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Osler's Web - Read it or RE-Read it! History REPEATING Itself, Sadly

flybro

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From post 29 by Dorothy http://forums.aboutmecfs.org/showthr...FS-Study/page3


Complete DeFreitas patent application available online

The Elaine Defreitas complete patent application is available online (.pdf document, 91 pages) at


http://www.freepatentsonline.com/EP0546126.pdf


It's not clear to me whether this patent was ever granted; the "publication date" seems to refer only to publishing the application. I did a search at the World Intellectual property organization (www.wipo.int) and found the Defreitas application listed there:


http://www.wipo.int/pctdb/en/fetch.j...fWO9205760%29+


If this long link doesn't work, just go to

http://www.wipo.int/portal/index.html.en

and click on "patent search" and type in WO9205760 (the second character is a capital "O", not a "zero") next to "publication number", then click on the title that comes up. You'll find documentation under various tab headings. One interesting point is that under "national phase", it says that the patent (or perhaps just the patent application) was withdrawn in 1997. This may only refer to the US patent office (a check of that site shows no patents granted under this subject).


Even if a patent was never granted, the 91-page application documentation is a treasure trove of valuable information. I, too, wonder what happened to Elaine Defreitas and hope she'll be vindicated by the WPI's further research! I hated the way the CDC trashed her work. If I recall, in Osler's Web, Hillary Johnson stated that the CDC at one point seemed to confirm her work (and briefly became alarmed at the ramifications of a new, communicable retrovirus), but later only published their negative findings. (I don't remember for sure, but I think Walter Gunn was the main source of information on the CDC antics). Does anyone know what became of him? I hope he had a happy retirement. Anyway, I have no hopes that the CDC will even properly try to replicate the WPI findings, at least not with Reeves in charge; he'll never admit he's been on the wrong track.​
Amazing!
 

dannybex

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Go back and read how the DeFreitas Retrovirus WAS indeed found and replicated WHEN the protocol SHE established was followed. The CDC did NOT follow it and of course, found nothing - as was expected. But the book goes on to hit other findings that were replicated and there were a number of researchers who did believe that there was something, some sort of virus - be it a Retrovirus or HHV6 or a Foamy Cell virus, etc. But they did note and replicate and SEE that there was indeed something in the blood of the CFIDS sick.

DeFreitas was set up for failure from the start. SHE was pushed into going public when she was not ready. And I hope that WPI did not get pushed by CAA into going out with XMRV too soon as well. It IS history repeating itself; However, as Cort and others have noted, THIS TIME, we have the Internet and other labs working on this. There is also the cancer connection and that is BIG MONEY and BIG interest. So, let's hope the rest of this oddessy takes a different route than the first Retrovirus did. God bless Dr. Defreitas, whereever she is now.
I don't know if you've seen it, but Cort published a great article on the Defreitas discovery this past Friday. It doesn't seem to match exactly with what you've described above. It seems like both the CDC and Defreitas didn't cooperate very well with each other:

"With two test failures behind him, Dr. Folks invited Dr. DeFreitas to observe his lab procedures firsthand - an invitation that she almost inexplicably, given the stakes involved, turned down. Instead she invited the CDC to come to her lab, which they in turn declined, citing a lack of travel money."

More here...

http://forums.aboutmecfs.org/conten...trovirus-in-Chronic-Fatigue-Syndrome-(ME-CFS)
 

dannybex

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I still am perplexed at why no one is still looking for the Virus Defreitas found in her studies. It seems there was a replication by Folks at one point and another in Houston by a lab there. Then after that replication was not found.Bbut how many people followed her protocol? No one that I'm aware of.

So to me there is no clear answer of what she found. The truth has been in limbo for 20 years. I wish WPI or some researcher would follow her protocol exactly and see what they find.
I'm perplexed too.

Someone posted SOMEWHERE on some thread (sorry, the new 'search' function doesn't find individual posts anymore) that the WPI, or researchers close to the WPI, etc., have at least said that XMRV is not the retrovirus that Defreitas found.

So, if the Defreitas finding was so important, especially according to Hillary Johnson, then why isn't it still important today?

Are there two retroviruses involved in CFS/ME (or whatever label/name we are using)?
 

muffin

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Actually, I think this virus(es) go back past World War II and not to the 1980's. Look at the outbreaks that preceeded Incline Village. This virus/pathogen may well have been a weapon developed by the US/UK governments to use against enemies. Not far fetched is it?
 

muffin

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OK, here we go again with the conspiracy, theory, proof, etc.

Dipic: You hit it. There is no real evidence for my statement. It is a more of a Thesis Statement that I and others must then seek proof and answer. There IS NO evidence, no paper trail that I know of, no other people that I know of either that will sit there and say that they too believe this pathogen that we all MAY have started out as a weapon going back past the 1980's and into the WWII period (not yet, people get brave after one person says something that they have been thinking/musing). I MADE this conclusion up given what I see and hear.

Actually, it is more a gut feeling. When I said this to my husband even HE said I was taking it too far for the simple reason that the government workers could NOT keep something like this a secret for so long as they would open their mouths or be basic incompetents. He worked at senior levels of DoD for 30 years and saw the foolishness. However, we do know that our government HAS kept big secrets from its people for decades. Remember our other post on the other government science projects that were kept under wraps for long periods? IF you kept the numbers of people very limited to a dirty deed and threatened the rest with all sort of national security secrecy type documents, you could get away with stuff like this.

Again, I am not an X-Files fan. I am open about Aliens and Area 51 but I'm really not one to point my finger at government conspiracies - again because those in our government are regular people and regular idiots with mouths which they would use. But if you think about it, look at the information out there, wonder WHY a little 40 page document from the UK is locked down for 83 years, and so on, you start to conclude that our idiot government is somehow involved.

So, NO PROOF. Just me starting to think out loud that this is a national security issue and MAY involve the US/UK building bio-weapons to knock out enemies. It really would take nothing much more than a bug that causes diarrhea (Dysentery) to take an army down, so who knows what all the US/UK governments were fooling around with and created - and released.

Really. I am so boringly sane and sensible that for ME to come up with stuff like this means that others have already come up with this but kept their mouths shut because they didn't want to look like a nutjob. However, I don't care if I look like one since what more do I have to lose? If I don't throw things out there for others to think about, look into, etc. how much progress will we make on finding out what did in fact "hit us"? And then working backwards from what they may have developed to finding a cure might be easier than hitting all the other suspects out there. Working backwards is a point of departure that cuts down on time.

There always must be a small group of people that are way out there - the screaming fringe - that cooks things up and pushes the more staid and calm to move out. Look at AIDS or acceptance of homosexuality - if you don't have the small fringe group pushing, yelling then there isn't an engine of sorts to push the rest of the group.

So, bottom line: NO PROOF for my statement. I threw this out there and I and others can go looking for more information and proof (if possible). You have to start from somewhere and then see if you can prove or disprove - and so I have started.

I know you don't like this manner of approach, and I understand as I was trained to be a true analyst during 4 years of grad school (2 grad degrees plus, if you can believe that one now with my rambling brain and poor writing). I don't think out of the box, I am not creative or imaginative - I WAS an analyst that took real data and made conclusions. But that doesn't work here in our real world. So, I have started - let the really smart people take this, think about it, and RUN with it. Who knows?

You are so darn bright that you keep me on my toes...Good man.
:Retro smile:
 

muffin

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DIPIC: Read this linked blog - interessting I think...

http://www.theotherjournal.com/blog.php?id=227
January 18, 2010
Tempting Science Fallacies 2: Winging Itby Larry Gilman.

Last week I looked at one form of the obviousness trap, namely, the notion that you can only do real science on stuff you can see happeningSEE HIS BLOG FOR MORE.
 
C

Cloud

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Muffin, indeed how would we ever get anywhere if we didn't discuss "unproven possibilities". I feel that new ideas and creativity are synonymous with "Life". I get really bored with the already "proven facts". The proven facts are very important for many reasons, but the same is true of imagination and exploration. I doubt there is a need to quote Albert on that one. For me, discussing possibilities and theories is creative and fun. Besides, I get a kick out of conspiracy theories. Of course depending on the venue, we may need to qualify whether our input is proven fact or just personal speculation.

My speculation.....I am far from being a conspiracy theorist, but the main thing about the story of ME/CFS that suggests to me the possibility of a government cover-up, is the magnitude of their refusal to acknowledge the seriousness of this disease. And I say "Refusal to acknowledge" because when millions upon millions of people report the same debilitating disease like this, even a chimpanzee could see that it's truly a serious situation requiring immediate (if not emergent) intervention. Yet, they want us to believe the biggest bunch of BS about why they are not treating this as a priority. When a person, institution, government, or whatever, attempts to insult my intelligence on that level, I smell lies and cover-ups. The worlds response (and lack of) to ME/CFS is extremely out of context with the seriousness of the disease and, all the excuses given for their lack of action just don't add up. Based on that observation alone, it does look fishy....very fishy. Another issue for me that adds to the cover-up theory is looking at the particular nations that appear to have a high prevalence of ME/CFS and what they have in common.
So, my view on a government cover-up is that I wouldn't be surprised, but I'm still holding out on fully believing it for a few reasons. I guess the main one is that my mind just has a hard time accepting that humans can be so evil. Also, as far as the xmrv pre WW2 idea, I doubt (not sure) we had the ability to genetically engineer and weaponize retro-virus's that long ago.
 

flybro

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Perhaps when we become so marginalised by society that we look for an explanation as to why we are ignored.

Add to this tests and treatments proven alse where to be useful and beneficial are being with held. Science that points to answers is often ridiculed or just ignored by people in a position to influence better outcomes for PWME.

Add to this the hidden papers and the length of time that they are embargoed for, the concerns over vaccinations and autism, the lack of statistical data being collected and collated, that ME/CFS/FM are rarely implicated on Death cirtificates.

PWME becoming to afraid to seek medical help, as it may be deemed better for the PWME to be in a mental institution to sort out there 'illness believes'.

It is very hard not to think that some sort of cover-up is taking place. It feels so inhumane that this reality persists for so many, for so long, its hard to beleive its an accident, or just misguided helpers.

We should ask Cort if we can have a forum strictly for our unproven conspiracies. Or we could start a group, go on, one of you be brave enough to start a group and I'll join.
 

muffin

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Ross: Of course I agree with everything you said. Every time I look at the whole long picture I can NOT conclude anything other than the fact that the US and UK governments are covering SOMETHING UP. You stated all the reasons for why I would conclude this. They, Reeves, Wessely and others, have done everything to make us look like nuts and so many of us fear rocking the boat and being called a lazy, mut. We ALREADY HAVE been tagged as nuts - it can't get worse here in the US, can it? What next? Put US in the UK-like psych wards next?

You have to start from something- some point that makes some sense and then move on to see if it works or doesn't. So I do see a cover- uo and not just gross incompetence but something far more serious.

Too tired to think. But thanks for agreeing that you have to start with something, not proven, and then move on from there.
 
C

Cloud

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"Add to this the hidden papers and the length of time that they are embargoed for"

It seems to me there would be a way to have those documents opened? Court order? Wonder what Hillary is up to?
 

muffin

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Ross: Good question - Wonder what Hillary is up to? She has taken leave from her website/blog and I am very curious what that brilliant wonderful woman is doing now. Guess we will have to wait and see what she comes out with.
I do wish she and some of the other heavy-hitters in the CFIDS journalism area would take on the issue of a cover-up and go looking. Ongoing gross incompetence just doesn't cut it for three decades, does it?
 
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Muffin, it might make you feel better to know that the CDC replication study is being done by the retroviral labs and the HIV folk, NOT Reeves. Though they are more concerned with the blood supply than us, this is the best step we could hope for at this point. There's also been suspicions that the Reeves Wichita cohort isn't fit for purpose and CFS docs are being asked for samples. It's a travesty, but we live in a new age of Facebook, webcasts and we are finally connected internationally and not alone in our beds and sofas.


I'm finding it really hard to wait for all this to unravel, we have some heads in the UK that seriously need to roll but we'll see.
Katie - the same folks who failed to replicate Elaine DeFrietas' work at the CDC in the early 90s are still in the retrovirus division. As is Brian Mahy who was removed as the head of the CFSRP back in the late 90s early 00s. It doesn't mean that they won't be on the up and up, but it is a factor to watch as is the cohort being studied.
 

valia

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Ross: Good question - Wonder what Hillary is up to? She has taken leave from her website/blog and I am very curious what that brilliant wonderful woman is doing now. Guess we will have to wait and see what she comes out with.
I do wish she and some of the other heavy-hitters in the CFIDS journalism area would take on the issue of a cover-up and go looking. Ongoing gross incompetence just doesn't cut it for three decades, does it?

No idea what Hilary is doing, but I am prepared to be delighted when she comes back to tell us about it.
 
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I'm perplexed too.

Someone posted SOMEWHERE on some thread (sorry, the new 'search' function doesn't find individual posts anymore) that the WPI, or researchers close to the WPI, etc., have at least said that XMRV is not the retrovirus that Defreitas found.

So, if the Defreitas finding was so important, especially according to Hillary Johnson, then why isn't it still important today?

Are there two retroviruses involved in CFS/ME (or whatever label/name we are using)?
In her statement in the New York Times, Nancy Klimas viewed previous work more as evidence of retroviral infection in general rather than a specific retrovirus. It is also possible that XMRV has different variants or types. For example, HHV-6 has two variants. HHV-6A is much rarer and is the one associated with CFS and atypical MS. Variant B is the one that causes roseola which nearly every person has contracted at some point in time and which remains latent in the body. It is also certain that there are additional pathogenic viruses out there that have not been discovered or are only hinted at. Science is a discovery process - as in we know more than we used to, but have less than complete or total knowledge.

Remember, one virus can cause many different diseases or conversely a disease may be caused by many different viruses or a combination of viruses and/or toxins. There isn't just a lack of funding in CFS, in general the focus of research dollars right now is on the behavioral side of most chronic diseases - exercise, diet etc. Virology in general is not at the top of anyone's funding list right now and it is hurting far more people than just patients with CFS. It's an ideological thing and has very little to do with patients.
 
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I'm afraid I'm with Poet on this one. I've been rereading parts of Osler's web as well - trying to understand what happened with that first retrovirus. I remember being outraged when I first read it, although to tell the truth, there's just so much information in that book that what I got - at that point - was just a general feeling of disgust and anger.

Now rereading it I came to the conclusion that despite the CDC's problems that Folks, the retrovirologist there - really wanted and tried to find the virus and couldn't. Plus the fact everyone else who tried to find it - and there were a good number of labs - failed made me think that there really was nothing here.

This is not to say that the CDC acted well - the jokes were there and the money ran out but the retrovirologist team tried. It was complex issue for sure. I actually got so absorbed in it that Iwrote a paper on it - its out soon. Its a fascinating story.

I don't think history will repeat itself;I think there's too much and too many big players working this issue. I think we will be clear in the end about XMRV however it turns out.
I'm a touch more cynical, but that is in keeping with what I do, but something that may not have been pointed out, but which Nancy Klimas has pointed out to the CDC at least, repeatedly, is that technology has come a long way baby. Many of the tests run by the CDC 15-20 years ago need to be redone now that we have more advanced methods. Extramural researchers are doing so, and so should the CDC. Assuming they are defining their patient study population the same way.
 

muffin

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Kelly: You do a great job keeping us all from leaping to possibly dangerous conclusions. We need skeptics to "scrub" the ideas that are out there and make sure they have sold data behind them. Great job. Thanks.
And you were very right about needing the CDC to make the Reeves new position announcement. Without the CDC officially making that announcement we sort of are in a limbo - unless someone at the CAA says they were told by a high-level relevant person that Reeves is removed. And yet, we still need that public announcement.
 
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well, for general knowledge, even about CDC, I would trust CAA. I trust they wouldn't make such an announcement unless it is true. Too dangerous for them to make such a mistake.

But for a news report, the reporter has to get it from a first-hand source, someone at CDC or spokesperson for them.

Tina
 

jspotila

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well, for general knowledge, even about CDC, I would trust CAA. I trust they wouldn't make such an announcement unless it is true. Too dangerous for them to make such a mistake.

But for a news report, the reporter has to get it from a first-hand source, someone at CDC or spokesperson for them.

Tina
I agree that CDC should make an announceent, and I hope they don't wait until the next CFSAC meeting to do it. But I can say with certainty that the news is true. The Association would never make an announcement this significant without being 100% sure that it was correct.