heapsreal
iherb 10% discount code OPA989,
- Messages
- 10,099
- Location
- australia (brisbane)
-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
anyone going after the defreitas retrovirus??
- Thread starter heapsreal
- Start date
No, not that I know of. All those RV leads from the early days (Defreitas, Martin and Holmes) have all been abandoned. Traces of their work are said to still exist (there have been long discussions on this before) but no researcher has shown an interest in picking them up.
Still lots of patients still alive from these times but no one interested in studying them, We have patients who tested postive now for more than one of these RV tests.
Still lots of patients still alive from these times but no one interested in studying them, We have patients who tested postive now for more than one of these RV tests.
Hi Heaps, Wow this is inflammatory stuff! i couldn't find a date on this article - do you know when it was posted - is it pretty old?
I know people apply for patents for all sorts of stuff all the time - but this looks like it has a lot of scientific evidence backing it up. If Bell and Cheney were involved in some way i cant believe they would just let a lead like that drop without pushing forwards.
B cells eh!
Justy.
I know people apply for patents for all sorts of stuff all the time - but this looks like it has a lot of scientific evidence backing it up. If Bell and Cheney were involved in some way i cant believe they would just let a lead like that drop without pushing forwards.
B cells eh!
Justy.
Sam Carter
Guest
- Messages
- 435
Quite old then. Funny that every time this subject comes up on the forums it doesnt get much interest. Surely its not that hard to get to the bottom of why it hasnt been followed up. Perhaps the science was faulty and every one but a few is aware of it. If not then surely this calls for some serious letter writing or something.
I wonder if any of the big names in CFS have been been asked about this. Dr Cheney? Judy Mikovits?
I wonder if any of the big names in CFS have been been asked about this. Dr Cheney? Judy Mikovits?
SOC
Senior Member
- Messages
- 7,849
The biggest problem (from the science world's point of view) with Dr DeFreitas' and Dr Mikovitz' work is that they couldn't reproduce their results under externally blinded circumstances. That can be the death knell for that kind of research. One can legitimately argue the fine points, but the research world generally dismisses conclusions that can't be reproduced blinded by the original lab. That's why it pays to be darned sure you can reproduce your own results before you publish.
Andrew
Senior Member
- Messages
- 2,517
- Location
- Los Angeles, USA
The National CFIDS Foundation later reported that they hired scientists to retrace DeFreitas's steps, and even had the help of DeFreitas in this process. They were unable to find it. This was reported in one of their newsletters.
heapsreal
iherb 10% discount code OPA989,
- Messages
- 10,099
- Location
- australia (brisbane)
Bugger!!
its frustrating, im really starting to think we have an immune defiency and all these infections occurr because of this. The initial infection may have 'broken'?? the immune system but the infections arent the cause but are secondary to the immune defiency(nk cells?).
Andrew
Senior Member
- Messages
- 2,517
- Location
- Los Angeles, USA
You might want to read the interview discussed here: http://forums.phoenixrising.me/index.php?threads/interview-with-ian-lipkin.17469/. He offers a model for how different pathogens can cause the same problem.
DeFreitas did find big differential results under blinded conditions in her own studies, as the document explains, but under external blinding, that fell through. So in every respect, XMRV is deja vu all over again.
What could perhaps be different this time - and should be - is that a full and proper explanation of why this happens is needed, and steps to ensure it can be dealt with and prevented in future. Robin Weiss' own similar problematic findings, which he himself has since dismissed, are another example of a similar case that remains unexplained.
There are only three types of explanations I can see for this pattern, though I may well have missed something:
1. Some type of systematic contamination issue affecting patient samples more often than controls. Extra handling of patient samples is a possible explanation, and it's the front-runner, but it isn't necessarily that, and it should not be considered 'case closed' on that question. Whatever it is, it is extremely non-obvious, or it wouldn't keep happening. More research is needed to determine exactly how this can happen so that scientific protocols can control for this in the future.
2. Some genuine non-obvious aspect of the experiments which enabled success in the positive studies but was not carried out in the externally-blinded studies. Again this would have to be extremely non-obvious, and suggestions like the significance of the heparin used in the tubes are just guesses to try to figure out what this could be. There could be something the original researchers did which was essential to success but they didn't and don't know what that was.
Again: more research is needed in order to distinguish between option 1 and option 2. Until that question is definitively answered, the mystery remains. It is unscientific to assume the hypothesis of 1 without evidence or proof. Proofs of concept are useful (this is what Singh did, I believe, and it's a major advance), but it needs to be shown how they really did apply in the actual studies. Until that happens, reasonable doubts will remain that there may be something in option 2.
3. The externally blinded studies were "gamed" by some unknown third party, either directly involved in the blinding itself or an agent from outside. This is, of course, the taboo subject of conspiracy theory. I'd like to point out that there are many theoretical possibilities for such a third party. An agent of the government in some grand conspiracy is perhaps the least likely. Other options for the third party include a shadowy private group interfering with the samples by espionage, a foreign government or rogue nation state doing so (possibly involving biological warfare), and if you want to step out there, aliens could be doing it to suppress us or to manipulate our genetic evolution for reasons unknown. Of course, all the theoretical possibilities in this class of explanations are considered utter nonsense, to be automatically dismissed as insanity, by all reasonable and respected commentators. I guess I'm not quite in that category, and a little insane therefore, because I don't see why such possibilities are all utterly impossible. I certainly don't give them a high probability, but unfashionable though it is to say it, nevertheless it's true that the probability of such matters is never, in fact, zero. However, it's significant to note that in any such explanations, it's worth being aware that if they are true, then by definition, we are almost certainly never going to be able to find out or prove them...so it's kind of academic...
Whatever the explanations for the DeFreitas and Mikovits findings, one other point seems most important. These two examples can be considered to be "false alarms", but they both illustrate that widespread laboratory contamination with unknown accidentally man-made retroviruses, that infect human cells, at least, is an undisputed fact. It's also undisputed that such contaminants are potential biohazards. And such contaminants and potential human pathogens have been created in the laboratory, unknown and by accident, and spread around the world, for many decades - and more are still being created. Furthermore, it is known in animals that such retroviruses have 'successfully' (accidentally) been transmitted between species in vaccines.
So regardless of whether these two "false alarms" were harmless retroviruses, there is almost a guarantee that there are many more such contaminants in existence, undetected thus far, and indeed there is almost a guarantee that, sooner or later, one of these will be pathogenic in humans, if indeed this has not already happened. Furthermore it is at the very least entirely plausible that such unknown viruses may explain currently-mysterious illnesses, outbreaks, and rising levels of medical conditions. Because this class of viruses do typically cause neuro-immune complications, they are a prime candidate to explain the H1N1-induce narcolepsy reported in 10 countries, gulf war illness, the unexplained rapidly rising levels of allergies and immune deficiencies in western countries in the last century, other alleged and disputed cases of vaccine damage, perhaps even the emergence of HIV/AIDS, and of course the unexplained neuro-immune illnesses ME and autism. In the case of ME, looking at the outbreak history from 1934 and 1955 in hospitals, affecting medical staff only, in precisely the areas and times where novel polio vaccines were being trialled, they really fit very well as an explanation of otherwise extremely puzzling epidemiology...and one can't avoid the fact that there are government files from the latter period (the 1950s in the UK) dealing with vaccinations and specifically the 'polio vaccine crisis', which are still official secrets to this day.
So whatever the case regarding DeFreitas and Mikovits, this is still a massive, massive issue and a highly plausible explanation for the epidemiology of medical conditions that are not yet understood. It is not in the public consciousness at all, and that's fairly understandable, but that does raise questions about the control of public information. And while it would be most unwise to conclude from all of this that this is definitely the answer, and this is clearly the explanation - that really would be unwise, because it really might not be - anyone who examines the evidence is bound to find this broad possibility compelling, frightening, and more than worthy of considerable further investigation.
And anyone who does investigate it and write about it is only the more intrigued, suspicious and disturbed when they encounter all the brick walls and the immediate, angry, vicious knee-jerk denial of authorities working in and around this area, as well as the associated media blackout. Those factors, more than any other, are what generate and maintain the conspiracy theories, which is really to say that this whole area of inquiry is effectively defined and marginalised as a conspiracy theory precisely by that official denial that this is a possibility worth considering. But it's important to remember that this situation is not necessarily evidence of 'conspiracy',and can equally well be explained as the behaviour of an insular and paranoid elite which does not trust the public with difficult information and is afraid to explore - at least publicly - these very difficult questions. Although whether that is merely a question of semantics and how one understands the word 'conspiracy' is another rather complicated question...
What could perhaps be different this time - and should be - is that a full and proper explanation of why this happens is needed, and steps to ensure it can be dealt with and prevented in future. Robin Weiss' own similar problematic findings, which he himself has since dismissed, are another example of a similar case that remains unexplained.
There are only three types of explanations I can see for this pattern, though I may well have missed something:
1. Some type of systematic contamination issue affecting patient samples more often than controls. Extra handling of patient samples is a possible explanation, and it's the front-runner, but it isn't necessarily that, and it should not be considered 'case closed' on that question. Whatever it is, it is extremely non-obvious, or it wouldn't keep happening. More research is needed to determine exactly how this can happen so that scientific protocols can control for this in the future.
2. Some genuine non-obvious aspect of the experiments which enabled success in the positive studies but was not carried out in the externally-blinded studies. Again this would have to be extremely non-obvious, and suggestions like the significance of the heparin used in the tubes are just guesses to try to figure out what this could be. There could be something the original researchers did which was essential to success but they didn't and don't know what that was.
Again: more research is needed in order to distinguish between option 1 and option 2. Until that question is definitively answered, the mystery remains. It is unscientific to assume the hypothesis of 1 without evidence or proof. Proofs of concept are useful (this is what Singh did, I believe, and it's a major advance), but it needs to be shown how they really did apply in the actual studies. Until that happens, reasonable doubts will remain that there may be something in option 2.
3. The externally blinded studies were "gamed" by some unknown third party, either directly involved in the blinding itself or an agent from outside. This is, of course, the taboo subject of conspiracy theory. I'd like to point out that there are many theoretical possibilities for such a third party. An agent of the government in some grand conspiracy is perhaps the least likely. Other options for the third party include a shadowy private group interfering with the samples by espionage, a foreign government or rogue nation state doing so (possibly involving biological warfare), and if you want to step out there, aliens could be doing it to suppress us or to manipulate our genetic evolution for reasons unknown. Of course, all the theoretical possibilities in this class of explanations are considered utter nonsense, to be automatically dismissed as insanity, by all reasonable and respected commentators. I guess I'm not quite in that category, and a little insane therefore, because I don't see why such possibilities are all utterly impossible. I certainly don't give them a high probability, but unfashionable though it is to say it, nevertheless it's true that the probability of such matters is never, in fact, zero. However, it's significant to note that in any such explanations, it's worth being aware that if they are true, then by definition, we are almost certainly never going to be able to find out or prove them...so it's kind of academic...
Whatever the explanations for the DeFreitas and Mikovits findings, one other point seems most important. These two examples can be considered to be "false alarms", but they both illustrate that widespread laboratory contamination with unknown accidentally man-made retroviruses, that infect human cells, at least, is an undisputed fact. It's also undisputed that such contaminants are potential biohazards. And such contaminants and potential human pathogens have been created in the laboratory, unknown and by accident, and spread around the world, for many decades - and more are still being created. Furthermore, it is known in animals that such retroviruses have 'successfully' (accidentally) been transmitted between species in vaccines.
So regardless of whether these two "false alarms" were harmless retroviruses, there is almost a guarantee that there are many more such contaminants in existence, undetected thus far, and indeed there is almost a guarantee that, sooner or later, one of these will be pathogenic in humans, if indeed this has not already happened. Furthermore it is at the very least entirely plausible that such unknown viruses may explain currently-mysterious illnesses, outbreaks, and rising levels of medical conditions. Because this class of viruses do typically cause neuro-immune complications, they are a prime candidate to explain the H1N1-induce narcolepsy reported in 10 countries, gulf war illness, the unexplained rapidly rising levels of allergies and immune deficiencies in western countries in the last century, other alleged and disputed cases of vaccine damage, perhaps even the emergence of HIV/AIDS, and of course the unexplained neuro-immune illnesses ME and autism. In the case of ME, looking at the outbreak history from 1934 and 1955 in hospitals, affecting medical staff only, in precisely the areas and times where novel polio vaccines were being trialled, they really fit very well as an explanation of otherwise extremely puzzling epidemiology...and one can't avoid the fact that there are government files from the latter period (the 1950s in the UK) dealing with vaccinations and specifically the 'polio vaccine crisis', which are still official secrets to this day.
So whatever the case regarding DeFreitas and Mikovits, this is still a massive, massive issue and a highly plausible explanation for the epidemiology of medical conditions that are not yet understood. It is not in the public consciousness at all, and that's fairly understandable, but that does raise questions about the control of public information. And while it would be most unwise to conclude from all of this that this is definitely the answer, and this is clearly the explanation - that really would be unwise, because it really might not be - anyone who examines the evidence is bound to find this broad possibility compelling, frightening, and more than worthy of considerable further investigation.
And anyone who does investigate it and write about it is only the more intrigued, suspicious and disturbed when they encounter all the brick walls and the immediate, angry, vicious knee-jerk denial of authorities working in and around this area, as well as the associated media blackout. Those factors, more than any other, are what generate and maintain the conspiracy theories, which is really to say that this whole area of inquiry is effectively defined and marginalised as a conspiracy theory precisely by that official denial that this is a possibility worth considering. But it's important to remember that this situation is not necessarily evidence of 'conspiracy',and can equally well be explained as the behaviour of an insular and paranoid elite which does not trust the public with difficult information and is afraid to explore - at least publicly - these very difficult questions. Although whether that is merely a question of semantics and how one understands the word 'conspiracy' is another rather complicated question...
I completely agree with this and would add to it the conspicuous avoidance of if not outright contempt displayed by "authorities" toward larger pertinent questions (e.g. why no testing for reverse transcriptase; why focus solely on VP62 to suit narrative purposes; why ME results are retracted by not PC results; why no followup on Dr Snyderman's results; why no one has sequenced Dr. Mikovits's isolates; why there a virtually unlimited money available to those who have expressed hostility to HGRVs while almost none for the original authors to improve and defend their work; etc; etc). When such questions are "addressed," it is usually in a thoroughly disingenuous manner and laced with numerous overreaching and illogical claims as well as authoritative proclamations. It is very easy for authoritarians to paint persistent demand for such answers as "militant" and "fanatical" and other brands of lazy, fear-based editorializing aimed at intimidating observers back into intellectual acquiescence.
Interestingly, both the DeFreitas failure and the BWG produced similar results in that both could very parsimoniously be explained by "failed" coding. In the case of DeFreitas, she tested samples along with John Martin and Sidney Grossberg (who recently had his XMRV GenBank listing "corrected"). I don't think we know the exact sample-by-sample results, by my understanding is that they were "BWG-like" in that each of the labs found positives in non-concordant samples across both cases and controls.
Furthermore, in neither case was the integrity of the coding independently audited or accounted for. And in both cases the coding was handled by a party that was at the time or subsequently became hostile to the hypothesis in question. In DeFreitas's case, the codes were held by the CDC I believe. Enough said there.
As for the BWG, the codes were held by BSRI. While not initially hostile, I would classify their subsequent and overall role as such. For one thing, their mandate in the process was to get to the bottom of discrepancies and methodological issues, not to produce a one-off, do-or-die test that created more confusion than anything. They failed in their primary mandate and left only a "failed test" with many unknowns that just so happens to serve a very convenient narrative role ("But Mikovits couldn't replicate her own results, blah, blah, blah"). Even if the coding was correct, the BWG still failed to fulfill their duty, which was to provide answers for discrepancies, not more discrepancies and more unknowns. To top this off, they released their results in what can only be called an exuberant, coordinated media extravaganza complete with public relations-like webcast. None of this inspires trust or respect amonst those who want scientific answers, one way or another. (Fun fact: Simmons, lead researcher of the BWG, studied at Kings College, Wessely's stomping ground.)
I do agree with you, though, Mark, that we will probably never get answers about these possibilities. One thing that troubles me about the Lipkin study is the possibility that he will do yet another do-or-die test with zero coding accountability. It would be incredibly easy to inspire trust by setting up a coding system with multiple keys and check-sums for independent auditing purposes.
Yes, all the obvious people were asked thoroughly not just about the Defreitas virus at the time of the discovery of XMRV. I'm not at liberty to discuss any replies.
There was serious letter writing Justy at the time of the Defreitas studies and serious lobbying and serious trying to fund research.
It would be fair to say that there are scientists still alive today (but no longer working sadly) who have strong feelings about how this was buried and how they could not get funding to follow it up.
That's why to me XMRV was something I wanted investigated thoroughly this time.
It also goes a long way to illustrate what happened to ME research. After the researchers who had an interest in the immunological side in the late 80's/early 90's could not get reseach funding we were then buried under the CFS mess and the early work on physical abnormalities was abandoned.
The ful weight and power of the psychiatric lobby was unleased on us and led to a dark age of ME and CFS research.
There was serious letter writing Justy at the time of the Defreitas studies and serious lobbying and serious trying to fund research.
It would be fair to say that there are scientists still alive today (but no longer working sadly) who have strong feelings about how this was buried and how they could not get funding to follow it up.
That's why to me XMRV was something I wanted investigated thoroughly this time.
It also goes a long way to illustrate what happened to ME research. After the researchers who had an interest in the immunological side in the late 80's/early 90's could not get reseach funding we were then buried under the CFS mess and the early work on physical abnormalities was abandoned.
The ful weight and power of the psychiatric lobby was unleased on us and led to a dark age of ME and CFS research.
Thanks for making that important point. I've been meaning to mention that a standard system of this nature is essential to ensure trust in the process and rule out the conspiracy theory variants.
As you say it's not that difficult I'm sure, though I'm not sure exactly how it would work. All parties would have to be able to see the labels go on, they would have to be able to confirm at the time that they were correctly labelled by category, but they would have to be unable to verify that while conducting the research, and must only be able to unblind them all when all parties are together. I've been wondering what the model for that might be; some kind of public-private key system would be involved I presume, but I don't know if there's an existing model for this, some kind of existing escrow system that works similarly for other purposes.
That's the way forward, though, for swiftly resolving these matters. On day one after the Science paper comes out, the rest of the world should be submitting blinded matched samples for a blind trial. Then, if there's any fundamental questions, the world can ask straight away: "Oh really?...". And you also can ask several other key questions at the same time - as I pointed out at the time, 10 samples each from MS, HIV, PC, ME, autism, ... would tell you what disease associations: If you got results in a pattern across those diseases, you'd have huge clues to know what to look into next...and potentially huge new pots of funding...
In the absence of such controls, all such scenarios would be trivial to manipulate, and one would not even have to be a scientist to do so.
alex3619
Senior Member
- Messages
- 13,810
- Location
- Logan, Queensland, Australia
Let me give a theory about authoritarian denial that is half joking, half serious. Authorities are not really established to make things happen. They are very bad at that. They are not out to make things work right. They are out to stop things from going very very wrong. So they create road blocks. These authorities are the fourth arm of effective government - the stop and pause mechanisms. They take themselves very seriously too. Do this, do that, fill out these forms. Its not to make things work better. Its to stop total disasters from happening. The slower things are made, the fewer disasters can happen, at least in theory, because it increases chances of spotting problems. However, this also means that good things get blocked too .... a side-effect if you will.
- Messages
- 81
Anyone know what DeFreitas is doing now? Didn't she have a motorbike accident?
- Messages
- 81
Mark, were you aware that a significant proportion of gulf war veterans who exhibited symptoms of Gulf War Syndrome were found to have an unusual mycoplasma infection? Dr. Garth Nicolson found mycoplasma fermentans incognitus.....it had been modified in a lab to make it more pathogenic (it had been weaponized). The US Military and Dr. Shyh-Ching Lo (top american mycoplasma researcher) hold the patent. They tried to kill Dr. Nicolson and his wife, Dr. Nancy Nicolson, who were both researching GWS and whose daughter was in the army, was deployed in Operation Desert Storm and fell ill with this. He also discovered that the mycoplasma could be transmitted between people.
http://www.lightparty.com/Health/Nicholson.html
The pattern of denial (and sabotage) of GWS from government officials and some scientists (in UK and America) is strikingly similar to that observed in CFS. Wessely has been prominently involved in the denial of both.
http://www.lightparty.com/Health/Nicholson.html
The pattern of denial (and sabotage) of GWS from government officials and some scientists (in UK and America) is strikingly similar to that observed in CFS. Wessely has been prominently involved in the denial of both.
"I completely agree with this and would add to it the conspicuous avoidance of if not outright contempt displayed by "authorities" toward larger pertinent questions (e.g. why no testing for reverse transcriptase; why focus solely on VP62 to suit narrative purposes; why ME results are retracted by not PC results; why no followup on Dr Snyderman's results; why no one has sequenced Dr. Mikovits's isolates; why there a virtually unlimited money available to those who have expressed hostility to HGRVs while almost none for the original authors to improve and defend their work"
I share all your feelings, asleep, your post above is so well expressed and makes all the necessary points.
I share all your feelings, asleep, your post above is so well expressed and makes all the necessary points.
Mark, there is another explanation. Mikovitz, et. al. got the results they did from contamination and the fact that the patients and control samples were handled differently.
Barb C.:>)
ETA, I didn't see that your post was written in May so don't know if you still hold these opinions.
ETA Just in case I wasn't perfectly clear, Mikovitz et. al., refers to the DeFritas as well as the Mikovitz study.
If you read the post you quoted (post #10 above), you should clearly see that this explanation is number 1 of the 'three types of explanation' I listed, and I describe it immediately after the text you've quoted above. So it's not "another explanation", it's one of the 3 explanations I discussed.
I also make a number of points about that scenario and what should therefore be investigated and explained in cases like Weiss, Mikovits and DeFreitas. My views on those issues haven't changed since last month and I don't foresee them changing any time soon; if there was a sensible case in contradiction to those points I think I'd have heard it by now.
As an aside, you refer to "the fact that the patients and control samples were handled differently". This is off-topic really, because I was referring to the subject of this thread - DeFreitas' findings - and not to Lombardi et al, which you're talkiing about here. But obviously when you claim something as a "fact" in a scientific context, evidence is required. Do you have any supporting evidence for this claim of different handling of patients vs control samples? I'm not aware of that difference in handling having been clearly established in respect of Lombardi et al (which is what you're referring to when you mention Mikovitz et al, and which incidentally should read "Mikovits").
The supporting evidence is in the supporting online material of the response to comments:
http://www.sciencemag.org/content/328/5980/825.4/suppl/DC1