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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. Frickly

    Frickly Senior Member

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  2. Frickly

    Frickly Senior Member

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    Thanks Hensue!

    $1552.00 Total In One Time Donations!
    $220.00 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:
  3. Frickly

    Frickly Senior Member

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    A note from WPI!

    "Thank you to Dr. Bell, Friends of WPI , Cure 4 ME ,XMRV Global Action and Blue Ribbons for ME/CFS for all of your support and donations. Since May 2nd we have raised 13,000 dollars to go towards biomedical research of these neuroimmune diseases. We could not do this without each and everyone of you donating and creating awareness."

    We are making a difference. Lets keep it up! :D
  4. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    April 27, 2010







    Mr. James F. Hall

    280 McKendree Lane

    Myrtle Beach, SC 29579-6399



    Dear Mr. Hall:



    Thank you for contacting me about funding for chronic fatigue syndrome research in the upcoming Federal budget process. I appreciate having the benefit of your views and welcome the opportunity to respond.



    Congress has long held that scientific experts are in the best position to determine research priorities and does not tie specific dollars to specific efforts. However, I have long been a proud supporter of efforts to increase funding for the National Institutes of Health (NIH) and Centers for Disease Control (CDC).



    As we begin to work on the budget for Fiscal Year 2011, I was dismayed to see President Obama's budget propose a meager $1 billion increase for the NIH budget this year, increasing from $31 billion last year to $32 billion this year. You can be sure that I will be working to increase this amount. Doing so is the only way to ensure that the Federal government is effectively combating chronic fatigue syndrome. Your support in this endeavor is greatly appreciated.



    Again, thank you for contacting me and I look forwarded to addressing any other issues or concerns that you may have.


    Sincerely,

    Henry E. Brown, Jr.
    Member of Congress
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    What a joke.

    Instead of just typing "CFS" into the "disease name here" field on this form letter macro, the rep's office should have wrote:

  6. starryeyes

    starryeyes Senior Member

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    That's funny Justin.
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    blah, blah, blah

    Tina
  8. oerganix

    oerganix Senior Member

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    $89,000 per person for malaria and $5 person for CFS, in NIH research money



    Incredible but typical! He worked in a little jab at the President, told you he didn't want politics involved in science, but is a member of the party that promotes discrimination against women in reproductive health !!!!!

    Since he says he "looks forward to addressing any other issues or concerns, blah, blah,blah...", I'd write him back and point out that CFS affects/infects at least a million Americans, or 10 million if you include Reeves Disease, and it's slated to get only $5 million in NIH research money next year, the same as this year. AND the ONLY illnesses getting LESS funding are Pick's Disease, hay fever and vulvodynia!

    Malaria, affecting only 1300 foreign traveling Americans last year, will get $116 million in research money next year! The cause, treatment and prevention of malaria are already known, unlike the cause, treatment and prevention of CFS! These budgets should be reversed!

    $116 million for CFS research; $5 million for malaria!

    That works out to over $89,000 per person for malaria and $5 person for CFS. Or fifty cents per person, using Reeves Disease's definition (empirical definition).

    And nobody is actually GETTING malaria IN the US. And we send millions in foreign aid to those countries that do have a malaria problem within their borders. Right, no politics in health/science research.
  9. Robin

    Robin Guest

    From WPI facebook page:

    Nice work, everyone!
  10. Frickly

    Frickly Senior Member

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    Lets keep this Going!

    $1552.00 Total In One Time Donations!
    $220.00 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:
  11. citybug

    citybug Senior Member

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    It is so hard for me too. I think we have internalized some our treatment and need to speak out. I put Dr. Bell's letter on facebook last week and am emailing this letter I was working on. Jace and Frickly's were more to the point! I guess I'm expecting doubters and getting all my education in at once.

    This and similar letters are being circulated by patients from published studies and interviews.

    WE NEED YOUR HELP! Funding is urgently needed to pursue research on XMRV. Please donate to Whittemore Peterson Institute for
    the research they are doing on this recently discovered human retrovirus.

    Please forward this letter fot anyone you know with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Fibromyalgia,
    chronic Lyme disease, atypical Multiple Sclerosis, Gulf War Syndrome, aggressive prostate cancer, Autism spectrum disorders
    and overlapping conditions and donate if you can.

    XMRV was found in a majority of CFS/ME patients in a study published in October by the Whittemore Peterson Institute with
    the National Cancer Instite and Cleveland Clinic (1). That study found XMRV in 67% of CFS/ME patients and 3.7% of healthy
    volunteers. Since the study the Whittemore Peterson Institute is finding XMRV in 85% of CFS/ME and about 35% of overlapping
    conditions (7). XMRV is the third human retrovirus. The others are HTLV and HIV. Feline leukemia virus is an example of an
    animal retrovirus.

    A few strains of XMRV have been found that may have different effects. The virus may work with immune defects,
    co-infections or as cause of these conditions. A study by University of Utah and Emory University/Veterans Affair Medical
    Center has found some retroviral drugs developed for HIV may be effective treatments for XMRV (5).

    Much research remains to be done. Possibly treatment could be quickly available. Many patients are waiting to be included
    in studies and to try retroviral therapy.

    Here is the donation button http://www.wpinstitute.org/

    Without a doubt research into XMRV will advance research in these diseases. The numbers of high level retrovirologists
    working on XMRV worldwide to date is very small. Testing for blood bank studies is being developed and it is unknown when
    federal organizations will focus on treatment.

    CFS/ME is a very underfunded disease. At 5 million dollars a year there are very few diseases with less funding in the
    entire NIH budget (6). There are 1 to 4 million patients in the U.S. with CFS/ME alone. No new money has been allocated for
    this research through 2011. Historically the CDC and NIAID (departments of the NIH) have not invested in biological research
    in this disease. We need to work together with other people affected by this virus.

    Many people with this illness are able to work part-time or full time with heavy costs to other parts of their lives. It
    is estimated that 25% are severely ill. Many have been bed bound or apartment bound for many years and need treatment now.
    Many young people get this illness while in school or at the start of their careers. We are too ill to do traditional
    fundraising events. Please see Lauren's story (2).

    Please donate to Whittemore Peterson Institute for the research they are doing. If a large number of people give $10 or
    whatever you can afford it will make huge difference.

    Here is the donation button http://www.wpinstitute.org/

    Please write your congress people and senators to increase funding for XMRV research in the U.S. and to fund Centers of
    Excellence for research in neuro-immune diseases like the WPI and the proposed New Jersey Neuro-Endocrine Immune (NEI)
    Center, for CFS/ME, Lyme, Fibromyalgia and other disorders.

    Outside U.S. please write to your representatives and your top research institutes.

    May 12 is CFS/ME Awareness Day.

    1) Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome October 2009
    http://www.cancer.gov/newscenter/pressreleases/CFSxmrv

    2) Lauren's story
    http://www.youtube.com/watch?v=LvweCk44WHs

    3) Nevada newsmakers Annette Whittemore and Dr. Judy Mikovits short video interview
    http://www.youtube.com/watch?v=mzIdpMUunHE&feature=related

    4) Dr. Bell's Personal Appeal for Donations to WPI
    http://www.wpinstitute.org/news/docs/bell_fundraising_050110.pdf

    5) Powerful HIV drugs inhibit retrovirus linked to prostate cancer, chronic fatigue syndrome
    http://labspaces.net/102911/Powerfu...us_linked_to_prostate_cancer__chronic_fatigue article
    http://www.plosone.org/article/info:doi/10.1371/journal.pone.0009948 study

    6) NIH funding levels
    http://report.nih.gov/rcdc/categories/

    7) Dr. Mikovits Q and A with International Association for CFS/ME
    http://www.iacfsme.org/Portals/0/pdf/IACFS-Attachment4-April2010.pdf
  12. eric_s

    eric_s Senior Member

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    In the meantime i have donated 50 USD my parents will donate too (i'll ask them for 100 USD now and maybe more later). As long as we don't know about XMRV's role in CFS and the WPI is doing good work, i think i will donate each month. And i will probably ask some more family members and some friends.
  13. Frickly

    Frickly Senior Member

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    Good for you kdp! I think the "silence" we receive when revealing something so personal and important to us is very difficult. Eric, thanks so much for your donation and asking others to help! My dad donated last night. :)
  14. Frickly

    Frickly Senior Member

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    Thanks Eric!

    $1552.00 Total In One Time Donations!
    $270.00 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:
  15. eric_s

    eric_s Senior Member

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    You're welcome Frickly. You may also book the other 100 USD (one time), i guarantee for them, they will arrive next week.
  16. Dolphin

    Dolphin Senior Member

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    I think people are wrong to think it is governments' responsibility to pay for the necessary research and isn't the responsibility of patients to raise the money (which can also be done through fund-raising of various kinds).

    I imagine this comes from the attitude that it is the governments' responsibility to pay for healthcare, which it largely is in many/most European countries and some other countries (not so much so in the US).

    However, the amounts that governments (outside the US) have for research budgets tend to be relatively small, when one looks at the areas it covers, both basic biological research, more generally medical research e.g. on aging and then the large number of conditions that are out there.

    The only country that really has really big research budgets for specific conditions is the US (I think this is partly as a result of the fact that they don't provide much to the healthcare costs of a lot of the population - middle and upper socioeconomic groups - but funding research helps everyone).

    If one takes Multiple Sclerosis in the UK, the Medical Research Council was giving around 2m to research per year when I looked at it a few years back. The MS Society was giving 11-13m a year to research.

    Individual governments especially outside the US don't have a responsibility to find the cure for every illness out there while they have a responsibility to insure people sick get reasonable health and social care.

    Government-funded research may chip away at the problem. But patients don't just want results in decades or a century in time - they want progress quicker than that.

    Also a lot of government-funded ME/CFS research might not be exciting from a patient point of view e.g. epidemiological research which counts the number of people with the condition or all sorts of psychological and psychiatric research. So one has no guarantee that more of it will necessarily help the cause that much.

    So anyway all of this is to say that I don't think we should fall into the trap of saying patients have no responsibility on the issue, it's only the responsibility of the government. I have seen plenty of people spend well over ten thousand dollars on their illness over the course of the illness but still claim they have no money to give to research (but continue to spend money on treatments). What I have suggested before http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0411D&L=CO-CURE&P=R3124&I=-3&X=4C0435473F6F0771FA is that it would be good if people gave at least 1% of what they spend on the illness - this adjusts for people's different financial circumstances/disposable income and how important the illness is for that person.
  17. Dolphin

    Dolphin Senior Member

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    The ME/CFS Pocket Money Research Fund http://www.pocketmoneyfund.org/

    ME Research UK http://www.meresearch.org.uk/

    The HHV-6 Foundation http://www.hhv-6foundation.org

    The CFS Research Foundation http://www.cfsrf.com (can donate through: http://urlcut.com/donatetocfsrf i.e. http://www.cafonline.org/apps/charities/charityprofilelink.aspx?MainId=64337
    &SubId=146003&Source=CAF&CharityName=CFS+Research+Foundation )

    Alison Hunter Memorial Foundation http://www.ahmf.org

    National CFIDS Foundation http://www.ncf-net.org/

    Everyone has their favourites so I think it'd be better if there was no criticism of other funds on this thread.
  18. eric_s

    eric_s Senior Member

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    Yes, i agree, there is a fundamental difference between the USA and Europe when it comes to how people see the role of the individual citizen and the role of the government (or the state, how people here usually say). In my country, Switzerland, it's a bit different compared to countries like France or Germany, we've never had a tradition of a strong central government and people here believe a bit more in having to be able to care for themselves. If that's good or not is another question.

    To be honest, i have no idea how the numbers are. What percentage of research money comes from the government and what percentage comes from private sources. Neither in total, nor for certain conditions. I guess it will also very a lot between certain conditions.

    Of course it's good if people donate. I'm doing it myself. But certainly a lot of responsability also lies with people in governments or public institutions. Because even apart from the money, you need personnel and technical assets to do research. Especially in Europe a lot of that is to be found in universities, which are generally public corporations. And unless private donors can also create research institutions (which they can, as in the case of the WPI, but i think this is something that hardly exists in Europe) they will still have to rely on governments or at least people employed by public institutions. So i think we need them either way. But all the additional money helps of course.

    What i wanted to say is this. The people affected by a condition are usually the least capable group to donate. They often can't work and if they can, they will probably not be able to make much more than what they need to get by. So they will have to find other, more potent donors, in addition to themselves, to be able to really move things.
    And they should be careful. Once again, it's good to donate, but i would not want anyone to be in a situation, where they get into serious troube, because they gave away something that they would have needed for themselves. If you're healthy you can easily handle some problems. If you can't afford to repair your car or pay the fuel or pay a taxi, you can walk, no problem. With us it's different. If you can't pay your electricity bill or your rent and they cut you off from electricity or you lose your apartment or house, a healthy person can handle this, for someone with CFS, it might be life threatening. So even if it's important to donate, i think people have to make sure that they can take care of themselves first and then see what is left to make a donation.

    Me myself, i hardly spend any money on doctors or treatment. I've never had any form of treatment because i was not aware of any treatment that might help. And so it also does not make sense to go see a doctor often. I get a check up about once a year to make sure everything is fine and that's about it. If i see a doctor apart from this, it's mostly because i have to so to calm my family or to get a paper for government, university, military etc.
    And in our health care system we are forced to pay for insurance, so i have to pay that anyway, no matter if i go see a doctor or not.

    But i agree, we as individual persons should take responsability, of course. It's never good to just wait for someone to fix things for you, this will put you in the position of a child or someone unfree.
  19. Frickly

    Frickly Senior Member

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    Thanks to you and your family Eric!

    $1652.00 Total In One Time Donations!
    $270.00 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:
  20. flybro

    flybro Senior Member

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    pluto
    is this right paypal address for WPI donation

    dblades@wingfieldnevada.com

    could someone confirm that this is the correct email addy for paypal WPI donation.


    Thanks

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