IACFS/ME
BOARD OF DIRECTORS
PRESIDENT
Fred Friedberg, PhD
Stony Brook University
Stony Brook, NY
TREASURER
Kenneth Friedman, PhD
UMDNJ-New Jersey
Medical School
Newark, NJ
SECRETARY
Staci R. Stevens, MA
University of the Pacific
Stockton, CA
Jonathan R. Kerr, MD, PhD
St. George's University
of London
London, England
Gudrun Lange, PhD
UMDNJ-New Jersey
Medical School
Newark, NJ
Lee B. Meisel, MD, JD
Epiphany Biosciences
San Francisco, CA
Teruhisa Miike, MD, PhD
Kohbe, Japan
Rosamund Vallings, MB BS
RD2 Papakura,New Zealand
Suzanne D. Vernon, PhD
Charlotte, NC
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CDC Job Opening: Chief of CFS Research Program
Deadline for job applications: Fri. Sept. 17th, 2010
The Centers for Disease Control has issued a job announcement for Chief, Chronic Viral Diseases Branch, which includes primary responsibility for the direction and substance of the Chronic Fatigue Syndrome research program. This program contains the largest single budget (US) for CFS research ($5 million/yr).
The Chief serves as principal investigator of epidemiology studies, and personally develops laboratory research programs designed to improve diagnosis and management of human papillomavirus (HPV)-associated cancers, CFS, and other related unexplained or chronic illnesses. (HPV expertise is desirable but not essential.)
This is a critically important position that can influence science, practice, and health policy related to CFS. We need highly qualified individuals to apply for this position. Please note the deadline is this Fri; Sept. 17th.
For the complete announcement, click on:
http://jobview.usajobs.gov/GetJob.aspx?JobID=90144747&FedEmp=Y&FedPub=Y&sort=rv,-dte
Thank you.
Fred Friedberg
Fred Friedberg, PhD
President
IACFS/ME
www.iacfsme.org
July 30, 2010
Science and the Hold on XMRV Studies
A positive XMRV study in CFS conducted by a NIH/FDA research team was accepted for publication in the Proceedings of the National Academy of Sciences (PNAS) but was then put on hold apparently in June, 2010. As reported in an online editorial in Nature (July 2; http://www.nature.com/news/2010/100702/full/news.2010.332.html), one scientist familiar with the issue said that the journal's editor-in-chief sent the paper out for further review after government agencies requested the publication delay. That review came back with requests for additional studies.
Stephen Monroe, director of the CDC's Division of High-Consequence Pathogens and Pathology, called the delay a "strategic pause" given the conflicting findings between the CDC’s own XMRV negative study in CFS -- also put on hold but recently published in Retrovirology --and the positive XMRV findings of the NIH/FDA group (still unpublished). Of course, we’re concerned about a full airing of the scientific data on XMRV. But it appears that the transparency and timely reporting that is so essential to science was not in evidence in this unusual government action.
Examining the Rationale of the Hold
Although the specific purpose of the hold was the subject of speculation among scientists and others, it was not clearly explained by any government official or journal editor. If the purpose of the hold was to re-examine conflicting data with an effort toward reconciling disparate findings, the approach taken here did not achieve this goal (as of this writing). In my view, if the extraordinary step is taken to delay conflicting peer-reviewed studies accepted for publication, then both studies should be held until all further analyses are done.
Once all additional work is completed, the research groups should review each other’s manuscripts. This should be followed, in one of the journals, with a thoughtful discussion among the investigators that examines the discrepancies between the studies with the goal of providing informed recommendations for subsequent research. Finally, both articles should be published simultaneously or as close to it as possible. This process has the potential to advance the science.
By contrast, the CDC article alone was published weeks ago without considering or even citing the findings of the PNAS paper. I argue that the CDC paper should have been held until its authors could respond to the NIH/FDA study when its additional work is completed. If there’s still time, I would like to see the CDC and NIH/FDA research groups have a discussion of their conflicting findings with the aim of publishing their talks in the issue of PNAS that contains the NIH/FDA study.
Implications of a Second Positive XMRV Study
Once we get past the hold period, the publishing of the second XMRV positive paper is likely to change the nature of the debate. Prior to this second positive report, the original Science paper was becoming an outlier study that could be dismissed in light of several published failures to replicate. With the new replication, the XMRV link to CFS, whatever it may be, will become an ongoing controversy that demands resolution of key issues such as the differences in testing protocols for XMRV as well as the characteristics of patient groups that are tested.
XMRV and the Ottawa 2011 Conference
Our Sept. 2011 biennial conference in Ottawa will devote a full session to XMRV. And we will put together an expert discussion panel representing different points of view about XMRV. This is the kind of scientific forum that we need to constructively address this ongoing research issue.
Fred Friedberg, PhD
President
IACFS/ME
June 23, 2010
Recommendation: Blood donation from CFS/ME patients discouraged
Blood donations from patients with CFS/ME have been discouraged by health authorities in Canada, New Zealand, and Australia. This policy is based on the possibility of transfusion transmission of the XMRV retrovirus which has been found in a CFS/ME study published in 2009. On June 18, 2010, the US-based AABB Interorganizational Task Force on the XMRV retrovirus recommended an interim measure intended to actively discourage patients with a current or past diagnosis of CFS/ME from donating blood. The task force includes representatives from the blood community, patient advocacy representatives, XMRV experts and liaisons from several government agencies, including the Office of the Assistant Secretary for Health, the Centers for Disease Control and Prevention, the Food and Drug Administration and the National Institutes of Health.
The IACFS/ME endorses these blood donation policies as a precautionary measure to be re-evaluated when there is definitive data revealing the relationship between XMRV and CFS/ME, and the possibility of transmitting XMRV via blood donation.
July 30, 2010
May 10, 2010
Testimony to CFS Advisory Committee
As president of the International Association for Chronic Fatigue Syndrome, representing over 500 biomedical and behavioral professionals, I thank the CFSAC for allowing me to submit this written testimony.
First I would like to endorse in the strongest terms the renewal of the CFSAC charter. The CFSAC is the sole government-sponsored group to provide a national forum for scientific and public policy discussions related to CFS. Over the past year, the committee has proven its value by airing issues critical to the CFS community. This included a thoughtful review and well-articulated recommendations for the CFS program at the Centers for Disease Control. As such, I would like to thank committee members for their commendable efforts to advance the science and recognition of CFS, an illness that continues to be stigmatized and medically under-served.
Second, this committee is uniquely suited to serve as an independent voice for the important concerns of the medical and research communities. One major concern is the definition of the illness--a topic referred to in the CFSAC Charter as “current and proposed diagnosis.” The 2003 Canadian Case Definition offers substantive improvements over currently used definitions: It better identifies the symptom constellation of CFS and provides a cleaner differentiation with psychiatric disorder and less severe forms of chronic fatigue. Without a well-focused definition, many non-CFS patients are erroneously folded into study samples. This impedes our efforts to advance the understanding of the illness. I ask that the CFSAC consider opening up a regular session for research presentations and ongoing discussion focused on the Canadian criteria. I believe that scientific progress in this difficult domain will be furthered by this effort.
In addition, the regularly scheduled public forum of CFSAC is well-suited to present recent developments in the critically important search for etiology. Inviting leading experts to report on etiology provides timely input to the committee and the CFS community in general. Informed by current data, the committee can evaluate the impact of current evidence on diagnosis, treatment, and clinical care and then formulate recommendations for research and public policy goals. One long-standing issue is the stigmatization and even ridicule that is a fact of life for many patients with CFS/ME. The CFSAC can work with all appropriate agencies, particularly the Centers for Disease Control, to encourage new public initiatives that convey a message of legitimacy for this illness. Without legitimacy, the ability of this field to attract new scientists and clinicians is limited.
Finally, we request that the CFSAC meeting be restored to its full 2 day schedule. The productivity of the past year emerged from the 2 day meetings which allowed time for scientific presentations, public testimony, and useful interactions among committee members. The committee rose to the challenges of the past year by writing bold and important policy recommendations --recommendations informed by current evidence, patient concerns, and the immediacy of public comment and discussion.
I’d like to thank the committee once again for its service to the CFS community. Please know that your efforts are appreciated.
Thank you.
Fred Friedberg
Fred Friedberg, PhD
President
IACFS/ME
DSM-5 May Include CFS as a Psychiatric Diagnosis
March 25, 2010
Important Alert to the CFS/ME Community:
The DSM-5 Task Force of the American Psychiatric Association is asking for public comment to their proposed DSM-5 manual of psychiatric diagnoses scheduled for release in 2013. We are concerned about the possibility of CFS/ME being classified as a psychiatric disorder, based on comments made in their Work Group on somatoform disorders (see letter below). Of course, such an action would be a major setback in our ongoing efforts to legitimize and increase recognition of the illness.
We urge you to submit your comments about this disturbing possibility to the DSM-5 Task Force ( www.dsm5.org). You only need to register on this website to submit your comments. (Once you have a login, click on Proposed Revisions, and then Complex Somatic Symptom Disorder. At the bottom of page is a section for public comments.) Comments written from the perspective of a working professional (researcher, clinician, educator) will have the most influence.
Comments must be submitted by April 20 th.
Thank you.
Fred
Fred Friedberg, PhD
President
IACFS/ME
Letter To the DSM-5 Task Force:
On behalf of the board of directors and the membership of the International Association for Chronic Fatigue Syndrome (IACSF/ME), I would like to express my deep concern about the possible reclassification of CFS as a somatoform disorder in DSM-5. Although the proposed new category of Complex Somatic Symptom Disorder (CSSD) appears reasonable, we are concerned about CFS, a complex illness condition, becoming a subtype of CSSD or a distinct stand alone psychiatric diagnosis. We base our concern on comments by Dr Simon Wessely (DSM-5 Work Group; September 6-8, 2006) who concluded that “we should accept the existence …of functional somatic symptoms/ syndromes …[apart from depression and anxiety] and respect the integrity of fibromyalgia, irritable bowel syndrome, chronic fatigue syndrome, and their cultural variants.” This comment suggests the possibility of a new DSM-5 somatoform diagnosis that subsumes CFS as one manifestation or subcategory.
It is the position of the IACFS/ME that placing CFS in the new category of CSSD would not be reasonable based upon the body of scientific evidence and the current understanding of this disease.
The classification of CFS as a psychiatric disorder in the DSM-5 ignores the accumulating biomedical evidence for the underpinnings of CFS in the domains of immunology, virology, genetics, and neuroendocrinology. Over the past 25 years, 2,000 peer review CFS studies have been published. The data support a multifactorial condition characterized by disturbances in HPA function, upregulated antiviral pathways in the immune system, and genetic abnormalities. Unlike clinical anxiety and depression, psychotropics are generally ineffective for CFS and standard medical advice to exercise and rest or resume activities often leads to symptom worsening. In contrast to clinical depression, motivation is much less affected in CFS and the desire to be active remains intact. Furthermore, large differences in gene expression have been recently found between CFS and endogenous depression (Zhang et al., 2009)
Although biomedical research to elucidate the mechanisms of CFS is a work in progress, the medical uncertainties surrounding CFS should not be used as justification to classify it as a psychiatric illness. As stated by Ricardo Araya MD: “The absence of a medical explanation [for an illness] should not confer automatic psychiatric labeling (Sept.6-8, 2006; Somatic Presentations of Mental Disorders; DSM-5 Work Group).”
With respect to DSM-5, we support a recent editorial in the British Medical Journal by Dr. Allen Francis (2010), chair of the DSM-IV task force, who stated that any new DSM diagnosis should be based on “a careful risk-benefit analysis that includes ….a consideration of all the potential unintended consequences (p. 492)”. The likely unintended consequences of a CFS diagnosis in the new DSM will be increased stigmatization and even lower levels of recognition by primary care physicians and the medical community in general. As a result, we believe such an action would be counterproductive to our ongoing efforts to educate physicians about the assessment and clinical care of these patients.
The IACFS/ME is an organization of more than 500 biomedical and behavioral professionals whose mission is to promote, stimulate, and coordinate the exchange of ideas related to CFS research, patient care, and treatment. We support scientific advocacy efforts for increased research funding. We also support public health policy initiatives to increase the recognition and reduce the stigmatization that continues to plague these debilitated and medically underserved patients.
Thank you for your attention.
Sincerely,
Fred Friedberg, PhD
President
IACFS/ME
www.iacfsme.org
CFS Leadership Change at the Centers for Disease Control (CDC)
February 3, 2010
Dr. William C. Reeves will be leaving his post as head of the CFS program at CDC as of Feb. 14th to accept assignment as Senior Advisor for Mental Health Surveillance in the Public Health Surveillance Program Office. Dr. Elizabeth Unger will serve as Acting Chief, Chronic Viral Diseases Branch, which includes the CFS program.
I believe that the leadership change effort of the IACFS/ME over the past several months was critical to this successful outcome. In particular, strong and compelling testimony from a number of high profile CFS professionals, including several IACFS/ME board members, at the CFS Advisory Committee meeting in Washington, DC (Oct., 2009) played an important role in publicly airing the long-standing problems with the CDC program. The success of this effort shows that the CFS community can help to shape and move forward a scientific agenda that confers to CFS the recognition that it truly deserves.
Best regards,
Fred
Fred Friedberg, PhD
President
10th International IACFS/ME Research & Clinical Conference
Translating Evidence into Practice
Chronic Fatigue Syndrome, Fibromyalgia, and Related Illnesses
September 22-25, 2011
Crowne Plaza Hotel
Ottawa, Ontario
CANADA
Hosted by the National ME/FM Action Network of Canada
http://www.mefmaction.net/
Canadian newsletter
This conference will consist of a 4-day professional meeting and a one day patient meeting which will coincide with a day of professional workshops. It is anticipated that this event will be accredited for continuing medical education.
The professional conference themes will focus on fatigue, pain, sleep, pediatrics, cognition and brain function in ME/CFS, fibromyalgia and related illnesses. These topics will be addressed in scientific sessions on assessment and treatment and in original biomedical research particularly in the fields of immunology, virology and neuroendocrinology. There will also be workshops for clinicians and researchers.
Further information on the conference will be posted shortly.
If you or your organization are interested in sponsoring the conference, please contact me at fred.friedberg@stonybrook.edu or call 631 632-8252.
Thank you.
Fred
Fred Friedberg, PhD
President
IACFS/ME
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October 29, 2009
To the CFS/ME Community:
I presented the statement below to the CFS Advisory Committee meeting in Washington, DC, Oct. 29-30, 2009. The most urgent and important issue right now is changing the leadership and direction of the CFS program at CDC, as $25 million in research funding is at stake. If this meeting does not change the status quo then further advocacy actions will be necessary.
Fred Friedberg, PhD
President
IACFS/ME
As president of the IACFS/ME, I thank the CFS Advisory Committee for this opportunity to present testimony on behalf of my organization. Six months ago the three major CFS scientific advocacy groups, the IACFS, the CFIDS Association of America, and this committee all recommended new, open-minded leadership at the CFS research program in the Centers for Disease Control. We commend this bold and important action by the CFSAC.
Despite this unprecedented consensus, the CDC has shown no indication of changing its CFS program leadership. This is surprising given its track record to date. After 25 years (and over $100 million) of CDC research, chronic fatigue syndrome remains a stigmatized illness without substantive progress on public health policy or objective diagnosis and treatment. And their new 5 year $25 million plan fails to inspire any confidence that change will occur.
In fact, the consensus recommendation of these scientific advocacy groups was based on dissatisfaction with the CDC’s ill-conceived and impossibly far-reaching 5 year research plan.
President Obama said in his inaugural address: The fundamental question of our time, is not whether government is too big or too small, it will be whether it works. The CDC is the world public health authority; It can certainly provide more effective leadership in this poorly understood domain.
I am speaking not only for my organization but for several prominent biomedical scientists whose opinions should be considered in our ongoing efforts to effect change. These individuals were unable to speak today.
Gudrun Lange was a member of the distinguished external review panel that in 2008 evaluated the CFS program at CDC; She asked me to read this quote:
“I am very disappointed that CDC has not been more proactive in implementing important suggestions made by peer reviewers. The committee recommended that CDC, as the lead health agency dealing with CFS, establish closer relationships with other traditional public health agencies to further promote CFS as a significant health concern. This includes using public service announcements to alert the public about CFS as an important health issue. In addition, it is rather surprising that CDC has not shown any initiative to address obvious research questions posed by the H1N1 epidemic. Why are we not surveilling the population for post-infectious fatigue following H1N1?”
Distinguished UK scientist and geneticist, Jonathan Kerr, expressed the following:
Research output on CFS from the CDC in the last 5 years has been principally in the areas of gene expression and mutation. These studies used patients who did not attend CFS clinics and were not diagnosed by recognised CFS clinicians. A microarray was utilised which did not represent the entire human genome (yet such an array was available at the time). But, at no time were the microarray gene profiles confirmed using real-time PCR, a standard procedure in microarray studies because the arrays are very sensitive but not very specific. The findings of these papers do not lead anywhere and were not followed up by CDC. They do not provide insights into pathogenesis, nor do they indicate candidate treatment targets. The authors made no effort to explain their work in context of the available CFS gene expression literature.
Recommendations
Although the CDC program has ignored the views of scientific advocacy groups, their CFS program will not go forward without challenge. Nor will this widely supported protest be confined to one meeting of this committee. We ask the CFSAC to support us in our ongoing efforts. We respectfully recommend the following:
- A continuing critical focus on the CDC chronic fatigue program during this and subsequent meetings until the leadership is changed.
- A new scientific forum at the CFSAC that allows biomedical scientists who wish to speak at the meeting the opportunity to do so. This is important because prominent scientists and clinicians who attempted to register to speak 3 weeks in advance of this meeting were wait- listed.
- Permission for non-US biomedical experts in CFS to participate in these scientific forums. They are not permitted to speak now. Given that there are so few CFS experts worldwide, we need informed views to make informed recommendations.
If we the CFS scientific community remain united in common purpose we can lead the way to major new public policy initiatives and research programs that advance the recognition and understanding of this still poorly understood illness.
Thank you.
Date: October 21, 2009
New Study finds link between XMRV retrovirus and CFS/ME
An article published online (10/8/09) in the journal Science reported that 68 of 101 patients with CFS, or 67 percent, were infected with an infectious virus, xenotropic murine leukemia virus-related virus, or XMRV. By contrast, only 3.7 percent of 218 healthy people were infected. XMRV is a retrovirus, a member of the same family of viruses as the AIDS virus. These viruses carry their genetic information in RNA rather than DNA, insert themselves into their hosts’ genetic material, and stay for life.
These new findings raise the possibility that XMRV could be a possible cause of the illness or an effect of altered immune function in CFS patients who are more susceptible to these viruses. More studies are needed to explain the occurrence of XMRV in the genetic material of CFS patients.
The research was carried out by principal investigator Judy Mikovits and colleagues from the Whittemore Peterson Institute, the National Cancer Institute, and the Cleveland Clinic in the US.
This new finding about the XMRV virus is an exciting development, although its significance has yet to be determined. First, the study needs to be replicated in well-defined CFS samples in the community and in physician’s offices. Prospective studies (following patients over time) are essential to determine if the virus is contributing to the cause, persistence, and/or severity of the illness.
The good news is that if XMRV is linked to CFS, there are many antiviral drugs that have already been safety tested in H.I.V. that may inhibit XMRV replication. Thus studies to determine the safety and efficacy of these antiviral agents for CFS/ME patients could be designed and executed in short order.
For an informative Q and A about the study, click on the link below:
http://www.wpinstitute.org/xmrv/xmrv_qa.html
Fred Friedberg, PhD
President
IACFS/ME
Mission
The mission of the IACFS/ME is to promote, stimulate and coordinate the exchange of ideas related to CFS, ME and fibromyalgia (FM) research, patient care and treatment. In addition, the IACFS/ME periodically reviews the current research and treatment literature and media reports for the benefit of scientists, clinicians and patients. The IACFS/ME also conducts and/or participates in local, national, and international scientific conferences in order to promote and evaluate new research and to encourage future research ventures and cooperative activities to advance scientific and clinical knowledge of these illnesses.
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