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WPI Shut Out of ME/CFS/XMRV Research

Discussion in 'Action Alerts and Advocacy' started by Frickly, Oct 22, 2010.

  1. Frickly

    Frickly Senior Member

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    The National Institutes of Health (NIH) occasionally send out a solicitation for grants made to encourage studies on a particular topic. In 2007 the NIH issued a request for grant applications that will study the etiology, diagnosis, pathophysiology, and treatment of ME/CFS.

    "Chronic Fatigue Syndrome: Pathophysiology and Treatment (R01) --- PA-08-246 --- This Funding Opportunity Announcement (FOA) issued by the Office of Research on Women's Health (ORWH) and co-sponsoring Institutes and Centers (ICs) of the National Institutes of Health (NIH) encourages investigator(s)-initiated applications that propose to examine the etiology, diagnosis, pathophysiology, and treatment of chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME/CFS) in diverse groups and across the lifespan. Innovative applications that address gaps in the understanding of the environmental and biological risk factors, the determinants of heterogeneity among patient populations, and the common mechanisms influencing the multiple body systems that are affected in CFS are encouraged. The NIH is particularly interested in funding interdisciplinary research that will enhance our knowledge of the disease process and provide evidence based solutions to improve the diagnosis, treatment, and quality of life of all persons with CFS. http://grants.nih.gov/grants/guide/pa-files/PA-08-246.html

    The Participating organizations within the NIH include the following with the exception of the National Institute of Allergy and Infectious Diseases who have announced they will not support clinical trials under this Program Announcement. It is apparent from the Components of Participating Organizations, or lack thereof, that the NIHs desired focus for these grants are NOT centered on finding the cause!

    Components of Participating OrganizationsOffice of Research on Women's Health
    National Institute on Aging
    National Institute on Alcohol Abuse and Alcoholism
    National Institute of Arthritis and Musculoskeletal and Skin Diseases
    National Center for Complementary and Alternative Medicine
    National Institute of Child Health and Human Development
    National Institute for Diabetes and Digestive Diseases
    National Institute of Dental and Craniofacial Research
    Office of Dietary Supplements
    National Institute of Environmental Health Sciences
    National Institute of Nursing Research
    National Institute of Neurological Disorders and Stroke

    ■ May 13, 2009 - See Notice NOT-AI-09-042 The National Institute of Allergy and Infectious Diseases (NIAID) will not support clinical trials under this Program Announcement.

    Over the last few weeks there has been growing concern about the lack of funding for research in the area of ME/CFS and XMRV. We have heard several times during the CFSAC Meeting and at the 1st International XMRV Workshop that the reason studies are not being done is a direct result of a lack of interest on behalf of researchers. We have been told that grant applications are not being submitted to the NIH to study ME/CFS and XMRV.

    However, it has recently come to our attention that the Whittemore Peterson Institute has applied and been turned down for a grant in this area of research SIX TIMES since the publication of the Science paper in 2009. In addition 3 collaborators of WPI have also been denied funding. It is an outrage that the Whittemore Peterson Institute, currently our greatest source of hope for real breakthroughs in neuroimmune disease and XMRV is being shut out.

    We would like to encourage every person affected by neuroimmune disease and/or XMRV to contact the National Institutes of Health with your concerns regarding this troubling information.

    Secretary Kathleen Sebelius kathleen.sebelius@hhs.gov

    Francis Collins collinsf@od.nih.gov

    Dennis Mangan dennis.mangan@nih.gov

    Anthony Fauci afauci@niaid.nih.gov

    Thomas Frieden txf2@cdc.gov

    Wanda Jones Wanda.Jones@hhs.gov
  2. illsince1977

    illsince1977 A shadow of my former self

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    Sent an email to all of them, the White House, my senators and congressman.

    In case anyone wants more ammo for their emails, I just looked up DHHS' mission statement:
    I saw this too late to incorporate those exact words in my email, but something tells me this is not the last time I will be forced to write these people. I'm bedridden and unable to take care of myself, but hey - guess I don't count! Just blowing off some steam, sorry! :Retro mad:
  3. Frickly

    Frickly Senior Member

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    There is always tomorrow. I am sending something everyday. I have a numbered list of demands and just change my first paragraph to focus on a different demand each day. I am so mad that the NIH keeps spouting off about how they are doing their best, really encouraging researchers to write grant applications. How they can't help that no one is showing interest in ME/CFS/XMRV research. All the while they are dening applications left and write. I call bull$hit on them all. This is nine applications that we know of that have been denied since the science paper was published. How many more are there? No one with positive xmrv studies or who collaborate with the wpi are going to get funding.
  4. BEG

    BEG Senior Member

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    :victory: Yay! Frickly :victory: You tell it, Girl. Everyone needs to participate in this.

    When patients receive an answer like this to their thank you note:

    Thank you for your notewell do our best to support the biomedical research that will lead to a proper diagnosis and cure for this terrible disease! However, we need more strong applications from universities, hospitals and research institutions! Please help us help you. Thank you for your support

    it's time to send it back to them. Ask for money, ask about the WPI grants, ask why they're requesting sick people to locate researchers from universities, hospitals and institutions (reprehensible). There are many other good points on this thread:

    http://www.forums.aboutmecfs.org/content.php?247-The-Time-For-Action-Campaign-Update#comments

    Thanks for posting, Frickly.
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
  6. BobM

    BobM

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    Here is a missing piece from the original post by the NIH:

    On this point in the post( NIAID will not support clinical trials under this Program Announcement.) the AMENDMENT(listed below),
    Link here: ( http://grants.nih.gov/grants/guide/notice-files/NOT-AI-09-042.html ) Shows Applicants interested in conducting clinical trials are encouraged to consider an NIAID Clinical Trial Planning Grant (R34). I want WPI funded NOW and am working on that as well.

    Thank you

    Bob Miller


    May 13, 2009 - See Notice NOT-AI-09-042 The National Institute of Allergy and Infectious Diseases (NIAID) will not support clinical trials under this Program Announcement.


    AMENDMENT To PA-08-246 (R01) and PA-08-247 (R21) “Chronic Fatigue Syndrome: Pathophysiology and Treatment”

    Notice Number: NOT-AI-09-042

    Key DatesRelease Date: May 13, 2009

    Issued byNational Institute of Allergy and Infectious Diseases (NIAID); (www.niaid.nih.gov)



    Purpose


    The National Institute of Allergy and Infectious Diseases (NIAID) will not support clinical trials under the R01 and R21 Program Announcement “Chronic Fatigue Syndrome: Pathophysiology and Treatment” PA-08-246 (R01) http://grants.nih.gov/grants/guide/pa-files/PA-08-246.html and PA-08-247 (R21) http://grants.nih.gov/grants/guide/pa-files/PA-08-247.html consistent with the previously announced policy (http://grants.nih.gov/grants/guide/notice-files/NOT-AI-05-021.html).



    ***Applicants interested in conducting clinical trials are encouraged to consider an NIAID Clinical Trial Planning Grant (R34), which provides investigators with funds to prepare a) materials NIAID needs to determine a project's feasibility and b) documentation required for eventual conduct of a clinical trial. The program announcement for the R34 can be found at:

    http://grants.nih.gov/grants/guide/pa-files/PAR-06-384.html.

    All other aspects of these FOAs remain unchanged.

    Inquiries

    Dr. Eun-Chung Park, Health Scientist Administrator National Institute of Allergy and Infectious Diseases/ NIH 6610 Rockledge Drive Bethesda, MD 20892-7630Phone: 301-402 0071 Email: EPark@niaid.nih.gov
  7. Frickly

    Frickly Senior Member

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    Bob,

    Of course I missed it. I do resent the fact that you are implying I am a liar and deliberately trying to mislead others. Regardless of the overlooked update, these facts remain unchanged:

    We are being told that the NIH is encouraging researchers to apply for Grants and doing everything they can to help these researchers write strong application requests.

    We have been told by the NIH that they are NOT receiving grant applications due to a lack of interest from researchers.

    The WPI has submitted and been denied for 6 grant requests since the Science paper was published.

    Three WPI collaborators have been denied grants (that makes 9 applications that have been denied, that we are aware of)


    I do not believe my unfamiliarity with the NIH website has changed the main message I am trying to convey in this post.

    I believe, as do others, that the WPI and researchers who have collaborated with WPI are being pushed out of this research. It is incomprehensible and potentially tragic for families like mine who have ME/CFS, Lyme, Autism and all the co morbid "syndromes" that go along with these. The connections between these diseases must be researched and I guarantee that the government is NOT going to do it.

    The next time I make a mistake in a post I encourage you to correct me in a respectful manner or contact me privately rather than suggesting that I am a liar on a public forum. I promise to return the favor.
  8. BEG

    BEG Senior Member

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    Here is a lookup for NIH empoyees giving fax numers: https://ned.nih.gov/search/search.aspx

    Click on the employee name.
  9. BobM

    BobM

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    Frickly, The intent here was to get the Amendment posted, so readers saw the entire NIH piece. I saw the missed part and link and fixed it. Again I wish for there not to be a misunderstanding here. If this came across as being an attack on you or your character that was not my intent. I apologize for that.

    As for NIH grants the ORWH did a workshop to help assist researchers in writting them. See the Link for the
    Webcast http://videocast.nih.gov/Summary.asp?File=14263
    As for WPI grants, I am confused as well. But I am trying to find out why they are not getting funded?

    As for being respectful, if you knew me, you would know that I am and meant no harm. I hope you will accept my apology, as I stated this was not meant to accuse you of anything. Frickly I saw a mistake on the post and added the missing piece in my reply. I would have sent you a link to the missing piece via PM, but I did not know we could PM here. I hope this clears up this issue.
    Bob Miller
  10. Frickly

    Frickly Senior Member

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    Bob,

    Your post did come across as accusing me of deliberately misleading people. I would never do such a thing. I have and will make many mistakes and if being 100% accurate at all times is a prerequisite for advocating for my son then I might as well give up now. However, this is not an option. I will always welcome a heads up when I have made a mistake. It is important that these errors be corrected as quickly as possible.

    I appreciate your apology and I accept it. I do admire all your advocacy efforts and dislike these sort of confrontations.

    Take care,



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