Article: XMRV at the Fed: Conspiracy or Confusion?

You can view the page at http://www.forums.aboutmecfs.org/content.php?186-XMRV-at-the-Fed-Conspiracy-or-Confusion

 

I think this sentence has an extra 'not' in it:

"but no one doubts that, pending the results of more testing, it will not come out and we will know what they found."

I agree that a deliberate conspiracy makes no sense. If it turns out XMRV is the cause of a significant proportion of CFS cases then the way a lot of researchers have treated CFS patients are going to look very bad... but they'd probably get away without serious reprimand because we hate holding important people accountable for the suffering they cause other. If they tried to cover it up - that would make it impossible for anyone to excuse their actions.

Even if they honestly failed to find a link between CFS and XMRV and such a link is later validated, it's going to make people read their earlier CFS work far less generously.

 

so why design a study not able to detect xmrv?

 

Even if they honestly failed to find a link between CFS and XMRV and such a link is later validated, it's going to make people read their earlier CFS work far less generously.

Indeed. They are supposed to be the world leader in finding emerging infections. They can't, even when offered help and samples, find the virus. That's shameful and they should be taken to task on that point alone. I think the general press can easily grasp that point.

I also think there's plenty of ground between conspiracy and confusion.

The CDC's study is consistent with their efforts to dilute the definition of CFS to the point of meaninglessness. See Tom Kindlon's fantastic comments on the Switzer paper here. They (the CFS group, that is) created a very nice rear exit in this paper. "We weren't studying the same illness. We've been telling you these CFS patients have a psychosomatic condition." They can drag out the debate for quite a while with questions of cohorts, at a minimum. To quote Dr. Vernon "Studies such as this one from Switzer, et al., continue to absorb time, divert precious resources and fuel controversy instead of consensus." Yep, that it has and that it will.

Then they're just left to explain away their inability to find ANY XMRV. That's much easier (assuming they can dodge the bullet of the WPI positives, which I bet they can) to attribute to some minor technical "tweak", and what do you know we CAN find it in the general population.

Finally, there's the issue of the disclaimer Hillary Johnson reports that was(?) to have appeared on their paper saying that the study does not officially represent either agency. Doesn't sound like the NIH and FDA are getting behind XMRV. I don't see a government agency stepping up in any meaningful way.

Conspiracy, no, probably not. Is the government protecting the interests of public health? Not even close. I think that's the point that seems to be getting lost in this debate. How many will contract XMRV while people play politics before someone begins working on a vaccine? How many will suffer unnecessarily while existing ARVs are tested and new ones developed and real funding gets applied? Will there be any serious funding laid in for the the FY 2011 budget? Nope. The band is still playing. It's off key and sounds like hell but it's still playing.

 

I agree Cort I think you have addressed a lot of the fears that are shared by long term CFSer's and put them to bed.

The question of Elaine DeFrites' retrovirus may well be answered within the next year. It look's like the prevailing research is gearing toward the ideal that XMRV is necessary but not sufficient for illness. XMRV's low copy numbers may be due to the fact that the majority of the virus has "recombined" with either another MLV or virus to create a disease state that's not just about the XMRV alone. This could be why Dr. Defrites had such a difficult time isolating the virus in the first place. The "recombination" theory could explain a lot of things.

But now that the base virus has been isolated and turns out to be a retro-virus really does change the game.
Great write up!

 

The question I raised was whether a 'coverup' was occurring - not whether the cohorts were good (we know that they are not - and another study with a good cohort is reportedly under way) or even if the science of the CDC paper is particularly good.

At this point we are assuming the worst about the DHHS. I can understand that based on prior history but the DHHS yanked both papers back; the CDC paper was finished first and it was published. The CFIDS Association reported that the Alter paper will be published in the next couple of weeks and Mindy Katei states her sources state it will have the same results as the original paper.

How many will contract XMRV while people play politics before someone begins working on a vaccine? Will there be any serious funding laid in for the the FY 2011 budget? Nope. The band is still playing. It's off key and sounds like hell but it's still playing.

Of course, nobody, let alone the pharmaceutical companies, will work on a vaccine until XMRV is validated. We know that Glaxo Smith Kline was ready to go with its treatment trials until the negative studies appeared. Now you can say two of those were bad studies, by people not particularly desiring to find the pathogen but as a group they were good enough for GSK to pull back. Thats an economic decision based on questions those studies brought up - to the GSK researchers - about the virus. Now they've launched their own study.

I am not trying to defend the CDC's reputation with CFS! I just don't see how the usual conspiracy theories apply here. I think this is a different situation. The CDC has a real incentive to do the best work they can in this case.

The point I was trying to make is that whatever problems we or Suzanne Vernon or Dr. Mikovits or anybody else has about the CDC study is that the CDC, itself, believes it to be accurate and true. They believe that when the dust settles their study will be left standing. They are betting their reputation - knowing that there alot of studies by good researchers with different cohorts in the works - that they are right and they know that history will prove somebody right.

We shall see! They have a big group of established researchers against them; they are not just going up against Dr. Mikovits, there's Dr. Ruscetti (240 papers to his name), Dr. Silverman (250 + papers to his name!), Harvey Alter (200 + papers to his name!) going against (74 ) and Heineine (135 papers).

Right now the CDC folks are outmatched. Nobody wants to lose this game

 

so why design a study not able to detect xmrv?

This question suggests that they would design a study designed not to be able to detect XMRV. But I would ask why anybody would want to do that with XMRV? - Knowing that it is going to be the focus of alot of work. Why would you shoot yourself in the foot like that? And why would the HIV/AIDS division of the CDC want to participate in this conspiracy against CFS anyway?

My guess is that they designed a study that they thought would be able to detect XMRV and they weren't able to detect it - so they don't think it's there. It's as simple as that but its a turn of orientation from "They're out to get us so they designed a study to whack us" to "they tried to find it - perhaps inadequately - and couldn't".

The question is are they right or are they wrong?

Hopefully, and I think it will, time will tell that as scientists they failed.

 

They have had time to go back and change their testing method, they did not and published. They also had the 20 positives from the WPI. I'm not saying they are out to get us, but sometimes that is what happens. Have you ever heard of Harold Shipmen? Similar thing. Time will tell.

 

They have had time to go back and change their testing method, they did not and published. They also had the 20 positives from the WPI. I'm not saying they are out to get us, but sometimes that is what happens. Have you ever heard of Harold Shipmen? Similar thing. Time will tell.

I assume that they didn't feel they needed to change their testing method. In fact, as we know the DHHS asked them to go back and retest something.

Its certainly VERY true that a study can be wrong and change everything if the scientific community accepts that's the end of the ballgame. That's for sure. I think my point is, and hopefully I'm right, that there are enough important people committed to a) either establishing the WPI's results are true or b) figuring out what's really going on - that that won't happen.

Remember that we have both Dr. Mikovits and Dr. Vernon working with the DHHS blood group. This group is proceeding very slowly because they're checking and cross checking everything.....they are going to set the standard for this and Dr. Mikovits is right in there! She's pointing out (demanding, I'm sure) how the WPI got their results - and ensuring that the group checks out their technique thoroughly.... she's making sure that they are doing things right....unless Dr. Mikovits gets upset about something that went on there - it sounds like we have a failsafe in the group. (I'm sure she'll let us know ).

I know the CDC is in there but so is the FDA and the NIH and the WPI and the CAA (Suzanne Vernon). Those discussions must get interesting

 

Instead of the broad ranging conspiracy theory to keep CFS patients down a more likely explanation for the events that have taken place is that everybody thinks they are correct.

I agree with that.

 

When it comes to the CDC they are capable of anything, the DHHS is a different matter. They have merely disgraced themselves by interfereing in the scientific process.

 

Again, sorry but I just do not believe so many people in the US health organizations could be this stupid for this long. Look at the enormous amount of evidence and really tell me that you can't at least suspect a conspiracy by our government. I hate to say this about the US government since my college, grad school round one degree, grad school round two degree and years of supporting the Feds shows that I did believe in my government and did want to be a part of the solution. I thought long and hard about this - years long and hard - but this is all that I could really conclude. I hate my own conclusions but that's what 30 years of evidence points directly at.

 

I'm sure Mr Switzer appreciates your giving him an honorary Phd, but perhaps it is a bit misleading to those reading your article.

As far as I can tell the highest degree Mr Switzer has earned is a Masters in Public Health. While he is, based on earlier work, a valued researcher, he does not have the important experience that comes with performing the research for and writing a doctoral thesis.

You might want to consider altering your article to reflect Mr Switzer's correct professional title.

 

Yea, I don't really say it, but you are right. There are some who have plotted to do something illegal. In this case, not protecting the blood supply, abusing patients, etc. Designing a test to not find XMRV because you believe it is not there is surely ilegal, if your job is to do the very opposite. I don't know US law, but it won't be very different from the UK.

 

I am not trying to defend the CDC's reputation with CFS! I just don't see how the usual conspiracy theories apply here. I think this is a different situation. The CDC has a real incentive to do the best work they can in this case.

Right now the CDC folks are outmatched. Nobody wants to lose this game

Let me try all over.

I think the CDC answered a DIFFERENT question. We're trying to compare apples and carburetors.

Doing your "best work" to find XMRV in a bunch of people with very little physical disease is a complete contradiction to the Science paper. This is no more subtle matter of cohorts. If the WPI studied those patients, XMRV would still be an anomaly in prostate cancer with some lingering questions about it's role in the general population.

 

I'm sure Mr Switzer appreciates your giving him an honorary Phd, but perhaps it is a bit misleading to those reading your article.

As far as I can tell the highest degree Mr Switzer has earned is a Masters in Public Health. While he is, based on earlier work, a valued researcher, he does not have the important experience that comes with performing the research for and writing a doctoral thesis.

You might want to consider altering your article to reflect Mr Switzer's correct professional title.

Will do. I hate to give him more credit that he deserves I always assume that they are all Ph.D's. He does seem to have quite a track recored but it does kind of make you wonder about a) what kind of people they have there and b) if they put their best and brightest on the XMRV case - I would be that they didn't.

 

Let me try all over.

I think the CDC answered a DIFFERENT question. We're trying to compare apples and carburetors.

Doing your "best work" to find XMRV in a bunch of people with very little physical disease is a complete contradiction to the Science paper. This is no more subtle matter of cohorts. If the WPI studied those patients, XMRV would still be an anomaly in prostate cancer with some lingering questions about it's role in the general population.

I know the cohort question is important but it isn't critical in my mind. We always knew it was a strange cohort but given the background rate in the healthy controls of the Science study the virus should have shown up in at least some of them. I would have expected it to have shown up in at least 10% and I would have been fine with that number....we could have then said - it'll probably show up more as other groups test sicker patients.

I don't think we should entirely discard that cohort; yes, they weren't as ill but they still displayed several abnormalities that occur in CFS; they had low cortisol levels and low HRV levels and in the Pharmacogenomics studies they appeared to display a range of immune problems as well. I don't think they displayed much orthostatic intolerance..... they were CFS-Lite

The cohort was a legacy of Dr. Reeves. There was nothing the HIV team could do about that- except look for other better patients to study, which, if reports are accurate, they did and we should get that report at some point and that will certainly tell us more.

I think, though, given the CDC's inability to find any XMRV that the problem is mostly in the methodology..

 

”My guess is that there are simply too many good researchers involved in studying XMRV for the truth not to come out.”

That’s my guess, too. My guess is that Alder et al are testing the CDC’s samples. They will naturally find a few infected with XMRV, but not anywhere near the percentages in their own study or the WPI’s.
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I think the CDC has drawn their line, preparing for that. Those people with XMRV? They don’t have CFS, they have a “neurological disease.” Who knows, maybe myalgic encephalomyelitis. The NIH, WPI, anyone using the Canadian Consensus Criteria, anyone whose patient cohort is very sick or has immune disorders, they aren’t studying CFS. Because CFS is a psychogenic disease that can be cured with CBT & GET.
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“if you’re going to engage in an activity that, if exposed, could damage or ruin your career, you’re probably going to have a darn good motive for doing so.”

But they have no reason to believe it would damage or ruin their careers. In a post earlier today, muffin mentioned the Tuskegee Experiment (where poor African-American syphilis patients were prevented from getting treatment), which the CDC kept up for 40 years. It got me to wondering what happened to the people in charge when that came to light, so I did some research.
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In 1968 Public Health Service VD interviewer Peter Buxton wrote a letter to the CDC pointing out the ethical issues of the experiment; it was ignored. A year letter he wrote another letter saying that it could be bad P.R. for the CDC if it came out. That concerned them, and they convened a panel to review the study, and decided to continue it until all the subjects died. The head of the CDC then was Dr David Sencer. Finally Peter Buxton went to the press and in 1972 the story broke. The experiment was ended, there was a huge public outcry, and a congressional investigation. “Informed consent” rules for clinical studies were revised. The <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-comffice:smarttags" /><st1:country-region w:st="on"><st1lace w:st="on">U.S.</st1lace></st1:country-region> government (that is, taxpayers) paid the survivors compensation, and President Clinton apologized on behalf of the country.
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And what happened to Dr Sencer? Nothing. He continued on as head of the CDC until the 1977 swine flu epidemic that wasn’t, when 32 people died and some 500 got guillain-barre from the vaccine. 60 Minutes did a segment showing that he knew it was sometimes a side-effect of the vaccine, but chose to conceal it from the public because they might have decided not to get vaccinated. After that he was fired. He went to work for Pharma for a while and then was appointed Health Commissioner of <st1lace w:st="on"><st1:City w:st="on">New York City</st1:City></st1lace> at the beginning of the AIDS epidemic, when he refused to provide AIDS prevention education or care provisions for patients.
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And where is Dr David Sencer now? He’s retired and serving on –wait for it—ethics committees at <st1lace w:st="on"><st1laceName w:st="on">Emory</st1laceName> <st1laceType w:st="on">University</st1laceType></st1lace>, and teaching freshman medical students. Emory, where the head of the psychiatry department was recently found guilty of taking millions of dollars of dollars in bribes from pharmaceutical companies to peddle their products as CME for doctors, because, he said, the ethical guidelines weren’t clear.
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So why would anyone at the CDC be concerned about their career if their negligence of ME/CFS patients is shown to be malfeasance? They can always get a job teaching ethics to the next generation of doctors.

 

I think the CDC has drawn their line, preparing for that. Those people with XMRV? They don't have CFS, they have a "neurological disease." Who knows, maybe myalgic encephalomyelitis. The NIH, WPI, anyone using the Canadian Consensus Criteria, anyone whose patient cohort is very sick or has immune disorders, they aren't studying CFS. Because CFS is a psychogenic disease that can be cured with CBT & GET.

If the cohort that they based their original CFS definition on turn out to be XMRV +ve, then they will not get away with that. Not even close. In fact if their current cohort (Reeves) then turns out to be -ve, then that is even stronger evidence that they deliberately manipulated the definition for their own ideological ends. There are also plenty of others who were describing CFS as psycho-somatic as soon as the original definition was published.

I can't see any way out of this for the CDC (and the others). They made their bed, now they have to lie in it, in full public view.

 

And where is Dr David Sencer now? Hes retired and serving on wait for itethics committees at <st1lace w:st="on"><st1laceName w:st="on">Emory</st1laceName> <st1laceType w:st="on">University</st1laceType></st1lace>, and teaching freshman medical students. Emory, where the head of the psychiatry department was recently found guilty of taking millions of dollars of dollars in bribes from pharmaceutical companies to peddle their products as CME for doctors, because, he said, the ethical guidelines werent clear.
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So why would anyone at the CDC be concerned about their career if their negligence of ME/CFS patients is shown to be malfeasance? They can always get a job teaching ethics to the next generation of doctors.

Wow. That's true (and sickening) irony for ya. But unfortunately so typical of almost any career in government.

Thanks ixchelkali -- that must've taken a lot of time and 'energy' to dig up all that dirt.