*GG*
senior member
- Messages
- 6,397
- Location
- Concord, NH
So it was open to the public? I'm confused!
Lo/Alter/Gill NIH VideoCast, Chronic Fatigue Syndrome: Is There a Virus?
- Thread starter ixchelkali
- Start date
So it was open to the public? I'm confused!
Hope123
Senior Member
- Messages
- 1,266
Someone told me that NIH would have the video up in a few days BUT it might be edited. Previous talks in this series are archived but I do not know if they were edited also. If this is the case, what is NIH trying to hide from people with ME/CFS?
I have also been told that Gill did remove the slide with "The Yellow Wallpaper" quote.
I have also been told that Gill did remove the slide with "The Yellow Wallpaper" quote.
urbantravels
disjecta membra
- Messages
- 1,333
- Location
- Los Angeles, CA
Somebody on Facebook claimed that they made it NIH-only because they were "interviewing a patient" as part of the presentation.
If this is true, it would explain why the archived version will be "edited." If a patient is there discussing their illness they would surely take that part out.
Interesting if true...but a bad PR fumble on the part of the NIH to publicize the event as open to the public and then with no warning just let everyone log on and get a "you're not welcome here" message.
If this is true, it would explain why the archived version will be "edited." If a patient is there discussing their illness they would surely take that part out.
Interesting if true...but a bad PR fumble on the part of the NIH to publicize the event as open to the public and then with no warning just let everyone log on and get a "you're not welcome here" message.
August59
Daughters High School Graduation
- Messages
- 1,617
- Location
- Upstate SC, USA
When I pre-registered there was nothing on there website indicating that the webcast was "NIH only". My registration appeared to work as it should have as I was not denied registration or did not receive any email after registration that told me that the webcast was changed to "NIH only".
When I went to login yesterday I noticed the addition of "NIH only" on their login page and I was denied entrance into webcast. Sorry for the confusion!
pictureofhealth
XMRV - L'Agent du Jour
- Messages
- 534
- Location
- Europe
May have something to do with several patients writing to Gill pre presentation to politely suggest he research ME (cfs) with an established ME (cfs) researcher before using some of his slides, which were presenting misinformation about the illness and over exaggerating the benefits of exercise & the patient 'pulling themselves together' in order to get well.
They probably hadn't realised the level of patient interest in accurate information.
They probably hadn't realised the level of patient interest in accurate information.
August59
Daughters High School Graduation
- Messages
- 1,617
- Location
- Upstate SC, USA
Very good point!!
Hope123
Senior Member
- Messages
- 1,266
I would like to think so but I have my doubts. I hope you are right.
If the talk had been modified to include patient views, why hide the talk from patients?
In my bit of digging, I found out that Dr. Gill had seen Lauren Hillenbrand as a patient in the past (she wrote about it in the New Yorker) so if there was a patient interview, maybe that was it. In that case, I understand patient confidentiality but this is all speculation on my part and I hope the video comes out soon so I can see the other parts of it.
justinreilly
Senior Member
- Messages
- 2,498
- Location
- NYC (& RI)
I would think it's because he wants to just say what he wants at the talk and then edit out the offensive stuff so he doesn't get so much hate mail.
August59
Daughters High School Graduation
- Messages
- 1,617
- Location
- Upstate SC, USA
I think Dr. Alter had information that they did not want to get out yet. He is not going to put anything on a slide anymore that is not already public knowledge. Not after last time, when it got leaked.
I think he has fully isolated the virus that is intergrated into human gene, DNA or RNA (Would have to be RNA wouldn't it, since it is RNA virus?)!
I think he has fully isolated the virus that is intergrated into human gene, DNA or RNA (Would have to be RNA wouldn't it, since it is RNA virus?)!
lansbergen
Senior Member
- Messages
- 2,512
Provirus is DNA. Provirusses are integrated.
Virions are RNA. Virions are not integrated.
urbantravels
disjecta membra
- Messages
- 1,333
- Location
- Los Angeles, CA
Whoa back there, rumor mill! Is this just a complete guess, or does someone have reliable inside information of some kind?
August59
Daughters High School Graduation
- Messages
- 1,617
- Location
- Upstate SC, USA
YES - Just a guess!! Sorry Sorry Sorry!!! What I was thinking was a question Dr. Coffin asked Dr. Alter at the Phase II BWG meeting about fully isolating the virus in human dna?? Could still be worded wrong. Sorry again!
eric_s
Senior Member
- Messages
- 1,925
- Location
- Switzerland/Spain (Valencia)
Thank you!
And how refreshing it's not hosted by Stoye (the liar)
And how refreshing it's not hosted by Stoye (the liar)
George
waitin' fer rabbits
- Messages
- 853
- Location
- South Texas
Stoye sent Gill. (grins) So where is the paper about Ruscetti finding 82% of 101 patients positive for antibody's???
Sounds like either patients or some very smart doctors were asking the questions of Dr. Gill who really has a very insulated old school knowledge base of CFS. He knew nothing about pediatric cases or whether the illness affects across social economic strata. (head shake)
Closing comments were kind of depressing. Alter got the information wrong regarding the WPI using the Incline Village group therefore getting so many positives. He also got the information wrong that the Incline Village group included people who were on vacation. All of the samples from Dr. Peterson are from residents. 292 residents not vacationers. Pet Peeve sorry.
Hope123
Senior Member
- Messages
- 1,266
Haven't seen it but a patient attended and reported it back on CFS Central. She asked questions of Dr. Gill. Also glad to hear the attendents asked questions. Some folks sent Gill stuff ahead of time but not sure if he read it or just decided he didn't care.
CDC doesn't talk about pediatric cases at all on its website.
yes gill reminded me of marcus welby or some other doc stuck in a time warp....very disturbing that he was teaching people about me/cfs....should have been klimas, cheney, bell or peterson....but none of them work for the NIH.
even the patients testimony was somewhat misleading....she has a mild/moderate case of me/cfs if she is able to do water aerobics 2x/week....that would put me in cardiac arrest.
even the patients testimony was somewhat misleading....she has a mild/moderate case of me/cfs if she is able to do water aerobics 2x/week....that would put me in cardiac arrest.
Hope123
Senior Member
- Messages
- 1,266
Except I wish he *was* Dr. Welby, who I heard was a good TV doc- caring, hardworking, and always able to solve the case in the end!
yes, i agree with that....but my point was more the time warp angle...gill may have actually been a good cfs doc in 80's; when he at least recognized people were really sick but his mode of treatment and explanations of the disease are soooooooooooo outdated in 2011.....and he really pushes the exercise makes you better aspect.....maybe that is true for mild cases but for someone like me w/cardiac issues due to the disease, exercise is a death sentence......standing often feels dangerous.
i actually was embarrassed for him when directly compared to the intellect of alter and lo.....different caliber of science/medicine right there before our very eyes.
and i loved alters stmt (parahrased) the cause depends on how hard you look for the answer......so wise and so so so true....for this disease and so many important things in life.