Article: CFIDS Association Webinar: Dr. Racaniello and Dr. Bateman on XMRV

You can view the page at http://www.forums.aboutmecfs.org/content.php?189-CFIDS-Association-Webinar-Dr-Racaniello-and-Dr-Bateman-on-XMRV

 

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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.

 

Its too bad the meds are such blunt objects; hopefully over time they will get better. What they have done is illustrate that FM is a good market for them which will hopefully spur them on to create better drugs....if they can better drugs with fewer side effects - they'll have a nice return on their investment.

 

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!

 

Cort, a good summary of a bad webinar. Was very disappointed with Racaniello. I thought the comparison to HTLV was unnecessarily pessimistic. There are patients currently on antiretrovirals who seem to be doing well so something is wrong with his model. I just found the whole thing very patronizing as if I were constantly being talked down to. A wasted golden opportunity IMHO. Shame that the media were listening in to this one, as it was by far the worst talk on xmrv out of all of them so far. The take home message (from Raceniello at least) seemed to be: "Science is great, everything is A.o.k., come back in 15 years and we may have some treatment for you. Have a lollipop on the way out. Oh btw check out my blog!"

I have some news for Racaniello. Everything is not a.o.k.. If science is so great where has it been for the last 25 years? Patients are in a dire situation. We can not afford to wait 15 years for treatment.

And the Band plays on ...

 

I wasn't as disappointed as you but I do agree that the webinar underperformed. One reason is that we all pretty much know the basics now and, except for Dr. Bateman's interesting stuff on the cohorts and on the positive aspects of XMRV - it was pretty bland stuff.

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 really enjoyed Dr. Bateman's portion. I guess she thought she would be able to say something about the study and I did hear that they are close to wrapping it up but it was a shame she couldn't. Too bad she got muted there at the end - she would have had some good stuff to say.

 

I don't blame Dr. Racaniello for most of this. Don't forget Kim McCleary prefaced his talk with the questions she wanted him to answer. Frankly I think he was asked to speak to those specific points and had little time, if not little leeway, to speak about much else - not exactly an opportunity to push the envelope from where I sat (well lay).

One could argue that the point was to provide basic information to a group that isn't as technically astute as many here are and it served that purpose to a degree, for better or worse. I shall not make that argument, however. I would gladly sign up for a retrovirology 101 webinar but that wasn't the billing.

The whole webinar felt like an effort to keep us all on an even keel and 'patient', and frankly came off as somewhat condescending to me. It's probably all in how you take it so maybe that's my problem. I do think I can speak for most of us on chat at the time with the infamous question: "Where's the beef?"

I understand the need to keep a lid on pre-pub data, and I expect the original schedule, made months ago, was intended to give Dr. Bateman a chance to talk about her results but she's not there yet and that's OK. That said I think this was an opportunity missed to get into some technical details such as the editing problem or problems with the CDC study such as their lack of ability to find XMRV in a patient sample. The press could have walked with a really good nugget there.

But in the end, "Where's the beef?" sums it up for me.

 

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.

 

Exactly Cort.... Remember how long it took them to find the second version of HIV? for a long time i believe the test for HIV-1 didn't pick up the people with HIV-2 ... its gonna take time to sort out what is what.

 

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.

 

And that may very well good be for the less informed majority out there. It's the CAA's show but please don't expect not to hear disappointment from the likes of us. We, according to your words, were not the target audience.

 

jspolita,

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 webinars do work very well and of course they are talking to a wide audience. I thought the questions at the end were very telling - very astute questions from the CFS patients that Dr. Vernon picked. I do get that its hard to get researchers to be anything but very conservative in public.

 

I agree that it's very difficult to hit the right level of expertise, and also that it's disappointing when a presentation is too basic for some audience members. I think someone tuning in to XMRV for the very first time (obviously, not someone from PR!) would have been very disappointed as well, if not completely lost. The next webinar is on Blood Safety and XMRV, given by Dr. Louis Katz. Send questions in ahead of time at whatever level of detail/science you want. I know they try to pick a range of questions.

 

Jennifer is right on target. Dr. Racaniello was recruited for his ability to make the complicated make sense to patients - many of whom know nothing about science (read some comments on various websites if you don't believe that). Many patients have cognitive difficulties as well.

Another poster assumed that the media, whoever that is, would not need that information because that poster did not. Not everyone follows these issues as closely as those most affected by them and that is true regardless of the subject.

Complaining when journalists don't have all the facts, but then objecting to a seminar explaining the virology as well as the difference in patient subsets doesn't make sense.

 

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.

 

I'm not adopting any agenda or shtick, please don't put words in my mouth. It appears in your mind I'm ranting about a misguided cause which obviously touched a nerve.

Let's stick to the capitalism then, shall we.

I clearly said that big-pharma is a double edged sword. We need them but clinical studies are grossly slanted toward drugs with the most profit potential and drug reps successfully push them. Yes it's capitalism and it not driven by shareholders who's primary concerns are to improve patients health.

As Cort correctly pointed out drugs are blunt instruments and I would argue the the three approved fibro meds are extraordinarily so. I'm not going strictly by my own experience and I'll cite specifics if you like, although that really wasn't my major point.

Current anti-virals don't work well and we had a really good thread about the fact that there is some scientific evidence until we attack a combination of viruses in a given person we won't make significant headway. The anti-viral cocktails need to address things like HHV-6 and XMRV or other MuLVs.

Back to the capitalism.

In your computer example there is a clear benefit to the person who buys it and it's going to work as advertised comparably for each person (within reason) - not even close for meds. With a computer we know what we're getting, the benefits are obvious. We also can return it, resell it or get a warranty repair if we have problems. When we spend more money we'll get tangible additional benefits and there are many comparable competing choices keeping pricing in check. Profit margins are very thin with computers and pretty much all consumer goods. Are you going to make that claim the kinds of medications we're talking about here? And ignoring controversial issues of something like radiation, the product isn't going to harm us or anything else it touches, again not so with meds.

I will grant meds have much greater R&D but they still manage to keep profits very high.

So with a computer:
- It provides an obvious and universal benefit to the consumer.
- Has very direct competition which keep profit margins low.
- Doesn't cause it's user's harm.
- And in the end it's not absolutely necessary, although it's a real lifeline for many of us in practicality. One might argue it's better medicine than anything else available right now, but that's another conversation.

With medications:
- They provide a benefit at a level above placebo in most patients studied. In our illness this is particularity hit or miss.
- Until patents expire the profits are enormous. At that point they frequently tack on a marginal tweak and start selling the "new" med, which maintains huge profit margins.
- Especially for an illnesses (FMS) with few approved medications there are no comparable competitors. ARVs (except AZT?) and other new meds are/will be extremely expensive.
- They have serious side effects that can preclude their use, even for a patient who greatly needs the potential benefit.
- They have a captive audience. We need to get better. We'll take them regardless of the cost (if we can afford them or get assistance) and take chances with our health, it's already happening. **And I don't blame people for trying.**

So is it capitalism at work? You bet.

Are there benefits for people fighting for their quality of life, if not life itself? Sure. Will I be pushing my doc for any marginal gain. Yep. I would like to live to see my kids graduate from high school. My odds are long on meeting my grandkids, let along knowing them. This is where capitalism and humanity have very conflicting goals.

It's reality but I don't have to like it. It don't have to be a conspiracy to suck.

Is it the only game in town, it's seriously flawed and we absolutely need it.

Double-edged sword.

 

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.

 

Yeah, I was thinking we could at least do them for each other. The could also be more intereactive. Any takers to host the first one? You could pick a paper of your choice to talk about.

I think the webinar companis gives out free trials and we could take turns signing up for a free month in order to host them.