Cort
Phoenix Rising Founder
- Messages
- 7,383
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!
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!