Dr Bell XMRV lecture Jan 15th (Santa Ana)

[gracenote]

I will have a go at transcribing the first part later and see how far I get. Can't do the whole thing - too much. Will post up later what I've managed to do.

Thank you so much fds66. It looks really good. Maybe someone else would like to take over for you? Any volunteers?

 

[Dolphin]

Thanks fds66. :Retro smile:

 

[fds66]

Thanks Tomk

 

[fds66]

Doing a bit more now. Will let you know how far I get.

 

[fds66]

OK, brain totally scrambled now - thank goodness for autocorrection in word. No more today.


Lecture by David Bell 8:21 to 14.22

The psychiatric issue thats been going on for years is characterised in this slide. As I understand it the web will not be able to see the slides and I guess I will be able to get away with it. I showed this slide at a lecture I gave in 1987 at the University of Rochester School of Psychiatry. University of Rochester has a world famous school of psychiatry and the auditorium was filled with interns and residents. I showed this slide and silence, just silence. (laughter) Its been a misperception that somehow this illness must be a psychiatric illness and heres where modern medicine has made a big mistake. Doctors are under the government. If you go into the doctor and the doctor has no idea of whats going on with you hes got to come up with a diagnosis, whereas in the old days that wasnt true. The doctor could just say I dont know what you got but now they cant do that for some reason I cant quite understand why and theyll say I cant find anything wrong. Your livers normal size, your blood tests are fine therefore you must be depressed. And this is really quite unfortunate because psychiatric diagnoses have very strict criteria. If you are depressed you usually know that you are depressed. Depression has severe hopelessness, it has all these symptoms that are not part of Chronic Fatigue Syndrome. So for years theres been this ongoing controversy is this illness due to a psychiatric basis and doctors have been kind of mystified and they say I dont know what you have but I dont want to deal with you so I want you to go and see the psychiatrist. And this has very unfortunate consequences for patients. Because this is whats happening in the psychiatrists office (laughter at a slide we cant see) and really when you try to look at the specific , again at the University of Rochester they didnt like this slide (laughter) They were very negative about this slide . I was trying to say, you know this was just a joke (more laughter). But psychiatrists really would have a difficult time explaining the theory of how some viral infection causes some inactivity and then that inactivity gets into a cycle that leads to orthostatic intolerance and these other things because there is no model that really explains it in the psychiatric literature.

Now thats not to say that psychiatric disease cannot coexist with Chronic Fatigue Syndrome and this is a very important point. For those people who have Chronic Fatigue Syndrome and who are depressed well youve got to address that. And its actually fairly easy to address. The antidepressants work very nicely on the depression when it coexists with Chronic Fatigue Syndrome but it really doesnt help the symptoms of Chronic Fatigue Syndrome once youre well. Many people are reluctant to admit their depression because they then will say, well maybe the psychiatrists were right, and thats a mistake. If there is depression going on then youve got to address it and this is no different than if you had multiple sclerosis or HIV disease or any other organic illness. If you get depressed because of the severity of the illness youve got to address that and that becomes fairly easy to treat as part of the illness. But it doesnt remove the basic symptoms of Chronic Fatigue Syndrome.

OK, tonight were going to be talking about XMRV and this was some of the interesting or exciting new information thats come out. The definitions here, XMRV stands for Xenotropic Murine Retro Virus, more accurately its Xenotropic Murine Leukemia Related Virus and this is a fairly large family of retroviruses that XMRV is part of. A retrovirus is a specific type of virus which is an RNA virus, very small compared to other viruses and its able to insert itself into the human chromosome and from there it replicates itself and causes damage. Xenotropic the word means that its able to jump species. Many years ago back in the 1990s this was thought to just never occur among retroviruses and one of the big arguments in HIV history is could this have come from the simian immunodefficiency virus, the SIV. Did it actually jump species and become a human pathogen? Xenotropic means yes, it definitely does, so this virus was first described probably many years ago in the retrovirology in different animals and thats where doctors have been able to study this for many years and its only recently become clear that this is a human pathogen.

 

[gracenote]

Any volunteers?

OK, brain totally scrambled now - thank goodness for autocorrection in word. No more today.

Lecture by David Bell 8:21 to 14.22

Thank you so very much fds66. Very much appreciated.

Dr. Bell's lecture is well worth listening to and would be a great resource to have the complete transcript.

The lecture is an hour long. We could split the rest into three parts.

Would anyone like to sign up for 15 minute sections? (I would love to, but my arm gets very inflamed doing that much continuous typing.) Any takers?

14:22 30:00
30:00 45:00
45:00 60:00
-------------------

ETA:

IT'S ALL DONE!!!

the free prisoner has transcribed the entire lecture. It can be found in General ME/CFS News.

http://forums.aboutmecfs.org/showthread.php?2710-Dr-Bell-s-January-2010-lecture-transcribed-in-full%21&p=40902#post40902

Thank you Rachel!!! ​

 

[Dolphin]

Thank you so very much fds66. Very much appreciated.

Dr. Bell's lecture is well worth listening to

ETA:

IT'S ALL DONE!!!

the free prisoner has transcribed the entire lecture. It can be found in General ME/CFS News.

http://forums.aboutmecfs.org/showthread.php?2710-Dr-Bell-s-January-2010-lecture-transcribed-in-full%21&p=40902#post40902

Thank you Rachel!!! ​

It's great that it is done. But did thefreeprisoner use the bit that was done or start if from scratch. If it was the latter, it is a pity in the way as I know people's energy is precious. Anyway, thanks to you both. I have severe/very severe ME so don't really have the mental energy for videos but can read at my own pace.

 

[Advocate]

Dr. Bell says Finland has best CFS criteria. More info?

I've printed out Dr. Bell's lecture, which was transcribed by fds66 and thefreeprisoner.

Here's a paragraph that puzzles me:

Now for the past 25 years we've been arguing like mad over the definitions of this illness. So there are 3 different criteria that you can use. Actually there are about 15 different criteria. My favourite is the one for the [Takinoue?] flu which nobody else seems to be interested in, but I got to visit Takinoue in Finland and I think that their criteria there are much better than anybody else's. But the CDC has their criteria, the Canadian Consensus criteria and then the Myalgic Encephalomyelitis Ramsey criteria, so people have been arguing about this.

 

[Advocate]

Tapanui Flu

I think Dr. Bell was talking about Tapanui Flu, which is the name that is sometimes used in New Zealand for CFS. Now I'll try to find the criteria.

 

[ukxmrv]

I'd also like to see the criteria Advocate.

Tapanui Flu was for an outbreak of ME in rural NZ before CFS was invented. They had Dr Ryll and other people visit. I did once find a Wellington hospital reference to one on a NZ Health Department website and emailed them to ask for a copy. Sadly, they emailed back to say that they couldn't find it.

Would be interesting to see if it resembled what went on to be called CFS.

Could you please post a copy here if you find one?

 

[Advocate]

I'd also like to see the criteria Advocate.

Tapanui Flu was for an outbreak of ME in rural NZ before CFS was invented. They had Dr Ryll and other people visit. I did once find a Wellington hospital reference to one on a NZ Health Department website and emailed them to ask for a copy. Sadly, they emailed back to say that they couldn't find it.

Would be interesting to see if it resembled what went on to be called CFS.

Could you please post a copy here if you find one?

Yes, if I can find it, I'll post here. That might be a good question to ask of him, for his next newsletter.

 

[Cort]

Dr. Bell's lecture in good video

http://vimeo.com/9143012

http://vimeo.com/9254598
http://vimeo.com/9261929

 

[gracenote]

Dr. Bell's lecture in good video

http://vimeo.com/9261929

I just listened to Dr. Bell's question and answer segment above. It's very interesting. Has anyone transcribed it?

 

[thefreeprisoner]

I've just finished transcribing the Q & A.

It's here: Dr David Bell 15th January 2010 XMRV Lecture Q&A

Enjoy!

Rachel xx

 

[gracenote]

I've just finished transcribing the Q & A.

It's here: Dr David Bell 15th January 2010 XMRV Lecture Q&A

Enjoy!

Rachel xx

Thank you, thank you, thank you, Rachel.

​