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Plea from Dr Bell to donate to the WPI

Discussion in 'Action Alerts and Advocacy' started by fred, May 2, 2010.

  1. Jessrose21

    Jessrose21

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    Farmington, NY
    I sent in my $10! I know that my mother, grandmother, aunt, father, and several friends will donate, as well. I'll update as soon as I know how much. This is sort of like the internet version of a telethon. Love to watch those numbers go up!
     
  2. jace

    jace Off the fence

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    England
    I send $10 a month to the WPI too.
     
  3. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    I sent in $50.00 last week.
     
  4. Frickly

    Frickly Senior Member

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    Thank YOU!

    Thank you Jessrose, Jace and Gracenote! :victory:

    $3,072.00 Total In One Time Donations!
    $280.00 Total In Recurring Monthly Donations!

    These are only the numbers I could add up as some did not state how much they will be donating.
    :D:D:victory::victory:
     
  5. michal

    michal

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    Hi
    I just red all peoples reactions in this thread and it gave me a lot of motivation for the donation. I just gave throught WPI (I dont have facebook yet) web side 600 USD. At first, I didnt want to write it here but when I red throught this thread I got impression that maybe this information can give us a bit more optimisme in our fight. I was lucky I couldnt work for 2 years but now I recovered and I was able to start to work at home some hours a day. I will try to donate regulary, when I will earn some money - just I dont know now, if it will be each month.
    Thank you to all people who donate to our case - especially thank to the people who cannot work, who have no money and live almost like a homeless and with this conditions they are still able to donate some money - you are the heroes.
    Now, when the situation with funding for CFS research from public funds is still bad, it has to come from our side (from patients) to create the funding even when we dont have much money. we have to save our own lifes. hopefully the situation will change with the time and we will get more public funds for CFS research.
    does someone have an information if it helps to WPI the donations from patients and if they are able to create more research programs or is their situation still so bad?
     
  6. Frickly

    Frickly Senior Member

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    Hi Michal

    Thank you so much for your donation. I agree that we must do everything we can to help ourselves right now. I do hope it will change soon. With regard to your question, I think WPI must receive government funds. Otherwise, it will be a very long time before we find an answer. Patients cannot support this kind of research on our own. That being said, I beleive every penny we raise makes a difference and will keep things moving forward, however, slowly.

    Take care,
     
  7. Frickly

    Frickly Senior Member

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    Thanks Michal!

    $3,672.00 Total In One Time Donations!
    $280.00 Total In Recurring Monthly Donations!

    These are only the numbers I could add up as some did not state how much they will be donating.
    :D:D:victory::victory:
     
  8. Dolphin

    Dolphin Senior Member

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    Thanks Michal - when one person gives, it helps us all.:Retro smile:

    Probably most of the patients who donate monthly to the research fund in my country don't work (although sometimes their spouse works) - so often the money is coming from disability money, either insurance or State. Some people are in worse positions than others - for example, I live with my parents so it's not so bad. Saying that, it's frustrating the amount of people who either don't give at all or have only given very occasionally/once or twice.

    We don't want progress, we want it asap so it'd be good if more people tried to support the cause by raising money in some way e.g. either donating or encouraging family/friends to donate or patients fundraising and/or encouraging family and friends to fundraise.
     
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    Has anyone questioned Bell as to the NIH lady's accusations that his letter is incorrect?

    Tina
     
  10. Lesley

    Lesley Senior Member

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    Southeastern US
    Dr. Bell's latest Lyndonville News it out, and he comments on it:

    The whole newsletter is worth reading. It's here: http://www.davidsbell.com/LynNewsV7N1.htm
     
  11. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    I like Dr. Bell's next paragraph:

     
  12. Dolphin

    Dolphin Senior Member

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    Mine cuts out after:
    If I convert it to plain text I see it.

    I told them but it might be useful for other people to tell them also.

    Bye,

    Tom
     
  13. lululowry

    lululowry Senior Member

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    Athens, Georgia
    I donated $50. $10 for me - and $10 for my husband and each of my kids.
     
  14. rebecca1995

    rebecca1995 Apple, anyone?

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    Frickly, put me down for a $10 per month recurring donation--in honor of Dr. Bell!

    :victory::victory::victory::Retro smile::victory::victory::victory::Retro smile::victory::victory::victory:​
     
  15. Frickly

    Frickly Senior Member

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    Thank You lululowry and Rebecca!

    $3,722.00 Total In One Time Donations!
    $290.00 Total In Recurring Monthly Donations!

    These are only the numbers I could add up as some did not state how much they will be donating.
    :D:D:victory::victory:
     
  16. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    Yes, I saw that. Ms. NIH did not complain at the request for funding. She complained that Bell stated: "as I understand it, no federal grants or funding has been forthcoming," which she said is inaccurate.

    Tina
     
  17. citybug

    citybug Senior Member

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    NY
    I think ms NIH was talking about the one grant which was given in Sept before the Science article. Which is $320,000 a year for 5 years and covers specific things (immune system?). You can see it on the NIH list of grants. I found it very upsetting-- more wait and see, expecting xmrv to go away. Bell was saying we haven't heard of anything more coming out from CDC or NIH.
    I want to write to her and other members about all wpi is doing. Can anyone help me with list? I want the NIH to start focusing on treatment for CFS and WPI is the only place in the world doing the work. Unless Arup group is working on treatment? I'm sure they need funding too.
    I've heard so far WPI is
    Developing antibody and western blot testing for xmrv
    identifying and gene sequencing 6 strains
    testing lyme, fibromyalgia, gws, atypical ms, autism patients
    working with blood bank committee
    providing samples and primers? to CDC, blood bank studies, pharmaceutical, and other studies
    studying post transfusion cfs patients
    developing testing for levels of virus present
    developing drug studies for treatment of xmrv
    looking at families with multiple xmrv-related illnesses
    testing more cfs patients with multiple xmrv tests
    with 7 people in the picture of their lab.
     
  18. citybug

    citybug Senior Member

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    besides looking at the virus in China
    fielding patient, practitioner and virologist questions

    shouldn't the CDC or NIH being doing some of this?
     
  19. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    good point, Kdp, maybe Bell was talking about investing in XmRV research at WPI after the Science article, whereas she was referring to funding to WpI in general.

    But I don't think this is correct: "WPI is the only place in the world doing the work."

    Many others are researching CFS and treatments for XMRV.

    Tina
     
  20. citybug

    citybug Senior Member

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    I know there are a lot of researchers looking at XMRV in cancer cells that might apply, but who else looks at XMRV in CFS patients? (besides the failed studies). The study of drugs would be directly related. Which studies do you mean?
     

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