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

I think outside of the UK it might be more a just case of people just not being that invested in the cause or less aware of it as it affects them less directly. I mean there has to be plenty more than 70 people in the US who could very comfortably donate.

 

Has anybody seen any other org/charity advertise the fundraiser other than MEAction?

 

I donated a couple of days ago but forgot to say here which is a shame because I missed the chance to tell David how much his work is appreciated and valued.

Thanks David. I appreciate your time and determination in pursuing the real story behind existing ME treatments and bringing it into the light. I am grateful.

 

The absence of US donations does look a bit woeful but in a sense there may be a natural justice behind this. David is pointing out a problem that primarily affects socialised health care provision - for complex reasons. The people whose health care is determined by rule setting based on trials of CBT and GET are those in places like UK, Scandinavia, Australia and Canada. I can see that people in the US may feel there are other priorities. I think they may underestimate just how much these trials influence medical opinion in the US but that may not be easy to discern.

 

I advertised it in a local group, also making the point that small donations were welcome and showed the involvement of many pwme.

 

I should have clarified that I was more thinking that I hadn't seen any of the large orgs/charities share it (ME Association, AfME, IiME etc) - although I might have missed it. Thank you for sharing it where you can though.

 

The Irish ME/CFS Association just has one social media account currently, a Twitter account. We have retweeted a number of tweets on this. We will also include one or more messages in our e-bulletins before the end of April as we did last year.

 

Yes, but we're a small and close knit community where a big proportion follow the same fb groups and prominent people. It's easy to get the word out, and our community discussion is largely one big central one rather than several smaller local ones. DT showing up at our conferences has also made him well known here. In general we have better financial security than even our closest neighbors Denmark and Sweden, where they have mostly denied pwME benefits, so that means more people can easily spare a few dollars without worrying they will need them for food or meds later.

And like JE says, his work is highly relevant here because we have our own BPS brigade that largely leans on the UK one and their work to validate their own stance. In addition to that the crowdfunding has been promoted and supported by people like Nina Steinkopf, who is a leader in the fight here and so very respected and appreciated in the community.

ETA: Norwegians also tend to appreciate anyone who bothers to notice us, we're not exactly the center of the universe and any attention at all is soaked up like the sun after 6 months of winter darkness

 

The small absolute numbers are always surprising to me, but this has been the pattern the two previous years. The US always lags behind UK. I agree with Jo's point here, and besides that the great majority of the blogs are about the bad UK research (with nods to bad research in Netherlands, Norway, etc.) and bad impacts of that bad research. I agree that in the US there is not as much recognition of the impact that this research has had, especially now that that impact is waning. So people don't necessarily associate my work with the changes, I guess.

Still, I do think the US showing is abysmal. I'm sure more than 70 people in US know they've benefited from my work. But despite that I'm encouraged overall at how it's going and in the end it will all work out fine. It started with a rush, hit a lull, has bumped up a bit again, and I'm over 40% there with more than three weeks to go. That's pretty good.

 

I also think in US this past week folks have been distracted by advocacy week and the NIH gathering. It's hard to focus on too much at once.

 

The small number of donations from the US may also reflect the fact that the CDC has withdrawn its recommendation for CBT/GET. I think what US now needs is to lobby congress for more ME/CFS research funding.

 

Yes, that's definitely part of the change. But US participation was low as well the first year I crowdfunded, two years ago, and that was before the CDC did that.

 

What I and some others have done before with other appeals is to email messages to local and national groups. Different searches will show up different groups. I recall that ME Association has a list of local groups on its website. Previously there were a lot of local groups in other countries such as the US, but I'm not sure what the situation is now.

Some will share, some won't.

I'm very busy with lots of activities in Ireland at the moment so won't be doing it myself.

 

$41,737, 412 donors, 43% of target

UK: 168
US: 75
Norway: 43
Aus: 35

 

Jenny Spotila throws her support behind David again, http://occupyme.net/2019/04/08/return-on-investment-ii-david-tuller/

 

http://www.virology.ws/2019/04/08/trial-by-error-crowdfunding-week-1/

 

I agree, but just like to add, a big part of why the norwegian ME-community is rather close-knit, is our own bps and LP proponents very active use of the media. We've had to find ways to raise our voices in the public debate, and perhaps have an sort of collective awereness of the need for strong voices speaking up on patients behalf. Making norwegian ME-patients 'get it' without the need to explain much.

 

The behavior of the LP-hacks and psychosocial ideologues in general has been pretty appalling. It's ironic but the presence of saboteurs is a kind of motivator. In Canada there is simply no conversation over this at all because no charlatan has tried to control things. It may be in part because of how confederation works and the separation of federal oversight between provincial implementation. It's harder to push ideology into practice.

As expected, RecoveryNorge gloated at the failure of the Rituximab trial, saying medical research is a waste of time that would be better spent sending patients over to them. Absolute immoral ghouls. This kind of behavior tends to create a strong reaction. No wonder so much of the funding comes from countries suffering the blight of immoral saboteurs.