Rockon said...
The last figure I saw was that Epigenetics, the maker of the test, had revenues of $750,000 for the test to that point in time . They have increased the percentages of the sensitivity of the test....see this linked article. The newer numbers they have are for the better.
http://www.news-medical.net/news/20130723/Fibromyalgia-diagnosis-an-interview-with-Dr-Bruce-Gillis-CEO-of-EpicGenetics.aspx
I am glad that it was eventually peer reviewed, and glad that they made the study open access.
What I haven't seen yet is verification of their work thru duplication of their findings that cytokines x, y, z were found by another team of researchers. (I don't remember exactly what they found. x, y & z are pseudonyms) They only tested RA and lupus patients with this test, to be sure that those cytokines aren't present in those 2 other patient groups. However, sometimes I think that it may be better for undiagnosed patients if we accept that flaw ---- if it is the only flaw! ---- than if there is no test at all. The flaw of a lack of duplucation still remains, tho, as far as I can tell.....but like I've said before, I stopped looking to see if it was ever duplicated.
I admit that I haven't devoted time (since initially doing so) to look for verification, thru duplucation. But I would expect such a thing to trickle down to the forums if it had been done.
I like the medical coverage from that site that I linked to, and I like the article, but I did not like Gillis making it sound like his team was first to discover that fibro has immune system responses going on. Just take a look at my thread here at healingwell on inflammatory markers found in fibro studies, and you'll see that I'm right....many researchers have been looking at an activated immune system increasing inflammatory cytokines. One study even uses the abbreviation IRS for Immune Response System. People have been looking for such things at least since Michael Maes May 1999, Published in Psychneuroendocrinology. ( (This is one of my favorite researchers.)Title: The immune-inflammatory pathophysiology of fibromyalgia: increased serum soluble gp130, the common signal transducer protein of various neurotrophic cytokines.
What I have read of Dr Daniel Wallace's research is that he did his cytokine testing (2001?)and he found that patients with fibro for over 2 years had more inflammatory cytokines than the newer patients. At the time he wanted more research done ASAP so that the process could be halted sooner rather than later.
I read an article with opinions and quotes from 3 fibro researchers whose work I was familiar enuf with not to need to look around to see if they were indeed researchers. All three criticized the test at the time because the particular findings (x, y, & z) were new news to them and no one had duplicated them yet. Plus there was criticism I saw on a Fox News site that more diseases besides RA and Lupus should have been used as controls, to be sure fibro is the only possible result if those things turn up positive. Those 3 drs who were critical of the epigenetics research findings/test in the early article were Daniel Clauw, Roland Staud and Daniel Wallace. I think Clauw and Staud are kind of go-to guys for journalists wanting views and/or quotes. As I recall they both commented on the venule shunts press release, ...unless I'm thinking of an article about all of the peripheral neuropathies studies. Oh well, it doesn't matter what the other quotes were for; their credentials are legit in my mind.
At least Epigenetics hired Wallace at some point. (That will shut someone up, tho, if you pay them, says the skeptic in me. But on the other hand Wallace does believe in fibro, or he wouldn't have ever been researching for us.)
When Epigenetics made their first announcement, I did not remember *ever* seeing the cytokines they are testing for in any fibro study. OK, I know my memory sucks and I'm not educated in the field. But I did look thru my notes on my ipad of the studies in this category, and did not find their x, y & z in any of them. So next I looked for a study with any of them, searching one at a time, and came up with nothing.
Maybe they wanted a unique test, so they stayed away from testing for the usual suspects and got lucky as well. It might be that it would be smart to do that.
Thank you for your response. That is all very interesting. I have read more about
the test and am not sure what to think. Perhaps there is a immunological basis for fibromyalgia; in fact, that would make sense. I just hope that a reliable and strongly valid test will be developed to test for fibromyalgia, preferably in the near future!