(See below for extra commentary and information on the campaign. Apologies about the spacing)
-----
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)
----
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 CFSplans. It wasenvisaged it would remain as long as the CDC continued to use the definition.
----
August 2010:
Goal:
Ideally,a minimum of 2500 signatures on the petition before the fall 2010 Chronic Fatigue Syndrome Advisory Committee (CFSAC) committee meeting. The date for the meeting has not yet been posted. It is normally in October, but may be in September this year.
-- Technical note: I am not sure why some people have grey boxes in the comments section. [(Update June 18, 2009) 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 [email protected], 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.
Updates
November 15, 2010
I honestly never thought this would reach 2500 signatures when I first started it. Seeing this number is purely the result of your persistence and I am just the person who hit the button to begin.
Reached 2,500 supporters
November 15, 2010
February 1, 2010
I have been spending my time lately reaching out to researchers who understand why this definition remains such a hurdle for accurate study. It is truly humbling to see so many of you backing this effort because I honestly thought this was just going to be a quiet concern of mine.
Reached 1,000 supporters
May 24, 2009
April 18, 2009
I honestly never thought a hundred people would align with this concern. It is completely overwhelming to see this kind of response for something I just put together on a whim. The credit belongs to all of you for taking this issue seriously.
Reached 100 supporters
April 17, 2009
48 Comments
Reeves 2005 must go! It is far too generalized to be useful, and serves only to trivialize a serious disease!
The Canadian Consensus Criteria are the truest, most valuable guideline for developing comprehensive individual diagnosis and treatment for patients. If the US sincerely cared they would use the CCC, too.
PEM & other symptoms should at least be part of criteria, otherwise there will be a risk of including people that don't have M.E.
There is no Post-exertional Malaise mandatory symptom, the "marker" of ME/CFS. The 2/10/15 IOM Report called for Empirical/Reeves to be shelved. It is a Chronic Fatigue definition. Using Reeves now is only showing how they want to say they are studying CFS but are really studying Fatigue and how this is really in relation to studying Fatigue from cancer medications. This is really the Cancer Moon Shot and since NIH is studying Fatigue this is doing nothing for CFS because our "marker" symptom is not CFS it is PEM!
As often happens in the medical community, this is a "lumpers" vs. "splitters" issue. The lumpers have it wrong, and that's been demonstrated time and time again by various research. We need to start doing some splitting.
FFS, listen to patients, listen to researchers (not psychiatry), use CCC or IOM.
Hello, FTP service is a community for DJ’s & fans that helps you gain full access to exclusive electronic music various artists, singles trax. http://0daymusic.org Best Regards, DJGianko
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(See below for extra commentary and information on the campaign. Apologies about the spacing)
-----
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)
----
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 CFSplans. It wasenvisaged it would remain as long as the CDC continued to use the definition.
----
August 2010:
Goal:
Ideally,a minimum of 2500 signatures on the petition before the fall 2010 Chronic Fatigue Syndrome Advisory Committee (CFSAC) committee meeting. The date for the meeting has not yet been posted. It is normally in October, but may be in September this year.
-- Technical note: I am not sure why some people have grey boxes in the comments section. [(Update June 18, 2009) 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 [email protected], 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.
Updates
November 15, 2010
I honestly never thought this would reach 2500 signatures when I first started it. Seeing this number is purely the result of your persistence and I am just the person who hit the button to begin.
Reached 2,500 supporters
November 15, 2010
February 1, 2010
I have been spending my time lately reaching out to researchers who understand why this definition remains such a hurdle for accurate study. It is truly humbling to see so many of you backing this effort because I honestly thought this was just going to be a quiet concern of mine.
Reached 1,000 supporters
May 24, 2009
April 18, 2009
I honestly never thought a hundred people would align with this concern. It is completely overwhelming to see this kind of response for something I just put together on a whim. The credit belongs to all of you for taking this issue seriously.
Reached 100 supporters
April 17, 2009
48 Comments
onset Jan 1984. 40 years. get it together, CDC. if my physician had followed your guidance, i'd have died long since.
Reeves 2005 must go! It is far too generalized to be useful, and serves only to trivialize a serious disease!
The Canadian Consensus Criteria are the truest, most valuable guideline for developing comprehensive individual diagnosis and treatment for patients. If the US sincerely cared they would use the CCC, too.
PEM & other symptoms should at least be part of criteria, otherwise there will be a risk of including people that don't have M.E.
There is no Post-exertional Malaise mandatory symptom, the "marker" of ME/CFS. The 2/10/15 IOM Report called for Empirical/Reeves to be shelved. It is a Chronic Fatigue definition. Using Reeves now is only showing how they want to say they are studying CFS but are really studying Fatigue and how this is really in relation to studying Fatigue from cancer medications. This is really the Cancer Moon Shot and since NIH is studying Fatigue this is doing nothing for CFS because our "marker" symptom is not CFS it is PEM!
As often happens in the medical community, this is a "lumpers" vs. "splitters" issue. The lumpers have it wrong, and that's been demonstrated time and time again by various research. We need to start doing some splitting.
FFS, listen to patients, listen to researchers (not psychiatry), use CCC or IOM.
Hello, FTP service is a community for DJ’s & fans that helps you gain full access to exclusive electronic music various artists, singles trax. http://0daymusic.org Best Regards, DJGianko
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onset Jan 1984. 40 years. get it together, CDC. if my physician had followed your guidance, i'd have died long since.