Medical research fraud

[xrayspex]

Jim that is cool you know the psych research and can stand up to mistaken m.d.s
So where is our Don Francis though? I agree, don't want to scare off scientists, but I am livid at CDC and other parts of DHHS neglect and pushing the bogus psych studies instead, I mean Oslers Web lays out the corruption well

LJS check out that film "and the band played on" here is an excellent clip that feels like deja vu---particularly because today Judy Mikovitz presented and proved a lot of what some officials like Legrice and HOughton said last week was way off base, there is no contamination, hopefully there is thread here with link to xmrvpositive's facebook page with a recap of the workshop today

clip of band played on
http://www.youtube.com/watch?v=2-o_8aQx4r8

 

[Jimk]

Xrayspex- our anger at the CDC is just the point. It's a government institution that failed it's responsibilities to us. It should be investigated by Congress and the GAO. It did not generate fraudulent studies (that we know of at this point). They failed us by inadequate investigation of emerging illness, their charge by Congress, and by funding a narrow and biased direction of research whose effect sizes were minuscule even though statistically significant, and based on useless definitions of CFS. Institutional and political failure, failure of will, the power of conventionalism in medicine, these are the issues to kick political ass on.

 

[eric_s]

If good doctors and researchers had power to stop things being buried how do you explain Cheney "letting" de freitas research get buried and Straus and clowns taking over the wheel with thorazine for all?

I don't know what exactly happened in the case of DeFreitas's finding. I know she thought she had found a virus that is correlated to CFS and others could not find it. I know she got sick later on. And i think i also heard that in a blinded experiment together with the CDC (or something of that sort) she could not reproduce her results. Which of course does not mean she was wrong. Correct me, if some of the facts above are wrong.

Also the WPI has stated since soon after their finding that XMRV is not the DeFreitas virus.

I would be very much interested to know if DrFreitas really found something and what it was. Hopefully we'll know at some point.
But i don't think we can say something was buried. At least i can't, with the information that i have. I mean why couldn't she reproduce her finding?
And was this virus sequenced? In this case i think it would be clear if it's similar to what they are finding now.

I'm pretty sure if the WPI and the other doctors/scientists continue their work with HMRVs in CFS no one can stop that and i see no reason why they should stop. Unless they find out they were wrong and do not intend to commit fraud.

 

[xrayspex]

Eric, what is in my mind from all my readings on this from both books and internet last couple of years is that the CDC did one poor study in a fake attempt to replicate defreitas, they even admitted they didnt have the right equipment needed to replicate her findings so they didnt find it and defreitas even offered to help them but they said they couldnt afford a plane ticket to visit her and then they declared that meant it was a dead end and Stephen Straus purposefully put a big chill on other researchers getting money for cfs biological viral research and then went around the country educating docs that its a psychological problem and the CDC then kept watering down the critieria for CFS so that if there are any biomarkers like high rnase elastase or low natural killer cells etc or tilt table test etc etc that those sorts of folks couldn't be used in a cfs study, the CDC wanted CFS to be the study of tired people with no biological issues, its documented by Hillary Johnson, and Reeves took over and did studies to that end but the CDC did get in trouble at end of 90s and early new millenium for misappropriating funds designated for research and it was also shown that their "research" used funny numbers, it was very sloppy, all obviously intentional to keep their bogus definition and mistreatment of cfs machine going

 

[xrayspex]

LJS this thread might bring you upto speed:

http://www.forums.aboutmecfs.org/sh...s-1991-Retrovirus-CFS-Study&highlight=freitas

 

[eric_s]

[...]
BB- If you have real evidence of fraud, then present it: testimony that someone falsified tests, or intentionally used tubes to collect blood that they had foreknowledge would create false negatives, that kind of thing. Do you have that? [...]

And not even then it's fraud (in the sense of the criminal code).

I copy the definition from Wikipedia here

Elements of fraud
Common law fraud has nine elements:[2][3]

1.a representation of an existing fact;
2.its materiality;
3.its falsity;
4.the speaker's knowledge of its falsity;
5.the speaker's intent that it shall be acted upon by the plaintiff;
6.plaintiff's ignorance of its falsity;
7.plaintiff's reliance on the truth of the representation;
8.plaintiff's right to rely upon it; and
9.consequent damages suffered by plaintiff.
Most jurisdictions in the United States require that each element be pled with particularity and be proved with clear, cogent, and convincing evidence (very probable evidence) to establish a claim of fraud. The measure of damages in fraud cases is to be computed by the "benefit of bargain" rule, which is the difference between the value of the property had it been as represented, and its actual value. Special damages may be allowed if shown proximately caused by defendant's fraud and the damage amounts are proved with specificity.

It seems to be slightly different from Swiss or German law because, as it seems, the person commiting the fraud does not have to do so with the intent to gain a material benefit for himself or another person, but it's more or less the same thing.

Just making wrong statements does not mean you've commited fraud. If it would, half of the world would be in prison

So i think if someone really commited a fraud, yes, let them be held responsible, i'm all for that.
There's not much danger this could scare scientists, because what they usually do, even if they make a wrong statement, is pretty far away from fraud in the sense of the criminal code, in my opinion.
But i don't think someone of the people whose work is often discussed here has commited a fraud.
If, then it might be some CFS docs who sold treatments to people which don't do what they have told patients they would. Don't misunderstand me, i'm glad we have doctors who are interested in CFS and i think most of them are on our side for "noble" reasons and try their best and also help people, but this is where is see the biggest chance for fraud being commited.

 

[eric_s]

Of course i agree the CDC did bad work. I have to admit i never reald Osler's web, but even if it's a very good book, it's always subjecitve to some degree and can only tell part of the story. I thought i read in this forum or the other one (to where some people emigrated) that DeFreitas was offered the "chance" to reproduce her results in a controlled environment and that she couldn't.
Sorry, if i don't write long replies but i'm a bit worn down and have to leave again soon.

 

[Angela Kennedy]

Of course i agree the CDC did bad work. I have to admit i never reald Osler's web, but even if it's a very good book, it's always subjecitve to some degree and can only tell part of the story. I thought i read in this forum or the other one (to where some people emigrated) that DeFreitas was offered the "chance" to reproduce her results in a controlled environment and that she couldn't.
Sorry, if i don't write long replies but i'm a bit worn down and have to leave again soon.

You may need to read Osler's web sometime, to have a chance of even seeing part of the picture. All of the stuff you personally might deign to read will be subjective - even those documents claiming objectivity.

 

[Jimk]

I know this has been posted elsewhere, but as a cogent description of the kind of kick-ass activism I'm all for, read Mindy Kitel's post: http://www.cfscentral.com/2010/10/homographs-and-outside-voices.html

 

[LJS]

LJS this thread might bring you upto speed:

http://www.forums.aboutmecfs.org/sh...s-1991-Retrovirus-CFS-Study&highlight=freitas

This happens all the time in science and this is just one small paper. Papers come out all the time for many diseases claiming they found the cause only to turn out not to be true that is why that 1991 CFS retrovirus paper never got much traction. Other times papers come out with interesting clues or findings on a disease that are completely overlooked, like the 1991 CFS study. The research community has it own set of politics just like anything else that needs money and power to operate. There is a constant power struggle going on between different researchers viewpoints, this is more to fulfill personal ego other then to help patients. You need to zoom out and look at the bigger picture and how this is just history repeating itself, not a cover-up or fraud; studies come out every day on tons of topics that never get recognition, never get get their findings rechecked or validated. I will say it again, it is not fraud or a cover-up, it means nothing other then there is a lot out there for researcher to research and they normally pick areas that have the most funding or are passionate about. Ten years ago or so a new papers would come out every month claiming they found one or another virus that was causing MS only to result in dead end upon further study. XMRV may be the smoking gun, we simple have no where near enough data to know yet. Researchers get it wrong just about as many time as they get it right. What has been done (or I should say not done) on CFS is not a fraud or a cover-up it is just arrogance plain and simple.

I am in no way defending the government for their lack of action, they have a awful record of funding for research on ME/CFS but to say they are trying to cover-up something or that a crime has been committed is ridiculous. Energy should be spent in getting researchers interested in our disease and more funding put towards our disease not looking backwards, making up conspiracy theories, or putting people into good guy / bad guy boxes.

 

[eric_s]

You may need to read Osler's web sometime, to have a chance of even seeing part of the picture. All of the stuff you personally might deign to read will be subjective - even those documents claiming objectivity.

Yes, that's true. But at this moment i don't have the time and energy to read these things. And somehow i also don't want to. I just want the research to go on. And i feel like it's going quite well. Not as fast as we would hope and with a lot of uncertainty until now, but i see that there are multiple groups of really big caliber working on this.

I realize that i would never have a chance to find out what happened in the case of DeFreitas, so i won't even try. It's so far back and DeFreitas herself can't even be found, as far as i know. Only a judge or a congressional commitee or something of that sort would have a chance to find out what really was the truth, by making all the people involved appear and testify, seizing records, having experts do new studies and so on. But i feel at this point it also doesn't matter so much, it's important we find out if it's the HMRVs.

 

[dannybex]

I gotta agree with JimK and LJS -- they make many good points. Yes, the almost complete lack of funding for ME/CFS is INEXCUSABLE and reprehensible, but suing those researchers who have come to different conclusions, even if they did use different (faulty) techniques, especially this early in the game, would be counterproductive to say the least. I also agree this situation probably has a lot more to do with egos and interpersonal power struggles amongst researchers and the government agencies than it does with any so-called cover-up. If a cover-up did exist, at least here in the US, wouldn't there be SOMEONE from the FDA/NIH/CDC who would've come forward by now? I don't know...just asking.

The Defreitas debacle has been disputed by folks in these threads -- I think Cort said months ago that even she couldn't find her own retrovirus during the follow-up research -- not sure if that's been clarified or not. And I'm not saying if that happened that her work should be ignored, in fact I've repeatedly asked why the WPI and NIH aren't trying to replicate her work, and I'll ask it again:

If her work, her findings were so important, if what she found was in fact 'infectious' and a cover-up did indeed happen as Hillary Johnson suggested, then why aren't the WPI and other retrovirologists trying to replicate her findings? Why isn't Hillary herself following up on this? Is Defrietas' virus no longer important?

just asking...

 

[muffin]

jimk

And Muffin- comparing this to the Tuskegee experiments is just absurd. Really. This is not even in the ball park of what's going on here.

My comments about the 40 year Tuskegee Study and the two year Non-consensual experiments in Guatemala plus the 40 other "deliberate infections" cited by Dr. Collins were meant to show that our government is quite capable of outrageous unethical bevhiour. What part of this did you not get?

Go read Hillary Johnson's Osler's Web for the whole overview of what the individuals and organizations have done to ME/CFS for 30 years. Then as a psychologist, get back to me on what this means to you. The CDC and other players wouldn't care if you were a psychiatrist with an MD and a PhD. They don't care and they don't listen to anyone. Thrity years tells us this.

And no, there will be no locking of conspiracy theories as they are very much a part of the 30 year CFIDS story. Go tell Hillary Johnson that you think there should not be any further discussion on Conspiracy within the governments on ME/CFS. I would love to see her reaction.

 

[Jimk]

Muffin- I'm right with you in your post that ended with:
"Open your mouth to the right people. If you don't want to discuss the retrovirus then at least force the issue of getting ME/CFS funding for research and clinical trials on the medicaitons already out there and available. You don't need to beat on the researchers. The only researcher I made a comment to was McClure and it was actually out of the kindness of my heart. Really. I told her that getting into bed with Wessely was going to destroy her reputation and career and that did she notice how other researchers who he dealt with never dealt with him again? I gave her a head''s up on what dealing Wessely would do to her reputation and career - I did not lambast her for her research and conclusions. I don't beat on researchers anyway. They are not my targets - my targets are those with the MONEY FOR RESEARCH AND CLINICAL TRIALS. Then, with that money there is actually something to discuss in a true open forum."

I'm not sure why you got the impression that I don't want to discuss the retrovirus. The original post on this thread was about pressuring researchers on the issue of medical fraud. Yes there are plenty of conspiracy theories on CFS research, and some might even be true, but we have nothing like the Tuskeegee pr Guatamala horors in tms of real evidence or scale. We have neglect, not illegal experimentation. My protest was to dumping reams of material from another thread into this one where it is not germain to the topic. I don't think it's appropos of this discussion.

 

[xrayspex]

whats that saying though, those that don't learn history are doomed to repeat it, something like that, Oslers Web is a page turner, not boring, Dr Unger was pulling same BS straus and reeves did at cfsac, she has got to go, but yea I dont care if its a lawsuit, over drinks or fullblown anarchy get unger out and get the cdc out of cfs

http://www.cfscentral.com/

 

[muffin]

Hillary Johnson - Osler's Web

If you have not read Hillary Johnson's book, Osler's Web, then you must do so. She spent years doing research for this book, talking to insiders, living off of many credit cards and has captured OUR history and all that the CDC was involved in. SHE was the one to catch them mis-spending OUR research money and they were dragged before Congress.

Read her book and then you can discuss conspiracy theories of CFS, research, etc. Johnson is "THE" authority and that is why you see her quoted by all of us time and again.

Now, if you can't or won't read the book - I suggest you do - then read her website www.oserlsweb.com - read all of it. After reading Osler's Web you will have a far better understanding of why many of us believe there are conspiracies with regards to CFS, the CDC, the US government, and so on. There is no refuting what Johnson has written. And, with this new retrovirus you will understand the history of the Defreitas retrovirus of the 1980's and what the CDC did to damage replication of THAT retrovirus. After CDC damaged replication with two opposing results (that should have been a dead-give away that they were up to no good), the NIH killed off any further funding for research on Retrovirus for us.

Sorry to be the one to have to say that yes, there are a number of US government conspiracies going on with CFS, research, etc. but there are - like it or not. Educate yourself on the history of CFS and the CDC and US government before more comments are made. It is all sick and rather sad but true.

 

[glenp]

TY Muffin

Thank - you for posting all of the information that you do. The majority of people have NO idea of what really goes on, little lone be able to accept that it does!! I appreciate all that you do.

glen

 

[muffin]

Thanks Glen!

http://coverup-me-cfs.blogspot.com/2010/10/new-cdc-cfsme-website-dangerous-lies.html

Good blog on the CDC games and cover-ups.

But first read Osler's Web.