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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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I should send my blood into this company. Just to see what they would come up with.
What do you think?
It really would be interesting but do I really want to thow away 400.00 jacks?
Do we really know that CD has found no positives?
"I am part of a "cohort" that was accepted as a study
group by CD--moms with CFS and their children on the autism spectrum.
When our results came back last week, *all* of the results were
negative."
Its really beginning to look that way. Not just the (currently) 8 negative in the above poll. But there is a thread on CFSFMExperimental. Lots of people testing negative.
In particular there was this message:
Then there is the issue of biomarkers and selection of test cohorts, we know WPI did NOT use a sample of average PWC, like those of us on this forum, they had some of the worst cases in their sample.
There is every possibility that it is WPI who is producing false findings.
But it sure doesn't seem that "every possibility" exists that WPI produced false findings.
I am not going to pretend to understand the research at anywhere near the complexity of those with backgrounds on this forum. But I don't see how the above statement could be warranted in light of the rigorous analysis given this study by SCIENCE.
Yes, time will tell. Replication efforts need to come in from all sides. But it sure doesn't seem that "every possibility" exists that WPI produced false findings. Yes- it's possible- but this statement makes it sound like replication is a shot in the dark. It doesn't seem that way to me. Given my understanding of this study, again a laymen's understanding- not trying to compete with anyone for best scientist on the CFS forum- it seems that WPI dotted their I's and crossed their T's. My understanding is that they tested and retested each sample 5 different ways.
If I were to bet on this study, all CFS politics and emotions aside, it seems clear to me that SOMETHING has been unearthed in the WPI study. Not that every possibility exists that its all crap.
How significant that something is, or how it will ultimately affect CFS, is another subject.
WPI, Cleveland Clinic, and National Cancer Institute.
Hi Kurt
Not sure what you mean by "average PWC"; do you mean endemic rather than epidemic cases? From what I've heard here and on other sites there is a significant number of PWC who appear to be part of 'mini-clusters', though I don't know if anyone has done formal epidemiology studies on any of these.
As for the 'worst case' concern, I've seen that discussed on this forum before (you're right - that may have been by you, come to think of it!)... I found from my own (past) discussions with Ablashi and others re: HHV-6 that virologists do like to sample the most ill patients as it increases the chance of detection, especially of viruses that are known to 'hide' or become latent in many cases (like HHV-6 and XMRV, in their respective ways). So I think that is actually one of the strengths of the WPI study.
[Btw, I think there may be a few of those "worst" cases on this forum, you know...myself included! Coincidentally (??), I was on vacation near Incline Village at the same time as the outbreak there, and actually got sick with a mild URI, but recovered normally. (I was a kid at the time.) Who knows...I once consulted with Komaroff, who didn't think a connection was likely... ]
...people here are acting like XMRV is an established fact so any lab that does not find it in 'my CFS' is obviously flawed, but that is just not the case.