CFSAC Meeting - Federal Response to XMRV

[Cort]

ORWH - Always the nave one I expected the NIH to announce a big new initiative on XMRV. (Staci Stevens thought that was funny). They obviously didn't. Dr. Hanna's presentation - she is the 'head' of the CFS research effort which is based in the Office Of Research on Women's Health - hardly even mentioned XM RV. Instead we got her big initiative - which is to create a WIKI - an interactive website for the researchers attending the Banbury conference!

Underwhelming to say the least. Dr. Hanna gave the impression during the blood supply question that she was out of her depth. Heads were shaking in amazement in the WPI seats (Harvey, Annette, Dr. Ruscetti) when she stated we didn't have enough evidence yet to determine whether ME/CFS patients should give blood! Someone later pointed out that the National Cancer Institute stated that ME/CFS patients should not give blood!

She did say that a RFA grant is on the horizon and should be available in the next year. The RFA is a big deal because it sets out a chunk of money that the government commits to a specific topic of research. Because the money is there in advance researchers tend to jump all over it. Its possible that the RFA will be announced by the end of the year and finished by the end of next year.

CDC/NIH - Study, What Study? - it was good to hear that it will be an HIV lab in the NIH not Dr. Reeves lab in the CDC that will be testing samples for XMRV. They mentioned they would be testing split samples from the WPI. Unfortunately neither Annette Whittemore or Dr. Peterson had heard of this study. I asked Dr. Peterson if that was something he would think he would know about and he said 'Yes!' - particularly if they're using samples from the WPI. He did leave some room for federal groups somehow getting this going without him knowing about it but it did make me wonder how quick the federal response will be after all.

Researcher Interest - It was clear though that there really is very substantial researcher interest. Most of the research apparently is being done using discretionary funding that each research group has available to it; they're able to avert resources to a hot topic once it comes up and that's what they're doing. Dr. Coffin said the virus has sparked a lot of interest among his colleagues. We heard that Brigitta Evangaard - an ME/CFS researcher from Norway - is getting request after request for her samples. Annette Whittemore said that cancer researchers of all different types are looking at XMRV are they now. Dr. Peterson said he's getting requests from rheumatoid arthritis and other autoimmune disease researchers. The bug hunters - viral researchers - are very excited.

This it's all interim stuff. The real money will come when they start applying for research grants to study it and that will take awhile. The WPI has several grants in the pipeline but when I asked Dr. Peterson if money was flowing into the WPI he just laughed and said 'No";they got a nice grant from the NIH but it was not to study XMRV. Its boosted their annual budget about a third (@ 1,300,000). It'll be interesting to see when the next grant review session for CFS comes up and what comes of it.

Good Science - The Science study was better than we patients could tell. Annette Whittemore said that Science made them jump through hoop after hoop before they would publish. The WPI has been working on this for quite a while. At the March IACFS conference Dr. Mikovits said "we're working on something that will knock your socks off but I can't tell you yet". I think they've been working on it for at least a year. (Dr. Mikovits was addressing another conference which was why she was unable to come).

The fact that they were able to grow the live virus was big. (Nobody had done that before). (That means they can grow it in test tubes and begin to test it in all different ways: a big plus for the virologists). The fact they were able to isolate a virally infected cell and put it next to a prostate cancer cell and watch the virus infect the prostate cancer cell was a huge win for them. The fact that Dr. Peterson was able to thaw out some samples that had been frozen for 25 years and then grow virus out of them apparently just blew the virologists minds. That they could do these things made a very positive impression in the virology community.

Big Question Answered Soon - Just who has this XMRV virus will the answer long before any studies are done because Dr. Bateman said she and Dr. Klimas and other doctors and other samples ready to go and get tested and they will tell us how many people have the virus, what percentage of moderately ill patients have it, etc. We could know within weeks!

 

[anne]

Thank you, Cort. Thanks sort of amazing about the blood supply. You'd think after living through the AIDS era they might have learned something.

 

[fairlight]

Cort-thanks for sharing all of this information!

Do you know what the NIH gave Whittmore the grant to study? Did they give them $1,300,000? Thanks again for all of the time you've put into this!

 

[bluebird]

Thankyou, Cort for what you do. I depend on your coherent reporting of not only the headlines but also the 'backstories' which give the headlines meaning. Context is everything.

I am too sick to search the the net, to text what I am thinking, too sick to interact, too sick to sit up, form a sentence.

I have depended on your Pheonix Rising site since its inception. I need a place to go where I can trust the information and find it all in one place.

So again, thanks. I know it ain't easy.

For this post, thanks.

 

[RestingInHim]

DITTO to bluebird re: the Thanks! i don't know how you do it all, Cort! but i am immensely grateful! your website and forum has opened up a whole new vista in the cfs world. your information is clear, concise, thorough...obviously through much labor!

i pray for your continued strength...for your sake...and for all of us who benefit from your dedication and work!

 

[citybug]

Your IACFS article from March put all this in perspective for me. I think it should be in your resource sticky. Thanks for all the good reporting.
Do you think the virologists are impressed by the skill level to grow the virus, or impressed by the virus?
Do you think no one ever looked at cfs blood in an electron microscope before? I would think a student would have snuck some in. Or have the viruses floated by hundreds of times and not been identified?

 

[Cort]

The grant that they gave them is an old grant. I think its the only grant we got the the stimulus package so far. It was rejected at first - no immunologists on the review panel! - but was rated fairly highly and when the new money came in they funded it. It is, as I remember, on examining other viruses using a variety of means and looking at immune functioning particularly with regard to cytokines.

I think the virologists are impressed by any retrovirus that's infectious. I think they're very impressed and excited by the ability of the WPI to so easily grow the virus, provide evidence that it's not only in the cells but that's in the bloodstream, and that it can infect other cells. I can't remember what it was Dr. Miller said the WPI had done something that it took the AIDS community years to accomplish. It's not because they did it better but that they basically just lucked out - the virus cooperated! In some ways it's apparently easier to work with than HIV.

I did ask Dr. Peterson if federal money was flooding into the WPI. Its not. The WPI got the ball rolling and they're obviously continuing their efforts as Dr. Peterson said the federal research community is what's going to do the majority of the work. That's partially because there's simply so much work to do - the WPI can't do it all in a survey don't have funding to do more than a portion of it.

He said they did have several grants in the pipeline. It's hard to imagine that those grants would not get funded. It'll be very interesting to see what happens at the next session of the Review Panel (CFS SEP). It all takes time; it takes time to review the grants, then they have to kick it up to the Institutes to see if they will fund them. The good news is that this really is a very hot item and it appears that no one wants to miss out on getting a piece of a really hot item. So right now these big University research teams are finding ways to fit it into their agenda.

Apparently everybody who has blood samples of CFS patients is making new friends. For the first time people want to test our blood - they're calling the CFIDS Association, the WPI and researchers and trying to get blood to test. (The CAA does the smart thing with their Research Initiative - they require that each of their researchers bank their samples so they can have them in the future for testing should the need arise. Well the need has arisen. Dr. Bateman has samples waiting and ready to go for testing.

 

[Jimk]

Thanks for the summary Cort

I've got most of the audio, but haven't gotten through much of it, so your summary is much appreciated. My overall take was underwhelm about any clear direction forward. But this is an advisory panel after all. I know some researchers who were able to get virus samples from Cleveland Clinic to have a clear reference point for blood test development, so there must be a lot of activity like this behind the scenes that we won't hear about until results start generating. The shame of it is that it looks to me that these are indeed going to be motivated by discretionary funds, not by a step-up-to-the-plate response by our government.
All of this really is too early to tell. This meeting was just a first sally into uprooting the entrenched forces that have blocked relevant pursuits. It is somehow appropriate today on Halloween that everybody wants our blood! Nice to be wanted even by Vampires? They are so sexy these days...

 

[margib]

No kidding. I found it distateful that there was emphasis placed on how the budget the CDC was referring to was for 2011 ONLY, as if there were absolutely nothing they could do to get the ball rolling; as if XMRV hadn't happened. I found it interesting that the blood bank dude seemed quite nervous. I guess he had, in fact, been through the AIDS epidemic. I would have loved to be there & ask them if they needed any of my blood, as I would be happy to donate it if anyone on the panel needed a transfusion.

 

[margib]

Thank you, Cort. You are awesome.

 

[Cort]

The good thing about the discretionary funds is that it does appear to be enough to carry us forward. I think the govt except in extraordinary circumstances moves very slowly.

That 2011 discussion about the NIH and their new grant for ME/CFS was just agonizing to watch. There are ways to rapidly increase funding - yes they don't happen very often - but they do happen. Anthrax research funding went through the roof immediately - it went up about 10 times in one year and if you look at NIH funding from year to year you always see a few diseases with abnormally large increases in funding. They can absolutely make it happen but the ORWH is on the same business as usual approach as they've always been - its the same old story. Eleanor Hanna has been a complete flop in my opinion.

The virologists both in the CDC and the NIH have jumped all over this. Dr. Miller told me the PCR study on XMRV started the day after the Science paper. They've got 20 samples from the WPI and they've done about 100 me/cfs samples. He said that paper will be out fast!

I don't think we have to worry about the CDC not wanting to find this one. This is the HIV branch of the CDC not Dr. Reeves. They are hot about this - finding viruses is what they do - and they want to be the first ones out of the bag with their work. This is name making stuff. These are research geeks not politicians.

He said they are splitting the samples into Empirical and 1994 cases. Because the random sampling approach tends to gather less ill people I would expect lower rates of positivity. All we need, though, is for a good subset to show up - 20% would be fine; that's alot of people in the US!

What we couldn't handle is none - that would, obviously, be a total disaster in a lot of ways but I can't imagine that would happen.

 

[Sing]

The Game of Reality Shift

Thank you, Cort, and everyone here who is acting like a great team, fielding the ball and moving it down toward the goal posts--naturally against opponents. The opposing force is the denial and subsequent rendering of our condition as unreal, which we have fought, suffered, and in some cases, fallen into as well--All this has been challenged and changed, in effect, by the WPR study. I was delighted to read:

"This meeting was just a first sally into uprooting the entrenched forces that have blocked relevant pursuits. It is somehow appropriate today on Halloween that everybody wants our blood!"

Aren't you happy too that XMRV is easy to study, a simple, primitive retrovirus--that "it leans itself to study", as we have leant ourselves to become known? We knocked on so many doors so long. And here it is now, finally--

Trick or Treat!

Cecelia

 

[MEKoan]

It is somehow appropriate today on Halloween that everybody wants our blood!"

And, perhaps, that we have gone from silly to scary

 

[Dreambirdie]

Aren't you happy too that XMRV is easy to study, a simple, primitive retrovirus--that "it leans itself to study", as we have leant ourselves to become known? We knocked on so many doors so long. And here it is now, finally--

Trick or Treat!

Love it! Thanks for that bloody perfect metaphor.

 

[mezombie]

The virologists both in the CDC and the NIH have jumped all over this. Dr. Miller told me the PCR study on XMRV started the day after the Science paper. They've got 20 samples from the WPI and they've done about 100 me/cfs samples. He said that paper will be out fast!

I don't think we have to worry about the CDC not wanting to find this one. This is the HIV branch of the CDC not Dr. Reeves. They are hot about this - finding viruses is what they do - and they want to be the first ones out of the bag with their work. This is name making stuff. These are research geeks not politicians.

He said they are splitting the samples into Empirical and 1994 cases. Because the random sampling approach tends to gather less ill people I would expect lower rates of positivity. All we need, though, is for a good subset to show up - 20% would be fine; that's alot of people in the US!

What we couldn't handle is none - that would, obviously, be a total disaster in a lot of ways but I can't imagine that would happen.

Thanks, Cort, for sharing this information with us!

So much goes on behind the scenes that we aren't usually privy to.

Marie

 

[Martlet]

I depend on your coherent reporting of not only the headlines but also the 'backstories' which give the headlines meaning. Context is everything.

I can only echo that. More often than not, I find myself staring at articles on XMRV and thinking but what does this mean?

Thanks Cort. Your reports keep me on a more emotionally even keel.

 

[Dolphin]

He said they are splitting the samples into Empirical and 1994 cases

That's very interesting to hear, of course.
I will certainly be keeping an eye out.

For one of the 2-day Wichita studies, the tilt table study, they talked about more than 43 cases. It looks like what the CDC did there was say that this was the 1994 Fukuda group (but omitted to mention that that was when they were assessed in 1997/8/9/2000 but that most of them (52 out of 58) didn't satisfy the Fukuda definition by the time of the tilt table (2003)! This wasn't made clear to the reader. If I'd spotted it at the time, I might have written a letter.

---
Extra: I think I misread this. I think they are going to called the WPI the 1994 cases and use the CDC samples as the empirical case ones. Anyway, I think I'll leave the piece about the tilt table as it is interesting, I think.

 

[markmc2000]

concerned about special interests

Great info to hear some of the researchers at the CDC may be intersted in trying to work on this virus. However, be intersting to find out if they are given the funding and rsources to do so.

I am concerned that special interest may be behind killing this just like health care. You know behind the scenes lobbying and stuff. One reason I belive that is becuase the lack of attention CFS gets and the response from the feds. Our disease is constatly discredited. These epople know it exists, the question is why the denial in my mind.

Not only that, but because of the way the DR who testified on day two was told he would be fired for researching, testifying, or whatever regardsing CFS. What is that all about????can anybody explain why a university would go to that extreme to alienate one of their doctors for what he does with his free time? This whole thing makes me sick to my stomach.

My hope is once there is a test, the results will be prevalent enough to force funding, but it sure is an up hill battle.

 

[Dolphin]

Not only that, but because of the way the DR who testified on day two was told he would be fired for researching, testifying, or whatever regardsing CFS. What is that all about????can anybody explain why a university would go to that extreme to alienate one of their doctors for what he does with his free time? This whole thing makes me sick to my stomach.

One small point of information: Dr Friedman isn't a medical doctor but a life scientist (who does lecture to medical students as part of his job). Still seems extreme of course.

 

[hvs]

I don't think we have to worry about the CDC not wanting to find this one. This is the HIV branch of the CDC not Dr. Reeves. They are hot about this - finding viruses is what they do - and they want to be the first ones out of the bag with their work. This is name making stuff. These are research geeks not politicians.

He said they are splitting the samples into Empirical and 1994 cases. Because the random sampling approach tends to gather less ill people I would expect lower rates of positivity. All we need, though, is for a good subset to show up - 20% would be fine; that's alot of people in the US!

First, great summary Cort. Nice synthesis of some important stuff.

I'm not worried about the virus geeks not wanting to find this one. But I'm still very unhappy that they're using Reeves' bogus cohort. Even if they're using Fukuda people at some rate, their numbers of infected will be lower than the WPI study. We can debate the degree to which that will discredit the WPI--a little or a lot--but it will to some degree. Also, it will be an opening of attack for those who are interested in doing so (remember, our UK friends have it worse than we do in that regard).