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

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.
 
Wow that’s amazing @Tom Kindlon well done. I’ve shared in my local group and a national group I’m on regularly and will do so again at the weekend. I’m waiting til the end of the month to put in my second donation.

Now on 600 donors 60%. Seemed like more donations over the weekend last week so maybe that will be the case this weekend too.
 
Interesting to note that the UK has a far higher, at the moment, number of Millions Missing events registered than the US.


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'.
 
Andy said:
Some possible reasons that I've pondered for that
Click to expand...
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.
 
I think people here see that Unrest and MM has been a contributor to the change in the way the wind is blowing but but we haven’t got anything changed in practice yet whereas in the US the CDC website change and the research centres are in place, OMF ramping up too. We’re still working on turning our supertanker. The crew aren’t convinced yet it needs to go in a different direction still listening to the old helmsman.
 
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