Petition: CFS research should not involve the empirical CDC definition (2005)

Petition Sponsor: Tom Kindlon, a patient with Chronic Fatigue Syndrome (CFS) for over 20 years.:

Petition Text:

We call on the Centers for Disease Control and Prevention (CDC) to stop using the "empirical" definition[1] (also known as the Reeves 2005 definition) to define Chronic Fatigue Syndrome (CFS) patients in CFS research.

The CDC claim it is simply a way of operationalizing the Fukuda (1994) definition[2]. However the prevalence rates suggest otherwise: the "empirical" definition gives a prevalence rate of 2.54% of the adult population[3] compared to 0.235% (95% confidence interval, 0.142%-0.327%) and 0.422% (95% confidence interval, 0.29%-0.56%) when the Fukuda definition was used in previous population studies in the US[4,5].

The definition lacks specificity. For example, one research study[6] found that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the empirical/Reeves definition.

References:

[1] Reeves WC, Wagner D, Nisenbaum R, Jones JF, Gurbaxani B, Solomon L, Papanicolaou DA, Unger ER, Vernon SD, Heim C. Chronic fatigue syndrome--a clinically empirical approach to its definition and study. BMC Med. 2005 Dec 15;3:19. Link: http://www.biomedcentral.com/1741-7015/3/19

[2] Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome; a comprehensive approach to its definition and study. Ann Int Med 1994, 121:953-959.

[3] Reeves WC, Jones JF, Maloney E, Heim C, Hoaglin DC, Boneva RS, Morrissey M, Devlin R. Prevalence of chronic fatigue syndrome in metropolitan, urban, and rural Georgia. Popul Health Metr. 2007 Jun 8;5:5.

[4] Reyes M, Nisenbaum R, Hoaglin DC, Unger ER, Emmons C, Randall B, Stewart JA, Abbey S, Jones JF, Gantz N, Minden S, Reeves WC: Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas. Arch Int Med 2003, 163:1530-1536.

[5] Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR, McCready W, Huang CF, Plioplys S. A community-based study of chronic fatigue syndrome. Arch Intern Med. 1999 Oct 11;159(18):2129-37.

[6] Jason, LA, Najar N, Porter N, Reh C. Evaluating the Centers for Disease Control's empirical chronic fatigue syndrome case definition. Journal of Disability Policy Studies 2008, doi:10.1177/1044207308325995. Further reading: Problems with the New CDC CFS Prevalence Estimates Leonard Jason, Ph.D., DePaul University http://tinyurl.com/2qdgu4 i.e. http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105/Default.aspx

***Check blog for updates on the campaign (through August 2010) ***

Brief comment from Tom Kindlon (aka "rationale"):

I have Chronic Fatigue Syndrome (CFS) for over 20 years. I want a lot of research progress in my lifetime and believe the empirical definition* (Reeves et al., 2005) decreases the chances that this will occur: abnormalities that would show up using a more strictly defined definition won't show up using the empirical/Reeves definition; and abnormalities that might show up in the broad group covered by the empirical/Reeves definition are not necessarily representative of CFS patients.

Similarly treatments that might work on a more strictly defined group of patients might not show up using the very broad empirical/Reeves definition and treatments that might appear to work overall on the group defined using the empirical/Reeves definition might not be suitable for people who satisfy a stricter definition.

This messes up the CFS literature even further.

* It has also been called the Reeves definition (2005)

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History:

This petition was set up on April 15, 2009. The short-term goal was to mention it in submissions in April/May 2009 on the CDC's CFS plans. It was envisaged it would remain as long as the CDC continued to use the definition.