What is Chronic Fatigue Syndrome
Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS) and various other names, is a syndrome (or group of syndromes) of u...
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CFIDS Assoc. comments at CDC CFS meeting
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From the recent CDC CFS meeting-
Katrina Berne- Board of Directors, Jennifer Spotila- Chairman of the Board of Directors, and Kim McCleary- President and CEO, CFIDS Assoc. of America ******************************** Katrina Berne, PhD's Presentation at the CDC Meeting on April 27, 2009 STATEMENT FOR THE APRIL 27, 2009 CDC MEETING REGARDING THE CHRONIC FATIGUE SYNDROME RESEARCH PLAN I appreciate the opportunity to address the CDC regarding my views on its proposed research program. I serve on the Board of Directors of The CFIDS Association of America. I am a Clinical Psychologist specializing in the treatment of people with CFS and their families and author of the book Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses. I have served on panels to develop educational curricula for physicians and for behavioral health professionals. In addition I am a CFS patient who became ill in late 1984 – now in my 25th year of illness, having declined over the years and ultimately having become disabled in 2001. In fact I have been ill for approximately the same length of time as the CDC’s involved in CFS. This represents a sad silver anniversary; as I reflect on my years with the illness and the CDC’s inadequate efforts over that time, it would be accurate to say neither of us has made any significant progress. The history of the CDC in regard to CFS is dismal, beginning with assigning a name both trivializing and inaccurate, an inadequate and inaccurate case definition, misappropriation of funds and poor-quality research, in terms of both the focus of its studies and its methodology. The CDC has not had a meaningful or significant impact on our understanding of the illness or how to treat it. Along with quite a few people from the CDC, I served on a committee whose purpose was to develop an educational curriculum for professionals. To my disappointment, those from the CDC were ill-prepared to make a meaningful contribution and did not seem to have an accurate understanding of the illness. The CDC has acknowledged that CFS is a complex, chronic illness that affects millions of Americans, one that costs our nation a considerable amount of money in lost productivity and wages, medical costs and disability benefits and that it therefore merits immediate action and rigorous study. However the CDC, although in a unique position to make progress in the understanding and treatment of CFS, has continually failed to do so. The CDC has invited comments regarding its five-year research program for discussion at its May 27, 2009 meeting but on short notice and without prior release of the details regarding this program. Unfortunately this seems to be consistent with CDC’s slipshod approach to the study of CFS over the years – lip service without evidence of any real planning or commitment behind it. The CDC and others have conducted an abundance of studies of psychological and psychosocial aspects of CFS and epidemiological studies with continual revision of the estimated number of persons with CFS. Given the large number of people with the disorder, I am dismayed with the relative paucity of attention to the pathophysiology, cause(s), biomarker(s) and treatment of CFS, obviously not a priority to the CDC. The lack of shared data from previous CDC studies another roadblock to progress. Researchers operating in a vacuum rather than cooperatively will not solve the puzzle that is CFS. I urge the CDC to share their data – not just their findings but their raw data - and to work collaboratively with non-CDC researchers to get the answers we need. Sadly, the CDC has not appeared to be very interested in delving into CFS with the necessary rigor to make significant progress and I fear that the program currently under discussion will be more lip service that results in little participation by the CDC in meaningful CFS research. It is my understanding that no one in the CDC attended the March, 2009 symposium presented by the International Association for ME/CFS in Reno, Nevada. This is a strong indicator of the CDC’s lack of desire to keep abreast of recent research developments, hardly a good sign of interest in moving forward by building on existing knowledge. To summarize, my suggestions for the CDC’s 5-year plan for future research is as follows: Adoption of an accurate case definition, e.g., the Canadian case definition. Shared Data: The CDC should allow open access to all research-related data. Cooperation and collaboration with researchers in the public and private sectors are vital to assembling the puzzle pieces of CFS without unnecessarily duplicating research efforts. Rigorous Science: The CFS Research Program should be directed toward the meaningful study of CFS – its pathophysiology, cause(s), marker(s), treatment and ultimately its cure. A purposeful effort and timely, well-focused research, rather than a scattered, half-hearted approach, is necessary to achieve this goal. Spending and accountability: Curtail excess spending to delegate funds to a focused and relevant research program. The CDC’s consistent lack of meaningful involvement, wanton spending practices and lack of progress have been a continuing, dismal disappointment to those of us who have CFS and/or assist and advocate for those who have CFS. We need to see a definitive plan and steps to implement that plan to know that the CDC is dedicated to progress in CFS research. Efforts to date have merely compounded the loud and clear message that the CDC does not take CFS seriously and has no organized approach to investigating this complex and devastating disorder. I would like to believe that the CDC takes CFS seriously and is willing to dedicate the necessary funding, concerted effort and rigorous, high-quality research necessary to achieving real progress, although I have serious doubts that this is the case. I have little to be optimistic about when I examine past lack of performance. By the CDC’s own count, millions of lives rest upon its decisions and follow-through. I would like to believe that this time will be different. Katrina Berne, Ph.D. Posted on 04/29/09, 12:04 am |
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(Cont'd)
Jennie Spotila's Presentation at the April 27, 2009 CDC Meeting My name is Jennifer Spotila, and it is my honor to serve as Chairman of the Board of Directors for the CFIDS Association of America. In November 2006, I sat in a room at the National Press Club and participated in the launch of the CDC’s public awareness campaign for CFS. Then-Director Dr. Julie Gerberding called CFS an "urgent reality," on par with avian flu. Swine flu might be a better choice today. And then-Assistant Secretary for Health Admiral John Agwunobi announced 7 new NIH grants, saying, “There's so much more research that needs to occur. We're pleased to announce this work, but we also commit to doing more as time goes on.” The promises made that day in November 2006 have faded away. Today, you have requested input only "on the CFS strategic research plan, not on CDC’s overall CFS program." Strategic plans are forward-looking, but not to the exclusion of looking back. In order to draft a strategic plan, CDC must consider its overall CFS program, including the ways in which the program has fallen short or failed. Given the narrow invitation you have extended to stakeholders today, asking us to comment only on the plan and not the overall program, I wonder whether your internal planning process has been similarly myopic. Your "Draft Strategic Research Plan General Outline" (http://cdc.gov/cfs/draft_research_plan.htm) was made available for stakeholder review only five days ago. This outline is so devoid of specifics that the only input I can offer is to point out what is missing. What is the priority order of the four goals? What funding needs have been identified? How will funding be allocated among the goals? What are the milestones and performance measures? Will you continue the use of third-party contractors for research studies? What are your plans and timeline for data sharing? How will you engage extramural researchers? Does the absence of any reference in the draft outline to patient registries or sample repositories mean that those initiatives will be abandoned? How, exactly, do you propose to develop international consensus on the management of CFS? Will you continue the use of the empiric criteria for CFS? What efforts will be made to expand use of those criteria by other researchers? I could go on. Your general outline could have been written two years ago, or ten. "Refine understanding of the etiologic pathways," "improve clinical management," "move CFS into the mainstream.”" Yes, yes, of course. There is nothing new in this list of objectives. There is no specificity, no measurable commitments, and no accountability. There is no acknowledgement of the many problems in the CFS program, and no plan to fix them. I offer my own list of immediate priorities: Move quickly to utilize systems already in place to release the program’s research data to other investigators. Conduct a thorough audit of the program’s use of funds and failures in oversight. This review should be conducted by personnel outside the program, and should include an examination of the program’s practice of obligating funds to third-party contracts despite their lack of performance. Focus on defining and diagnosing CFS through a multidisciplinary effort to identify objective biomarkers. CDC may be an institution committed to excellence, but the CFS research program is losing its vigor and relevance, however excellent individual program personnel may be. If CDC fails to address the systemic problems within the CFS program, if corrective measures are not undertaken to address the wasteful spending and lack of accountability, then any five-year strategic plan will not be worth the paper it is printed on. Moreover, the opportunity costs of allowing these conditions to continue are incalculable. My input is this: CDC is uniquely positioned to have enormous impact on the state of CFS research, but the CFS program is falling behind and failing its mission. Until you fix that problem, until the program is reinvigorated by accountability and purpose, you will be a barrier to success instead of being a part of it. Fix that problem, and you can truly create a new landscape for CFS. 
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[Cont'd]
Kim McCleary's Presentation at CDC Meeting on April 27, 2009 CDC Stakeholder Meeting on the 5-year Strategic Research Plan My name is Kim McCleary and I am the president & CEO of the CFIDS Association of America, the nation’s largest and most active organization working to make CFS widely understood, diagnosable, curable and preventable. This is my 19th year of service to the organization, and in all that time, I have missed just one public meeting on CFS. I am deeply familiar with the CDC’s research program and CDC staff is quite familiar with me. I’ve got just 5 minutes so I’ll cut to the chase and focus on five areas of concern as the CDC develops its 5 year strategic plan for CFS research. The 4 goals CDC has provided us (http://cdc.gov/cfs/draft_research_plan.htm) are certainly worthy and closely match our organization’s goals. If that was all we had to discuss, we could end the meeting early and be on our way. But a strategic plan requires more than that. (Dr.) Steve (Monroe) has just told us that the swine flu cases in the U.S. make it a national “public health emergency.” With 4 million cases of CFS in the United States alone, what does it take to have CFS declared a public health emergency? I will agree with the four peer reviewers who met in November of last year that at one time, this program was doing good work and contributing to the field and to our understanding of CFS. But the CFS research group has lost its mojo. The CDC’s CFS research group receives half of the (meager amount of) money that the U.S. spends on CFS. Half. CDC has provided extensive financial information on its CFS spending between FY2005-2008, during which time expenditures totaled about $23 million. Since 2000, CDC has spent about $71 million on CFS and it has published 115 peer-reviewed articles in the same time. I doubt most academics could survive with that record. There is a tremendous amount of data housed in this program that needs to be widely shared so we as taxpayers and as advocates yield a better return on our investment than CDC can produce on its own. Second, by virtue of the plan outline posted on the CDC’s website for a CDC RESEARCH plan, it does not seem that three of the four goals are consistent with a research plan for a branch housed in the Coordinating Center for Infectious Diseases. Using organizational information contained in the CDC’s 2008 Congressional Justification document, Goal 2 of the research plan, clearly an education-related activity, appears much better suited to either the National Center for Health Marketing or the National Center for Chronic Disease Prevention and Health Promotion. The same is true of goal 4. But these tasks are not logically part of a research strategic plan and are not well-suited to the individuals and leadership currently working in the Chronic Viral Diseases Branch. Even Goal 3 seems an odd fit. This group has become increasing isolated and insular and is not currently collaborating with any clinical investigators, yet it proposes to develop international consensus on the management of CFS. Note that its clinical recommendations on the web site focus on UK guidelines that are very controversial in that country. How does CDC expect to replicate the success of the clinics in Bibb County, Georgia, that Dr. Royal (from Abt Associates) described? Educating health care professionals is necessary and worthwhile, but it’s cost prohibitive to go town to town with the approach used in Macon. How will CDC address that? Third, this group named the “Chronic Viral Diseases Branch” is currently doing little if any research on viral (or other biological triggers) of CFS. Although they supported the landmark Austrialian Dubbo Infection Outcomes Study, there is no current work to evaluate EBV, HHV-6, enteroviruses and other agents as triggers of CFS, despite the finding that 10% of these and other acute infections do not successfully resolve and result in a CFS-like state. Instead, the group is focused on early life psychological stressors, a risk factor in most chronic illness, and proposes to study whether the economic crisis will result in a higher rate of CFS among respondents in the next phase of the Georgia surveillance study. So, why is this psychosocial dimension the focus of research in the NCVZED and the CVDB? So much opportunity has been lost to study the rates of CFS occurring in the wake of outbreaks of West Nile Virus, avian flu and now swine flu, and other acute infections or chronic exposures like toxins and molds. There is great opportunity cost to the choices that branch leadership has already made in an apparent vacuum within its own center. Fourth, you can’t build a sustainable structure on a weak foundation. Yet, it is the strong belief of many in the CFS community – researchers and patients alike (with all due respect to the four individuals who served as peer reviewers in November) – that the empiric criteria is a weak foundation. It is used only by CDC and defines a different patient population and make its studies difficult – if not impossible – to compare to all other studies. So how much of the $25 million or so that will be dedicated to CDC over the next 5 years will be wasted as a result of this shaky methodological foundation? Last, the clear consensus message at the two most recent international research conferences on CFS has been the need to establish CFS subsets to facilitate research, objective diagnostics markers and more effective treatments. Yet the research outline makes no reference to this need and focuses on the need to identify biomarkers only for “incident CFS” which may leave out all longer duration periods of illness, and most of the patients who are already ill. This is an unacceptable goal for our nation’s public health agency. CDC alone has the resources and infrastructure to understand the long-term health consequences of CFS and we underscore the importance of CDC conducting longitudinal follow-up studies to track patients for several years. However, this is not included in the research plan. Right now we don’t know what happens to patients with long-term illness. I can tell you from having known many patients over almost 20 years now that there are some strange and troubling things that occur. We don’t know whether this is due to an acceleration of aging, consequences of long-term disability, or aspects of CFS that are exacerbated over time in some patients. CDC is the only agency that can adequately study it. Finally, for any strategic plan it is necessary to address performance milestones, accountability measures and transparency, especially since President Obama made these priorities in the earliest days of his presidency. I know that these values are held by CDC more broadly and hope they will be enforced at the branch level through this plan.
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All of the above was taken from the CFIDS Assoc. Facebook page-
http://www.facebook.com/notes.php?...
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Thank you so much for posting these. I listened to the entire meeting, and have read these transcripts on Facebook as well. I so wish we could have transcipts from many of the patient speakers.
Once again thanks for posting this. Deborah
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Hello Beanless,
Thank you for these posts and keeping us up to date about what is or isn't happening with the CDC and their research and programs.
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