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

Thank-you for your great work.

Is it the wrong reaction to be really concerned that this has to be crowd-funded, though? Can't universities prioritize this kind of work and fund it directly? I don't know much about how funding works but this seems so precarious in terms of the things that have had to line up to make it happen.
 
I agree @Ariel, but it shows how desperate the patients and families are to get the psych b******t repudiated. In the UK at least, we are not going to have a paradigm shift away from dysfunctional illness beliefs/deconditioning/fear of activity until this disinformation and flawed, if not fraudulently research is exposed.

Currently the psych cabal control the medical, academic and media narrative, in the UK and some European countries.
 
I'm following David Tullers work closely for years and I feel it will be so important for all of us. I'm really getting quite worried he won't make the target. Is there anyway we could add a stickied post across the site publicising the fact that the fundraiser is on? Or at least a stickied post at the top in the highest traffic sub forums here?

Anyone know if I can make the link in my signature active?

I think Michael Sharpe said it better than I could in describing his importance to the area
"One of these is a man called David Tuller, a former HIV campaigner, who has become something of a hero to the ME/CFS community in the UK. He takes a highly detailed approach to medical papers, closely reading them to uncover any inconsistencies or potential flaws. He publishes his findings on a well-read blog called Virology. [Actually, the name is Virology Blog, not Virology.]"
 
Starlight said:
I'm really getting quite worried he won't make the target.
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Yeah, I'm watching that amount anxiously too.

Some of us spread the total amount we donate over a couple of small donations - in the UK benefits are paid fortnightly so that can spread the load a little- I hope to make a 2nd donation before the crowdfund ends. Maybe others will be doing that same.

I'm also hoping for a last minute jump in the amount donated as maybe other people's payment days crop up.
 
dave30th said:
Thanks. I get nervous every time, particularly because I don't like asking patients to cover what should be covered in other forms of funding. But it seems to work out each time anyway. No one should be spending any time fretting about it but me.
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We all have skin in this game David, I feel your work is very important! We are all watching with you. I would like to think of any ways we could to help out.
Are there any charities we could lobby to help? Maybe we could ask any local groups we are part of if they've any money left over. I feel like this is as important as donating towards research. It is the best chance of better care in the near future.

I will donate more later in the month too. I decided to go for two donations instead of one at the end. Glad to see others thinking likewise @Invisible Woman ! We will get there I'm sure.
 
dave30th said:
I think of it along the lines of the Streisand Effect. https://en.wikipedia.org/wiki/Streisand_effect
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Hi David, there is talk of (legal) action in S4ME -unlikely due to costs and difficulties in the UK of framing such a case.
Better we all dip in our pockets and fund you to do your business approach, as it's far cheaper, cost effective and we do get a certain entertainment factor thrown in ( ...for free!!) :laugh:
 
boolybooly said:
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.
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Totally agree - we can't and indeed won't stop!
 
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