantee of academic freedom--but they have protected me anyway against absurd charges of harassment and misconduct from UK people. It was the dean of the public health faculty that first suggested I crowdfund on Berkeley's platform in this way. The donations are treated like any other gift to the university--I just have many more donations in smaller amounts than most faculty.

 

Sorry, I should have said project not tenure. I will correct it, dont want to give the wrong impression.

I think the dean's suggestion was far-sighted and feel sure there is more to come on this story, like with HIV, its going to break through at some point. We are in the middle of it now really, with ME and longcovid on one side and LP and BPS lobbyists on the other. The more that is at stake the less likely they are to just stop and see sense like I wish they would. So now more than ever I think its in the ME patient lobby's interests to get this crowdfunding over the line to enable you to continue doing what you want to do.

Anyway on that score I am grateful to you for taking the stand you did and feel sure that your writing helped to tip the scales of justice against the PACE authors and you should not feel bad about asking for money from us to help you, help us, get justice. We should be glad of the opportunity to help you and I think any who do, are.

Sorry about the UK people. Crawley's bogus complaint, if that is what you are referring to, did not reflect well on her or Bristol and Berkeley were right to take the approach they did. But those are the kind of tactics we are up against and that is a good example of how this crowdfunding arrangement with Berkeley helps to protect and enable your work.

 

oh, I hadn't even noticed that! I just meant to highlight the point that I do not have the legal protection that comes with tenure.

 

Thanks, I appreciate that.