On December 9 & 10, 2014, the NIH Office of Disease Prevention held its Pathway to Prevention Workshop for “Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”. Upon the conclusion of the workshop, the panel prepared their Draft Report and recommendations. It was posted to the workshop website on Thursday, December 18, 2014 and is open for comments until Friday, January 16, 2015, at midnight.
The P2P Draft Report has been met with some enthusiasm, as it officially addresses many things the patient community has known for years…
“ME/CFS is an unmet public health need with an economic burden estimated to be greater than $1 billion. ME/CFS results in major disability for a large proportion of the people affected. Limited knowledge and research funding creates an additional burden for patients and health care providers. Unfortunately, ME/CFS is an area where the research and medical community has frustrated its constituents, by failing to assess and treat the disease and by allowing patients to be stigmatized.”
“ME/CFS exists…” and “ME/CFS has a physical, psychological, social, and economic impact at the individual, family, and societal level. Patients are typically underserved, and clinicians have a poor understanding of ME/CFS.”
“…this is not a psychological disease in etiology.”
The report goes on to point out the lack of diagnostic criteria and the harm that creates; the problems with small enrollment numbers in studies; too much focus on fatigue with too little focus on other important symptoms, like post-exertional malaise; the need to include a wider diversity of patients in research; the need for collaborative, multicenter studies; the need for more rigorous studies, therapeutic targets, translational efforts, and more.
Though this report ratifies what so many in the ME/CFS community have known for years, it lacks “teeth”; the recommendations are broad and there is no direct funding associated with them. The charge now is upon the scientific community to increase its rigor and the NIH to significantly increase funding to support it.
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) convened a working group to craft a response to the P2P draft report in the hopes of strengthening it by providing expert feedback. Skillfully led by CFSAC member Donna Pearson, and dedicating countless hours over the holidays, the working group – comprised of advocates, researchers and ME/CFS experts – judiciously reviewed the P2P draft report and created a thorough, detailed, and thoughtful response. As an active (non-voting) member of the CFSAC, Carol Head, SMCI president and CEO, participated in that work. On Tuesday, January 13, 2015, the CFSAC held a special-called meeting to finalize and approve their official response to the P2P draft report.
The CFSAC call was recorded and will be posted HERE
The official CFSAC comments on the P2P report are expected to be posted by Friday, January 16th HERE as well.
SMCI is endorsing the CFSAC response in its official response to the P2P draft report. Our hope is that the work done through the P2P and the soon-to-be-released Institute of Medicine (IOM) recommendations will serve as an actionable wake-up call. And we hope that these efforts, along with the voices of patients, advocates, and groups like SMCI, will move us to significantly increased funding, more rigorous science and dramatic steps forward for all affected by ME/CFS.
Any stakeholder is invited to offer their feedback on the draft report. Access it HERE
Please reference the corresponding line number of the report. And, as there are two slightly different versions of the report in circulation, please utilize the version in this link and note “I am referring to the report with 389 line numbers” so that feedback can be correctly attributed to the proper line number.
Submit your comments no later than midnight on Friday, January 16, via:
Email – firstname.lastname@example.org
Office of Disease Prevention
National Institutes of Health
ATTN: Paris A. Watson
6100 Executive Boulevard, Suite 2B03
Bethesda, MD 20892
If you were unable to participate in/watch the P2P meeting, and want to access that information now, you can access the video archive HERE.
On day 2, our own Dr. Suzanne Vernon spoke to the panel about the importance of the patient perspective and their voice in research in a session they titled “What Outcomes Represent Improvement, Recovery, Prevention, Benefits or Harm?” You can advance to her presentation at time code 3:46:00