Oh - I see the link that Suzy (thanks, Suzy) provided from the CAA answers my question about ratification:
Whats Next?
Acceptance for particular disease definitions may come by several different routes. The most common route is for an authoritative institution to lead and sponsor development, publication and circulation of a definition. The 1990 American College of Rheumatology criteria for fibromyalgia is one example. This ME publication was developed as an independent effort, free of sponsorship. The panel reflects diverse expertise and experience with CFS, ME/CFS and ME; however, none of the participants represent professional organizations, funding agencies or policy-making institutions like the National Institutes of Health and Centers for Disease Control & Prevention in the United States or the Medical Research Council in the United Kingdom. Such participation might have added clout that could influence more rapid acceptance and utilization at an institutional level, however it might have also resulted in a different product.
While it lacks the implied institutional endorsement of the 1994 criteria for CFS led by authors at the CDC, this consensus report has a major advantage over the 2003 Canadian clinical criteria for ME/CFS with its publication in a journal with wide circulation in the medical community. (The Journal of Internal Medicine has an impact factor of 5.935, compared to the now-defunct Journal of Chronic Fatigue Syndrome that was never linked to PubMed.) The version published electronically on July 20, 2011 is a provisional paper, with the final version due out in print later this year. It will be interesting to follow formal responses that may be generated through Letters to the Editor and other commentary and analyses, particularly by those who have worked on earlier case definition efforts for CFS, ME and ME/CFS (CFS/ME). The next meeting of the U.S. Department of Health and Human Services CFS Advisory Committee will be a potential venue for discussion of impacts on funding and policy (including Social Security disability), with a recommendation that the U.S. federal agencies adopt ME/CFS as a replacement for CFS still under review by the Secretary of Health and discussion of case definition a regular feature of agency reports and discussion.
It is hoped that this consensus report will be broadly viewed as a positive development in the effort to identify criteria that enhance patient care and research. The response so far reflects a mostly enthusiastic reception, although there is some disappointment about the lack of objective measures to support symptom criteria. The paper provides a theoretical construct, with no data provided to demonstrate whether application of this criteria set results in a more homogeneous patient population than other criteria. There is also some concern about the possibility that the following statement in the papers Conclusions might have the unintended effect of jeopardizing or impeding access to or payments from government and private insurance coverage systems that do not presently recognize ME: Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome. In the United States, most systems (including Social Security) utilize the 1994 CFS definition by Fukuda et al. rather than the 2005 empiric definition by Reeves et al., but the ambiguity about which one constitutes the present CDC definition gives rise to concerns about the impact of this statement when applied in the medical-legal context.
The CFIDS Association considers the ME International Consensus Criteria to be an important publication with potentially far-reaching implications for research, policy and education. We are reviewing it closely and will be seeking input from our Scientific Advisory Board (three members of which are authors on the paper) and others about how this criteria definition might impact comparability with existing literature, funding, health care delivery, reimbursement, disability payments/applications, general awareness and understanding and a wide range of other practical issues.
Acceptance for particular disease definitions may come by several different routes. The most common route is for an authoritative institution to lead and sponsor development, publication and circulation of a definition. The 1990 American College of Rheumatology criteria for fibromyalgia is one example. This ME publication was developed as an independent effort, free of sponsorship. The panel reflects diverse expertise and experience with CFS, ME/CFS and ME; however, none of the participants represent professional organizations, funding agencies or policy-making institutions like the National Institutes of Health and Centers for Disease Control & Prevention in the United States or the Medical Research Council in the United Kingdom. Such participation might have added clout that could influence more rapid acceptance and utilization at an institutional level, however it might have also resulted in a different product.
While it lacks the implied institutional endorsement of the 1994 criteria for CFS led by authors at the CDC, this consensus report has a major advantage over the 2003 Canadian clinical criteria for ME/CFS with its publication in a journal with wide circulation in the medical community. (The Journal of Internal Medicine has an impact factor of 5.935, compared to the now-defunct Journal of Chronic Fatigue Syndrome that was never linked to PubMed.) The version published electronically on July 20, 2011 is a provisional paper, with the final version due out in print later this year. It will be interesting to follow formal responses that may be generated through Letters to the Editor and other commentary and analyses, particularly by those who have worked on earlier case definition efforts for CFS, ME and ME/CFS (CFS/ME). The next meeting of the U.S. Department of Health and Human Services CFS Advisory Committee will be a potential venue for discussion of impacts on funding and policy (including Social Security disability), with a recommendation that the U.S. federal agencies adopt ME/CFS as a replacement for CFS still under review by the Secretary of Health and discussion of case definition a regular feature of agency reports and discussion.
It is hoped that this consensus report will be broadly viewed as a positive development in the effort to identify criteria that enhance patient care and research. The response so far reflects a mostly enthusiastic reception, although there is some disappointment about the lack of objective measures to support symptom criteria. The paper provides a theoretical construct, with no data provided to demonstrate whether application of this criteria set results in a more homogeneous patient population than other criteria. There is also some concern about the possibility that the following statement in the papers Conclusions might have the unintended effect of jeopardizing or impeding access to or payments from government and private insurance coverage systems that do not presently recognize ME: Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome. In the United States, most systems (including Social Security) utilize the 1994 CFS definition by Fukuda et al. rather than the 2005 empiric definition by Reeves et al., but the ambiguity about which one constitutes the present CDC definition gives rise to concerns about the impact of this statement when applied in the medical-legal context.
The CFIDS Association considers the ME International Consensus Criteria to be an important publication with potentially far-reaching implications for research, policy and education. We are reviewing it closely and will be seeking input from our Scientific Advisory Board (three members of which are authors on the paper) and others about how this criteria definition might impact comparability with existing literature, funding, health care delivery, reimbursement, disability payments/applications, general awareness and understanding and a wide range of other practical issues.