The October 2011 print edition of the Journal of Internal Medicine includes a new set of criteria for myalgic encephalomyelitis (ME), written by a panel of 26 physicians, researchers and teaching faculty from 13 countries. In the paper, Carruthers et al recommend use of this term and criteria as a replacement for CFS: “…it is more appropriate and correct to use the term “ME” because it indicates an underlying pathophysiology.” The criteria propose one compulsory feature — post-exertional neuroimmune exhaustion (PENE) — plus seven symptoms from three subdivided symptom clusters: neurological, immunological and energy production/transport impairments. The authors state that the criteria are intended for clinical and research use and they reported to be developing Physicians’ Guidelines and an International Consensus Symptom Scale for use in these settings.
This publication attracted considerable attention and prompted vigorous debate among patients, physicians and researchers. Our analysis of the criteria was the second most-visited post to Research1st during 2011. When the criteria were published, we made the following observation:
“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 these criteria 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.”
Since then, there has been much discussion in various venues about the change in both the name and criteria and the implications of both for research, policy and education. Now, through a pair of letters published in the Journal of Internal Medicine, readers get a flavor for the debate and a view of the concerns.
Editorial Comment: “A controversial consensus – comment on article by Broderick et al”
By Jos W.M. van der Meer and Andrew Lloyd
January 2012 (print edition, e-published ahead of print Nov. 11, 2011)
Letter to the Editor: “Response to ‘A controversial consensus’; by the International Consensus Panel”
By Gordon Broderick
February 2012 (print edition, e-published ahead of print on Dec. 30, 2011)
The response from Broderick clarifies that the original publication, in its current format, is intended only for application in clinical settings and that its use in research settings should await the publication of a related International Symptom Scale, currently being developed. Neither letter addresses the consequences of the new criteria for medical-legal issues such as reimbursement or disability assessment, particularly for those who might meet the 1994 Fukuda criteria for CFS but do not fully meet the new criteria for M.E. The response from Broderick on behalf of the author panel also does not address the uneven access to testing that is proposed to confirm the presence of subjective symptoms, especially if intended to be employed in the clinical setting to make a diagnosis. These issues are top-of-mind for the autism and Alzheimer”s communities, as the definitions for those conditions are being narrowed (autism, see New York Times, Jan. 19, 2012 and Medical News Today, Jan. 24, 2012) and expanded (Alzheimer”s, see Los Angeles Times, April 25, 2011).
The discussion of these criteria will certainly continue, especially when the related scale and physician guidelines are published.
Bruce M Carruthers, Marjorie I van de Sande, Kenny L De Meirleir, Nancy G Klimas, Gordon Broderick, Terry Mitchell, Don Staines, Peter Powles, Nigel Speight, Rosamund Vallings, Lucinda Bateman, Barbara Baumgarten-Austrheim, David S Bell, Nicoletta Carlo-Stella, John Chia, Austin Darragh, Daehyun Jo, Don Lewis, Alan R Light, Sonya Marshall-Gradisbik, Ismael Mena, Judy A Mikovits, Kunihisa Miwa, Modra Murovska, Martin L Pall, Staci Stevens. (2011), Myalgic Encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine. July 20, 2011 doi: 10.1111/j.1365-2796.2011.02428.x ()
Note: The accepted article approved for publication was first published in draft form on July 20, 2011; the final version was published online ahead of print on Aug. 22, 2011 and it was published in print Oct. 2011. The final is available open access.
van der Meer, J. W. M. and Lloyd, A. R. (2012), A controversial consensus – comment on article by Broderick et al. Journal of Internal Medicine, 271: 29–31. doi: 10.1111/j.1365-2796.2011.02468.x
Broderick, G. (2012), Response to ‘A controversial consensus’; by the International Consensus Panel. Journal of Internal Medicine, 271: 213–217. doi: 10.1111/j.1365-2796.2011.02499.x