Guest guest Posted September 28, 2010 Report Share Posted September 28, 2010 Oh hell yeah. (excuse me) I wonder what Dr Klimas thinks of him? If she likes him, then I'll be really happy! ________________________________ From: Jill Boyer <sjillboyer@...> nids <nids > Sent: Tue, September 28, 2010 6:43:48 AM Subject: Ian Lipkin  I read this but forgot about it (don't you just love my short term memory problems). Anyway, Ian Lipkin is the principal investigator of the Autism Birth Cohort and in June, he was appointed by the NIH to oversee XMRV and CFS in July of this year.  http://www.forums.aboutmecfs.org/content.php?226-NIH-Steps-Up-Plate-Picks-Pathog\ en-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study  Hmmmmm.  Jill  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2010 Report Share Posted September 29, 2010 I am having lunch with her tomorrow. I will ask. Any other questions Jill? Bill ________________________________ From: <thecolemans4@...> Sent: Tue, September 28, 2010 8:04:35 PM Subject: Re: Ian Lipkin Oh hell yeah. (excuse me) I wonder what Dr Klimas thinks of him? If she likes him, then I'll be really happy! ________________________________ From: Jill Boyer <sjillboyer@...> nids <nids > Sent: Tue, September 28, 2010 6:43:48 AM Subject: Ian Lipkin I read this but forgot about it (don't you just love my short term memory problems). Anyway, Ian Lipkin is the principal investigator of the Autism Birth Cohort and in June, he was appointed by the NIH to oversee XMRV and CFS in July of this year. http://www.forums.aboutmecfs.org/content.php?226-NIH-Steps-Up-Plate-Picks-Pathog\ en-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study Hmmmmm. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2010 Report Share Posted September 29, 2010 Uggggh. I have so little time to respond and think about this. The first thing that pop into my mind is that Dr. Klimas had some goodies in her freezer (Gulf War Syndrome Patients - well, not the whole patient - their blood I mean). Has she received any results back? What is she finding? I will try to think of some more. Â Oh, does she have an " in " with the NIH intramural committee on autism (IACC)? They were suppose to be " HOT ON IT " when it came to XMRV and the birds are still chirping over here. Does she know anything? Thank you Bill. Â Â Cheers, Â Jill From: Bill klimas <klimas_bill@...> Subject: Re: Ian Lipkin Date: Wednesday, September 29, 2010, 7:12 AM Â I am having lunch with her tomorrow. I will ask. Any other questions Jill? Bill ________________________________ From: <thecolemans4@...> Sent: Tue, September 28, 2010 8:04:35 PM Subject: Re: Ian Lipkin Oh hell yeah. (excuse me) I wonder what Dr Klimas thinks of him? If she likes him, then I'll be really happy! ________________________________ From: Jill Boyer <sjillboyer@...> nids <nids > Sent: Tue, September 28, 2010 6:43:48 AM Subject: Ian Lipkin I read this but forgot about it (don't you just love my short term memory problems). Anyway, Ian Lipkin is the principal investigator of the Autism Birth Cohort and in June, he was appointed by the NIH to oversee XMRV and CFS in July of this year. http://www.forums.aboutmecfs.org/content.php?226-NIH-Steps-Up-Plate-Picks-Pathog\ en-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study Hmmmmm. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2010 Report Share Posted September 30, 2010 Jill I asked her about the GWS guys and she said she sent there samples to three different labs with mixed results from two but solid positives from the third. She hopes to be doing her own assay soon. She does sit on the XMRV blood safety board at the NIH so I am sure she is in the know. I did not get to sit down with her yesterday but I hope to be able to spend the weekend with her and other family members this weekend on a getaway. First time since Christmas for her and I. I will check into it. Bill ________________________________ From: Jill Boyer <sjillboyer@...> Sent: Wed, September 29, 2010 4:18:10 PM Subject: Re: Ian Lipkin Uggggh. I have so little time to respond and think about this. The first thing that pop into my mind is that Dr. Klimas had some goodies in her freezer (Gulf War Syndrome Patients - well, not the whole patient - their blood I mean). Has she received any results back? What is she finding? I will try to think of some more. Oh, does she have an " in " with the NIH intramural committee on autism (IACC)? They were suppose to be " HOT ON IT " when it came to XMRV and the birds are still chirping over here. Does she know anything? Thank you Bill. Cheers, Jill From: Bill klimas <klimas_bill@...> Subject: Re: Ian Lipkin Date: Wednesday, September 29, 2010, 7:12 AM I am having lunch with her tomorrow. I will ask. Any other questions Jill? Bill ________________________________ From: <thecolemans4@...> Sent: Tue, September 28, 2010 8:04:35 PM Subject: Re: Ian Lipkin Oh hell yeah. (excuse me) I wonder what Dr Klimas thinks of him? If she likes him, then I'll be really happy! ________________________________ From: Jill Boyer <sjillboyer@...> nids <nids > Sent: Tue, September 28, 2010 6:43:48 AM Subject: Ian Lipkin I read this but forgot about it (don't you just love my short term memory problems). Anyway, Ian Lipkin is the principal investigator of the Autism Birth Cohort and in June, he was appointed by the NIH to oversee XMRV and CFS in July of this year. http://www.forums.aboutmecfs.org/content.php?226-NIH-Steps-Up-Plate-Picks-Pathog\ en-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study Hmmmmm. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2010 Report Share Posted October 2, 2010 Hi Bill, Â I hope you get this before you see her sister. As mentioned, what does your sister think of Ian Lipkin? Â Thank you, Â Jill Jill Boyer, 5544 Glasgow Place, Columbus, OH 43235, USA email: sjillboyer@..., phone: 614-538-8986 Â From: Bill klimas <klimas_bill@...> Subject: Re: Ian Lipkin Date: Wednesday, September 29, 2010, 7:12 AM I am having lunch with her tomorrow. I will ask. Any other questions Jill? Bill ________________________________ From: <thecolemans4@...> Sent: Tue, September 28, 2010 8:04:35 PM Subject: Re: Ian Lipkin Oh hell yeah. (excuse me) I wonder what Dr Klimas thinks of him? If she likes him, then I'll be really happy! ________________________________ From: Jill Boyer <sjillboyer@...> nids <nids > Sent: Tue, September 28, 2010 6:43:48 AM Subject: Ian Lipkin I read this but forgot about it (don't you just love my short term memory problems). Anyway, Ian Lipkin is the principal investigator of the Autism Birth Cohort and in June, he was appointed by the NIH to oversee XMRV and CFS in July of this year. http://www.forums.aboutmecfs.org/content.php?226-NIH-Steps-Up-Plate-Picks-Pathog\ en-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study Hmmmmm. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2010 Report Share Posted October 5, 2010 I have my very strong doubts about Lipkin. Back in 2008, he co-authored a study on MMR in autism. He did biopsies on kids with autism and only found MMR virus in one child. I would have respected his results if he had limited his conclusions to the statement that he could not confirm a claim that measles vaccine causes autism. However, he went much further, claiming that measles vaccine was exonerated. Someone from the CDC was a co-author, and I listened to their press release at the time. The pro-vaccine stance made me sick, and the severe overreaching of Lipkin's conclusions were outrageous. I think he's just a man with the potential to be a great scientist who lets his own biases get in the way of his work. Even I could come up with a million reasons why his conclusions don't hold up (well, maybe not a million -- but quite a few). People in the CFS world seem to be satisfied, and even excited about his role in the XMRV debate. He seems to have a bias toward CFS being caused by virus, so maybe they won't be disappointed. I just don't trust him. Betty > > Oh hell yeah. (excuse me) > > I wonder what Dr Klimas thinks of him? If she likes him, then I'll be really > happy! > > > > > > > ________________________________ > From: Jill Boyer <sjillboyer@...> > nids <nids > > Sent: Tue, September 28, 2010 6:43:48 AM > Subject: Ian Lipkin > >  > I read this but forgot about it (don't you just love my short term memory > problems). Anyway, Ian Lipkin is the principal investigator of the Autism Birth > Cohort and in June, he was appointed by the NIH to oversee XMRV and CFS in July > of this year. > >  > http://www.forums.aboutmecfs.org/content.php?226-NIH-Steps-Up-Plate-Picks-Pathog\ en-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study > >  > Hmmmmm. >  > Jill > >  > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2010 Report Share Posted October 5, 2010 Wow Betty. I did not know this. My radar is fully on and I hope you do not mind that I send this information to my other ME/CFS friends. He may be just another front man to say " no " to viruses (just like the man that appointed him). Again, thank you for the heads up.  Thank you,  Jill From: Betty <bettybona1@...> Subject: Re: Ian Lipkin Date: Tuesday, October 5, 2010, 2:50 PM  I have my very strong doubts about Lipkin. Back in 2008, he co-authored a study on MMR in autism. He did biopsies on kids with autism and only found MMR virus in one child. I would have respected his results if he had limited his conclusions to the statement that he could not confirm a claim that measles vaccine causes autism. However, he went much further, claiming that measles vaccine was exonerated. Someone from the CDC was a co-author, and I listened to their press release at the time. The pro-vaccine stance made me sick, and the severe overreaching of Lipkin's conclusions were outrageous. I think he's just a man with the potential to be a great scientist who lets his own biases get in the way of his work. Even I could come up with a million reasons why his conclusions don't hold up (well, maybe not a million -- but quite a few). People in the CFS world seem to be satisfied, and even excited about his role in the XMRV debate. He seems to have a bias toward CFS being caused by virus, so maybe they won't be disappointed. I just don't trust him. Betty > > Oh hell yeah. (excuse me) > > I wonder what Dr Klimas thinks of him? If she likes him, then I'll be really > happy! > > > > > > > ________________________________ > From: Jill Boyer <sjillboyer@...> > nids <nids > > Sent: Tue, September 28, 2010 6:43:48 AM > Subject: Ian Lipkin > >  > I read this but forgot about it (don't you just love my short term memory > problems). Anyway, Ian Lipkin is the principal investigator of the Autism Birth > Cohort and in June, he was appointed by the NIH to oversee XMRV and CFS in July > of this year. > >  > http://www.forums.aboutmecfs.org/content.php?226-NIH-Steps-Up-Plate-Picks-Pathog\ en-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study > >  > Hmmmmm. >  > Jill > >  > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2010 Report Share Posted October 5, 2010 The sad thing is that there were cases pending in the Vaccine Court claiming that the injured child's autism was caused by the MMR. I didn't follow it closely at the time, but I would bet that Lipkin's conclusions had an impact on the decision. The petitioners lost their claim. I really think Lipkin had a duty to be more careful about the interpretations he made of his study -- he had to know there were claimants waiting for the research. There were other people I respect involved including Hornig and Buie. Some of the conclusions made were perfectly reasonable postulates you could make based on the study, but postulates are not proven fact. I didn't hear a real big stink in the autism world, but I was a little out of the loop at the time. When I checked later, I couldn't find many good criticisms of his work, and I just don't quite understand why. He's pretty high-powered, and maybe people just don't question him. That makes him all the more dangerous. But, like I said, he seems to believe in a viral cause for CFS -- maybe not a retroviral cause though. Feel free to pass this on to other CFSers with the caveat that I could be completely full of baloney. I hate to create stress if there is no reason for concern about Lipkin. Betty > > > > Oh hell yeah. (excuse me) > > > > I wonder what Dr Klimas thinks of him? If she likes him, then I'll be really > > happy! > > > > > > > > > > > > > > ________________________________ > > From: Jill Boyer <sjillboyer@> > > nids <nids > > > Sent: Tue, September 28, 2010 6:43:48 AM > > Subject: Ian Lipkin > > > >  > > I read this but forgot about it (don't you just love my short term memory > > problems). Anyway, Ian Lipkin is the principal investigator of the Autism Birth > > Cohort and in June, he was appointed by the NIH to oversee XMRV and CFS in July > > of this year. > > > >  > > http://www.forums.aboutmecfs.org/content.php?226-NIH-Steps-Up-Plate-Picks-Pathog\ en-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study > > > >  > > Hmmmmm. > >  > > Jill > > > >  > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2010 Report Share Posted October 6, 2010 Betty, you are obviously not full of b*loney. I googled Lipkin and MMR - sure enough, you were right. I would write more but my kid broke some keys on my keybo & rd. Uggggh.  Jill From: Betty <bettybona1@...> Subject: Re: Ian Lipkin Date: Tuesday, October 5, 2010, 6:13 PM  The sad thing is that there were cases pending in the Vaccine Court claiming that the injured child's autism was caused by the MMR. I didn't follow it closely at the time, but I would bet that Lipkin's conclusions had an impact on the decision. The petitioners lost their claim. I really think Lipkin had a duty to be more careful about the interpretations he made of his study -- he had to know there were claimants waiting for the research. There were other people I respect involved including Hornig and Buie. Some of the conclusions made were perfectly reasonable postulates you could make based on the study, but postulates are not proven fact. I didn't hear a real big stink in the autism world, but I was a little out of the loop at the time. When I checked later, I couldn't find many good criticisms of his work, and I just don't quite understand why. He's pretty high-powered, and maybe people just don't question him. That makes him all the more dangerous. But, like I said, he seems to believe in a viral cause for CFS -- maybe not a retroviral cause though. Feel free to pass this on to other CFSers with the caveat that I could be completely full of baloney. I hate to create stress if there is no reason for concern about Lipkin. Betty > > > > Oh hell yeah. (excuse me) > > > > I wonder what Dr Klimas thinks of him? If she likes him, then I'll be really > > happy! > > > > > > > > > > > > > > ________________________________ > > From: Jill Boyer <sjillboyer@> > > nids <nids > > > Sent: Tue, September 28, 2010 6:43:48 AM > > Subject: Ian Lipkin > > > >  > > I read this but forgot about it (don't you just love my short term memory > > problems). Anyway, Ian Lipkin is the principal investigator of the Autism Birth > > Cohort and in June, he was appointed by the NIH to oversee XMRV and CFS in July > > of this year. > > > >  > > http://www.forums.aboutmecfs.org/content.php?226-NIH-Steps-Up-Plate-Picks-Pathog\ en-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study > > > >  > > Hmmmmm. > >  > > Jill > > > >  > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2010 Report Share Posted October 6, 2010 Jill This is a link to a discussion on Lipkin on Phoenix Rising: http://www.forums.aboutmecfs.org/content.php?226-NIH-Steps-Up-Plate-Picks-Pathog\ en-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study#comments There are many perspectives voiced and on the overall it pretty much agrees with my feelings. Lipkin is a very well respected viral detective (Superstar status) and in the long run a good choice, the only question is how long. There are so many top people on this right now, any one study will not make or break the outcome. This reminds me of the early AIDS days when it became a national crisis. Conflicting results were and will be found and they will slow things a bit but not dismiss this line of study. Lipkins involvement and his reputation will just help fan the fire in the press and that is what we need. This needs to be seen as a true international crisis and epidemic far beyond CFS. I run a " Google Alert " on XMRV, MLV, HMRV daily and it delivers links to every article published each day on each hit. Some days there is one most none and almost never in a mainstream publication outside the CFS community (My Autism Google alert get about 15 hits a day). I have never seen anything on XMRV and Autism. The controversy has all of these researchers keeping their mouth shut and Lipkins involvement may well open their door to the press. What I believe we should do is bombard the big names in the media (WSJ, NYT ETC..) with everything we can get our hands on. Remember the eighties - HIV and AIDS was the big story, That is what 1) drove the research dollars on the private sector 2) keeped the politicians focused on the epidemic and that is where the public sector dollars came from. In the worlds eyes there is no epidemic, Autism can not be cured and CFS is a bunch of slackers. When AIDS, HIV epidemic floored and scared the world in the early eighties it took several years to just fine tune a commonly used and accepted test for it and 12 years to fine the cocktail of drugs to prevent it from killing any more folks (and that was with unlimited bucks). It will not take nearly that long with XMRV. but first we need to floor the world with the news and get the press behind this. Lipkin probably will help but we can not wait for the results of his work. If this becomes news now based on the work being done we will have succeeded. The science community will let this drag on for years if we let them. Bill ________________________________ From: Jill Boyer <sjillboyer@...> Sent: Wed, October 6, 2010 7:46:05 AM Subject: Re: Re: Ian Lipkin Betty, you are obviously not full of b*loney. I googledLipkin and MMR - sure enough, you were right. I would write more but my kid broke some keys on my keybo & rd. Uggggh. Jill From: Betty <bettybona1@...> Subject: Re: Ian Lipkin Date: Tuesday, October 5, 2010, 6:13 PM The sad thing is that there were cases pending in the Vaccine Court claiming that the injured child's autism was caused by the MMR. I didn't follow it closely at the time, but I would bet that Lipkin's conclusions had an impact on the decision. The petitioners lost their claim. I really think Lipkin had a duty to be more careful about the interpretations he made of his study -- he had to know there were claimants waiting for the research. There were other people I respect involved including Hornig and Buie. Some of the conclusions made were perfectly reasonable postulates you could make based on the study, but postulates are not proven fact. I didn't hear a real big stink in the autism world, but I was a little out of the loop at the time. When I checked later, I couldn't find many good criticisms of his work, and I just don't quite understand why. He's pretty high-powered, and maybe people just don't question him. That makes him all the more dangerous. But, like I said, he seems to believe in a viral cause for CFS -- maybe not a retroviral cause though. Feel free to pass this on to other CFSers with the caveat that I could be completely full of baloney. I hate to create stress if there is no reason for concern about Lipkin. Betty > > > > Oh hell yeah. (excuse me) > > > > I wonder what Dr Klimas thinks of him? If she likes him, then I'll be >really > > > happy! > > > > > > > > > > > > > > ________________________________ > > From: Jill Boyer <sjillboyer@> > > nids <nids > > > Sent: Tue, September 28, 2010 6:43:48 AM > > Subject: Ian Lipkin > > > >  > > I read this but forgot about it (don't you just love my short term memory > > problems). Anyway, Ian Lipkin is the principal investigator of the Autism >Birth > > > Cohort and in June, he was appointed by the NIH to oversee XMRV and CFS in >July > > > of this year. > > > >  > > >http://www.forums.aboutmecfs.org/content.php?226-NIH-Steps-Up-Plate-Picks-Patho\ gen-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study > > > > >  > > Hmmmmm. > >  > > Jill > > > >  > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2010 Report Share Posted October 6, 2010 I agree, Bill, that it could always be worse. It's good to have a " superstar " on board " with no horses in this race " because the scientific community can't ignore him. People don't even try to prove him wrong because they figure they'll fail. This is great if the superstar has done impecable work, but sometimes they don't. I don't believe Lipkin did impecable work in the MMR study. First of all, he got the wrong cohort, a common complaint with the XMRV research. The criteria for his subjects was that they have autism and gastro issues sufficient to need a scoping. Wakefield's original 11 had parents who were absolutely convinced their child developed autism because of the MMR. Heck, I'm suspicious of the MMR, but I'm not convinced in my son's case that it was the cause even though he has MBP antibodies. I just didn't see a clear and abrupt regression that I could tie to MMR (it might have been there, but I wasn't very observant). But I definitely know people who did see that and whose kids would make good subjects for the study Lipkin did. Furthermore, just because he didn't find measles in the gut doesn't mean there's no connection with autism, and he certainly allowed the CDC to make this leap at his press conference, and he made that statement as well. The mental gymnastics he did about timing of the MMR, autism symptoms, and gastro issues do support a finding of no causative connection, but they don't prove it. He stated that these were proof. Kirby tried to question him about this at the press conference suggesting that a pre-existing mito issue might be a situation where MMR was at least partially causative, but you might see some symptoms before. At least that's what I think he was saying, but Lipkin wouldn't really listen and basically blew off the question. I'm just saying that we need to be vigilant and involved in the process of developing and interpreting the research if at all possible. Once this guy gives his yes or no nod, it's over. There'll be no going back for a critical assessment of his study. We shouldn't sit back complacently happy that we have a superstar. But I agree that we should bombard the media. Betty > > > > > > Oh hell yeah. (excuse me) > > > > > > I wonder what Dr Klimas thinks of him? If she likes him, then I'll be > >really > > > > > happy! > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > From: Jill Boyer <sjillboyer@> > > > nids <nids > > > > Sent: Tue, September 28, 2010 6:43:48 AM > > > Subject: Ian Lipkin > > > > > >  > > > I read this but forgot about it (don't you just love my short term memory > > > problems). Anyway, Ian Lipkin is the principal investigator of the Autism > >Birth > > > > > Cohort and in June, he was appointed by the NIH to oversee XMRV and CFS in > >July > > > > > of this year. > > > > > >  > > > > >http://www.forums.aboutmecfs.org/content.php?226-NIH-Steps-Up-Plate-Picks-Patho\ gen-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study > > > > > > > >  > > > Hmmmmm. > > >  > > > Jill > > > > > >  > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2010 Report Share Posted October 6, 2010 I'm probably overstating my concerns here. Bill is probably right that one study will not make or break the XMRV debate, but Lipkin's one study certainly put the nail in Wakefield's coffin. After that, many in the scientific community and almost everyone in the general public view him as a crackpot and a charlatan. But he was vulnerable. XMRV proponents are more plentiful and less vulnerable. Betty > > > > > > > > Oh hell yeah. (excuse me) > > > > > > > > I wonder what Dr Klimas thinks of him? If she likes him, then I'll be > > >really > > > > > > > happy! > > > > > > > > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > From: Jill Boyer <sjillboyer@> > > > > nids <nids > > > > > Sent: Tue, September 28, 2010 6:43:48 AM > > > > Subject: Ian Lipkin > > > > > > > >  > > > > I read this but forgot about it (don't you just love my short term memory > > > > problems). Anyway, Ian Lipkin is the principal investigator of the Autism > > >Birth > > > > > > > Cohort and in June, he was appointed by the NIH to oversee XMRV and CFS in > > >July > > > > > > > of this year. > > > > > > > >  > > > > > > >http://www.forums.aboutmecfs.org/content.php?226-NIH-Steps-Up-Plate-Picks-Patho\ gen-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study > > > > > > > > > > >  > > > > Hmmmmm. > > > >  > > > > Jill > > > > > > > >  > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2010 Report Share Posted October 6, 2010 This post prompted me to go back through my son’s various assessments (he was a micro-preemie, so he was followed by EI from birth). He has cerebral palsy in addition to ASD (both mild). Prior to the MMR, which he was given WHILE having a horrible reaction to being introduced to cow’s milk, he had good eye contact and socialization according to these reports. These disappeared within 2 months after the MMR, and he was also starting to perseverate. His language skills deteriorated. Kristy Nardini TazziniTM Stainless Steel Bottles <http://www.tazzini.com/> http://www.tazzini.com kristy@... Phone: 858.243.1929 Fax: 858.724.1418 From: [mailto: ] On Behalf Of Betty Sent: Wednesday, October 06, 2010 8:44 AM Subject: Re: Ian Lipkin I'm probably overstating my concerns here. Bill is probably right that one study will not make or break the XMRV debate, but Lipkin's one study certainly put the nail in Wakefield's coffin. After that, many in the scientific community and almost everyone in the general public view him as a crackpot and a charlatan. But he was vulnerable. XMRV proponents are more plentiful and less vulnerable. Betty > > > > > > > > Oh hell yeah.ÂÂ (excuse me) > > > > > > > > I wonder what Dr Klimas thinks of him?ÂÂ If she likes him, then I'll be > > >really > > > > > > > happy! > > > > > > > > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > From: Jill Boyer <sjillboyer@> > > > > nids <nids <mailto:nids%40> > > > > > Sent: Tue, September 28, 2010 6:43:48 AM > > > > Subject: Ian Lipkin > > > > > > > > ÂÂ > > > > I read this but forgot about it (don't you just love my short term memory > > > > problems). Anyway, Ian Lipkin is the principal investigator of the Autism > > >Birth > > > > > > > Cohort and in June, he was appointed by the NIH to oversee XMRV and CFS in > > >July > > > > > > > of this year. > > > > > > > > ÂÂ > > > > > > >http://www.forums.aboutmecfs.org/content.php?226-NIH-Steps-Up-Plate-Picks-Patho\ gen-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study > > > > > > > > > > > ÂÂ > > > > Hmmmmm. > > > > ÂÂ > > > > Jill > > > > > > > > ÂÂ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2010 Report Share Posted October 7, 2010 You all make great points here but I am very nervous about one person making or breaking the XMRV research. This happened back in the early 90's when a researcher discovered a retrovirus in CFS patients. I do not know the whole history and it appears not be related to XMRV but ME/CFS research came to a screeching halt (not sure if that is the best wording since there really was no money dedicated to it) but it was not until the WPI came along that put it back on the map. If you read Osler's web, you will see the CDC attitude towards the illness which is reprehensible. I wish I had a link to the paper that was stuck on a wall at the CDC. It basically made fun of the disease. If I find it, I will post it here.  Jill From: Kristy Nardini <knardini@...> Subject: RE: Re: Ian Lipkin Date: Wednesday, October 6, 2010, 7:45 PM  This post prompted me to go back through my son’s various assessments (he was a micro-preemie, so he was followed by EI from birth). He has cerebral palsy in addition to ASD (both mild). Prior to the MMR, which he was given WHILE having a horrible reaction to being introduced to cow’s milk, he had good eye contact and socialization according to these reports. These disappeared within 2 months after the MMR, and he was also starting to perseverate. His language skills deteriorated. Kristy Nardini TazziniTM Stainless Steel Bottles <http://www.tazzini.com/> http://www.tazzini.com kristy@... Phone: 858.243.1929 Fax: 858.724.1418 From: [mailto: ] On Behalf Of Betty Sent: Wednesday, October 06, 2010 8:44 AM Subject: Re: Ian Lipkin I'm probably overstating my concerns here. Bill is probably right that one study will not make or break the XMRV debate, but Lipkin's one study certainly put the nail in Wakefield's coffin. After that, many in the scientific community and almost everyone in the general public view him as a crackpot and a charlatan. But he was vulnerable. XMRV proponents are more plentiful and less vulnerable. Betty > > > > > > > > Oh hell yeah.ÂÂ (excuse me) > > > > > > > > I wonder what Dr Klimas thinks of him?ÂÂ If she likes him, then I'll be > > >really > > > > > > > happy! > > > > > > > > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > From: Jill Boyer <sjillboyer@> > > > > nids <nids <mailto:nids%40> > > > > > Sent: Tue, September 28, 2010 6:43:48 AM > > > > Subject: Ian Lipkin > > > > > > > > ÂÂ > > > > I read this but forgot about it (don't you just love my short term memory > > > > problems). Anyway, Ian Lipkin is the principal investigator of the Autism > > >Birth > > > > > > > Cohort and in June, he was appointed by the NIH to oversee XMRV and CFS in > > >July > > > > > > > of this year. > > > > > > > > ÂÂ > > > > > > >http://www.forums.aboutmecfs.org/content.php?226-NIH-Steps-Up-Plate-Picks-Patho\ gen-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study > > > > > > > > > > > ÂÂ > > > > Hmmmmm. > > > > ÂÂ > > > > Jill > > > > > > > > ÂÂ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2010 Report Share Posted October 7, 2010 I think it's on the author of Osler's Web's website. ________________________________ From: Jill Boyer <sjillboyer@...> Sent: Thu, October 7, 2010 8:18:16 AM Subject: RE: Re: Ian Lipkin  You all make great points here but I am very nervous about one person making or breaking the XMRV research. This happened back in the early 90's when a researcher discovered a retrovirus in CFS patients. I do not know the whole history and it appears not be related to XMRV but ME/CFS research came to a screeching halt (not sure if that is the best wording since there really was no money dedicated to it) but it was not until the WPI came along that put it back on the map. If you read Osler's web, you will see the CDC attitude towards the illness which is reprehensible. I wish I had a link to the paper that was stuck on a wall at the CDC. It basically made fun of the disease. If I find it, I will post it here.  Jill From: Kristy Nardini <knardini@...> Subject: RE: Re: Ian Lipkin Date: Wednesday, October 6, 2010, 7:45 PM  This post prompted me to go back through my son’s various assessments (he was a micro-preemie, so he was followed by EI from birth). He has cerebral palsy in addition to ASD (both mild). Prior to the MMR, which he was given WHILE having a horrible reaction to being introduced to cow’s milk, he had good eye contact and socialization according to these reports. These disappeared within 2 months after the MMR, and he was also starting to perseverate. His language skills deteriorated. Kristy Nardini TazziniTM Stainless Steel Bottles <http://www.tazzini.com/> http://www.tazzini.com kristy@... Phone: 858.243.1929 Fax: 858.724.1418 From: [mailto: ] On Behalf Of Betty Sent: Wednesday, October 06, 2010 8:44 AM Subject: Re: Ian Lipkin I'm probably overstating my concerns here. Bill is probably right that one study will not make or break the XMRV debate, but Lipkin's one study certainly put the nail in Wakefield's coffin. After that, many in the scientific community and almost everyone in the general public view him as a crackpot and a charlatan. But he was vulnerable. XMRV proponents are more plentiful and less vulnerable. Betty > > > > > > > > Oh hell yeah.ÂÂ (excuse me) > > > > > > > > I wonder what Dr Klimas thinks of him?ÂÂ If she likes him, then I'll >be > > > >really > > > > > > > happy! > > > > > > > > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > From: Jill Boyer <sjillboyer@> > > > > nids <nids <mailto:nids%40> > > > > > Sent: Tue, September 28, 2010 6:43:48 AM > > > > Subject: Ian Lipkin > > > > > > > > ÂÂ > > > > I read this but forgot about it (don't you just love my short term memory > > > > > problems). Anyway, Ian Lipkin is the principal investigator of the Autism > > > >Birth > > > > > > > Cohort and in June, he was appointed by the NIH to oversee XMRV and CFS >in > > > >July > > > > > > > of this year. > > > > > > > > ÂÂ > > > > > > >>http://www.forums.aboutmecfs.org/content.php?226-NIH-Steps-Up-Plate-Picks-Path\ ogen-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study > > > > > > > > > > > > ÂÂ > > > > Hmmmmm. > > > > ÂÂ > > > > Jill > > > > > > > > ÂÂ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2010 Report Share Posted October 7, 2010 Your right. It is still on the front page.  http://oslersweb.com/  Just go down to the part, Dear Sirs.... I am sick. You have to open up the document. Beware, this letter will make you sick.  Jill From: Kristy Nardini <knardini@...> Subject: RE: Re: Ian Lipkin Date: Wednesday, October 6, 2010, 7:45 PM  This post prompted me to go back through my son’s various assessments (he was a micro-preemie, so he was followed by EI from birth). He has cerebral palsy in addition to ASD (both mild). Prior to the MMR, which he was given WHILE having a horrible reaction to being introduced to cow’s milk, he had good eye contact and socialization according to these reports. These disappeared within 2 months after the MMR, and he was also starting to perseverate. His language skills deteriorated. Kristy Nardini TazziniTM Stainless Steel Bottles <http://www.tazzini.com/> http://www.tazzini.com kristy@... Phone: 858.243.1929 Fax: 858.724.1418 From: [mailto: ] On Behalf Of Betty Sent: Wednesday, October 06, 2010 8:44 AM Subject: Re: Ian Lipkin I'm probably overstating my concerns here. Bill is probably right that one study will not make or break the XMRV debate, but Lipkin's one study certainly put the nail in Wakefield's coffin. After that, many in the scientific community and almost everyone in the general public view him as a crackpot and a charlatan. But he was vulnerable. XMRV proponents are more plentiful and less vulnerable. Betty > > > > > > > > Oh hell yeah.ÂÂ (excuse me) > > > > > > > > I wonder what Dr Klimas thinks of him?ÂÂ If she likes him, then I'll >be > > > >really > > > > > > > happy! > > > > > > > > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > From: Jill Boyer <sjillboyer@> > > > > nids <nids <mailto:nids%40> > > > > > Sent: Tue, September 28, 2010 6:43:48 AM > > > > Subject: Ian Lipkin > > > > > > > > ÂÂ > > > > I read this but forgot about it (don't you just love my short term memory > > > > > problems). Anyway, Ian Lipkin is the principal investigator of the Autism > > > >Birth > > > > > > > Cohort and in June, he was appointed by the NIH to oversee XMRV and CFS >in > > > >July > > > > > > > of this year. > > > > > > > > ÂÂ > > > > > > >>http://www.forums.aboutmecfs.org/content.php?226-NIH-Steps-Up-Plate-Picks-Path\ ogen-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study > > > > > > > > > > > > ÂÂ > > > > Hmmmmm. > > > > ÂÂ > > > > Jill > > > > > > > > ÂÂ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2010 Report Share Posted October 7, 2010 I remember the early days of HIV. There were two things that pushed the research; activism on the part of the Gay Community, and the concern that HIV was much more communicable than it actually is. I also think the race between Fauci and the French was another factor. Having watched the CFS situation over the decades I think that it may come to exerting pressure however, I think this has to be done in an intelligent, organized, considered way. Kathy on Ian Lipkin > > > >  > > I read this but forgot about it (don't you just love my short term memory > > problems). Anyway, Ian Lipkin is the principal investigator of the Autism >Birth > > > Cohort and in June, he was appointed by the NIH to oversee XMRV and CFS in >July > > > of this year. > > > >  > > >http://www.forums.aboutmecfs.org/content.php?226-NIH-Steps-Up-Plate-Picks-Patho\ gen-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study > > > > >  > > Hmmmmm. > >  > > Jill > > > >  > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2010 Report Share Posted October 8, 2010 there is an idea: === Please Forward Widely === " Time for Action " Campaign For ME/CFS Patients, Their Families and Friends Organizers: , Rivka , Charlotte von Salis Contact: bobmiller42@... On the heels of the September 7, 2010, historic NIH meeting with ME/CFS patients and their families, now is the time to let our federal health agencies know we are expecting big changes. The more they hear from us now, the more they'll listen to us next time we meet. Our " Time for Action " campaign is advocacy made easy -- yet it will have a huge impact. We ask patients, their families and friends to email, call and/or fax NIH Director and NIAID Director Fauci with this simple question every day, starting today. (Please Cc: emails to at: hebs1reel@...) Dear Directors and Fauci, What have you done for ME/CFS today? Patients and their families are waiting. Name: Doe (or ) Location: Miami, FL Time: Sick 12 years Contact info: 1) National Institutes of Health Director Francis Email: collinsf@... Cc to: hebs1reel@... Phone: 301-496-2433 Fax: 301-402-2700 2) National Institutes of Allergy and Infectious Disease Director Fauci Email: afauci@... Cc to: hebs1reel@... Phone: 301-496-2263 Fax: 301-402-3573 For inspiration, here's our " How To " video: < > > > > > > > Oh hell yeah. (excuse me) > > > > > > I wonder what Dr Klimas thinks of him? If she likes him, then I'll be > >really > > > > > happy! > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > From: Jill Boyer <sjillboyer@> > > > nids nids > > > Sent: Tue, September 28, 2010 6:43:48 AM > > > Subject: Ian Lipkin > > > > > >  > > > I read this but forgot about it (don't you just love my short term memory > > > problems). Anyway, Ian Lipkin is the principal investigator of the Autism > >Birth > > > > > Cohort and in June, he was appointed by the NIH to oversee XMRV and CFS in > >July > > > > > of this year. > > > > > >  > > > > >http://www.forums.aboutmecfs.org/content.php?226-NIH-Steps-Up-Plate-Pic\ ks-Pathogen-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study > > > > > > > >  > > > Hmmmmm. > > >  > > > Jill > > > > > >  > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2010 Report Share Posted October 8, 2010 Although that might be a satisfying thing to do on some level, crashing the Government Computers by that kind of volume would not necessarily result in a positive response. I think if volume is what one is looking for then writing a letter and mailing it would make the point without the negative consequences to all of the other people on the system, working with your local Congressman and Senators would be more productive in my mind however. on NNY Autism Clinic Ian Lipkin > > > > > >  > > > I read this but forgot about it (don't you just love my short term memory > > > problems). Anyway, Ian Lipkin is the principal investigator of the Autism > >Birth > > > > > Cohort and in June, he was appointed by the NIH to oversee XMRV and CFS in > >July > > > > > of this year. > > > > > >  > > > > >http://www.forums.aboutmecfs.org/content.php?226-NIH-Steps-Up-Plate-Pic\ ks-Pathogen-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study > > > > > > > >  > > > Hmmmmm. > > >  > > > Jill > > > > > >  > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.