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Frequently Asked Questions About the CFIDS Association of America
With the intense interest in XMRV and related developments, several new online discussion forums have been created and participation in existing ones has grown. Within our existing resources, we try to keep up with the rich, informative dialogue. In response to questions posed on our Facebook page, in discussion forums and through e-mail, postal mail and phone calls, we’ve posted this Association FAQ page. We’ll update it regularly to reflect issues being raised in the dynamic community dialogue.
RESEARCH
ADVOCACY
EDUCATION AND COMMUNICATION
STRUCTURE AND FUNDING
RESEARCH
What are the Association’s priorities for its research program and research funding?
In November 2007, the Association announced a major expansion of its internal research capacity when systems biologist Dr. Suzanne Vernon joined our staff as scientific director. Our board of directors evaluated our strategic direction and established a new focus for our research program: to build, support and link a critical mass of innovative and credible researchers focused on early detection, objective diagnosis and effective treatment and to create, identify and leverage new private and federal funding sources and opportunities for CFS investigators.
In March 2008, we issued a request for applications and reviewed 24 responses from research groups around the world for scientific and strategic merit. We announced funding for six innovative studies in November 2008 and in January 2009 we initiated the first formal CFS research network. The network established a stronger foundation with the Banbury meeting held in partnership with the National Institutes of Health (NIH) in September 2009. We’re now working with the Biomedical Informatics Research Network an NIH-sponsored initiative, to develop the infrastructure to support the participation of multiple sites and investigators in pooling data and developing best practices and standard operating procedures to bring greater cohesion to the field of CFS research. We have also joined the Genetic Alliance, a coalition of more than 600 disease advocacy organizations. We now have access to its resources that enable advocacy organizations to be more effective research-support organizations.
To expand the pool of funds available to support CFS research, in 2009 we responded to federal funding opportunities made available under the American Recovery and Reinvestment Act (ARRA). Competition for these funds is fierce, with some announcements drawing up to 10 times as many applicants as awards. We haven’t been successful yet, but we have additional proposals under development and will resubmit some of the earlier applications with enhancements suggested by the reviewers.
With these activities under way and the promising XMRV discovery, there has never been greater potential for accelerated progress in CFS research. Read more about our research program.
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Did the CFIDS Association deny research funding to the Whittemore Peterson Institute for XMRV research?
Like most grantmaking organizations, our research policies preclude us from disclosing details about studies that were not approved for funding. This preserves the applicant’s ability to submit the study to another institution or to revise and resubmit on another round. It is possible to state that at the time of the Association’s most recent Request for Applications (March 2008) there were no applications on the topic of XMRV and CFS.
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What is the Association doing to foster research on XMRV?
Since Oct. 8, 2009 when the first report linking XMRV and CFS was published in Science, the Association offered its sincere congratulations to the Whittemore Peterson Institute, referring to the discovery as “landmark” and “game-changing.” Our scientific director, Dr. Suzanne Vernon, began immediately fielding inquiries from researchers interested in pursuing this promising research, linking laboratory researchers with qualified CFS-expert clinicians. We emphasized the need for true replication studies to repeat both the laboratory methods and the patient selection used in the Science study, although this information is still not readily available to other groups based on the publication, its supplement and information on the WPI website. Early on, the Association was criticized for placing emphasis on the characteristics of the CFS patients and healthy controls included in the WPI cohort. The absolute importance of the selection criteria has since been reinforced in presentations made by experts including retrovirus experts Dr. John Coffin and Dr. Joseph DiRisi study author and pioneering clinician Dr. Daniel Peterson, and clinical researchers Drs. Nancy Klimas and Lucinda Bateman. Now, with recent reports from U.K. researchers who failed to find evidence of XMRV in their patient cohorts, the various methods of selecting CFS patients has come into sharp focus.
Suzanne has been appointed to the Department of Health and Human Services Blood XMRV Scientific Research Working Group and CEO Kim McCleary serves an expert on the AABB (formerly the American Association of Blood Banking) Interorganizational Task Force on XMRV. Confidentiality agreements signed as a condition of service on these committees preclude us from providing regular updates, but meaningful progress is being made and more information should be made available soon.
The Association has also done its best to catalog evolving news about XMRV and to explain the significance of new developments, with articles like “Xplained” and the analyse of the two U.K. study. In an environment marked by multiple competing interests and ample rumor and speculation, the Association has tried to steer a steady course to provide the patient community with solid information. We sought immediate guidance from the National Cancer Institute, a collaborator on the Science study, about precautions CFS patients should take, and we assembled recommendations from experts on the delicate issue of commercial testing for XMRV. We regularly update our XMRV resources page and send out “breaking news” through various traditional and social media communications channels. As new information becomes available, we will assess each new development on its own merits and present an informed viewpoint. Some of the developments may be disappointing, but only rigorous science will advance true understanding of the cause of and treatments and cure for CFS.
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How was the Association able to respond so quickly to the PLoS ONE study by Erlwein, et al. dated Jan. 6, 2010?
A BBC report about the XMRV study by Erlwein et al., was posted online on Jan. 5 at 18:21 GMT (1:21 p.m. EST), alerting the public to the publication. PLoS ONE, an online open access journal, posted the paper on Jan. 5 sometime before 5:30 p.m. (EST). Suzanne D. Vernon, PhD, our scientific director made a thorough, but swift, analysis of the study and its conclusions. Since publication of the Science study by Lombardi, et al., the Association has urged investigators to prioritize a replication study that utilizes the same patient selection criteria and laboratory methods as Lombardi et al., and the PLoS ONE paper failed on these measures. Staff worked quickly to share Dr. Vernon's analysis with the community using our CFIDSLink and Grassroots Action Center mailing lists and Facebook and Twitter. Our press release was developed with assistance from professionals at B&D Consulting and was distributed to media outlets in the U.S., England and Ireland on Jan. 6, 2010.
The Association respects and complies with journal embargo policies. Each new study about XMRV in CFS will be evaluated on its own scientific merits and we will continue to provide updates, analysis and response as new information becomes available.
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ADVOCACY
What is the Association doing to combat the changes to the DSM-5 manual that affect CFS?
The proposed DSM changes (www.dsm5.org) were posted on Feb. 9, 2010 and the public comment period is open through April 20, 2010. Rather than act hastily, we need to understand all the factors involved with these proposals and how to most effectively influence the final decisions. This will require consultation with professionals who have expertise in the processes employed by the American Psychiatric Association and World Health Organization to institute changes that affect ICD coding and clinical care. We have a tradition of being deliberate and thorough in our actions that we intend to uphold.
Validation of biomarkers for CFS would substantially reduce the impact of the proposal to create a category of "chronic somatic symptoms disorder." Validating CFS biomarkers is our top priority.
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Is the Association involved in lobbying efforts in Washington, DC?
Nonprofit organizations are limited in the ways they can engage in “lobbying” as it is technically defined, but the Association has been involved in representing the interests of the CFS community on Capitol Hill since 1992. The focus of these efforts is to create, identify and leverage new private and federal funding sources and opportunities for CFS investigators and to influence lawmakers and policymakers to elevate CFS as a public health priority by validating the burden of illness imposed by CFS in venues where national policy is made and executed. In 2009, the Association conducted a competitive bidding process for its government relations work. We engaged B&D Consulting to increase federal funding of CFS research and make CFS a higher public health priority. This includes holding the federal health agencies (like CDC) accountable for their CFS programs (or lack thereof). Read more about our public policy program and more about our work with B&D Consulting.
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What is the Association’s position on the CFS research program at CDC? Do you support the CDC’s empirical definition of CFS?
The Association has been very public in its criticism of the CFS Research Program at CDC. You can read a summary of our recent efforts. The Association does not support use of the CDC’s empirical definition of CFS in federally funded research and has repeatedly urged that CDC discontinue selecting CFS cases for its studies using these guidelines. The Association has never funded any research based on the empiric definition, nor has any education supported by the Association been based on the empiric definition. Review the Association’s applicant research guidelines for defining cases.
With the announcement by CDC that the CFS Research Program is under new leadership (as of Feb. 14, 2010), we are encouraged about expanded opportunities for collaboration and progress toward shared goals. We will continue to insist upon rigorously conducted CFS research regardless of who manages the program at CDC.
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Is the Association advocating for testing of the blood supply for XMRV?
Yes. Suzanne Vernon, PhD, our scientific director, is a member of the Department of Health and Human Services Blood XMRV Scientific Research Working Group. CEO Kim McCleary serves on the AABB (formerly the American Association of Blood Banking) Interorganizational Task Force on XMRV. Read more about the HHS-led efforts. Confidentiality agreements signed as a condition of service on these committees preclude us from providing regular updates, but meaningful progress is being made and more information should be made available soon.
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Why doesn’t the Association have a seat on the federal CFS Advisory Committee?
Appointments to the CFSAC are made by Secretary for Health or his/her designee. In September 2009 nominations were sought by the Department of Health and Human Services to replace six of the 11 members whose terms expired on Jan. 3, 2010. The Association nominated seven highly qualified individuals, including two members of our Board: Bruce Allshouse and Christoph Bausch, PhD. View our nomination letter. In addition, Kim McCleary has attended every CFSAC meeting and every meeting of earlier configurations of this advisory body since it was formed in 1993, usually presenting testimony or making invited presentations (when she was not serving as a member of the committee). We have worked to make the meetings more accessible to the patient community and in May 2009, for the first time the full proceedings were webcast and archived for viewing later. We also strive to provide useful and timely summaries about the meeting and to provide ways for individuals to support the committee’s recommendations through our Grassroots Action Center. View past meeting summaries and respond to the current advocacy alert.
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Why doesn’t the Association help individuals, like the family of Ryan Baldwin, in their legal actions arising from misunderstanding about CFS?
The Association has long maintained a policy of not becoming involved in individual CFS patients’ medical care or legal proceedings, even when requested to do so. In some cases this policy is very difficult to uphold due to the urgent nature of the hardship being suffered, as in the Baldwins' situation. However, the Association lacks the medical or legal expertise to ascertain, review and evaluate the circumstances and records that would be required to make sound judgments about which situations merit investment of scarce resources. Proceeding without appropriate medical or legal guidance would create a precedent for action that could threaten the Association’s ability to serve the community as a whole through the research and federal policy programs that are consistent with its mission. The Board most recently affirmed this policy in the spring of 2009.
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Did the Association stop Congress from voting “yes” on a name change for CFS?
The short and the long answers are both “no.” Short answer: Congress doesn’t name diseases and it has never proposed or taken a vote on the name for chronic fatigue syndrome. Names for diseases, conditions, illnesses, bacteria, viruses, etc. generally arise from the process of scientific discovery and scientific/medical consensus.
The last formal discussion of the name of CFS by a government body occurred by the Department of Health and Human Services (DHHS) CFS Advisory Committee at a meeting on Dec. 8, 2003. At that meeting, the Name Change Working Group formed by DHHS to explore alternative names presented a proposal suggesting identification of a condition somewhat broader than CFS called “neuroendocrineimme dysfunction syndrome” (NDS), with numerous subgroups fitting under this larger umbrella term. In response to this proposal, the CFSAC, chaired by Dr. David Bell, released a statement indicating that “chronic fatigue syndrome” is a poor name, but recommended that a change to another name should occur only when there is a better understanding of the pathophysiology of the illness. The statement continued, “Current efforts should be increased in the area of understanding illness subtypes which in itself may lead to a more appropriate name. Furthermore, the disrespect experienced by patients from both general public and medical community should be aggressively addressed.” The CFSAC passed this recommendation with a unanimous vote, although Dr. Charles Lapp abstained due to his participation as a member of the Name Change Working Group. Association President & CEO was also a member of the Name Change Working Group, although she did not serve on CFSAC at the time. Several other advocates were invited from outside the CFSAC to serve on the Name Change Working Group as well.
Because of the importance of this issue to the CFS community, since 1998 the Board of Directors has maintained authority for setting and communicating Association policy on the name change. You can learn more about the Association’s involvement in various name change efforts over the years at http://www.cfids.org/advocacy/name-change.asp.
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EDUCATION AND COMMUNICATION
Why hasn’t the Association launched a physician education program about XMRV?
As Dr. Bateman stated during the Jan. 18 webinar we hosted, more research is needed to understand the clinical implications of XMRV. Only three labs in the U.S. currently offer XMRV testing, and results may not agree (even for the same patient). Antiretrovirals haven't yet been tested in CFS patients for safety or effectiveness. She suggested it might take a little more time (and data) before doctors can really do much with info about XMRV. However, last year the Association worked with Medscape on a continuing education unit about diagnosis and management of CFS that 31,948 medical professionals took for credit and nearly 180,000 used for reference. Dr. Bateman provided case studies and review of the Medscape materials. She is a terrific educator and gives lots of talks to her doctor colleagues about fibromyalgia and CFS.
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I haven’t received an issue of the CFIDS Chronicle since January 2009? What happened to it?
As announced in the winter 2009 issue of the Chronicle, the last edition published, the magazine format of the Chronicle had become too expensive to produce, print and mail and many readers had indicated a preference for electronic news that came more frequently. We have published two issues of a new newsletter style print publication, SolveCFS: The Chronicle of the CFIDS Association of America, and the mailing list for our monthly e-newsletter, CFIDSLink, continues growing. We update our Facebook page daily (and sometimes multiple times a day) and have also begun a series of webinars on high-interest topics to serve the information needs of our supporters and the CFS community. We will continue to assess and improve the ways we serve the diverse interest of people who care about CFS and the work of this organization.
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STRUCTURE AND FUNDING
How much are members of the board of directors paid, and how many directors are there?
Members of the Association’s board of directors are (and have always been) unpaid volunteers. The size of the board varies slightly from year to year (14 in 2009; 15 in 2010). Seven of the current directors have CFS, ranging in severity from complete disability to being fairly high functioning. The other eight directors are deeply connected to CFS through family members, close friends and professional endeavors. Kim McCleary, our chief executive officer, has a seat on the board, a common practice among nonprofit and corporate boards. With 19 years of service to the organization, she provides important institutional memory and continuity. Meet the current board members.
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How many staff do you have? Are they paid more than other people working in nonprofits?
The Association’s staff is just eight full-time people, working from very modest office space in Charlotte. Two of our staff members, CEO Kim McCleary and chief financial officer Kris Hopkins, have been with the Association for 19 years and three others have 10 years of service or more. This is unusual for the nonprofit sector, where turnover can be high. This longevity is one of the Association’s assets and it provides our staff with a deep understanding of the history and the challenges of CFS and the movement. Each year, a committee of the Board evaluates the performance and compensation of the chief executive officer. Our annual audit by an outside firm includes a compensation review according to market and sector norms. The compensation levels paid to our staff members are below regional and sector norms. Meet our current staff members.
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Why did the Association accept funding from CDC to do physician education and public awareness?
There are numerous models for nonprofit organizations to raise the funds necessary to pursue their missions, and seeking federal contracts is a very common source of nonprofit funding. In 2001, after the CDC agreed to restore the $12.9 million in CFS funds that had been diverted to other programs between 1995 and 1998, the Association’s Board of Directors made the decision to compete for contracts that CDC was issuing to expand provider education, and later, public awareness. We believed that our direct participation in these efforts would contribute to more patient-centered messages and vehicles than CDC would have crafted without such a partnership. When the contracts were awarded, they were cost-reimbursement contracts and required that CDC approve all of the deliverables.
With regard to the provider education contract, by 2007 there were too many philosophical differences in our approaches and we declined the opportunity to obtain a “sole source” continuation.
The public awareness contract was funded by the National Center for Health Marketing and we are nearing completion of the final requirements. The National Center for Health Marketing was dissolved in CDC’s recent reorganization. We have no intention to seek new contracts from CDC, although we have applied for research funding from the NIH and Department of Defense and will evaluate other federal funding opportunities that are fully consistent with our mission and strategy.
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How often does the Board meet?
The Board of Directors meets at least monthly. Most of those meetings take place by telephone conference call. Two to three times a year, the Board meets in person for an intensive session of review, planning and discussion. New Board members are provided an in-depth orientation session at the beginning of their terms, and directors may also meet in smaller groups at other events like conferences, meetings with lawmakers and special events. Committees of the Board meet with varying frequency, depending on their charges and the needs of the organization.
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Is the Association’s membership declining?
Last year the Association announced a decision made by the Board of Directors to consolidate its support structure and eliminate a rather confusing distinction between members of and donors to the organization. This change reflected a broader trend in the nonprofit sector in which membership-based charitable organizations were giving way to donations-based organizations. Membership structures are now almost exclusively utilized by professional societies or educational institutions, like bar associations and alumni groups. The North Carolina Secretary of State approved amended Articles of Incorporation formally revising the Association’s structure on April 28, 2009.
Beginning June 1, 2009, anyone who made or makes an annual gift of $35 or more receives our print publication, SolveCFS, three times a year. Our monthly e-newsletter, CFIDSLink, is free to all. An advantage to the change to our structure is that donations are fully tax-deductible, whereas membership dues were not (according to current IRS code).
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What is the Association’s mission?
The Association’s board and staff engaged in a lengthy and intense strategic planning process in 2008 and 2009. As announced in April 2009, the Board adopted new statements of our mission, strategies and core values.
Our Mission:
For CFS to be widely understood, diagnosable, curable and preventable.
Our Strategy:
To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.
Our Core Values:
To lead with integrity, innovation and purpose.
All our work is guided by these statements, and we have drawn on this new focus in a variety of ways. We revamped our publications, initiated additional online communications strategies, engaged new government relations counsel, and expanded our research efforts. Individually and collectively, we strive to do our very best to make meaningful progress in the battle against CFS. We never give up and we never let up. Read more about our activities in 2009.
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Updated last on February 18, 2010
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