1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 15th April 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

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

Discussion in 'Fundraising' started by Andy, Mar 31, 2021.

  1. Ariel

    Ariel Senior Member (Voting Rights)

    Messages:
    1,057
    Location:
    UK
    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.
     
    alktipping, janice, Hutan and 5 others like this.
  2. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    2,750
    Location:
    UK
    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.
     
  3. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    4,499
    Location:
    Cornwall, UK
    $32,950, or 54% of total, just now. 13 days to go.
     
    Shinygleamy, Yessica, Nellie and 4 others like this.
  4. Starlight

    Starlight Senior Member (Voting Rights)

    Messages:
    118
    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.]"
     
  5. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    4,499
    Location:
    Cornwall, UK
  6. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    10,280
    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.
     
    Kirsten, alktipping, Sean and 5 others like this.
  7. dave30th

    dave30th Senior Member (Voting Rights)

    Messages:
    2,246
    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.
     
    Hutan, janice, Shinygleamy and 12 others like this.
  8. Starlight

    Starlight Senior Member (Voting Rights)

    Messages:
    118
    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.
     
    Hutan, janice, Shinygleamy and 10 others like this.
  9. Trish

    Trish Moderator Staff Member

    Messages:
    52,310
    Location:
    UK
    We don't allow links in signatures.
    I think everyone on this forum is likely to be aware of the fundraiser. And it's in the weekly news each week.
     
    Hutan, Binkie4, alktipping and 5 others like this.
  10. lunarainbows

    lunarainbows Senior Member (Voting Rights)

    Messages:
    2,820
  11. JemPD

    JemPD Senior Member (Voting Rights)

    Messages:
    3,974
    I fantasise that in the future 'The Sharpe Effect' will be as well known & used as Godwin's Law or Occam's Razor.
     
    Hutan, janice, Shinygleamy and 13 others like this.
  12. dave30th

    dave30th Senior Member (Voting Rights)

    Messages:
    2,246
    I think of it along the lines of the Streisand Effect. https://en.wikipedia.org/wiki/Streisand_effect
     
    Hutan, Shinygleamy, mango and 9 others like this.
  13. JemPD

    JemPD Senior Member (Voting Rights)

    Messages:
    3,974
    In my fantasy that wiki page says 'Streisand effect (Sharpe effect in science/medicine)'
     
    EzzieD, MEMarge, Starlight and 2 others like this.
  14. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    4,499
    Location:
    Cornwall, UK
    Binkie4, Yessica, mango and 4 others like this.
  15. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Messages:
    1,522
    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:
     
  16. Andy

    Andy Committee Member

    Messages:
    21,947
    Location:
    Hampshire, UK
    MEMarge, mango, Hutan and 7 others like this.
  17. Daisybell

    Daisybell Senior Member (Voting Rights)

    Messages:
    2,631
    Location:
    New Zealand
    Been paid - donated! Thanks David....:thumbup:
     
    rainy, alktipping, MEMarge and 11 others like this.
  18. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,203
    I've just donated. I only get to read some of what he writes these days but it’s reassuring to know he's keeping a close eye on the output from those from the biopsychosocial viewpoint who have caused so many problems over the years
     
    Kirsten, rainy, JemPD and 15 others like this.
  19. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    4,499
    Location:
    Cornwall, UK
  20. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Messages:
    3,664
    Totally agree - we can't and indeed won't stop!
     
    JemPD, Starlight, Yessica and 3 others like this.

Share This Page