XMRV at the Fed: Conspiracy or Confusion?

View attachment 1336 ]Hillary Johnson has just posted a long blog that provides alot of backup information on the controversies over the last couple of weeks. According to one of her resources the directors of the NIAID and the NIH as well as administrators at the CDC, were all involved in the withdrawal of the Alter paper. She reports that the primary investigator at the FDA was Shyh-Ching Lo and that the paper was near enough to publication for a galley proof to have been sent to the editors office.

Interestingly the Alter paper was not a surprise to the CDC at all; three months ago they had briefed the CDC extensively about the study and its outcome. The CDC, on the other hand, kept the outcome of their study close to their vest leaving the Alter researchers greatly surprised when it came out.

The biggest question right now concerns the results of the testing the CDC did on the XMRV samples from the WPI. Hillary reports that Dr. Switzer proposed a collaboration between Dr. Mikovits, Illa Singh at the University of Utah and the CD and that Dr. Mikovits sent samples to both Dr. Singh and the CDC. Dr. Singh was able to identify XMRV positive samples while the CDC did not. (Whether that, in fact, happened, doesnt appear to be a question any longer; it now seems clear that the CDC was unable to identify XMRV positives in the WPI sample set). If the effort was truly a collaboration that we must assume that both the WPI and Dr. Singh are aware of the CDCs findings.

Conspiracy? So what is going on? The events of the past couple of weeks were also cast as simply the latest evidence of an ongoing conspiracy to save face by upper-level bureaucrats that is doomed to fail. Dr. Fauci, Hillary believes, lacks the ethical compass to do anything more than to worry about his reputation. If saving his reputation means condemning millions of CFS patients to a disabling infection so be it. She acknowledges that respected researchers like Dr. Alter will not be swayed by internal pressure and that the truth will come eventually out. With the withdrawl of the Alter paper, and the coverup of the CDCs inability to find XMRV samples in the WPIs samples, the CDC and NIH are simply playing a delaying game that they are doomed to lose.

Or Confusion? Only time will tell, of course, but the conspiracy theory has some holes, the biggest of which is why engage in a conspiracy that is doomed to failure? If the truth is going to come out and with all the researchers working on this pathogen it does appear that it is going to come out, then why suppress evidence now that will come out later, and in doing so leave you looking a) culpable and b) incompetent? Why not simply jump on the bandwagon and save your own personal reputation and reputation of your institution?

Motive - Another question concerns motive; if youre going to engage in an activity that, if exposed, could damage or ruin your career, youre probably going to have a darn good motive for doing so. Its clear that no one in the federal government has done well by CFS patientsthey have ignored this disease, they have not funded it, they have not chased down promising leads.their history is a decidedly ugly one and they have alot to make up for.

But covering up a legitimate finding is another story indeed particularly if it involves more than CFS patients. The 600,000 or so possibly infected CFS patients have probably never been the main issue for the feds, the big issue has been the 10 million or more Americans potentially infected with this pathogen and any conspiracy theory must take that into account. Are senior officials at the NIH and CDC willing to cover up evidence of XMRV in the healthy population simply as a means of getting at CFS patients? That seems very unlikely.

Then theres the face saving question. There is going undoubtedly going to be egg on the faces of many Federal officials, and hopefully they will be held to account when the cause or causes of CFS are validated but. of all the possible factors, XMRV provides a great escape hatch for them, the likes of which they will probably never see again. XMRV was, of course, only discovered a few years ago; more importantly, it was discovered using a kind of technology that only became available a few years ago. Sure its possible that if researchers had looked really hard at CFS samples for pathogens they could have found it but XMRV didnt show up even in the one group that did look really hard for pathogens the WPI. In some ways XMRV presents a great opportunity for the federal research community to squiggle out of its decades denial of CFS with at least some of its face intact.

Putting Stakes in the Sand - 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. In this scenario the CDC tests the WPI samples, is unable to find XMRV in them, believes it knows why and then proceeds to put its stake in the sand by publishing its paper. (In this scenario the CDC believes it can find XMRV and that XMRV is actually not present in the WPI samples! (How does that happen?))

This is a tough issue; it lends itself to conspiracy theoriesif you believe that the truth will come out in the end there doesnt appear to be a logical reason to try to cover something up; in this game the goal is not to pretend to be right but to actually be right.

Dr. Alter and Dr. Lo test the WPI samples, do find XMRV in them and proceed to at least try to publish their work. Yes, that work is withheld due to political pressures but no one doubts that, pending the results of more testing, it will not come out and we will know what they found. Dr. Singh also finds XMRV in her set of samples and begins her own study, the results of which we dont know yet.

That paper will come out as well as will the work of the DHHS study overseen by Dr. Mikovits, the WPIs UK study, the Montoya-Columbia study, the Swedish study, the just funded Hanson-Bell study and work by Abbot Labs and Glaxo-Smith Kline and other labs who have a big financial stake in proving that XMRV exists.At the end we will know who was right and who was wrong and we should know why. (My guess is that the answer will be such a surprising one that no one will be overly embarrassed.)

A Different World - This isnt 1993; this is not a youngish researcher vs the CDC there are real heavy-weights involved on both sides. This is Dr. Ruscetti at the NCI, Dr. Silverman at the Cleveland Clinic and Dr. Alter at the NIH vs the CDC. Dr. Alter has won the equivalent of the Nobel prize for medicine (the Lasker) and he has over two hundred citations to his name. He is a researcher with a considerable reputation - no one one would think who could be pushed around.

Two Papers Yanked: Not One - We shouldn't forget either that both the CDC and the Alter papers were help up for more testing. Remember the imbroglio we had over the possible release of the CDC paper a month or so ago? That was because the DHHS pulled that paper as well. It was unfortunate that the CDC finished their testing procedures first, and presented their negative paper (unchanged). But now Dr. Alter is doing his testing and will presumably shortly be publishing his paper.

While past history might suggest otherwise there's no need at this point to assume that the DHHS paper-yanking - as unsettling as it was - was anything other than what was reported: an attempt to resolve the differences between two contradictory papers. Only time will tell how this will work out.

Too Much Light - My guess is that there are simply too many good researchers involved in studying XMRV for the truth not to come out. The CDC has drawn its line in the sand it believes it has the goods on XMRV; the WPI, the Ruscetti's, Dr. Alter and the other researchers have drawn theirs they believe they have the goods on the virus; we will see in the end who prevails.


I've done an awful lot of reading and research over the years of my illness (25 and counting) and through coincidence, often, a dark picture can emerge, depending on how you care to look at things. Also, there seems to be a whole bunch of previously unlooked at issues from diverse areas that are converging in terms of the general health and well-being of Americans in particular and worldwide as well.

A short look at how the health insurance industry works in regards to government is certainly pertinent to the questions you raise in your post. A short look at how the big pharmaceutical companies work in regards to government is as well. Add in how our food industries function with the government can shed additional light on these questions. We are what we eat, right? It's worth looking at how food works here, from seeds to consumption. It is shocking and the reverberations through our lives are profound.

You can go a bit more underground and have a peek at our defense industry, bio-weapons in particular. I have come to the conclusion that this is not something to discard when the conversation about CFS and possible causes is up for a close examination. Government culpability in that arena is something to consider as well. The Lyme community is very well aware of these possible connections, as is the autism community. Since CFS, chronic Lyme and autism are beginning to look more and more related, it is very important to investigate all of this, in my opinion. It can get very dark, but we are coming into an era when shining a light around is imperative, as you note in your post.

Yes, I believe that things like reputations, "face", etc. are issues here. But the bigger issue, the elephant in the room, is an institutionalized collaboration between government and corporations who put the bottom line before human life and dignity. From this all of the points I raised above, flow. Food for thought.

I think it is a serious mistake and very misleading to think that our present government has our best interests at heart. In my opinion, simply watching how CFS has been handled over the years makes our best interest furthest from the minds of the policy makers. It is time to do the painful work of dis-illusionment in regards to how we view our government and our relationship with it. Our lives depend on it. It is very difficult and depressing to commit to a clear vision when researching all of these issues because then the cockroaches begin to run for the cracks - the cockroaches being these inhuman and deadly attitudes and policies which have become entrenched in what we call our "government".

It's time to made an end run around these moribund and corrupt institutions that have been dictating the policies that have condemned so many to such suffering and death. It's time to let them know they are, through their actions, irrelevant to our pursuit of the truth. When it is understood that this is so, that the CDC and their ilk do not have power over us and cannot completely corrupt the light of true scientific thought we will move forward much more quickly and with much more compassion. What is needed to replace these institutions is already in place, I believe, once we can dismiss the elephant for the liar and fool that it is.
I think it is a serious mistake and very misleading to think that our present government has our best interests at heart. In my opinion, simply watching how CFS has been handled over the years makes our best interest furthest from the minds of the policy makers. It is time to do the painful work of dis-illusionment in regards to how we view our government and our relationship with it.
You know, I of all people, would never suggest that the government has our best interests at heart. The problem, as I see it with CFS and the government, is that federal officials have THEIR best interests at heart and not ours. I don't think its a problem with insurance companies - I don't think we've gotten that far yet - I more think its a problem that federal officials don't see a 'win' in it for them with CFS so they push it to the sideline.

That's a horrible thing to say and to do because it means the fed officials lack integrity on a very basic level - but I don't see how else you can parse this. Its an example as Allyson said...pf the banality of evil....all it takes if for people not to do anything for bad things to happen. The right thing to do, given the numbers and statistics, is clearly to funnel money into the disease and dig in there and figure out what's going on. Apparently the federal medical research system is not built to address need; if it was then CFS would get lots of funding - its built to address something else.

I honestly think the problem with CFS at the federal level is the 'politics of careers'; nobody sees ME/CFS as a ticket to their career aspirations, in fact, they see it as the opposite - so no one is willing (or few people are willing) to stand up at the plate for us. XMRV is an interesting test case because if it does work then I think we'll see PLENTY of people running to jump on the CFS bandwagon; that will mean it was always about opportunity (and the lack of willingness to do the right thing). I think if researchers saw CFS as a path to their personal glory they wouldn't give a damn about how the disease is perceived or its history or whatever.
I'm not sure about this. Let me preface my remarks by saying that I have not been tracking this situation very closely. With that said I offer the following thoughts.

In any research based professional community there are prevailing dogmas, shibboleths, heresies and the like. The medical community is no different. There are many in the profession for whom the Central Dogma of diagnosis is that prevailing model of the organism needs to deliver (a) a measurable anomaly of some kind and (b) an indication that the anomaly is causally linked to measurable symptoms or bodily insult. If this is what as a physician you believe about illness then CFS fails to qualify. As we know most measurements that current medicine can deliver for CFS patients are either normal or mildly anomalous - and in the latter case, not known to cause any of the symptoms CFS patients commonly report.
To this day there are plenty of physicians that refuse to deviate from this Central Dogma (I have met a number ...).

This surely, is essentially why it has had such a hard time being accepted by the medical community as a real disorder. It is also not (medically) life threatening nor is the patient population particularly large or influential. There are no obvious candidate solutions. There is nothing tangible to measure. This marks it as a "hard" problem with little foreseeable payoff, hence as you intimate, not a good selection to build a career around. No wonder it has been practically invisible in terms of research and funding! In fact I would imagine a fair amount of indifference to prevail at places like the CDC.

Suppose, as is not unlikely, that many of the CDC denizens subscribe to this Central Dogma (Yes, I know that the CDC "officially" recognizes CFS as an illness but operationally one would expect that the standard methodological paradigms to apply). Throw in a little hubris, some past investment in discounting CFS as a real disease, bureaucratic politics, etc. and there are at least the seeds for an environment in which researchers systematically see what they already believe to be the case (cf. experimental bias). For example, maybe the research was conducted in a half hearted manner since confidence was so high that there was no real disease to investigate. Maybe controls were not very tight for the same reason. Maybe some key experimental stones were left unturned, etc.

Also, inductively speaking the CDC does not have a good record in this area as you note. In other words, their past actions do not render it especially probable that their current ones are reliable. This much is simple inductive logic. Add to this some of the known abuses of the organization (the syphilis study has already been mentioned on this site, for example) and the induction is stronger still. As has also been pointed out consequences of such abuse have been minimal. So it is unlikely that anyone at the CDC is intimidated or quaking with fear about being "found out". As suggested above, on the contrary, I would expect this to be a relatively minor episode in the collective mind of the CDC. The do after all (nominally, at least), have a lot of important stuff to take care of with higher stakes for all (of them) concerned.

I think that you are right that they are "honest brokers", i.e. that there is probably no deliberate attempt to mislead or obfuscate, no one is acting in "bad faith". But one can be an honest broker and still be a bigot, for example. One can be blind to evidence on the basis of a priori adherence to a dogma, a theory, an ideology, etc. This certainly happens in the sciences (both "hard" and social) with some regularity and there are fashions even in mathematics and philosophy. So while I think you are correct that there is no conspiracy, there still seems to me to be plenty of room for a pernicious scientific insouciance. This essentially just amounts to the tyranny of entrenched ideas when wielded by those with power. There are any number of people after all, whose careers have suffered catastrophically because their thinking has been at odds with the beliefs held by the prevailing powers but who have subsequently been vindicated.

Also as you suggest, if enough evidence accrues and casual trajectories can be drawn between XMRV and the symptomatology of CFS patients we should be in much better shape. Any dogmatic deniers will be silenced and so on and so forth. If further, some effective treatments emerge this would fairly conclusively admit CFS into the standard medical canon, satisfying the Central Dogma. For we who are sick with this wretched disease this obviously cannot come soon enough and it is exasperating in the extreme to contemplate delays manufactured by shoddy work, researcher egos, medical antagonism, epistemological bias, bureaucratic infighting, funding credibility, marketing issues, etc ,etc.
Cort;bt2609 said:
I think if researchers saw CFS as a path to their personal glory they wouldn't give a damn about how the disease is perceived or its history or whatever.
What we need is fresh PR. The fact is that this disease is (a) difficult to solve (b) costs the economy tens of billions of dollars per year in the USA alon e. We need to target it at the highest level to show that CFS is not small-fry - there will ultimately be Nobel and other prestigious prizes for a legitimate (almost curative) treatment.
One scenario: three govt agencies with two different findings, the CDC has botched it again clearly but wants to save face, so the higher-ups in govt health decide, let the CDC paper be published first, allow a little cooling off time, then release the NIH/FDA paper and the CDC can say, "Oh my, look at that, your additional tests have convinced us: this is brand new evidence and sure enough there's a retrovirus there!"

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