CDC CFS research should not involve the empirical definition (2005)
The Petition
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
Brief comment from Tom Kindlon: 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 (2005) (also known as the Reeves definition (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.
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Technical note: I am not sure why some people have grey boxes in the comments section.
[(Update June 18) One person (thanks Greg) contacted support and was told that quotation marks (he is not sure if that is both single and double i.e. ' and ") can cause problems so it may be best to leave these out]. The problem does not seem to be related to whether people donate to ipetitions.com or not. If your comment isn't visible, feel free to contact me at tomkindlon@gmail.com, giving the current number of your signature, and I'll be happy to delete your signature and for you to try again to sign and write a comment.
See duplicates
If anyone sees a duplicate or what they suspect is a duplicate (two people can have the same name), let me (tomkindlon@gmail.com) know so I can delete one of them. A few people have signed it at the end after forgetting they signed before. When I spot these, I delete them.
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Update #1:
I rang in to the meeting the CDC held to discuss its draft research plan on Monday, April 27. I criticised the empirical definition. I also mentioned I set up this petition on April 15 and already 250 people had signed it (that was the exact number at that stage). A lot of other people also criticised the definition during the meeting
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Update #2 (30th April 2009):
I have just sent in a submission on the draft CDC CFS research plan. I have copied and pasted the visible signature pages including the comments. There were 347 at this time.
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Update #3 (19th May 2009):
I have just sent in written testimony to the CFSAC meeting (I heard for this meeting they did not want oral testimony from people outside the US). I included the full text of the petition including the references. I will try to post a link to what I said after the meeting.
I mentioned that at the time of writing there were 651 signatures, gave a link to the petition and said many people had given comments.
I was tempted to copy and paste the visible part of the petition again but my piece was already very long as I included a lot of comments (i.e. criticisms) I have previously posted on the "empirical" definition.
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Update #4 (25th May, 2009):
Today, I E-mailed all but one of the voting members of the CFSAC committee (I couldn't find an E-mail address for Morris Papernik) to tell them that more than 1000 people had now signed the petition (I said 1097, which was the figure at the time).
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Update #5 (June 30, 2009)
Today I sent in a submission on the CDC's draft 5-year plan for CFS. I included the petition text, etc. I pasted in the 1440 signatures and comments that are visible.
If the CDC continues to use the definition, there may well be other opportunities to highlight the petition, the number of signatures and the comments.
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Update #6 (October 1, 2009):
Mary Schweitzer and Kasper Ezelius continue to write useful messages about the petition on the Co-Cure list (http://www.co-cure.org/) which I have been circulating to some other lists and forums in the hope it would drum up some signatures and encourage other people to circulate messages on the petition.
I have also been participating in a new forum which I encourage people to check out:
http://aboutmecfs.org/Adv/MAD.aspx
M.A.D (Making a Difference) About ME/CFS Group
The M.A.D. Group was formed in response to a potentially pivotal event that will occur shortly; the Oct 29th/30th CFSAC meeting at which the CDC will present its Five Year plan for ME/CFS.
A Pivotal Event - This group is focused on producing a strong voice for change in the CDC's CFS research program at the Oct. 29/30th CFSAC meeting. With patients, support groups and researchers united in support of dramatic change at the CDC this meeting has the potential to become an epochal event in ME/CFS history. Dr. Jason has called it the biggest event in 25 years. We intend to do our best to make it so. We'll be discussing and outlining the different ways we can make a difference at this pivotal moment. Physical participation at the meeting itself is not required.
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Update #7 (14th October 2009):
I have just sent in written testimony to the CFSAC meeting at the end of October.
People were limited to 5 pages for the submission so I had to restrict what I wrote but over two pages of it was on the petition. I mentioned that I had made other points in my submission to the May meeting and gave a link to that.
I mentioned that there were 1641 signatures on the petition site. I also mentioned that many people had added comments which could be read on the petition site.
I have seen quite a few submissions from other people and a good percentage of people have brought up that they are unhappy with the definition. I think momentum is building on the issue.
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Update #8 (October 2009) :
Marly "Marla" C. Silverman, Founder of P.A.N.D.O.R.A. (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc http://www.pandoranet.info) has been in touch to say that she will be bringing a print-out of the "entire petition" (i.e. the visible signatures and comments) to the CFSAC meeting at the end of the month.
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This can be seen in Marly Silverman's testimony:
http://www.youtube.com/watchv=OLnBPGA3Lb4
"I am delivering to you a petition by Tom Kindlon, a CFS patient advocate. As of today, there are 1893 signatures in this petition. The comments are an eye-opening account of the diversity found within the patient community. It could be a tool for potential CFS research"
Other testimony also criticise the empiric criteria. For example, Dr. Joan Goabstein http://www.youtube.com/watchv=WUDyby8A7tI who used the memorable phrase that those who satisfy the empiric criteria but not other criteria could be said to have "Reeves disease".
Staci Stevens gave a two-paragraph statement from Dr Eleanor Stein (psychiatrist) criticising it:
http://listserv.nodak.edu/cgi-bin/wa.exeA2=ind0911a&L=co-cure&T=0&F=&S=&P=4214
(I did not hear or read a lot of the testimonies so feel free to let me know about other testimony that criticised the criteria)
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Update #9 (30 October 2009):
The CFSAC recommends the CDC stop using the Reeves criteria (2005) (exact text to follow)
2000 signatures reached.
