Discussion in 'General ME/CFS News' started by Lesley, Mar 7, 2010.
Just posted by Jerry on co-cure:
I remember seeing this when it first aired.
The release of Osler's Web and the resulting publicity is what got me started in ME/CFS advocacy.
Wow wow wow! Thanks for posting this! I'm having deja vu all over again.
It's really interesting to see and hear all of the players. And scary and sad how little things have changed.
I live in the UK and this is all new to me... we never heard the US ME story in the UK, as far as I'm aware...
I only remember hearing about city workers getting 'Yuppie Flu' in the eighties, when I was a teenager.
This video nicely brings all these well known names together who I've heard so much over the past couple of years.
It's nice to have a sense of the history of ME in the US.
I'd picked up little bits of the story over the past couple of years, and this video nicely fits it all together...
now i understand exactly what went on in the US!
Here's a direct link to the video in case it's helpful:
I'm amazed that DeFreitas even had a photograph of her retro-virus... I'd like to find out the rest of the history of DeFreitas' virus... does anyone know a link to an outline of the story?
CDC admits CFS caused by retrovirus
Note the bit in the video where the CDC guy admits that CFS is caused by either a retrovirus or a virus! They knew back then that this was almost certainly a viral infection, with strong hallmarks of being a retroviral infection.
maybe the CDC caused the disease to burst in a lab somewhere. AMAZING VIDEO, thanks!
Phil Lee, who admits a retrovirus or virus could be at the heart of ME/CFS, was only stating that because of the DeFreitas research. He was Assistant Secretary of Health at the time of this interview, in charge of the entire US Public Health Service, which includes the NIH, CDC, and many other agencies.
He was also one of the few (if not the only) high-level federal official who believed what advocates were saying. Unfortunately, he was somewhat removed from what Straus and Reeves were doing.
Lee was formerly in a public health position in San Francisco and thus was keenly aware of the background of AIDS.
The best source for the history of ME/CFS in the US is the book Osler's Web, IMHO.
However, the DeFreitas research was discussed on this forum at length. You can find the thread here:
Thanks for the info on Phil Lee's background.
You are wrong about the quote though. He clearly says at 11:42 : "I would say it would be a retrovirus or a virus, I would think so." But he only makes that admission when pushed by the reporter. He uses the phrase "would be" (he believes it) rather than the word "could" (it is merely a possibility).
Thanks for the correction, Garcia. I couldn't handle watching the video again due to light sensitivity, headache, etc.
I guess my point was that Lee was giving his own personal opinion rather than speaking on behalf of the US government when he made that statement.
Bob, thanks for the direct link to the vid.
I listened to this twice. First time I was interested in the CDc part. Second time, I noticed the science part. I caught this comment by by the reporter about the DeFreitas virus, "can lay dormant for years."
Hmmmm. That sounds familiar. I am not saying XMRV is same virus. But could it be that there are many viruses that pop out and then pop back in and hide so that they are real hard to find.
Again, if I was a retrovirologist, I would be very excited. Maybe this will change some paradigms about human retroviruses.
Is anyone looking again into the DeFreitas virus?
I don't think anyone is looking into CAV which was de Freitas's retrovirus. We're all supposed to agree that XMRV is not CAV and then completely forget CAV was ever found. At least that's the message I've been getting.
If you ask me CAV is either XMRV or there are 2 retroviruses in CFS.
Osler's Web makes the point well that retrovirus is theoretically a very good candidate for causation because retroviruses cause diseases and symptoms that look like ME and its symptoms and would account for the cause being hard to find. Retroviruses are very good at hiding out in the tissues especially the brain, where the immune system can't get it. Since it integrates itself into cellular DNA, it doesn't have to be floating around alot extracellularly in the blood to do its damage. Viruses in general are good at hiding out and going dormant waiting for the immune system to be low so it can come back out a wreak havoc.
Because retroviruses integrate themselves into the patient's DNA, they cause disease that is chronic (and/or fatal).
They cause immune system disease: AIDS, t cell lymphoma and leukemia.
ME is a neuro-immune disease.
They cause neurological disease: AIDS, TSP/HAM.
All ME/CFIDS associated retroviruses must be researched!
below I've added my post from the other thread for context:
Noone has looked for CAV since CDC tried to destroy DeFreitas' reputation in the early 1990's. I have always thought this was the biggest shame of all in ME/CFIDS. I want people to look again at all the retroviruses and retrovirus-hybrids I listed above. I think this should be the number one priority of research, but noone wants to do it because of the beating anyone takes who tries to do research into retroviruses in ME. This is almost certainly because retroviruses are probably the cause and if this was proven then Reeves, Wessely et al. would go directly to jail, do not pass go. So they have to do everything they can to destroy anyone who looks into retroviruses.
They should all be looked at because it's possible that more than one is responsible.
Teejay and Tina:
Here's another post by me from the other thread for more context:
Thanks for replying. I know why De Freitas's research was killed off and by whom but I don't understand why no one else has been able to find it when we have 3 labs that have found a retrovirus in us. Those labs aren't interested in covering for Reeves.
I'm really struck, once again, by the people who have gone to bat for us and with us over the years. This is not a career enhancing activity no matter your field and yet we have had champions who simply would not give up on this and us.
Some have fallen, Elaine Defreitas being, perhaps, the most tragic example, and some have taken some pretty big knocks but carried on. We have never been alone but, until about the time this program aired, it certainly seemed as though we were as we each lived the same bizarre story in isolation. The internet ended all of that and is now even helping to push the science forward. How remarkable that is.
It must have been as hard to be a champion for us in the days when one felt so alone as it was to be a patient. Facing the ridicule of one's colleagues is not why one goes into any field, certainly not medicine.
And, Hillary Johnson. Where would we be without her amazing reporting, her remarkable book and her tireless efforts? Not here, I'd wager.
For every villain in this story there is a hero(in). Amazing.
I truly never thought I'd live to see the day. I guess I must be one of the lucky ones.
Lobbying Congress Directly and thru the Media is by far our Best Shot at Progress
When you say "those labs aren't interested in covering for Reeves", which labs do you mean?
In general, it is hard for me to understand why we have not had more progress on this front, but certainly alot of it has to do with:
(1) the difficulty and expense of doing retrovirology.
It's hard to physically find retrovirus for the reasons I listed above- they are good at hiding out in the brain and inside our own cells' DNA. In Osler's Web DeFreitas stressed that her protocol had to be followed exactly and CDC did it over and over again the wrong way and finally stopped. CDC was using the wrong enzymes, using frozen blood and dialing up the specificity too much all of which DeFreitas was all over them about. Chiron Pharmaceuticals initially couldn't find it but then DeFreitas helped them in their lab and then they started finding it, but then NIH's Stephen Straus basically told Chiron "it's all B.S., these are hysterical women" and Chiron decided to cut bait. And RVs may be hard to find for other reasons of which I am not aware.
(2) "The Chilling Effect."
NIH was funding noone for years. The best virologists etc were submitting grant proposals over and over again and getting dissed. Then CDC and NIH destroyed DeFreitas. Straus and CDC had the propoganda machine on full tilt broadcasting: "these are crazy women wasting our time. Anyone who studies this is a fool because they will get no funding and even if they did they won't find anything." They attached a huge social stigma both in the general population and among doctors and scientists.
These are very strong reasons, but it also just seems like we had a lot of bad luck- DeFreitas getting sick, Koprowski getting booted from Wistar, CFIDS Assn of America messing the whole thing up as they often do (which is a whole other topic) and, i'm sure, other things i'm missing.
But I do know that if real resources were devoted to the search in biomedicine, esp. virology, we probably would have found at least the major causes and have effective treatment like in HIV. We patients funding nickel and dime research out of our own pockets will get us answers in 20 years which is unacceptable. We need to put our main effort behind lobbying Congress to raise funding from $3M per year at NIH up to an appropriate $300M per year, plus add on for all the years our funds were denied and misappropriated. This is why I think it's silly to send CAA money or anyone else money just to do research- our money is very limited, so it needs to be LEVERAGED by spending it to LOBBY CONGRESS both DIRECTLY AND THROUGH THE MEDIA. I really don't understand why more people don't feel this is the #1 priority.
And it's really too bad, because I don't trust CAA's lobbying efforts- they seem more interested in turning out misinformation and paying Kim McCleary a huge salary, than devoting money and effort to effective lobbying. Look where we are now- medically, politically and socially. It is mostly the fault of CDC, NIH, UK NHS, the media and the medical profession. But if CAA were doing it's job, we would not be in as dire a situation as we are now, still, after 25 years!
And I don't know of any other organization truly committed to effective lobbying of Congress, directly and thru the media in the USA. Perhaps PANDORA. Anyone have any ideas or feedback?
What a great post! I just want to comment on lobbying Congress not having been the top priority. Perhaps what has happened with the small efforts and all the precious nickels is that we have unearthed a critical mass of evidence at just the right time and your Congress will now be able to listen. Could it be that before now, or before 6 months from now, we were too easy to dismiss and so we were?
Anyway, thanks for the great post!
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