David Tuller crowdfund: Trial By Error: Reporting on ME/CFS and Related Controversies

https://twitter.com/user/status/1116954745191763969

 

Thank you, @Andy!

ETA: German language version:
https://twitter.com/user/status/1117094953044336649

 

$52,160, 54% of target, 16 days left

518 donors
UK: 201
US: 102
Norway: 59
Aus: 39

Donate from as little as $10 at https://crowdfund.berkeley.edu/project/14941

 

$54,150, 56% of target, 15 days left

535 donors
UK: 204
US: 107
Norway: 62
Aus: 39

Donate from as little as $10 at https://crowdfund.berkeley.edu/project/14941

 

$55,340, 58% of target, 14 days left

560 donors
UK: 216
US: 108
Norway: 64
Aus: 42

Donate from as little as $10 at https://crowdfund.berkeley.edu/project/14941

 

I have a donation which I will make at the weekend..i hope they will speed up again for the next while . It has flown by and we still need 40 thousand. I kept back a bit when I made my first donation as when I feel It's getting tight I like to feel I can do something and I really wish I could do more. I know we all do.

We can't control where research will go in the next few years but we need to do our best to ensure that bad research doesn't become a gold standard like Pace did. It did and still does so much harm . Looking at the new Cochrane appointee today doesn't instill any confidence in me .
Recently I was looking for a new GP and I went to someone local . When I mentioned I had ME he actually threw both arms up in the air and told me he only practised evidence based medicine.

David Tuller has been a fearless and very capable advocate for us and I think we can't afford to be without him . I only hope we can afford him. The damage from bad research informs how medics treat us, how our families and even friends treat us. For many of us raising money for anything related to our illness from families is impossible because those same families dont believe in our illness because they follow those supposedly evidence based trials. We will never be able to quantify the damage done by Pace etc but it goes in all directions. David Tuller has been doing a stellar job in his efforts to uncover the truth and to challenge these deceptions. Hopefully he will have the means to continue for as long as it takes.

 

$55,922, 58% of target, 13 days left

572 donors
UK: 221
US: 110
Norway: 66
Aus: 43

Donate from as little as $10 at https://crowdfund.berkeley.edu/project/14941

 

Over the last few hours, I have posted the following in 60-70 (?) Facebook groups:

 

$57,432, 60% of target, 12 days left

603 donors
UK: 230
US: 121
Norway: 69
Aus: 45

Donate from as little as $10 at https://crowdfund.berkeley.edu/project/14941

 

$64,297, 67% of target, 11 days left

623 donors
UK: 237
US: 129
Norway: 69
Aus: 46

Donate from as little as $10 at https://crowdfund.berkeley.edu/project/14941

 

Interesting to note that the UK has a far higher, at the moment, number of Millions Missing events registered than the US.
https://twitter.com/user/status/1118968692862267393


Some possible reasons that I've pondered for that and for the higher individual donations from the UK compared to the US;

• Patients in the US feel that they are in a better place due to things like NIH funding Collaborative Research Centers, CDC dropping GET and CBT etc etc.
• Patients in the UK seeing those positive changes and feeling spurred into action to try to achieve something similar.
• Possibly even a Brexit effect. Seeing that those in charge are so ineffectual has, again, spurred them into action.
• All of the above.
• None of the above.

Impossible to know for certain of course, just kind of thinking 'out loud'.

 

I think the main reason is patients in the UK are actively harmed by official guidelines and have been on the receiving end of a deceitful campaign of disinformation aimed at disparaging and stigmatizing them. Having bullies push you around is a strong motivator.

No one in Canada or the US is getting adequate help, but at least no one is being actively harmed and mocked and insulted in national news media. That changes motivations. The stronger psychosocial ideologues push, the bigger the pushback. I hope that the insanity of the MUS project creates allies in this fight.

 

$65,030, 68% of target, 10 days left

638 donors
UK: 243
US: 130
Norway: 69
Aus: 46

Donate from as little as $10 at https://crowdfund.berkeley.edu/project/14941

 

Thanks to everyone keeping the donations coming.

 

Only 16 donors from Germany. This saddens me so deeply.
At the same time, thanks to these donors!