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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.
On March 29, 2010, we announced the launch of a unique research resource, the SolveCFS BioBank. Our first collaborations are beginning and General Enrollment Criteria enable the broad participation by patients diagnosed with CFS by a physician, while ensuring that the population can be narrowed according to criteria for individual studies approved by our Medical Research Advisory Committee. Consistent collection of detailed clinical data and health history will be a tremendous resource for the field, in addition to the tissue repository. See our BioBank FAQ for additional info about current studies.
With these activities under way and the promising XMRV discovery, there has never been greater potential for accelerated progress in CFS research. The Association's Board of Directors is presently evaluating how to most effectively fulfill our role as a research support organization in light of the growth of scientific interest and as we build a robust research resource through the SolveCFS BioBank. Read more about our research program.
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Does the Association support use of the Canadian Clinical Definition for ME/CFS (CCD) published in 2003 by Carruthers, et al.?
The short answer is yes. The long answer is a little more complex. First, it should be noted that the CCD was published in the Journal of Chronic Fatigue Syndrome (JCFS), which was never linked to medical indexes like PubMed or MedLine. JCFS is no longer in print. Therefore, this article did not become part of the mainstream medical literature and has received scant attention outside the relatively small field of CFS experts. There has been some discussion among its authors to seek publication in a journal with wider circulation; however, its length, 30+ pages, makes this proposition challenging.
On April 14, 2010, the Association invited Dr. Leonard Jason of DePaul University to deliver a webinar program on the various CFS definitions and their impact on research and care. During that program, he stated that there is an important need to standardize the Canadian criteria and to validate those criteria. He provided an example of how many different ways the cardinal symptom of “post-exertion relapse/fatigue/malaise” might be queried about and documented by different clinicians/researchers. It is also important to note that many of the lab measures that might be used to operationalize categories of symptoms like “immune” are not clinically available, such as tests of NK cell cytotoxicity, which can only be reliably obtained from selected university research labs. Similarly, imaging tests, sleep studies, tilt tests, etc., are conducted at centers worldwide using different equipment and different protocols. Comparing results of those tests is not as straightforward as it might seem on the surface. Making specific results from such tests mandatory for diagnosis or inclusion in a study presents important challenges and raises costs in a field that is grossly underfunded. And for individuals seeking diagnosis, access to and cost of extensive testing measures are important considerations.
The current general enrollmnet criteria for the SolveCFS BioBank enables patients diagnosed by a physician using either the CCD or the 1994 Fukuda definition to participate, although all patients must have post-exertion malaise even though it is not required under the Fukuda definition. The Association also recommended that the American Psychiatric Association take note of the CCD in its written comments submitted on April 1, 2010 in response to feedback on the DSM-5 proposal.
The CFIDS Association is actively working with Dr. Jason to ensure that the clinical questionnaires used for the SolveCFS BioBank will collect meaningful data that can be used to help overcome some of the definition issues that are huge challenges to the field. Having an established research network (as the Association does) and this biobank of blood/tissue samples AND extensive patient clinical information will be an enormous tool for the field and we hope the patient and scientific communities will support it.
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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.
The Association's Board of Directors is presently evaluating how to most effectively fulfill our role as a research support organization in light of the growth of scientific interest and as we build a robust research resource through the SolveCFS BioBank.
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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., Dutch and CDC 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 a report was made by Jerry Holmberg at the CFS Advisory Committee meeting on May 10, 2010. The Association is also collaborating with several groups studying XMRV and attempting replication studies. These collaborations have taken various forms, from providing consultation on CFS (since many of the researchers engaged in these studies are new to CFS research), to linking bench researchers with sources of clinical samples.
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 "Blood from a Stone" and the analyses of the four follow-up studies of XMRV prevalence in CFS. 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 issued a press release following the AABB recommendation about blood donation by CFS patients. 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 does the CFIDS Association use information it gathers from surveys?
Over the years we have used informal, voluntary surveys to help us refine our publications, focus on shared interests, and support research projects and applications with response data. Here is a list of the surveys done last year.
March 2009: Link reader survey (Part 1)
April 2009: Link reader survey (Part 2)
May 2009: Symptom Subsets survey
June 2009: Patient Profile survey
Some questions turn out to be more useful than others, and trends over time are important to identify, as well as individual survey results. For example, it’s interesting to note that the percentage of patients diagnosed with CFS by a physician has steadily increased over time.
The June 2010 survey explores risk factors in CFS. Risk factors refer to traits, events, environments, exposures, etc. that may be more common among people with a certain condition than those who don’t have it. Risk factors are not the same as causes. There might also be risk factors for prolonged illness (rather than onset) and/or recovery that are useful to query about.
All responses are completely anonymous and results will be reported in the aggregate only. Responses to some questions may be reported only for a subset of participants’ answers. For instance, questions about conditions in the current home may only be reported for those individuals who indicated that they live in the same home as when they first became ill. We try to keep the length of each survey to a size that allows a respondent to answer within 10 minutes. There are always more (or different) questions that could be asked, but we recognize the limits of time and energy.
We appreciate comments on the surveys we issue. Using this online format allows us the opportunity to design a variety of surveys to explore different issues over time at a low direct cost to the organization and no cost to the respondent. Because these surveys are voluntary and anonymous, they do suffer from a self-selection bias and other limitations, so they are not adequate on their own to form the basis of a research project. They do have the potential to offer interesting insights and possible clues for data mining projects, supporting funding applications for various hypotheses and evaluating new data as it is published. We also found last year that our summaries of survey results were among the most popular articles published in the CFIDSLink. Here’s one of them: http://www.cfids.org/cfidslink/2009/090202.asp
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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 worked to understand all the factors involved with these proposals and how to most effectively influence the final decisions. We have a tradition of being deliberate and thorough in our actions that we will uphold. We consulted 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. On April 1, 2010 we submitted a detailed set of comments and an urgent recommendation to abandon the proposal to create a new category of mental disorders called Complex Somatic Symptoms Disorder (CSSD).
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, our work with B&D Consulting, Capitol Hill visits made on March 3-4, 2010 and our participation in the Campaign to End Chronic Pain in Women.
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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 and its current eligibility criteria for the BioBank.
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 a report is anticipated at the upcoming CFS Advisory Committee meeting on May 10, 2010.
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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 the most recent meeting notice.
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Why doesn’t the Association help individuals 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. However, the Association lacks the medical and/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
Does the Association work with other CFS/ME organizations?
Over the years we have collaborated with dozens of ME/CFS organizations from being a founding member of CACTUS and IFMEA in the early years; to working closely with ProHealth to expand research and education; to organizing the CFIDS Support Network of hundreds of local, regional and state support groups, the Youth Campaign for CFIDS and CFIDS Youth Alliance; to providing financial support for conferences and other educational activities conducted by AACFS (now IACFS/ME), several state organizations, OFFER, PANDORA, HHV-6 Foundation; to advocating for the formation and chartering of the federal CFS Advisory Committee; to sponsoring 14 Capitol Hill lobby days for hundreds of advocates from across the country; to supporting and sustaining researchers in academic institutions studying CFS, and more. If you’d like to receive a complimentary copy of our 20-year history publication (2007) titled, “Defining Moments,” please send your request and mailing address to cfids@cfids.org.
More recently our efforts have been directed to establishing partnerships with organizations that will help to expand attention paid to CFS, like those with Research!America, Genetic Alliance, Overlapping Conditions Alliance, Alliance for Taxpayer Access, Cold Spring Harbor Laboratories, the Biomedical Information Research Network and industry including biotech and pharma. In January we posted a month-by-month summary of our 2009 work detailing some of these efforts. Also, Suzanne Vernon, our scientific director, is presently a member of the Board of the IACFS/ME and scientific committee working on blood safety issues along with WPI’s research director. CEO Kim McCleary is a member of the of the AABB’s XMRV/CFS task force. The SolveCFS BioBank is part of the Genetic Alliance BioBank.
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If CFS is part of the Campaign to End Chronic Pain in Women, won’t CFS get lost among conditions with more recognition?
Pfizer established this campaign and sought out the Overlapping Conditions Alliance to help shape it. It would have been a shame for it to go forward without recognizing CFS, since so many people with CFS have chronic pain and/or one or more of the other conditions that are being highlighted. We agree that CFS warrants continued attention and awareness in its own right and this campaign should enhance those efforts. It’s also important to recognize that this campaign emphasizes the neglect and dismissal that many people experience because these conditions receive so little research funding and do little attention in the training of health care practitioners. We would not have had the ability to develop such an effort on our own.
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What is the purpose of the Association's webinar series?
We intend to provide information from leading experts on high-interest topics to augment our print and electronic publications. Webinar technology gives us the opportunity to offer these programs at a low cost to a wider audience than was possible through our traditional seminars. We are grateful for a gift from a family that wishes to remain anonymous in support of this series.
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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 nearly 20 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 compiled by sources such as Guidestar, Abbott/Langer, the National Compensation Survey, Charlotte Chamber of Commerce, Department of Labor, Chronicle of Philanthropy, North Carolina Center for Nonprofits and American Research Company. The compensation levels paid to our staff members are below regional and sector norms; staff salaries have been frozen since 2008 to reflect the economic pressures on the organization and the community in general. Any differences in compensation levels since this time period reflect differences of timing of pay periods, rather than salary changes. Outside observers frequently comment on how "lean" and efficient the staff is compared to other organizations and companies. Meet our current staff members.
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Do staff members contribute financially to the Association?
Our staff has a strong record of financial support for the organization and the staff participated 100% in the Association's 2009 Annual Fund, our most recent fundraising drive. The CEO ranks among the very top donors to the Association.
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Why is the portion of expenses related to research only 19% for 2008?
The Association has long maintained a policy of raising funds for research before making commitments to support approved grants. This ensures that research funds are available to complete projects and fulfill commitments. In 2008, we succeeded in raising more than $1 million for research. Commitments to six innovative projects were announced in November 2008 and funding for the projects began as soon as each team completed the required approvals. In 2009, the percentage of expenses dedicated to research was 45%. Our goal for 2010 is to allocate 55% of funds for research, 17% to public policy, 15% to communications/education and 13% to supporting services.
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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 final requirements were met on June 30, 2010, ending the contract and the campaign. 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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How does the Association "rate" with charity watchdog services?
For each year of its 23 years of operation, the Association has maintained low overhead, fundraising and management expenses. The Association has always exceeded the federal IRS requirements for disclosure, reporting and transparency, including new reporting requirements that went into effect for 2009. Our 990 and an annual report for 2008 are available on our website. The 2009 external audit has been recently completed and the 990 will be posted on the website by June 2010.
In 2007 and 2008 the Association earned rare 4-star consecutive year ratings from Charity Navigator. Due to the combined impact of the slowed economy, the decision to withdraw from CDC contract, and the completion of the first phase of our restricted research campaign, the reduction in our revenue between 2009 and 2008 affected the capacity score with Charity Navigator and the Association was rated with two stars.
As of April 16, the Association meets all of the Better Business Bureau’s 20 standards for charity accountability, making it the only CFS-related organization to be accredited under the Wise Giving program.
The nonprofit sector is not generally well understood and issues pertaining to overhead, staff salaries and infrastructure don’t paint a complete picture of any nonprofit organization. Nonprofits are expected to do more with less and to generate enormous “returns” on donors' investments by taking on huge missions such as curing diseases, ending homelessness and eliminating poverty. For an in-depth look at some of the differences between for-profit and nonprofit organizations, see the article “What Business Executives Don’t Know – But Should – About Nonprofits” from the summer 2006 issue of the Stanford Social Innovation Review. SSIR also published an article titled, "The Nonprofit Starvation Cycle," in its fall 2009 issue that is valuable reading for those interested in how low overheads can distort and undermine the nonprofit sector.
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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. These changes have also impacted how funds are directed and resources, including staff time, are invested. Those changes will continue to be implemented as we undertake new initiatives like the SolveCFS BioBank and the 2010 webinar series. 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 June 7, 2010
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