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, 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.
Pharma is Poised to Act - Pharmaceutical companies spend an enormous amount of money on research. If XMRV turns out they are eager to jump in. The huge success of drugs for Fibromyalgia apparently really opened their eyes and XMRV's potential to leap disease boundaries must have them salivating. Dr. Bateman noted that the pharmaceutical companies also play key roles as educators.
If culturing is necessary to find the virus via PCR he urged WPI researchers to publish that information.
Wasn't this cleared up here: Of the technologies used to identify and isolate XMRV in patients with CFS, PCR from DNA or cDNA from unstimulated peripheral blood mononuclear cells is the least sensitive method. We contend that the three recently published negative PCR studies (1315) do not qualify as being studies that fail to replicate our study, as neither the same PCR methodologies were used nor did these studies draw on the additional cell culture and immunological methods that we employed to observe XMRV nucleic acids and proteins. Although we offer to send samples in which we have detected XMRV, the groups that published these results neither requested nor analyzed any samples we had found positive for XMRV in our laboratories.
Referenced here: http://www.sciencemag.org/cgi/conte...rv&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT
I was hoping that he would talk about the hypermutation/editing problem. You would have thought they would have touched on the Alter/CDC problem as well. I thought the questions from the CFS community were interesting and insightful - too bad we didn't have more of those. They indicated he was a bit out of touch with his audience - he could have pushed the envelope alot further in his presentation.
I think we can say there's some disagreement here. I don't think Dr. Racaniello would disagree that there are some differences. In the question period he noted that other studies will use some of the WPI's techniques and attempt to improve on them or alter them for whatever reason. Some of the studies did use nested PCR and looked for the same sequences as did the original study. Culturing was not used for the PCR in the original Science study but it was used extensively elsewhere.
Note that they don't refer to culturing with regard to PCR in that statement but they do believe its very important to find DNA and nucleic acids. It may be that we've gotten things mixed up.
The CDC study used the same antibody tests and added some sequences. So it seems like its kind of mix and match type thing; there are similarities and differences but no one has followed the WPI's method exactly. The most critical part may be that none have devised their tests using the WPI positive samples - they've all, as I remember, used laboratory derived samples - and that may make the difference. Dr. Mikovits did report that there are two studies that are replicating the Science study under way so we will get this question finally answered!
I would agree with the "Where's the Beef' analogy. It was an underwhelming experience on a very hot topic. Virology 101 was not what we were looking for after researching this for 8 months. Dr .Racaniello did not get that about this audience. Those answers would have been good 6 months ago but not now.
I think it is important to remember that not everyone in the audience is as well-informed or is paying as close attention as those of us on PR. Any presentation must be tailored to the audience, and the audience for the webinars really runs the spectrum of knowledge base.
I think it is important to remember that not everyone in the audience is as well-informed or is paying as close attention as those of us on PR. Any presentation must be tailored to the audience, and the audience for the webinars really runs the spectrum of knowledge base.
IMO the big pharma success in Fibromyalgia has been for big pharma and not the patients. If we're going to climb out of the big hole most of us are in, we need meds that work much better, with lower side effect profiles than the 3 available this far for Fibro.
It's a double-edged sword. We need will big pharma for XMRV, but like any business they want bang for the buck and manage to play the clinical study game a little too well for my taste.
I've got experience with all the Fibro meds and have larger concerns about how we're going to pay for all of this but I'll leave that for another day, or two.
You live in a capitalistic society. Can you name any commercial company that doesn't expect a return on their investment? This forum would not exist if patients did not have computers and I can guarantee you a profit was made for every computer purchased. Too many people have fallen for the big bad Pharma schtick promoted by medicalization theorists - the same theorists who claim fibromyalgia and CFS are the medicalization of misery. Be careful whose agenda you adopt.
As well, different meds have different efficacy for different individuals. It is unfortunate if they did not work for you, but you are not everyone nor is everyone you.
Another issue with meds that is rarely noted is that at least for patients who have HHV-6A, clinicians and researchers have shown that this virus, and possibly others, leave patients very intolerant of most drugs. The difficulty is with the virus in such cases.
Would it be possible for the next XMRV update to be aimed at the "expert patient" instead?
I do appreciate that it is hard to pitch to an audience of differing cognitive abilities and differing backgrounds/knowledge of the virus.
An "expert patient" webinar would then meet the needs of people who are well informed. Both update webinars I have looked at were pitched too low for many of the people on the website. The well informed patients are missing an opportunity to get their updates in a succinct form and to put together some of the advanced "musings" out there.
We can't please all the people of course and this is just an idea for future plans.
Congratulations on the webinars, they work very well (few blips) and make patients feel more involved.
The problem with that idea is that we patients know as much as or more than most of the experts right now. Most of us probably know as much about XMRV as John Coffin himself. Any bits of information we don't know is as yet unpublished and wouldn't be discussed in any webinar anyways.
Probably the best thing to do is to have patients give webinars for the experts....not the other way round.