This year marks 25 years of service by the CFIDS Association of America. Throughout July, we posted a cover of one of our publications on our Facebook page to honor amazing people who have made important contributions to this community and to reflect on topics that have come, gone and remained relevant over two-and-a-half decades. We’ve posted all those covers here:
Cover #1: 1987-1988. Here’s the cover from the Feb. 1988 issue of the CFIDS Chronicle, a newsletter-style publication produced in-house.
Cover #2: 1989. Topics still relevant today: Markers, CFIDS in Children and emerging hypotheses.
Dr. Peter Rowe of Johns Hopkins University recently shared his perspective on pediatric CFS at the June 2012 meeting of the federal CFS Advisory Committee. He graciously allowed us to post his slides and text from that presentation at http://www.research1st.com/2012/06/21/gains-gaps/.
Cover #3: 1990. This Chronicle issue reported on research linking CFS to a human retrovirus called HTLV-2 by Dr. Elaine DeFreitas based on patient samples provided by Dr. David Bell and Dr. Paul Cheney. 23 of 30 samples from CFS patients tested positive for genes resembling HTLV-2, while none of the samples from 20 healthy subjects were positive. There was heavy media coverage of these early stage results by USA Today, Newsweek, the New York Times and other major dailies and broadcast networks. Later studies testing this association, including blinded case-control studies, found positives in equal percentages among cases and controls and the initial discovery was never validated.
Cover #4: 1991. This issue went into depth on cognitive impairment in CFS, featuring testing measures and rehab strategies by several experts. Some of those materials (and more recent resources) have been posted here on Research1st at http://bit.ly/cognition-resources.
Cover #5: 1992. Our Sept. 1992 issue focused on how different groups of physicians made the diagnosis of CFS. It included perspectives from several doctors who remain active in patient care and research: Drs. David Bell, Paul Cheney, Charles Lapp, Nancy Klimas, Anthony Komaroff, Benjamin Natelson and Daniel Peterson.
Cover #6: 1993. Our fall 1993 issue featured a baker’s dozen perspectives on treatment.
Cover #7: 1994. The Chronicle got a new look in 1994. The spring issue that year focused on a topic that’s still relevant today — differing impressions of what CFS is, depending on whether you ask people who have it, the medical community, policymakers or the public.
Cover #8: 1995. This issue carried news of research showing that a high proportion of people with CFS also had problems tolerating upright posture, or orthostatic intolerance. Dr. Hugh Calkins of Johns Hopkins University monitors a volunteer during a tilt table test, a test administered in the hospital to measure autonomic function. Find current resources on this topic here on Research1st at http://www.research1st.com/2011/06/19/the-outs-and-ins-of-oi/.
Another cover from 1995: This photo was taken on Capitol Hill during our 3rd lobby day, an event we conducted annually for 17 years.
Cover #9: 1996. Our winter issue focused on the impact of CFIDS on the family. Featured on the cover: founder Marc Iverson and daughter Dana and families of then Board members Rebecca Moore (left) and Carolyn Startsman (right)
Cover #10: 1997. Over the years, several state/local organizations have worked to get recognition of CFS from state legislators. This Chronicle cover features Jon Sterling (left) and others from the NJ CFS Association with then Gov. Christy Whitman and a state proclamation about CFS awareness. Jon served as chairman of the CFIDS Association Board of Directors from 2001-2004.
Cover #11: 1998. This issue shared the story of Olympic speed skater Amy Peterson who went on to compete in five consecutive Olympics in spite of CFS. Amy wasn’t the first Olympian to share her connection to CFS — many people will remember soccer star Michelle Akers who competed for USA as a member of the 1996 Olympic and 1999 World Cup teams. Swimmers Tom Dolan and Anita Nall also competed at the Olympic level in spite of CFS.
Cover #12: 1999. This cover is one of several from the era that highlighted developments following a report from the U.S. Inspector General that CDC had diverted $12.9 million in funds it reported had been spent on CFS to other programs. The Association tracked the spending for years, asking tough questions at public meetings and compiling often-conflicting answers that eventually led to a whistleblower’s disclosure, investigations, hearings, restoration of funds, changes to CDC’s financial reporting and tougher oversight. You can read a recap at http://www.cfids.org/advocacy/cdc-scandal.asp.
Cover #13: 2000. Securing disability benefits with CFS has been an important topic over the years. After the Social Security Administration recognized CFS as a disabling condition with its ruling 99-2p in 1999, some have found an easier track but it remains a lengthy, frustrating process. Disability resources: http://www.cfids.org/resources/legal-issues.asp
Cover #14: 2001. This issue of the Chronicle introduced readers to Laura Hillenbrand’s story. Laura’s first book, Seabiscuit: An American Legend, had just been published and was climbing best-seller lists. Since then she has become one of the best the best-recognized and most-respected voices of what it’s like to live with severe CFS.
Laura’s second book, Unbroken, has been on the NY Times’ bestseller list for 87 consecutive weeks and is still number 2! Read more about Laura and her support of the Association’s research program through the Catalyst Fund: http://www.cfids.org/about/catalyst-laura.asp.
Cover #15: 2002. “Infections in CFIDS” was the cover story for this issue, a topic that has been covered many times over the years.
For those interested in a recent overview of the topic, Dr. Anthony Komaroff’s 2010 webinar is enlightening, and one of our most popular: http://bit.ly/CFS-infections-webinar
Cover #16: 2003. This spring issue featured a Q&A about advocacy with Tom Sheridan of The Sheridan Group, who represented the Association in its advocacy work with federal lawmakers and agencies for 15 years.
Cover #17: 2004. The Chronicle got another update to its look. The cover story was about patient assistant programs offered by pharmaceutical companies to help with the cost of medications.
Cover #18: 2005. This special issue of the Chronicle documented the science of CFS, featuring interviews with and articles by leading experts around the world.
We have a limited number of copies on hand. If you’d like to receive one, please send an email with “2005 Special Issue” in the subject line and your postal mailing address to: email@example.com.
Cover #19: 2006. Remember when “blog” (short for weblog) was a term new to most of us? Now there are lots of blogs by and for people with CFS, including our Research1st blog.
Cover #20: 2007. To mark 20 years of service, we published a special “Defining Moments” magazine, cataloguing the history of the Association and the cause.
If you’d like to receive a copy, please send an email to firstname.lastname@example.org with “Defining Moments” in the subject line and your postal mailing address in the message.
Cover #21: 2008. The cover story, “Pearls of Wisdom from a CFS Physician,” by Dr. Lucinda Bateman, describes five common truths she has learned about treating CFS. The article is posted at http://bit.ly/Pearls-LB
Cover #22: 2009. This was the final issue of the CFIDS Chronicle, the Association’s flagship publication for 22 years. Rising costs for production and mailing, economies of online information and a clear message from donors to expand research support led us to re-evaluate our publishing strategy.
The final issue focused on 6 new research projects funded by the Association, the results of which you can read about here: http://www.research1st.com/2011/11/28/accelerate/
Cover #23: 2010. SolveCFS: The Chronicle of the CFIDS Association made its debut in 2009. This fourth issue of the publication provided updates on XMRV and other research, as well as policy news. You can read the full issue at http://www.cfids.org/solvecfs/fall10.pdf.
Cover #24: 2011. This issue of SolveCFS updated donors on our narrowed research focus, introduced our Scientific Advisory Board members and reported on early outcomes of our most recent grants. You can read the issue at http://bit.ly/SolveCFS-2011.
Cover #25: 2012. The spring issue of SolveCFS introduced donors to the Research Institute Without Walls and new research projects being supported by the Association, as well as profiles of Catalyst donors and other research news. You can read the full issue at http://bit.ly/SolveCFS-spr-2012.
If you’d like to receive a print copy by mail, please send an email with Spring 2012 in the subject line and your postal address in the body of the email to email@example.com.