IACFS/ME Response to P2P Draft Report on ME/CFS
Dear NIH P2P Panel Members ,
As board members of the International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME), the largest international group of clinicians, researchers, and other professionals dedicated to the care and research of patients with ME/CFS, we hope that your report will have a positive influence on the field, our organization’s members, and the patients/ families we serve.
Generally we agree with the majority of the Panel’s recommendations but believe that the elephant in the room – research funding – alluded to in the report (e.g. Line 8) needs to be addressed more strongly and specifically.
Federal funding for ME/CFS research over the last 3 decades has been inadequate to the broad-ranging and complex challenges presented by this illness. In recent years, only $5-$6 million annually has been awarded on an extramural basis, resulting in ME/CFS being the least-funded out of 240+ conditions that NIH tracks annually. (http://report.nih.gov/categorical_spending.aspx
) Over the last 25 years that IACFS/ME has been in existence, we have seen few new researchers enter the field, a flat publication rate over the past decade, and continuing stigma surrounding the illness.
Open Letter to Dr. Francis Collins Director, National Institutes of Health
Dear Dr. Collins:
On behalf of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME), we thank you for your attention to ME/CFS, and encourage the NIH to continue and strengthen research on this debilitating illness.
Three weeks ago, the IACFS/ME held its biennial research and clinical conference, attracting some 400 professionals and patients to discuss advances in biomedical and behavioral research on the diagnosis, pathophysiology, genetics, and treatments for ME/CFS. The overwhelming consensus from the attendees is that the research efforts, largely supported by NIH, are paying off. We are tantalizingly close to gaining an understanding of potential biomarkers, genetic traits, brain dysfunction, cytokine abnormalities, autoimmune responses, neurological disorders, and treatments. However, we need a special “push” at this time to solve the mysteries of this illness.
We call on you and Directors of key Institutes at NIH to collectively work together to issue a Request for Applications (RFA) calling for R01 and R21 projects related to ME/CFS. At a level of $7-10 million annually for five years, an RFA would double current funding and bring talented investigators into the field for the first time. The ME/CFS RFA would also dovetail nicely with ongoing NIH initiatives including those related to the brain, big data and transformative research.
Media coverage of the conference may be found at these links:
IACFS/ME San Francisco Conference the Biggest in Years!
Dear Members and Colleagues,
The big news is the success of our international conference in San Francisco, March 20-23. We recorded just under 400 attendees, the best showing for IACFS/ME in the last 15 years. Certainly the attractive venue was a big plus. Also, Jose Montoya’s CFS/ME research meeting at Stanford University Medical Center the day prior to the conference helped to boost our numbers (and vice versa). Also we had a very strong speaker schedule, including virologist Ian Lipkin, best-selling author Abraham Verghese (professor of medicine at Stanford), and Noel Rose, pioneering immunologist from Johns Hopkins University. Much thanks to Jose and to board member Lily Chu for putting together the collaboration with Stanford.
ME/CFS survey presented at US Food and Drug Administration Drug Development Workshop
Board member Dr. Lily Chu and Dr. Leonard Jason, along with his research team, recently designed an online survey to answer questions about ME and CFS symptoms, impact on daily life, and patient perspectives on treatment posed by the US Food and Drug Administration (FDA). By mid-April, they had received over 1,000 responses nationally and internationally. On April 26, some results from 360-470 US respondents were presented during panels #2 and #4 of the Workshop. You can watch the meeting here
Further results are summarized in Attachment #1 and Attachment #2. For those who have not taken the survey and would still like to participate, please click on this link. They will continue to collect surveys until MAY 10.
All survey responses will be analyzed and presented in a final document to be submitted in August to the FDA's federal docket. They may also try to publish the results in a scientific journal. Dr. Chu and Dr. Jason would like to thank everyone who took the time and energy to participate in this survey.
Click here to view all news articles
Inaugural Issue of Fatigue: Biomedicine, Health and Behavior: Now Online!
Dear Members and Colleagues,
We are excited to announce that the first issue of our new peer review journal, Fatigue: Biomedicine, Health, and Behavior published by Routledge/Taylor and Francis is now available online. This is a special free access double issue. Subsequent issues will be available by login to full members of IACFS/ME. Also, a print version can be ordered. For further information on Membership and journal options: http://www.iacfsme.org/MembershipOptions/tabid/211/Default.aspx
Among the seven papers in this first issue, we have a review article on envelope theory by award-winning CFS/ME researcher Leonard Jason. Also the new issue highlights a controlled study from the University of California research team headed by renowned sleep expert Sonia Ancoli-Israel. The topic: chronic fatigue and sleep disruption in cancer patients with implications for light therapy treatment.
To access Fatigue online, click on: http://www.tandfonline.com/loi/rftg20
Thank you for your support!
Fred Friedberg, PhD