The Solve ME/CFS Initiative 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 issued its Fiscal Year 2011 report on July 30, 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 and the Campaign to End Chronic Pain in Women 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. 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.
Appropriations bills are the legislative means by which Congress apportions money to the executive branch agencies, providing large-scale budget divisions to the agencies as spending plans. Very rarely does Congress dictate how much has to be spent on certain projects within division or branch levels. The report that accompanies the bill spells out Congressional priorities for funding priorities. The agencies generally respect the report language and feel accountable to it, and sometimes begin implementation before the bill makes it through the full legislative process.
Report language for CDC for its CFS research was directed to the National Center for Emerging and Zoonotic Infectious Diseases, which includes the Chronic Viral Diseases Branch, where the CFS program is housed, and the Blood, Organ and Other Tissues Office, which coordinates blood safety issues. (XMRV testing is being conducted by a team in the National Center for HIV/AIDS, Viral Hepatits, STD and TB Prevention.) Report language for NIH was placed in the section related to the Office of the Director, “Multi-Institute Research Initiatives.” This is helpful, given that XMRV research has engaged intramural programs within the National Cancer Institute, the National Health, Lung and Blood Institute and the NIH Clinical Center.
The House of Representatives did not take action on its Appropriations bill before the August recess. The Senate bill and House bill must be reconciled before going to the president to be signed into law. During election years, it has become routine for this process to extend beyond Sept. 30, the end of the fiscal year, requiring Congress to pass “continuing resolutions” to fund government programs until the appropriations process is complete. 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.
*Note: This is actual the text from the Committee; only “material differences” will be considered at the conference between Senate and House appropriators. According to staff, making a revision to include “syndrome” won’t rise to the level of material since CFS is used in the paragraph.August 3, 2010