# Info on a petition against CDC's CFS definition (Reeves, 2005 aka the "empirical definition")



## tk (Apr 4, 2005)

From: Kasper EzeliusSign the petition against CDC's new definition of CFS!Tom Kindlon has set up a petition on the internet in order to stop CDC touse the new definition of CFS. At this time there are 636 signatures, and itwould be wonderful if at least 1000 signatures could be achieved. Tom Kindlon from Ireland, has written comments to several research articlesrelating to the new definition of CFS made by Reeves et al. 2005, andadopted by the Centers for Disease Control and Prevention (CDC) in the USA.Tom Kindlon is one of the few knowledgeable about the CFS-Reeves definition.Leonard Jason from USA has written articles about how the new CDC CFSdefinition is a flaw.The CFS-Reeves definition does not require malaise, mental fog andpost-exertional malaise exceeding 24 h, which make it hard to believe thatit has something to do with ME/CFS as the patients know it. It does not evenrequire the symtoms to be chronic, because it does not require the symtomsto have lasted for at least 6 months. It only looks 1 month back in time. The CFS-Reeves definition lacks specifcity (<16%). Already the Fukudadefinition was lacking specificity, and the expected way to go would to haveincreased specificity in order to speed up research. With the CFS-Reeves lowspecificity, the ME/CFS part will be dissipated in the stastistical data. Asno meaningful scienfific results will be produced with the "Reeves illnessmelange", one can expect that CFS will cease to be exist as an interestingentity to study. I think all ME/CFS-patients are hoping for research to go forward, not tostop up and dissipate because a TOTALLY FLAWED DEFINITION is accepted andused by CDC.Please, help to get more signatures by letting people know about thispetition.Sign at the bottom of this page. Note: When you are urged to donate money tothe site, you can simply skip that. Your signature will be registeredanyhow.http://www.ipetitions.com/petition/empiric...d_CFS_research/ /Kasper Ezelius, Örebro, SwedenME-information: http://me-cfs.seME-föreningen: http://me-foreningen.se/


----------



## tk (Apr 4, 2005)

From: Mary SchweitzerPosted to Co-CureWe're close! The petition to kill the new Reeves definition for CFS now has 968 signatures - that means just a few more will put us over the top into four digits for the CFSAC meeting on Wednesday. 32 more people. We can do that!Go sign it now if you haven't. Ask your friends and families to sign it.http://www.ipetitions.com/petition/empiric...nd_CFS_researchWhat the petition is about: In 2005, with very little fanfare, the CDC researchers on CFS led by Bill Reeves changed the definition they had been using since 1994 (the Fukuda definition). They have replaced it with a definition that greatly resembles the psychiatric one used in England. What would be the result of that?Studies that show that we our physical malfunctions are due to "deconditioning" (from staying in bed "playing the sick role") and "cognitive behavior therapy" as the main treatment to offer, that would be the result.Research on biomarkers and real treatment would be stifled by the CDC's insistence on trying them out with this group of patients, most of whom don't have anything resembling what we have. The CDC would do a quick study and say - there's no evidence that biomarker is useful.It would hold back research for even MORE decades - and worse, it could lead to cognitive behavior therapy, Prozac, and graded exercise as the only treatments for CFS that private insurance or Medicare would pay for. IT WOULD BE AN UNMITIGATED DISASTER.This "new" definition, which was named in the best Orwellian bureaucrateze: "empirical" (as if they had actually studied the symptoms that we have, which they did not), would be an unmitigated disaster for all patients with a diagnosis of CFS - and it wouldn't do much for patients with depression who would find themseles misdiagnosed as having CFS, either.The reason we didn't hear much about the definition is that Reeves isn't selling the definition to the medical profession - he is selling the questionnaires, and suggesting that they would match the old CFS-Fukuda definition.But research by Dr. L. Jason suggests otherwise: when he tried the questionnaires out on patients from the Chicago study, he found that they omitted the sickest patients entirely. Even worse, 30 percent (about 1/3) of the so-called "CFS" patients diagnosed using the Reeves questionaire did not have CFS-Fukuda, but did have major depression. As Tom Kindlon has also noted, Reeves would only require one month of "fatigue" for the diagnosis - again, a shift in definition (from six months) that would make it easier for patients with other problems to be diagnosed as having CFS. The FIRST priority of the new CFSAC MUST BE to stop the distribution of those questionnaires, get rid of all references to the Reeves definition on the CDC's CFS website, and return to both the Fukuda definition and the Fukuda goal of defining subsets using objective measures and biomarkers. (An apology would be nice but I'm not holding my breath.)*** IF YOU HAVE BRAINFOG THIS IS ALL YOU NEED TO KNOW ***"CDC CFS research should not involve the empirical definition (2005)"meansGET RID OF THE NEW REEVES DEFINITION AT CDC!Go sign the petition.http://www.ipetitions.com/petition/empiric...d_CFS_research/Mary Schweitzer


----------



## M&M (Jan 20, 2002)

I've been following this on Co-Cure. Glad to hear that we've almost got 1,000 signatures!


----------

