Dr. Bell Boston lecture 4.16.2011: Assessment of NIH State of Knowledge conference

[Rrrr]

this notice on the MassCFIDS website says that Dr. Bell was at the NIH conference and will be giving his assessment of it at his April 16th lecture in boston. video of the Bell talk will be available later. -- Rrrr
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http://www.masscfids.org/news-a-events/288

Dr. David Bell, April 16 2011

Dr. David Bell, noted CFIDS/CFS researcher and pediatrician, will present Current status of XMRV Research and Comments on the NIH April State of Knowledge Conference" on Saturday, April 16, 2011. Dr. Bell will have just returned from the State of Knowledge Conference, a 2-day event bringing together researchers, clinicians, government officials and patient advocates.

Register now!
(You can also register family members and friends)

Note: Please pre-register for this event. The building is secured, and entry will be easier if your name is on the list. Please bring a government-issued photo ID with you.

Download/print the flyer - color version

Download/print the flyer - black & white version

This lecture is co-sponsored by the Massachusetts CFIDS/ME & FM Association and the Massachusetts Department of Public Health at the Hinton State Laboratory Institute. It will be held at their facility, 305 South Street, Jamaica Plain/ Boston, Massachusetts 02130. Registration will begin at 1 p.m. There is plenty of free parking and the auditorium comfortably holds a large group, so please pass the word.

If you would like to receive notification about this conference via email, please sign up for our Newsletter email list if you have not already done so.

Get directions to the Hinton State Laboratory Institute. Free parking is available on Saturdays. The location is also accessible by public transportation. The building is handicapped-accessible.

There is a ten dollar voluntary donation for non-members. Become a member online now, or join at the lecture.

A video of the lecture will be posted later on the website. Newsletter subscribers will be notified when the video is available. We also plan to do a written summary of the lecture.

 

[pamb]

Great find. Thanks.

This will be very interesting for sure, with the breadth and depth of Dr. Bell's background. Great news there will be a video posted, but of course I'm hoping someone on PR can attend.

 

[*GG*]

I plan on attending, as I am sure more people from the Boston CFIDS group will also.

GG

PS If anyone needs a ride, let me know.

 

[shannah]

Did anyone attend this and can give us a synopsis.

 

[Boule de feu]

I would like to know, too.

 

[August59]

I sure hope someone has something on this soon?!?!

 

[Sing]

www.masscfids.org says, "A video of the lecture will be posted later on the website. Newsletter subscribers will be notified when the video is available. We also plan to do a written summary of the lecture."

I can't wait. Any hints yet from attendees?

 

[andreamarie]

I was in a flare but (stupidly) went. Dr. Bell didn't talk about the NIH proceedings but about his study of Lyndonville patients thirteen yrs later. I was really disappointed. If I'd felt O.K. I wouldn't have cared but I'd read the study. I didn't take detailed notes; I felt too awful.

 

[JT1024]

I did attend as did Rrrr and a few others.

Dr. Bell changed the topic of discussion to "Rising Incapacity" instead of the expected NIH SOK and XMRV Research status. He was very brief regarding why he changed it and I really am not sure why.

However, he did say the scientists will figure it out and that they busy working quietly behind the scenes. He mentioned that giving out bits and pieces of information has not been helpful. I think he must have been referring to the scientists giving out bits and pieces.

He did say study done at Cornell by Maureen Hanson (that included his patients) performed testing for contamination and found none. The study has not been published yet to my knowledge. Apparently many researchers are testing for contamination by looking for mouse mitochondria DNA.

I have several pages of notes but I'm hoping the Massachusetts ME/CFS/FM Association will post their video.

I suspect most who attended are recovering today. I know I am.

 

[richvank]

I did attend as did Rrrr and a few others.

Dr. Bell changed the topic of discussion to "Rising Incapacity" instead of the expected NIH SOK and XMRV Research status. He was very brief regarding why he changed it and I really am not sure why.

However, he did say the scientists will figure it out and that they busy working quietly behind the scenes. He mentioned that giving out bits and pieces of information has not been helpful. I think he must have been referring to the scientists giving out bits and pieces.

He did say study done at Cornell by Maureen Hanson (that included his patients) performed testing for contamination and found none. The study has not been published yet to my knowledge. Apparently many researchers are testing for contamination by looking for mouse mitochondria DNA.

I have several pages of notes but I'm hoping the Massachusetts ME/CFS/FM Association will post their video.

I suspect most who attended are recovering today. I Hiknow I am.

Hi, JT1024.

The reason Dr. Bell changed the topic may have been that he did not make it to the NIH SOK. I didn't see him there. I did meet Maureen Hanson there, though.

Rich

 

[andreamarie]

I'm a member of MassCfids. Unless something goes wrong with equipment (unforseen problem) they are very good about videos, etc. I am a newletter subscriber.

 

[Rrrr]

hi all,

sorry for the delay in reporting about this talk. i have been bedridden since i got back from it.

it was really really really disappointing, but our lovely, beloved dr bell switched topics on us, much to the surprise of everyone in the audience, including the event organizers. i drove hours there and back and if i had known he was not going to talk about xmrv and the nih meeting, and was going to instead talk about outdated stuff, i would never have gone. like i said, i'm bedridden since the talk, and it was so not worth it. ugh.

it was really weird, to say the least. he was purposefully evading the advertised topic of xmrv and the NIH meeting, and instead filling the time with info that was old news and, in truth, boring. my boyfriend said he could have given a more up to date lecture on xmrv and the NIH meeting, and that is just from listening to me talk about it all.

during his talk, bell went on and on with stories that did not seem meaningful to the situation we now find ourselves in. and he did not say why he was not going to talk about xmrv, but he was clearing avoiding it like the plague (pun intended).

if i wanted to start a wild and crazy rumor, i'd say that something came out of the nih meeting that caused him to think he should shut up and not talk about xmrv in a public setting that was being videotaped. was it fear that if he spoke the truth, then his and hanson's nih xmrv funding would get cut off?

so the talk itself was boring (in my opinion, in my boyfriend's opinion, and in many others opinion) and not related to xmrv or anything of any value to our needs at this time. then there was a break. then the Q & A.

a few of the questions asked focused on xmrv, and some questioners implied that there were politics going on, and that is why we are hearing so much about the contamination theory. bell did not really address that.

finally, at the very very end, he did address contamination. he was asked about it again and said that originally he had decided he was not going to talk about it, but okay, he will. in short, he said that hanson checked and can't find contamination. he seemed very definitive about that. so my thinking is that he does not believe any of the contamination talk, at all.

also, i think he said (earlier) that hanson was trying to sequence xmrv. did anyone else hear that?

there was also a question about transmission: what did he tell his xmrv+ patients about kissing, intercourse, etc. he said he thought that xmrv is likely contagious in the first 6 months, [UPDATE: HE SAID 6 WEEKS, NOT MONTHS!] and that is when it shows up in the blood (as we heard from the monkey study). but that after that, it seems hard to find in the blood, and it may be that it is not so contagious then.

he said we should kiss, have sex.

if i got any of this wrong, please someone correct me.

best,
rrrr

 

[eric_s]

This really is very strange. One day all of this will make sense, i hope...

Even if it's Dr. Bell i don't think it's right to let people go through this and then not give them what was promised. I hope at least you didn't have to pay for it. If he can't talk he should have cancelled the event or at least told people in advance that there was a change.

 

[ixchelkali]

Thanks, Rrrr. That is odd. If I were to guess, it would be that there's been a general tightening of the "don't talk about your research until it's published" rules, and maybe Dr Bell has something in the pipeline that he doesn't want to mess up. Because it certainly sounds out of character for him.

I hope your PEM doesn't last long.

 

[August59]

Thanks, Rrrr. That is odd. If I were to guess, it would be that there's been a general tightening of the "don't talk about your research until it's published" rules, and maybe Dr Bell has something in the pipeline that he doesn't want to mess up. Because it certainly sounds out of character for him.

I hope your PEM doesn't last long.

There definitely seems to be a change in the atmosphere, but there is no excuse for Dr. Bell not informing anyone of his decision to change the topic of discussion. Very unprofessional and disrespect towards the attendees and event organizers. I would like to believe there is more to it than what has been explained so far, but I'm sure it would have been mentioned. I just don't know!

 

[*GG*]

Thanks, Rrrr. That is odd. If I were to guess, it would be that there's been a general tightening of the "don't talk about your research until it's published" rules, and maybe Dr Bell has something in the pipeline that he doesn't want to mess up. Because it certainly sounds out of character for him.

I hope your PEM doesn't last long.

Just a correction Rrr posting, he mentioned 6 weeks not 6 months. But other than that, it was rather uneventful.

GG

PS I spoke to him pretty much one on one, because I was part of his NIH study in Ithaca, NY, even though I was not in the original outbreak. I wish I had known others from this forum were going to be there, would have like to have met you also! There were a few people there from my Boston CFIDS group. FYI

 

[insearchof]

Does anyone find it a bit odd, his advice on infectivity?

I don't really think there is sufficient evidence on transmission and infectivity. Based on the monkey study, they observed that it does go quickly to tissues and glands. Therefore, it stands to reason that infectivity from sexual activity could last well beyond six weeks.

Also, if it could only be found in the blood of patients within six weeks of infectivity then:

* is it pure coincidence that those tested, but have been sick for years, happened to somehow become infected with this new retrovirus in a 6 week window of testing... what would the odds be on that I wonder?

If so, it would also make it a pure coincidence that MLV found by Lo Alter et al from blood samples that were 15 yrs old, identified in only 8 individuals ( if my memory serves me) must have all got exposed 15 yrs ago within a six week window. That's pretty amazing odds in such a small group, isn't it?

However if I recall, when they redrew fresh blood from these 8 subjects they also tested positive. That would suggest that the virus is not only in the blood for 6 weeks wouldnt it? It is also consistent with what is known of other retroviruses like HIV, that go to tissues and develop latent reseviours, that are capable of viremia dumps and therefore subsequent circulation in the blood.

In view of that, I would say that risk of infectivity remains but is increased, at times of notable symptom increase or crashes.

 

[August59]

Was it Dr. Bell's samples that Lo/Alter tested from 15 years ago? I quess these samples could have been drawn within the first 6 weeks of infection, but I doubt it. Yes, it does seem odd, very odd!

 

[Rrrr]

Just a correction Rrr posting, he mentioned 6 weeks not 6 months. But other than that, it was rather uneventful.

GG

PS I spoke to him pretty much one on one, because I was part of his NIH study in Ithaca, NY, even though I was not in the original outbreak. I wish I had known others from this forum were going to be there, would have like to have met you also! There were a few people there from my Boston CFIDS group. FYI

THANK YOU for the correction!

 

[Rrrr]

Was it Dr. Bell's samples that Lo/Alter tested from 15 years ago? I quess these samples could have been drawn within the first 6 weeks of infection, but I doubt it. Yes, it does seem odd, very odd!

no, they were not bell's samples. they were komaroff's samples.