Sunday, May 24, 2009

Sign the Petition!

We'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/empirical_defn_and_CFS_research/signatures-20.html

What 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)"

means

GET RID OF THE NEW REEVES DEFINITION AT CDC!

Go sign the petition.


http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/signatures-20.html

Mary Schweitzer


----- Forwarded Message -----
From: "Tom Kindlon" <tomkindlon@oceanfree.net>
To: LocalME@yahoogroups.com
Sent: Sunday, May 24, 2009 9:08:51 AM GMT -05:00 US/Canada Eastern
Subject: [LocalME] RE: Tom Kindlon's written testimony to the CFSAC meeting, May 27-28, 2009

The l drops off the link to the petition in that E-mail.

A shorter link is:
http://CFSdefinitionpetition.notlong.com

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