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9/2/2014
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, multifaceted disorder characterized by extreme fatigue and a host of other symptoms that can worsen after physical or mental activity, but do not improve with rest. In addition to extreme fatigue, people with ME/CFS may also experience:

Widespread muscle and joint pain
Sore throat
Tender lymph nodes in the neck or armpit
Headaches
Sleep problems
Difficulty with short-term memory or concentration
Effects of the illness can range from moderate to debilitating, and can substantially impact everyday functioning. Routine daily activities such as cooking meals, brushing teeth, and caring for children become difficult. Additionally, sensitivity to environmental factors (e.g., noise, light, chemicals) may force many individuals with ME/CFS into seclusion or withdrawal from society.

The onset of ME/CFS symptoms may be sudden—for example, immediately following a viral illness such as the flu—or gradual, with no discernible attachment to a specific event or time. The U.S. Centers for Disease Control and Prevention (CDC) reports over 1 million adults with ME/CFS in the United States, and recent evidence has shown a higher prevalence in females compared to males. Certain racial/ethnic groups have also been found to be at an increased risk for ME/CFS; most notably Native American and African American populations. The economic burden of ME/CFS, including annual health care costs, is estimated to be between $1.9 billion and $7.2 billion.

There are many aspects of ME/CFS that are problematic. First, the underlying mechanisms are unclear. There are differing views as to whether ME/CFS is a central nervous system, metabolic, infectious or post-infectious, cardiovascular, immune system, or other type of disorder. Second, there is little agreement among clinical and research professionals, as well as patient groups, regarding the name of the illness. The name myalgic encephalomyelitis or ME is more commonly used in Europe and Canada, while the name chronic fatigue syndrome or CFS is used more often in the United States and Australia. Yet the acronym ME/CFS is increasingly being used worldwide. Third, no laboratory tests exist for diagnosing ME/CFS, and its diagnosis is one of exclusion. All other illnesses with overlapping symptoms must be ruled out prior to an ME/CFS diagnosis. Fourth, there are no drugs or therapies approved by the U.S. Food and Drug Administration (FDA) to treat ME/CFS. Clinical trials to test drug or therapy effectiveness, and drug development to target the underlying cause, are difficult to conduct because of the unknown causes, varied symptom profile, and lack of concurrence regarding diagnostic criteria. Lastly, medical professionals disagree on many aspects of ME/CFS, including whether the illness is real, and there is no definitive answer about the effectiveness of current therapies (e.g., diet, use of off-label or experimental drugs).

The 2014 Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome will seek to clarify:

How the research on ME/CFS using multiple case definitions has contributed to the state of the current scientific literature on diagnosis, pathophysiology, treatment, cure, and prevention of ME/CFS

How the measurement outcomes (tools and measures) currently used by researchers of ME/CFS are able to distinguish among those patients diagnosed with ME/CFS, including the sensitivity of the tools and measures to identify subsets of patients according to duration, severity, nature of the illness, onset characteristics, and other categorizations

How the research on treatments or therapies shown to be effective in addressing symptoms of ME/CFS will lead to an understanding of the underlying pathology associated with ME/CFS

How innovative research approaches have provided an understanding of the pathophysiology of ME/CFS, and how this knowledge can be applied to the development of effective and safe treatments.

Initial planning for each Pathways to Prevention workshop, regardless of condition, is coordinated by a Working Group that nominates panelists and speakers, and develops and finalizes questions that frame the workshop. After finalizing the questions, an evidence report is prepared by an Evidence-based Practice Center, through a contract with the Agency for Healthcare Research and Quality (AHRQ). During the 2-day workshop, invited experts discuss the body of evidence, and attendees have opportunities to provide comments during open discussion periods. After weighing evidence from the evidence report, expert presentations, and public comments, an unbiased, independent panel prepares a draft report that identifies research gaps and future research priorities. The draft report is posted on the ODP website, and public comments are accepted for 14 days. The final report is then released approximately 2 weeks later.

For more information go to https://prevention.nih.gov/programs-events/pathways-to-prevention/upcoming-workshops/me-cfs

Air date: 12/10/2014 8:00:00 AM


9/2/2014

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, multifaceted disorder characterized by extreme fatigue and a host of other symptoms that can worsen after physical or mental activity, but do not improve with rest. In addition to extreme fatigue, people with ME/CFS may also experience:

Widespread muscle and joint pain
Sore throat
Tender lymph nodes in the neck or armpit
Headaches
Sleep problems
Difficulty with short-term memory or concentration
Effects of the illness can range from moderate to debilitating, and can substantially impact everyday functioning. Routine daily activities such as cooking meals, brushing teeth, and caring for children become difficult. Additionally, sensitivity to environmental factors (e.g., noise, light, chemicals) may force many individuals with ME/CFS into seclusion or withdrawal from society.

The onset of ME/CFS symptoms may be sudden—for example, immediately following a viral illness such as the flu—or gradual, with no discernible attachment to a specific event or time. The U.S. Centers for Disease Control and Prevention (CDC) reports over 1 million adults with ME/CFS in the United States, and recent evidence has shown a higher prevalence in females compared to males. Certain racial/ethnic groups have also been found to be at an increased risk for ME/CFS; most notably Native American and African American populations. The economic burden of ME/CFS, including annual health care costs, is estimated to be between $1.9 billion and $7.2 billion.

There are many aspects of ME/CFS that are problematic. First, the underlying mechanisms are unclear. There are differing views as to whether ME/CFS is a central nervous system, metabolic, infectious or post-infectious, cardiovascular, immune system, or other type of disorder. Second, there is little agreement among clinical and research professionals, as well as patient groups, regarding the name of the illness. The name myalgic encephalomyelitis or ME is more commonly used in Europe and Canada, while the name chronic fatigue syndrome or CFS is used more often in the United States and Australia. Yet the acronym ME/CFS is increasingly being used worldwide. Third, no laboratory tests exist for diagnosing ME/CFS, and its diagnosis is one of exclusion. All other illnesses with overlapping symptoms must be ruled out prior to an ME/CFS diagnosis. Fourth, there are no drugs or therapies approved by the U.S. Food and Drug Administration (FDA) to treat ME/CFS. Clinical trials to test drug or therapy effectiveness, and drug development to target the underlying cause, are difficult to conduct because of the unknown causes, varied symptom profile, and lack of concurrence regarding diagnostic criteria. Lastly, medical professionals disagree on many aspects of ME/CFS, including whether the illness is real, and there is no definitive answer about the effectiveness of current therapies (e.g., diet, use of off-label or experimental drugs).

The 2014 Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome will seek to clarify:

How the research on ME/CFS using multiple case definitions has contributed to the state of the current scientific literature on diagnosis, pathophysiology, treatment, cure, and prevention of ME/CFS

How the measurement outcomes (tools and measures) currently used by researchers of ME/CFS are able to distinguish among those patients diagnosed with ME/CFS, including the sensitivity of the tools and measures to identify subsets of patients according to duration, severity, nature of the illness, onset characteristics, and other categorizations

How the research on treatments or therapies shown to be effective in addressing symptoms of ME/CFS will lead to an understanding of the underlying pathology associated with ME/CFS

How innovative research approaches have provided an understanding of the pathophysiology of ME/CFS, and how this knowledge can be applied to the development of effective and safe treatments.

Initial planning for each Pathways to Prevention workshop, regardless of condition, is coordinated by a Working Group that nominates panelists and speakers, and develops and finalizes questions that frame the workshop. After finalizing the questions, an evidence report is prepared by an Evidence-based Practice Center, through a contract with the Agency for Healthcare Research and Quality (AHRQ). During the 2-day workshop, invited experts discuss the body of evidence, and attendees have opportunities to provide comments during open discussion periods. After weighing evidence from the evidence report, expert presentations, and public comments, an unbiased, independent panel prepares a draft report that identifies research gaps and future research priorities. The draft report is posted on the ODP website, and public comments are accepted for 14 days. The final report is then released approximately 2 weeks later.

For more information go to https://prevention.nih.gov/programs-events/pathways-to-prevention/upcoming-workshops/me-cfs

Air date: 12/9/2014 8:00:00 AM


9/2/2014

Philip S. Chen Lecture

The Office of Intramural Research, Office of the Director, NIH, invites you to the ninth annual Philip S. Chen, Jr., Ph.D. Distinguished Lecture on Innovation and Technology Transfer.

Dr. Kenneth A. Jacobson will present “Purine Receptor Drugs: Future Treatment for Chronic Diseases?” Dr. Jacobson is Laboratory Chief and Senior Investigator at the National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK).

Air date: 10/3/2014 10:00:00 AM


9/2/2014

Advisory Board Meteing

Air date: 9/10/2014 8:30:00 AM


9/2/2014


NLM Advisory Council Meeting

For more information go to http://www.nlm.nih.gov/od/bor/bor.html

Air date: 9/9/2014 9:00:00 AM


9/2/2014

Ethical and Regulatory Aspects of Clinical Research - Session 7

The Department of Bioethics offers this seven to eight week course annually each fall. The course is designed to provide an overview of the important issues in the ethics of human subject research for clinical investigators and others who participate in the conduct of research and is open to the entire NIH community as well as to those from outside NIH. Topics include the history of human subject research ethics, principles and guidelines, study design, subject recruitment, informed consent, and international research. The course is open to the entire NIH community as well as to those from outside NIH. The recommended textbook is Ethical and Regulatory Aspects of Clinical Research, edited by Emanuel et al (Johns Hopkins University Press). The course is taught by guest faculty and faculty members from the National Institutes of Health. This is a required academic program for Bioethics fellows.

Ethical Issues in the Use of Stored Tissue and Data
Sara Chandros Hull PhD
NHGRI and NIH Clinical Center Department of Bioethics

How to think about Incidental Findings
Ben Berkman JD
NHGRI and NIH Clinical Center Department of Bioethics

Air date: 11/12/2014 8:30:00 AM


9/2/2014

Ethical and Regulatory Aspects of Clinical Research - Session 6

The Department of Bioethics offers this seven to eight week course annually each fall. The course is designed to provide an overview of the important issues in the ethics of human subject research for clinical investigators and others who participate in the conduct of research and is open to the entire NIH community as well as to those from outside NIH. Topics include the history of human subject research ethics, principles and guidelines, study design, subject recruitment, informed consent, and international research. The course is open to the entire NIH community as well as to those from outside NIH. The recommended textbook is Ethical and Regulatory Aspects of Clinical Research, edited by Emanuel et al (Johns Hopkins University Press). The course is taught by guest faculty and faculty members from the National Institutes of Health. This is a required academic program for Bioethics fellows.

Exploitation
Alan Wertheimer PhD
NIH Clinical Center Dept of Bioethics

Ethical Issues in International research
Joe Millum PhD
NIH Clinical Center Department of Bioethics and Fogarty International Center

Post trial Obligations and reasonable availability
Seema Shah JD
NIH Clinical Center Department of Bioethics and NIAID Division of AIDS

Air date: 11/5/2014 8:30:00 AM


9/2/2014

Ethical and Regulatory Aspects of Clinical Research - Session 5

The Department of Bioethics offers this seven to eight week course annually each fall. The course is designed to provide an overview of the important issues in the ethics of human subject research for clinical investigators and others who participate in the conduct of research and is open to the entire NIH community as well as to those from outside NIH. Topics include the history of human subject research ethics, principles and guidelines, study design, subject recruitment, informed consent, and international research. The course is open to the entire NIH community as well as to those from outside NIH. The recommended textbook is Ethical and Regulatory Aspects of Clinical Research, edited by Emanuel et al (Johns Hopkins University Press). The course is taught by guest faculty and faculty members from the National Institutes of Health. This is a required academic program for Bioethics fellows.

Informed Consent
Christine Grady RN PhD
NIH Clinical Center Dept of Bioethics

Comparative Effectiveness Trials and Informed Consent
Frank Miller PhD
NIH CC Dept of Bioethics

Conflicts of Interest
Steve Joffe MD MPH
Associate Professor of Medical Ethics and Health Policy University of Pennsylvania

Air date: 10/29/2014 8:30:00 AM


9/2/2014

This meeting gathers external advisors with expertise in biomedical data science. The purpose of this meeting is to chart the future of data science at NIH, and to determine the best course of action that the newly-formed office of the Associate Director of Data Science should take.

Air date: 9/3/2014 8:30:00 AM


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This page last reviewed: December 14, 2010