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U.S. Senate Appropriations Report Reflects CFS Research Priorities

Discussion in 'General ME/CFS News' started by George, Jul 31, 2010.

  1. George

    George waitin' fer rabbits

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    South Texas
    From the CFIDS Facebook page.

    (sigh) Get out the e-mail address' and sharpen your letter writing skills. Thank you to the CAA for all of their hard work and to CFSAC.


    U.S. Senate Appropriations Report Reflects CFS Research Priorities
    Yesterday at 4:04pm

    The CFIDS Association of America annually submits its requests to the U.S. Congress to expand research and education on CFS and diligently shepherds those requests through the lengthy bi-cameral appropriations process. The U.S. Senate Appropriations Committee just issued its Fiscal Year 2011 report, which includes recommendations made by the Association, as stated below. Language submitted by the Association in collaboration with other organizations through the Overlapping Conditions Alliance (www.overlappingconditions.org) and the Campaign to End Chronic Pain in Women (www.endwomenspain.org) is also included in the report.

    Thanks to members of the Association's Board of Directors, staff and volunteers who did 20 meetings over two days in March to discuss these requests with Senate and House appropriations staff. (See http://www.cfids.org/cfidslink/2010/040704.asp) Thanks, too, to thousands who participated in our 6th Annual Virtual Lobby Day and leaders of the TMJ Association, National Vulvodynia Association and Endometriosis Association who worked with us on May 19 to articulate shared priorities to congressional staff. (See http://www.cfids.org//pain-campaign/launch-event.asp)

    The Senate bill and House bill must be reconciled before going to the president to be signed into law. During election years, it is possible that this process will extend beyond Sept. 30, the end of the fiscal year. Watch for updates here on Facebook and in CFIDSLink.


    Senate Appropriations Bill Report Language for FY2011



    Centers for Disease Control and Prevention:
    Chronic Fatigue Syndrome.-The Committee urges the CDC to follow recommendations made by the CFS Advisory Committee and the 2008 peer review panel to prioritize laboratory efforts aimed at the identification of diagnostic subtypes and therapeutic biomarkers with increasing efforts in viral etiology. Intervention, including vaccination studies, against pathogens with known associations with CFS should be pursued in collaboration with other agencies and investigators to support genetic, genomic and intervention studies. The Committee continues to support efforts to make data accumulated since 1984 by the CFS research program available to outside researchers to maximize the value of this data.

    Chronic Pain Conditions in Women.-The Committee encourages the CDC to build on its previous related epidemiological work to undertake a study of the prevalence, overlapping nature, and shared risk factors of chronic pain conditions which solely or disproportionately impact women, including vulvodynia, TMJ disorders, endometriosis, fibromyalgia, interstitial cystitis, and chronic fatigue syndrome. The Committee further encourages the CDC to educate the public about the seriousness and societal costs of these conditions; make available and promote sources of reliable information on the symptoms, diagnosis, treatment, and overlapping nature of the conditions; and make available information to women with chronic pain about how to communicate effectively with their health professionals about these conditions.


    National Institutes of Health:
    Chronic Fatigue.-The Committee is aware that in October 2009, a group of researchers announced that it had performed blood tests on patients with Chronic Fatigue Syndrome [CFS] and found sufficient evidence of the presence of xenotropic murine leukemia virusrelated virus [XMRV] to suggest a correlation between XMRV and CFS. While the work has not yet been replicated, the reported research warrants further discussion and investigation. The Committee is aware that NIH will host an international symposium on XMRV in September 2010 to address the pathogenesis and clinical and public health implications of the XMRV virus and to obtain input in developing a coordinated strategy for XMRV research. The Committee also is aware that the second State of the Knowledge Conference is being planned by the Trans-NIH Working Group on Chronic Fatigue Syndrome for 2011 and is encouraged that this conference will likely make additional recommendations about future funding opportunities for XMRV and CFS research.

    Overlapping Chronic Pain Disorders.-The Committee again notes the growing body of evidence demonstrating considerable overlap among chronic fatigue syndrome, endometriosis, fibromyalgia, headache, interstitial cystitis, irritable bowel syndrome, temporomandibular joint and muscle disorders, and vulvodynia. These poorly understood and neglected conditions impact millions of Americans and cost the Nation tens of billions of dollars each year. The Committee requested last year that the Director coordinate a trans-NIH research initiative, and the NIH responded that this work would be carried out by the Trans-NIH Working Group for Research of Chronic Fatigue Syndrome [CFSWG]. The Committee is not satisfied with that response, as the scope of the proposed initiative spans well beyond the purview of the CFSWG, and strongly urges the NIH to take a more comprehensive approach to these conditions. The Committee urges the NIH to promptly develop and coordinate, with all relevant ICs, a trans-Institute research initiative to support studies aimed at identifying etiological pathways of these overlapping conditions with the goal of identifying potential therapeutic targets.

    Chronic Pain Conditions in Women.-The Committee notes that up to 50 million American women suffer from one or more poorly understood and often overlooked chronic pain conditions. The Committee urges AHRQ to analyze the healthcare expenditures associated with chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, temporomandibular [TMJ] disorders, and vulvodynia. The analysis should quantify costs associated with the failure to promptly and adequately diagnose and treat these conditions, as well as those incurred by employers due to lost productivity, increased number of sick days and increased disability claims.
     
  2. ixchelkali

    ixchelkali Senior Member

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    Long Beach, CA
    :(:rolleyes::(
    <<sigh>>

    I have reservations about the collaborations with other conditions, such as "chonic pain conditions in women." It sounds like giving them the perfect out to spend ME/CFS research dollars on dentistry studies (again!) because they're related to pain.
     
  3. leelaplay

    leelaplay member

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    And did you notice the title under the NIH section?

    Chronic Fatigue????????

    As the CAA's facebook page says
    I sincerely hope the CAA can ensure that this extremely significant error will be corrected immediately.

    I was happy to see the CAA asking that the CFSAC's recommendations be implemented + that the CDC look for biomarkers, viral etiology etc & to ask teh NIH to continue to explore XMRV.
     
  4. urbantravels

    urbantravels disjecta membra

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    I gotta tell you, though, I am not sorry to see endometriosis on that list. Endometriosis, I haz it. In fact, I was struggling toward a diagnosis of endometriosis for a good six months before I fell under the wheels of the CFS truck, and had a LOT of pain and fatigue from that, so much so that it wasn't at all clear where that ended and the CFS fatigue began. I think it was around October 30, 2009, but damned if I really know.

    There seems to be a high correlation between CFS and endometriosis - it sure as hell seems to me that there may be a connection, but I'm fairly stumped about what it might be. There is some thought that endometriosis may be triggered by some kind of autoimmune process, or other immune dysfunctiion.
     
  5. citybug

    citybug Senior Member

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    They are unhappy with efforts on overlapping pain disorders. They want identifying etiological pathways of these overlapping conditions with the goal of identifying potential therapeutic targets. They already have this for ME/CFS with a retrovirus, but are fine with waiting till 2011 to see if there are any recommendations. Why not fund some research now?

    They should be funding some research on neurotoxicity, immune markers and clinical trials. NIH is only working on standardized testing. Research on the illness has to move ahead or what will they do when everyone starts testing positive and they have no plan?

    It looks like Congress hasn't completed their bill yet. So we can contact them too. It doesn't hurt for them to hear from us all the time.
     

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