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

I (in the Venn between fibro and ME, if there is such a thing) just donated.

In 1968 or so, Ed Bayley was the first dean of the UC-Berkeley graduate journalism dept and offered my dad a science instructor post in the department. Poor Dad pooh-pooh my diagnosis of fibromyalgia back in 1996 because he read a NY Times article which said it wasn't real. Dad never apologized nor asked about my condition (rather severe) in the ensuing 28 years.

The damage of bad publicity is frighteningly real.

Thank you for all your dedication.
 
dave30th said:
This year I should try to visit Denmark and Sweden as well, and Germany, too. I mean, all I can really do is give a speech or two and meet with health officials or politicians and so on and report a bit about the situation. If that helps create some movement and/or gives people in some other way, that's great.
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@dave30th Yes, please do come to Sweden! I truly believe you could make a difference and be of much needed help here. When planning your trip, please make sure to get in touch with PACE-granskaren. I, too, would be more than happy to help in any way I can.
 
Tom Kindlon said:
I haven't read this thread so far. But if people want to reach a lot of people with ME/CFS, there are a lot of Facebook groups that could be posted to. Some have 10,000 or even 20,000 members. Though you might need to check whether it is allowed in some groups.
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It seems that those sorts of social media groups attract far wider groups that a specialist forum like this.
 
EzzieD said:
I will no longer use cards to pay for anything online after my card got defrauded 3 times within 5 years a few years ago as a result of online card transactions, despite keeping my computer locked down with tons of anti-malware and security stuff and being very careful. I won't ask someone else to pay with a card on my behalf because of any chance of what happened to me happening to them. I looked into prepaid cards but they seem hideously complicated and expensive to obtain, at least in the UK - if anyone UK-based has any first-hand advice about prepaid cards (nobody I know uses them), I'd be very pleased to hear it!
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I've used the Cashplus Prepaid 'Flexiplus' Mastercard in the past:

https://www.cashplus.com/pricing/

As I rarely used it, it was most economical for me to pay the £1 charge per transaction with no monthly charges, but there are other options available. It was very convenient to use as the account can be loaded free at Post Offices and you can just keep in enough to cover any planned payments. I may open an account again to reserve for making online purchases and payments!
 
Andy said:
Official launch blog post, http://www.virology.ws/2019/04/01/trial-by-error-april-is-berkeley-crowdfunding-month/
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For people planning to send out a link to others who haven't been following this issue closely, I reckon the blog is probably less good than the fundraising page for letting people know why they should donate. For friends/relatives, or patients less aware of PACE, who might be considering donating, I don't think that the Kelland piece linked to is so clearly rubbish that it's self-refuting.

Also... Myhill is pretty bad!
 
Esther12 said:
For people planning to send out a link to others who haven't been following this issue closely, I reckon the blog is probably less good than the fundraising page for letting people know why they should donate. For friends/relatives, or patients less aware of PACE, who might be considering donating, I don't think that the Kelland piece linked to is so clearly rubbish that it's self-refuting.
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I've also posted another post which is just the link and the text of the appeal itself. So people can send that if they feel it's more useful. I assume pretty much everyone coming to read about it on Virology Blog or coming to the crowdfunding site knows what's going on, but it's good to think about how things appear to those not so familiar with everything. Good to be reminded.
 
dave30th said:
I've also posted another post which is just the link and the text of the appeal itself. So people can send that if they feel it's more useful. I assume pretty much everyone coming to read about it on Virology Blog or coming to the crowdfunding site knows what's going on, but it's good to think about how things appear to those not so familiar with everything. Good to be reminded.
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Link to that blog post
http://www.virology.ws/2019/04/01/t...FGCY7ziIb8wiCxDlnU9AfOA2IYJennaCWEqrE-fpZHxPg
 
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