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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.
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10 August 2010.
By mid-August, we will say 17 August as SickofCFS noted, if those documents are not out there must be a war of epic proportions.
Too much time has elapsed, for whatever reasons they give.
I really don't care what those reasons are - those papers were ready for publication and in galleys ready to go. So, where the hell are those studies?
Why would I have inside information? And if I did have it, it would stay that way. I am just connecting the dots in concluding that the Lo/Alter paper will never be published in a manner that replicates/validates the WPI Oct. 2009 Science article.
The folks with inside information are people like Dr. Monroe at CDC. See what he has to say about the XMRV/CFS connection on Mindy Kitei's blog:
These are the words of a bureaucrat that knows the Lo/Alter paper has been spiked (OK, in my humble opinion). He appears to be enjoying the dismay of the CFS community and thinks he is being cute by toying with Ms. Kitei and providing non-answers to her questions.
He says CDC has found XMRV in prostate cancer patients and is about to publish this research in order to establish that the recent zero/zero CDC/CFS article is valid.
If the CDC is about to publish yet another CDC/XMRV paper, don't you think the top dogs at the NIH would have let them know the assays they are using are bogus? This is all being managed at top government levels, don't you think? And the top government levels surely know what is going on with the Lo/Alter paper, at least by now. They are not going to keep shoveling coal in the boiler room if they know the front cars of the train have jumped the track. Use some logic. And logic will tell you that the Lo/Alter paper has been de-fanged.
And when it comes to XMRV studies, Klimas is almost finished with her study of Gulf War patients and XMRV, so NIH may be running damage control and working the timing on that.
If this Klimas work comes up with even a hint of a Gulf War Syndrome/XMRV connection, it will light a match under the bonfire. Until now, CFS patients have been disorganized and very easy to marginalize. It will be much harder to convince the general public that war vets are a bunch of sissy hysterical neurotics.
Personally, I don't care about the criticisms from sick and unhappy patients here, and I don't relish robbing anyone of hope. I am merely keeping my ear to the ground, and my take is that things are about to get ugly in terms of the XMRV/CFS/ME connection. My main point is, instead of preparing for a big celebration party, there should be a coordinated plan B just in case I am correct.
Negative attitudes towards the validity of the causation of XMRV in ME aren't very nice either considering many people's lives depend on it. Levi is one person on a forum belittling hope of many.
I am not insinuating Levi is XMRV- I am asking whether his posts would be of the same opinion if he/she had tested positive for the virus.