• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Speak out about the Reeves definition delaying XMRV/XAND research

hvs

Senior Member
Messages
292
Who are these people who actually have CFS? Those with xmrv? Do the xmrv-cfs study on people who actually have xmrv? You people talk as if CFS is objectively testable/diagnosable disease. It is not. It is all empirical till they find some biomarker that closely correlate to CFS as defined currently, be it Canadian or CDC. The studies will tell us about either/both the viability of xmrv as the biomarker and the validity of definitions. Hang in there, suspend your paranoia for now and let the scientists do their work.

Poet, good forum etiquette entails taking a pulse of the forum for the tone with which participants refer to each other. This tone might be okay in some other fora, but it is out of line here.
 
A

anne

Guest
Poet, if you are unaware of the cohort that the CDC uses in their studies, poke around the internet. They have designed criteria that allow in people who are not actually physically ill at all but rather have psychological disorders and then make proclamations based on those disorders, and these are deeply harmful to those of us who have been ill.

If you have not paid attention to the sordid history of the CDC and CFS, this discussion will sound paranoid. It really boggles the mind what they've done, it feels like something out of a bad book. I don't know their reasons--it might simply be a long, drawn out case of confirmation bias. But they have dug in their heels--Dr. Reeves said as much in his quotes to the NYTimes. The CDC said long ago this wasn't a virus and have spent the last 25 years operating that way. It is, according to them, a "state of unwellness."

They announced today that they will use this same sample to do the tests on XMRV. By no one's measurements but their own do these people have CFS, and their methods have been criticized far and wide because of the harm they are doing. So if they do use this sample, they will not replicate the results, because 40% of those allowed in have Major Depression and not CFS at all.

If the retrovirus had been found earlier, perhaps I would not have infected my husband. Perhaps something could have been done before my pregnancy so I did not have to worry about my child. So, yes, I'm a bit annoyed at them for tilting at psychosomatic windmills while people get ill.

Sometimes, they are actually out to get you.
 
A

Aftermath

Guest
Please Show Some Respect

Who are these people who actually have CFS? Those with xmrv? Do the xmrv-cfs study on people who actually have xmrv? You people talk as if CFS is objectively testable/diagnosable disease. It is not. It is all empirical till they find some biomarker that closely correlate to CFS as defined currently, be it Canadian or CDC. The studies will tell us about either/both the viability of xmrv as the biomarker and the validity of definitions. Hang in there, suspend your paranoia for now and let the scientists do their work.

I appreciate your opinion, but referring to other forum members as paranoid is unwarranted and inappropriate.

Please show some respect for our other posters.
 

PoetInSF

Senior Member
Messages
167
Location
SF
If you have not paid attention to the sordid history of the CDC and CFS, this discussion will sound paranoid.
...
Sometimes, they are actually out to get you.
I've been involved with CFS only since 2004, but I've read most of the stories, I think. Personally, I see a lot more of unwarranted enthusiasm for every time a new "discovery" is announced than conspiracy by CDC. It would be fantastic if one of these new discoveries pans out, but it's going too far to stop CDC as if the new discovery is a proven fact when it hasn't even been replicated. That is contrary to the interest of CFS community, IMO.
 

Dolphin

Senior Member
Messages
17,567
but it's going too far to stop CDC as if the new discovery is a proven fact when it hasn't even been replicated. That is contrary to the interest of CFS community, IMO.
I'm not exactly sure what you are referring to?

If you are referring to the petition, "CDC CFS research should not involve the empirical definition (2005)" http://www.ipetitions.com/petition/empirical_defn_and_CFS_research : the petition on the definition was set up in April when there was no talk of XMRV.

The CDC have produced dozens of studies using this flawed definition already.

I think the petition has brought useful focus on the flawed defintion which wasn't talked about much in 2006, 2007 or 2008 (except briefly in 2007 when the Georgia study came up with a prevalence figure of 2.54%).