Frequently Asked Questions About the CFIDS Association of America (Updates Only)

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 posted an Association FAQ page. This page reflects updates and additions made within the last month.

RESEARCH

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 expert Dr. John Coffin, study author and pioneering clinician Dr. Daniel Peterson, and clinical researchers Drs. Nancy Klimas and Lucinda Bateman. Now, with the recent report from U.K. researchers, 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 accepted an invitation to serve as 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 analysis of the 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.

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.

ADVOCACY

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 will soon be under new leadership, 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.

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. In December, CEO Kim McCleary accepted an invitation to serve 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.

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.

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.

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.

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.

STRUCTURE AND FUNDING

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.

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).

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.

The CFIDS Association of America
PO Box 220398
Charlotte, NC 28222-0398
cfids@cfids.org
www.cfids.org
Contact us.
Validate. Innovate. Eliminate. Solve CFS.

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