1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Join the National PR Campaign for ME: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

Sept 10: CDC 'conference call' including Unger and Lipkin

Discussion in 'General ME/CFS News' started by Sasha, Aug 14, 2013.

  1. WillowJ

    WillowJ Senior Member

    Messages:
    3,136
    Likes:
    2,827
    WA, USA
    Center for Infection and Immunity/ Mailman school of Public Health/ Columbia University has nonprofit status and seems to have some ability to direct donations. Maybe we could talk to Dr. Lipkin and Gilbert Smith (mentioned on the site) and get a code.
    http://www.cii.columbia.edu/donate.aspx?Axul69
     
    snowathlete, Iquitos, Sushi and 7 others like this.
  2. vli

    vli

    Messages:
    2,032
    Likes:
    2,147
    CA
    beaker, these are all my Qs too, and i confess i know zero about fundraising. I've posted a poll here asking. http://forums.phoenixrising.me/inde...h-raising-funds-for-prof-lipkins-study.25213/
     
  3. Sasha

    Sasha Fine, thank you

    Messages:
    8,773
    Likes:
    8,151
    UK
    I don't believe so - they'd have to take a tiny bit off lots of diseases. I don't see the problem. A hundred diseases get a 1% cut so we end up with !00% of the average. I don't see the big deal.

    That's interesting - have you got a reference?

    Totally agree. The sequestration issue isn't it - it's unfair distribution of the sequestrated funds.
     
  4. Sasha

    Sasha Fine, thank you

    Messages:
    8,773
    Likes:
    8,151
    UK
    Very good point - what seem like huge sums to us are nothing to govt and we have a realistic chance of successful advocacy if we pursue them.
     
    snowathlete likes this.
  5. vli

    vli

    Messages:
    2,032
    Likes:
    2,147
    CA
    It did occur to me while listening to Prof L that he has way more influence (I'm assuming) than other ppl trying to get federal money like say, Dr Chia. I'm not familiar with the phrase "passing the hat"--when he said that did he mean he wasn't going to spend the precious little resources/time he had to try to get funds from the US gov (and is asking us to pressure gov)?
     
    Sasha likes this.
  6. Sasha

    Sasha Fine, thank you

    Messages:
    8,773
    Likes:
    8,151
    UK
    I think it would be great if a small team of advocates who understand funding mechanisms could get together with Lipkin and work on a letter for congress people. He is a hugely successful scientist with no doubt a spectacular record of getting funding and knows not only how the system is supposed to work but how it actually works and where it would be useful to put pressure, and how. We've got to put his expertise together with our numbers.

    We've been having a fascinating discussion with Prof. Jonathan Edwards about the UK Rituximab trial on this thread and it's interesting how his views on how funding works at his level are different from how the rest of us might view it. I really do think we need advocates working with Dr Lipkin on this to make use of his experience and expertise in getting funding. We need to work with him so we can best help him to help us.

    I agree it's a major issue but I don't think all research funding must stop while it's sorted out. NIH have announced no funding moratorium while that happens. In particular, I don't think it needs sorting out in order for Dr Lipkin to get the rest of his study funding.


    jspotila - I'm hoping there might be a few (one or two or three) well-qualified advocates who will pick this up with Dr Lipkin in the next few days and produce a letter for people to write to their congress people. I don't want to load you down with stuff, even though you'd be a great candidate - but if you're not up for it, I'm hoping you might know people who are!
     
  7. Sasha

    Sasha Fine, thank you

    Messages:
    8,773
    Likes:
    8,151
    UK
    It means he's holding his hat out upside-down and passing it round so people can drop money in it - I took him just to mean he was asking for money.

    There's a literal scene of passing the hat in the movie Cowboys & Aliens. :cool:
     
  8. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    774
    I wasn't able to listen to the talk so have picked up what info I can here.

    One thing that strikes me is - if Lipkin thinks the disease causing agent is infectious this could help us to get funding for research.

    Because ME will become a growing problem as the agent is being transmitted through the population, (and we know that it passes from parent to child in many families) and because presumably anyone in the population could catch it!

    So it ought to be seen as a public health priority. And they ought to put measures in place ensure that people with ME do not unwittingly pass on the disease to others.

    Which means that they need to find out HOW it is transmitted.

    We know that ME affects large numbers of people and that the numbers are growing.

    The psychologisation of this disease has led to mistaken complacency in what could be an urgent public health issue.

    This could be useful if we need to get funding for research
     
    leela, Sushi, Kati and 5 others like this.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,401
    Likes:
    4,797
    australia (brisbane)
    is there a way we can put a donations fund/bank account that belongs to here and then when we reach a target we pass it on to lipkin. i think if we aim for small targets at a time eg say $10k maybe reasonable for this site??

    I wonder if we can get some guides from lipkin on cost of certain specific studies eg spinal tap study so we can aim towards that or gives us an idea of what we have done.

    We as in us PR folks can post things on other sites, facebook etc to get people to donate to the PR lipkin study??
     
    Dolphin and vli like this.
  10. vli

    vli

    Messages:
    2,032
    Likes:
    2,147
    CA
    yes opinions/help on these questions please!!!
     
    heapsreal likes this.
  11. aimossy

    aimossy Senior Member

    Messages:
    2,907
    Likes:
    3,931
    NZ
    I would like to know about all the significant studies with the most promise and robustness and where I can donate to them.
     
    Dolphin and heapsreal like this.
  12. vli

    vli

    Messages:
    2,032
    Likes:
    2,147
    CA
    thing is, even though Lipkin compared us to the aids patients of the 80s there is like I said one significant difference: WE'RE NOT DYING OF IT. People may dislike my saying it but we're not dropping like flies due to ME, hence, there has never been that fear associated with aids as there is with us, and that is also because there're CLEARLY many many married PWCs whose spouses are not sick! There're also of course PWC parents with children who've NO ME.
     
    Dolphin likes this.
  13. vli

    vli

    Messages:
    2,032
    Likes:
    2,147
    CA
    well as far as researchers go i don't think anyone's held in greater esteem than Prof Lipkin...
     
    Purple and aimossy like this.
  14. alex3619

    alex3619 Senior Member

    Messages:
    7,689
    Likes:
    12,539
    Logan, Queensland, Australia
    It would be nice to find out how it differs from deconditioning.
     
    aimossy likes this.
  15. aimossy

    aimossy Senior Member

    Messages:
    2,907
    Likes:
    3,931
    NZ
    and how to donate etc. I mean far out how much do people end up spending on supplements like I have that have often made me worse. Thanks to all who have informed on the conference call.:)
     
    Dolphin likes this.
  16. alex3619

    alex3619 Senior Member

    Messages:
    7,689
    Likes:
    12,539
    Logan, Queensland, Australia
    I am not sure about this first day being enough to find the AT. If the AT declines on day two, you want to exercise under the second AT, not the first.
     
    jspotila, leela, WillowJ and 3 others like this.
  17. aimossy

    aimossy Senior Member

    Messages:
    2,907
    Likes:
    3,931
    NZ
    im still learning about the programmes of studies going on. this one sounds good! I would like to donate to this one and will donate to one at home here that I think is also good.made my decision, just need to find out how.
     
    Dolphin likes this.
  18. vli

    vli

    Messages:
    2,032
    Likes:
    2,147
    CA
    aimossy if you like u can vote/throw ideas around here.
     
  19. Gemini

    Gemini Senior Member

    Messages:
    398
    Likes:
    301
    Thanks so much for transcribing! Thought I heard Dr. Lipkin say with conviction he believes an infection is the "cause" of ME/CFS. It would be great to have this quote as he did not find active infection in blood or CSF. It also would be great to have a transcript of the list of infections he tested for so we can ask him follow-up questions like whether the cause might be an infection not on this list or whether he thinks a triggering infection is the culprit, i.e., the hit-and-run theory whereby his plans to test for past infections is really important.
     
    snowathlete, Nielk and vli like this.
  20. Nielk

    Nielk

    Messages:
    5,463
    Likes:
    6,005
    Queens, NY


    I think that our biggest issue is the difference between day one and day two. On day two, ours seems to dip really low compared to controls and there is no other way to show this but, to take the test on the second day.

    There is no excuse for totally eliminating this two day testing from the CDC study. Who else is better equipped to study this than CDC?? Even if it is on a small group of patients who are able/willing to take part. Dr. Snell was able to pull together tests subjects. How much does it cost to put up 50 patients in a hotel overnight?
     
    snowathlete and Kati like this.

See more popular forum discussions.

Share This Page