CFIDS Association President and CEO Kim McCleary
From the CEO's Desk
In 2009, CFS commanded the world’s attention with the landmark research published in Science by researchers at the Whittemore Peterson Institute (WPI), National Cancer Institute and the Cleveland Clinic. Many important events and milestones were marked in the past year, too. Here’s a month-by-month recap of some of the CFIDS Association’s contributions to the movement from 2009.
- As the year began, the Board of Directors welcomed four new directors and the staff adjusted to the loss of 5 staff positions forced in early December (2008) by the sharp economic downturn and impact of the Madoff scandal on several Association benefactors.
- Against the backdrop of President Obama’s inauguration, Association Scientific Director Suzanne D. Vernon, PhD, convened the first meeting of principal investigators and clinical collaborators for six projects approved for funding by the Association. This meeting established a network between groups and resulted in agreed-upon standardized clinical information and lab measures to collect on all studies’ subjects. The group met in Charlotte from Jan. 18-20. http://www.cfids.org/cfidslink/2009/020402.asp
- Suzanne and chief financial officer Kris Hopkins assisted approved research groups to complete final compliance requirements, including institutional and IRB approvals. http://www.cfids.org/profresources/policies.pdf
- PLoS Computational Biology selected the paper, “Model-based therapeutic correction of HPA axis dysfunction” by Drs. Amos Ben-Zvi, Suzanne D. Vernon and Gordon Broderick (one of the Association’s funded investigators) as one of the most important in its January issue. The press release generated media coverage in Canada and the U.S. http://www.eurekalert.org/pub_releases/2009-01/plos-ro012109.php
- The winter issue of the CFIDS Chronicle, focused on research, was mailed to members. As announced in its pages, it would be the final magazine-style issue; this change was made to reduce publication costs and respond to the growing number of member requests for online formats and “greener” communications vehicles. http://www.cfids.org/about/lifeline.pdf
- On Feb. 10, Suzanne sent a letter requesting that the U.S. Centers for Disease Control & Prevention (CDC) share its CFS data with the newly formed network of funded investigators and others, under President Obama’s Jan. 21 directive requiring broader release of government data. The response received a month later indicated that they were working toward this and would address it in their research plan.
- Suzanne and CEO Kim McCleary delivered a two-hour briefing to the newly designated federal officer for the CFS Advisory Committee (CFSAC), Dr. Wanda Jones, and other members of the Office of Public Health and Science staff about CFS and the Association on Feb. 24. They discussed CFSAC meeting attendance by the community and ways to make meetings more accessible to patients. http://www.cfids.org/cfidslink/2009/030401.asp
- While in Washington for the briefing with Dr. Jones, Suzanne and Kim met with key Congressional staffers about CFS research and policy. http://www.cfids.org/cfidslink/2009/030401.asp
- With the February issue of CFIDSLink, we initiated a series of reader surveys to develop reader profiles, seek input on topics of greatest interest and help tweak the format of our free monthly enewsletter. http://www.cfids.org/cfidslink/2009/030408.asp
- As a means to connect members of the community with one another and more directly with the Association, the Association launched a Facebook page on Feb. 28. It now has 2,955 fans from 20 countries and content is updated daily with posts and links from the Association and/or our fans. http://www.facebook.com/CFIDSAssn
- The Association joined with five organizations representing conditions that frequently overlap with CFS to form the Overlapping Conditions Alliance. An information website was launced on March 1. www.overlappingconditions.org.
- Health Radio Network’s syndicated radio program “Ask Dr. DeSilva” devoted an hour to CFS on March 5 with guests Suzanne and Kim. Media listings at http://www.cfids.org/sparkcfs/media-coverage.asp are updated at least twice weekly.
- “The Faces of CFS” exhibit was featured at the Meadowood Mall in Reno, Nevada, March 9-15. Media outreach conducted by the Association’s Public Relations & Events Manager, Sara Collins, also drew attention to the IACFS/ME conference.
- On March 11, Kim McCleary sent a heavily footnoted seven-page letter to acting CDC director Dr. Richard Besser about the urgent need to strengthen the CDC’s CFS research program. http://www.cfids.org/cfidslink/2009/050607d.pdf
- The IACFS/ME convened its eighth annual international research and clinical conference in Reno on March 12-15. Kim and Suzanne represented the CFIDS Association at the various sessions and informal meetings with collaborators and researchers new to the field. http://www.cfids.org/cfidslink/2009/040103.asp
Suzanne Vernon, PhD and Kim McCleary
- At the conference, Suzanne presented a three-hour workshop for clinicians and researchers on March 12. http://www.cfids.org/cfidslink/2009/040103.asp
- Suzanne was honored for research excellence at the IACFS/ME conference. http://www.cfids.org/cfidslink/2009/040103f.asp
- Following an intensive long-range planning process, the Board of Directors announced new statements of mission, strategy and core values in the April edition of CFIDSLink. http://www.cfids.org/cfidslink/2009/040101.asp
- The Association submitted a research grant application to the Department of Defense’s Congressionally Directed Medical Research Program. http://www.cfids.org/cfidslink/2009/070103.asp
- The Association collaborated with other researchers to submit a “Challenge” grant application to NIH in response to the first major research initiative announced under ARRA. NIH received an unprecedented number of applications, and the Association’s application was among those that did not receive funding for this round. http://www.cfids.org/cfidslink/2009/070103.asp
- Media outreach in St. Louis generated numerous quality television, radio, print and online stories about CFS featuring local experts and patients as “The Faces of CFS” exhibit was on display at St. Louis Mills from April 23-26.
- Kim attended a public meeting at the CDC on April 27, delivering testimony about the shortcomings of the CDC draft research outline. In weeks prior to the meeting, the Association requested that CDC make the meeting accessible and that it accept public statements via audioconference, which it did. http://www.cfids.org/cfidslink/2009/050607b.pdf and http://www.cfids.org/cfidslink/2009/050607.asp
Drs. Gordon Broderick, Suzanne Vernon, and Sanjay Shukla
- In conjunction with an in-person meeting of the Board of Directors, the Association hosted a Research Roundtable in Chicago for Association supporters featuring two of its funded investigators, Gordon Broderick, PhD, of University of Alberta and Sanjay Shukla, PhD, of Marshfield Clinic Research Foundation.
- The Association submitted a “Grand Opportunity” grant application to National Institutes of Health (NIH) in response to one of the funding opportunities created under the American Recovery and Reinvestment Act (ARRA). This proposal received excellent reviews, but was not among those selected forfunding. http://www.cfids.org/cfidslink/2009/070103.asp
- The May 11-17 exhibit of “The Faces of CFS” at Mayfair Mall near Milwaukee, Wis., provided additional exposure for CFS/ME Awareness Day on May 12.
- The fifth annual Virtual Lobby Day, launched on May 12 through the Association’s Grassroots Action Center, generated 4,222 letters to lawmakers, public health officials and media contracts. http://capwiz.com/cfids/home/
- Association-funded researcher Dr. Dikoma Shungu received attention from New York-Presbyterian Hospital’s publications for his research that has found elevated levels of lactate in the brains of CFS. http://nyp.org/advances/diagnosing-chronic-fatigue-syndrome.html
- At the conclusion of a request for proposals and review of proposals received, the Association engaged new representation for its federal public policy work through B&D Consulting and began an intensive process of briefing firm staff about past challenges and successes and future opportunities. http://www.cfids.org/cfidslink/2009/070109.asp
- Kim participated in the May 28-29 CFS Advisory Committee meeting and again gave testimony focused on the lack of productivity in CDC’s research program. This was the first CFSAC meeting that was webcast online. http://www.cfids.org/cfidslink/2009/060309b.pdf and http://www.cfids.org/cfidslink/2009/060309.asp
- The May edition of CFIDSLink included a request for readers to participate in an anonymous research survey about illness onset triggers and perpetuating factors. Responses were capped at 1,200 participants and were reported in later issues of CFIDSLink: http://www.cfids.org/cfidslink/2009/080504.asp and http://www.cfids.org/cfidslink/2009/090202.asp
- Our new-format print publication, SolveCFS: The Chronicle of the CFIDS Association of America, made its debut with a mailing to Association supporters. Changes to our membership program were announced in its pages, eliminating the often-confusing distinction between members and donors. An online version was made available a month later. http://www.cfids.org/solvecfs/ss09.asp
- Dr. Marvin Medow, one of the Association’s funded researchers, was among the authors of a June 5 study published in the American Journal of Physiology - Heart and Circulatory Physiology describing “slow flow” in patients with postural orthostatic tachycardia syndrome (POTS), many of whom meet the case definition for CFS. His Association-funded study explores these symptoms in CFS. http://www.cfids.org/cfidslink/2009/070102.asp
Dave Zook, JD
- Suzanne and Kim continued to provide background and to discuss strategic opportunities with Dave Zook, JD, Debra Lappin, JD and Jenny Carey at B&D Consulting. On June 8, they met with several Congressional staffers about CFS research and education needs on behalf of the CFS community.
- Kim represented the Association at the National Heart, Lung and Blood Institute’s (NHLBI) annual Public Interest Group meeting on June 9, connecting with other nonprofit leaders and gathering information about changes at NHBLI and the NIH.
- The 41st display of “The Faces of CFS” took place at the Westfield Meriden mall near Hartford, Conn., from June 15-21, yielding coverage of CFS in regional print, broadcast and online media.
- The Association received notice of a $35,000 award from the NIH to host a meeting of funded research investigators at the Banbury Conference Center of Cold Spring Harbor Laboratories. http://www.cfids.org/cfidslink/2009/070103.asp
- In response to CDC’s request for input, on June 26, the Association submitted detailed written recommendations to CDC based on its draft research plan for the CFS program. http://www.cfids.org/temp/research-plan-response.pdf
- The Association joined the Alliance for Taxpayer Access that promotes “barrier-free access to taxpayer-funded research.” We issued an advocacy alert to generate support for the Federal Research Public Access Act (FRPAA) sponsored by the Alliance. 388 letters have been sent through our Grassroots Action Center to U.S. senators in support of the bill. http://capwiz.com/cfids/issues/alert/?alertid=13738316&queueid=3648391941
- An Action Alert issued through our Grassroots Action Center to generate additional support for the Association’s recommendations to CDC yielded more than 1,000 messages sent to the CDC planners.
- We hosted a second Research Roundtable for Association supporters in Denver, Col., on July 12, featuring presentations from Dr. Marvin Medow of New York Medical College and Dr. Lucinda Bateman of the Fatigue Consultation Clinic in Salt Lake City. The Association’s Board also met in person in Denver.
- Association-funded researcher Alan R. Light, PhD, and his team at the University of Utah Health Sciences Center published a study that identified genes that increase in activity following moderate exercise in CFS patients. The paper was e-published in the Journal of Pain ahead of print. http://www.cfids.org/cfidslink/2009/080503.asp
- Dr. Ben Katz of Northwestern University, an Association-funded collaborator, published results from a study of teens followed for two years after the onset of mononucleosis in the July 2009 issue of Pediatrics. http://www.cfids.org/cfidslink/2009/080502.asp
Christoph Bausch, PhD
and Brian Smith
- “The Faces of CFS” was displayed at the American Academy of Family Physicians Students & Residents National Conference in Kansas City, Mo., from July 30 until Aug. 1. Association Board members Christoph Bausch, PhD, and Brian Smith, a pre-med student, talked with physicians-in-training about CFS.
- The August edition of CFIDSLink included profiles from two Japanese women, Kazue Hirano and Motoko Habara, with CFS, wrapping up a series of first-hand stories from people in countries outside the U.S. sharing their challenges of living with CFS. http://www.cfids.org/archives/2006-2010-cfidslink/august-2009.asp
- The August CFIDSLink also invited readers to share information about their everyday lives through our 25-item Profile Survey. The top 10 responses to question #22 were reported in the September, and accounted for one of the most popular Link articles of the entire year. http://www.cfids.org/cfidslink/2009/090201.asp
- We established a relationship with the NIH-funded initiative Biomedical Information Research Network (BIRN), as a model for an effective research network and a partner in building a more robust CFS research network.
- Suzanne attended the NIH Family History State of the Science conference Aug. 23-26 to gain a stronger understanding of the value of and tools for collecting appropriate family medical histories in studying complex conditions.
- Detroit-area residents were able to learn about CFS through area media outreach and “The Faces of CFS” exhibit when it was displayed at Eastland Center in Harper Woods from Aug. 24-30.
- The Association and NIH hosted a meeting of funded CFS researchers and selected experts at Banbury Center, Sept.13-16. The productive session, “From Infection to Neurometabolism: A Nexus for CFS Research,” ended with an ambitious action list and great promise for reshaping the CFS research field through enhanced collaborations. http://www.cfids.org/cfidslink/2009/100702.asp.
- We launched a channel on YouTube to house short videos and connect through this popular social media site. The first video posted featured CFS patient and former Association Board member Wilhelmina Jenkins discussing the cognitive problems that are the most daunting challenge of life with CFS. http://www.youtube.com/watch?v=TMh_JpPmL-s
- Suzanne completed a Public Health Genomics continuing education course at Sarah Lawrence University on Sept. 23-26, finishing the requirements to earn her certificate in public health genomics. http://www.cfids.org/cfidslink/2009/100705.asp
- The Association became a member of Genetic Alliance, the world’s leading nonprofit health advocacy organization committed to transforming health through genetics. http://www.cfids.org/cfidslink/2009/100704.asp
- In response to a notice in the Federal Register, we submitted nomination packages for seven highly qualified individuals to the federal CFS Advisory Committee. http://www.cfids.org/advocacy/cfsac-nominees09.pdf
- The Association nominated Suzanne to serve on the Council of Public Representatives (COPR), an advisory board to the director of the NIH.
- For the week beginning September 21, “The Faces of CFS” exhibit was on display at CoolSprings Galleria near Nashville, Tenn. Media coverage generated by regional outreach generated stories about local CFS patients and provided information from local experts.
- Ashley Comstock joined the Association’s staff as major gifts officer. Her development experience has been with the Alzheimer’s Association and the American Diabetes Association. With the addition of Ashley, the Association’s staff numbers 8 full-time employees.
- The Association joined Twitter nation and now has 136 followers and 189 tweets at http://twitter.com/PlzSolveCFS.
- Based on the 1,784 responses to the August profile survey (discussed above), Kim and daughter Lauren collaborated to make the short movie, “What Would You Do?” using Lauren’s original photography and some additional shots taken by other volunteers to depict answers to the question, What would you do if you were completely well tomorrow? We posted the video on our YouTube channel on Oct. 5. http://www.youtube.com/solvecfs
- As part of the annual fund campaign to raise support for the Association’s research and public policy program and its operating costs, a companion website was launched at www.SolveCFS.org on Oct. 5.
- The Lights’ study on blood biomarkers being funded by the Association was published (in print) and a figure from the article was featured on the cover of the October issue of the Journal of Pain.
- With the Oct. 8 publication of a study in the prestigious journal Science that detected a human retrovirus, XMRV, in CFS patients the Association issued its congratulations to researchers at the Whittemore Peterson Institute (WPI), shared the news through its various electronic lists (CFIDSLink, Grassroots Action Center, Facebook, Twitter) and gave media interviews, recognizing the study as “landmark” and “game-changing.” We also quickly developed resources and links to other expert opinions on the importance of the study and implications for CFS patients and the public. http://www.cfids.org/XMRV/default.asp
- On Oct. 9, continuing medical education (CME) credits for the Association-sponsored Medscape CME unit titled, “CFS: From Diagnosis to Management” reached the one-year expiration date. In that time, 31,948 medical professionals took the course for credit and nearly 180,000 used the materials for reference. Nurses accounted for about half of those obtaining credit for the course and physicians represented one-fourth. Pharmacists, medical students, physician assistants and other medical professionals made up the other fourth. http://www.cfids.org/cfidslink/2009/010704.asp
- Suzanne wrote an analysis of the Science article titled, “Xplained,” that was widely distributed and posted among our growing list of XMRV resources, updated regularly. http://www.cfids.org/cfidslink/2009/110402.asp
- The BIRN steering committee accepted the Association’s application for an expanded CFS research network to be housed in its technology framework.
- The Association sought guidance from the National Cancer Institute (NCI) about transmission of XMRV and precautions that should be taken while research proceeds. We posted NCI’s interim guidelines on Oct. 23. http://www.cfids.org/xmrv/nci-guidelines.asp
- With B&D Consulting staff, on Oct. 28 Kim met with several congressional staff about opportunities presented by the XMRV study for expanded CFS research.
- Kim attended and gave testimony at the Oct. 29-30 meeting of the CFS Advisory Committee. We provided a detailed report on this meeting that focused on the XMRV discovery and the CDC’s deeply disappointing five-year research plan. http://www.cfids.org/cfidslink/2009/110401.asp and http://www.cfids.org/advocacy/testimony-kkm-oct09.pdf.
- “The Faces of CFS” closed out its national tour at Westfield North County Fair near San Diego, Calif., from Oct. 26-Nov. 1. Initially scheduled for just 12 venues, the exhibit traveled to 36 public venues and nine medical provider conferences, generating coverage in all the top 25 media markets and scores of print articles, radio interviews, television stories and online features and listings.
- Concern about H1N1 flu had been building since April, but by the pandemic’s peak in November, questions about risks to CFS patients posed by the illness and the vaccine matched interest in XMRV. http://www.cfids.org/cfidslink/2009/070110.asp
- Suzanne was invited to participate as a member of the XMRV Scientific Working Group. She also continued linking lab researchers with clinical experts to facilitate testing of CFS cases similar to those studied by WPI.
- The Association rapidly shared a Q&A from the National Cancer Institute about XMRV (http://www.cancer.gov/newscenter/pressreleases/XMRV_QandA) and summarized information about two commercial XMRV tests and guidance from experts about testing. http://www.cfids.org/xmrv/testing.asp
- In response to questions and concerns about the Association’s communications about XMRV, “Getting ‘Right’ and Giving Thanks” was distributed on Thanksgiving eve, Nov. 25. http://www.cfids.org/XMRV/112509.asp
- At the request of producers for “The Dr. Oz Show,” we prepped and screened a dozen clinical experts and patients to discuss CFS and XMRV. Producers selected Dr. Donnica Moore, a women’s health expert and CFS mom, to appear on the Dec. 3 program along with Gina, a young woman who tested XMRV-positive in the WPI study.
- Kim accepted an invitation to serve on the AABB (formerly the American Association of Blood Banking) Interorganizational Task Force on XMRV that will oversee the XMRV Scientific Research Working Group.
- Kim issued an open letter to the CFS community on Dec. 11, calling for greater unity in the quest for rigorous science that provides “absolute validation, definitive answers and unbridled hope.” http://www.cfids.org/about/kkm-open-letter-dec09.pdf
- Just as fall came to an end, the fall issue of our print publication, SolveCFS: The Chronicle of the CFIDS Association of America, was mailed to supporters. The issue focused on XMRV and research updates from the Association’s funded investigators. http://www.cfids.org/solvecfs/fall09.asp
- The Association will serve as the community-based organization on an NIH grant for Building Sustainable Community-Linked Infrastructure to Enable Health Science Research NIH grant submitted with principal investigators Dr. Leonard Jason of DePaul University and Dr. Julian Stewart of New York Medical College. The application will be reviewed by NIH in the spring of 2010. http://www.cfids.org/cfidslink/2009/110404.asp
- The Association’s Board of Directors prepared for transition as Jennie Spotila, JD stepped down as chairman on Dec. 31 and Adam Lesser took the post on Jan. 1, 2010. Two other directors, Lynn Royster, PhD, JD and Susan Jacobs, Esq. reached their maximum years of consecutive service (six) and three new directors joined the Board: Diane Bean, Vicki Boies, PsyD, and Bob Raidt. http://www.cfids.org/cfidslink/2009/120205.asp
- With year-end giving in full swing, progress toward the Association’s ambitious $1 million annual fund goal was bolstered by late-December gifts from individuals as modest as $1 and as magnanimous as $100,000. Gifts with a postmark of Dec. 31 count toward year-end totals, so the 2009 total revenue is not yet final. http://www.solvecfs.org/SOLVECFSCAMPAIGN/tabid/71/Default.aspx
CFIDSLink is offered free-of-charge to anyone who requests it. Please help us continue being able to provide this service. Donate now.