Discussion in 'General ME/CFS News' started by Countrygirl, May 27, 2017.
Did another small donation (payday)
Are there any - perhaps especially UK based - charities that could do a email-shot to their subscribers, that haven't already done so? Even if they do not feel it's appropriate to donate.
Least I could do after Tuller took the time to chat and answer my questions at the Invest in ME conference. Only wish I had more to donate.
If doing this, I wouldn't just concentrate on national groups. There are also lots of local support groups with mailing lists, Facebook pages, et cetera.
Here's one list for the UK:
If you put the names of a couple of support groups into Google or whatever, one can probably find other lists which may have extra groups. Though this list looks quite good for the UK.
This also appears to be a good list of support groups for UK and Ireland:
in fact this seems to be a good online resource..........not heard of them before.
From their homepage:
"My name is Louise Sargent and I launched M.E. Support in 2001, having been living with Myalgic Encephalomyelitis for nine years, in a bid to raise awareness and help fellow sufferers. This is a UK-based website providing worldwide information to hundreds of thousands of visitors each year. I manage M.E. Support daily with the help of a small but invaluable team of Volunteers. I have also been able to expand offline, such as advising the media on M.E. and guiding medical professionals."
Excellent interview with David Tuller from ME Action. Really spells out the level of his ambition in demolishing PACE and all its influence.
His fundraise is now up to 62% - just short of $37,000 raised. There's even been a donation from Laura Hillenbrand - either that or someone using her name.
Time for another donation, I think! So good to see the fund growing. He really appreciates all the people who have managed to spare $10 from their small incomes.
"When work is vetted and approved by top scientists and medical experts up and down the chain, and has been established as the basis for developing the standard-of-care throughout the National Health Service, it is very hard for journalists to crack that open. They have bosses they have to answer to. These people can complain to their bosses.
It’s different for me. I’m outside this system. I haven’t done this work as anyone’s employee, so no one can fire me. I haven’t done this for money, so my pay can’t be withheld. I’m not looking for UK grants, so I don’t have to worry that these awful people might peer-review me. I’m not a member of the UK academic and medical establishment, so I don’t have to schmooze with Simon Wessely or Esther Crawley at social events and make small talk over tea and biscuits. I am not beholden to anyone and don’t have any reason to give them the respect and deference they apparently seem to expect from everyone no matter how awful their behavior and their science. "
"The CDC has a lot to answer for here — including inflicting the name CFS on the world, with all the harm that has come with that. And they have done very little, as far as I can see, to mitigate the tremendous damage they have done. "
"The more we can document that PACE is insane, the easier it is to shake loose money for research."
Loading Tweet... https://twitter.com/statuses/873192658172354560
Has anyone started writing to groups to ask them to highlight the appeal and/or donate? I'm afraid I have too much on.
Wow - he leaves me speechless - excellent excellent interview!! I cannot imagine a better advocate. I'm going to donate today.
Why is that a problem
A separate thread might be good.
But I don't think one needs to know in advance a group's stance. Emails don't cost any money so I'd encourage people to write to all the groups. Even groups that might be supportive might not do anything within the timeframe as they may be too busy or want to discuss it with their committee (which they will most likely want to do if they are considering giving a donation themselves; maybe less important if just circulating it to their members).
Could use an alias? If just writing to make people aware of the campaign, I don't think that could be used against Tuller. Good to be cautious and think through these things.
I don't think you need to make requests for donations, just an email to highlight that the crowdrise fund raiser is active and that you are helping to spread the word for a good cause that every patient with ME should be aware of.
It's then up to the organisations if they want to do anything.
Regarding point a) it is something to be proud of not afraid of.
Lots of appeals have already been written on social media e.g. Twitter, Facebook, etc. As long as the wording was not over the top, I doubt an email to groups requesting they consider donating to the appeal and/or circulating the appeal to their contacts would cause many problems.
You can also try a Google Site Search
Separate names with a comma.