Negative XMRV CFS study with Ila Singh's name on it (University of Utah)

[Cort]

My overview of the Singh study can be found here by the way

http://forums.phoenixrising.me/content.php?418-Singh-XMRV-CFS-Study-Strikes-Out

 

[Esther12]

Thanks for the overview cort.

 

[currer]

I agree with many of freeatlast's reflections on this subject

The XMRV the CDC found was highly variable, replicating in human cells, not a lab contaminant or lab creation. Even though it was only found in under 2% of the patients studied (three in all) this finding undermines all the contamination theories.

The CDC accepted that they were at the limits of their detection. They could not detect the virus in blood with their assays, even in the patients they previously found positive. They found no antibody in the XMRV positive patients but suggested this could be because it was a latent infection (as in the macaques.)

All these findings actually agree quite well with what Judy Mikovits has been saying about XMRV all along. But she claims to find much more, and in CFS patients.

This is the only difference between the CDC and JM at the moment!

 

[eric_s]

It's yet another of XMRV's many twists and turns...and how funny that the CDC's HIV lab is finding it - which should give some of us more confidence in that lab ...they also reported that XMRV might be transiently showing up in their lab workers - if they find it they appear to be reporting it..

To me it seems more as if it's the people investigating XMRV that are doing the twisting and turning. I feel as if we are getting more of that than would be necessary. And i'm really getting fed up with it.

 

[In Vitro Infidelium]

I lived through the early AIDS/HIV time and saw friends die of the disease so I can testify that no, it did not spread in an obvious pattern and some features of the virus in families meant that doctor found it really hard to reconcile an obvious pattern. If you don't believe me have a read of "and the Band Played on". Children and partners of IV drug users developed symptoms before the person initially infected. There were children dying of HIV/AIDs and doctors were not willing to admit and could not proof causality to the virus. Then there were the people who had HIV through a blood transfusion and were left to suffer and die with no explanation and deliberately not told their virus status or suspicions.

The patterns may have been hard to recognise in the early stages of the pandemic (but that's generally the case), the point is that patterns and vectors are discernable. In the case of AIDS in the late 70s and early 80s no one was certain what they were looking at in terms of a disease description - that isn't the case with M.E/CFS, we have a disease description (or several depending on your perspective) and we have statistics that roughly define prevalence and susceptibility, in those terms we know what we are looking at in terms of the effect of the active disease. At the very least we have a description that applies throughout Europe and all English speaking countries, that alone implies extensive geographic spread - so if we are talking about a single infectious cause, then it's either endemic to humans, pandemically infectious to humans or endemic in animal reservoirs to which a very broad human demographic is regularly exposed, or some combination of these factors.

As Dr Mikovits said "if this were HIV it would be 1983"

Was Mikovits talking about XMRV or M.E/CFS ? If XMRV is considered to be an infectious analogue of HIV then despite Mikovits' hypebole, there could be a logical basis for her claim, but that would still require a complete rejection of M.E/CFS as a symptomological analogue of AIDS. AIDS wasn't even acknowledge as present in Africa until 1983 and heterosexual infection was barely acknowledged as major vector. While we have no identified vectors for M.E/CFS we have extensive statistics for prevalence and susceptibility. Applied to M.E/CFS with XMRV as the single cause, Mikovits' comparison with AIDS/1983 is nonsensical, unless the implication is that the role of XMRV in M.E/CFS is a recent phenomenon and any earlier M.E/CFS type illness was of some other causation.

There may be an obvious pattern but we don't know what it is. In the UK we have many families with ME. No one has done the epidemiology of these families. We don't know what is happening with them. There may be something very slow or it may be a combination of factors. There could be clusters of different diseases all caused by one or two viri. That's a disgrace. We don't even have the data to make meaningful comments on ME type disease in families.

I agree that the lack of biologically focussed epidemiology is a major block to progress in understanding M.E/CFS, whether familial studies demand specific attention is another matter, because if the defining issue is assumed to be an infectious agent then one has the problem of what is it that is being looked for. In the absence of any probable infectious causative agent to target for search, disease progression, levels of disability and detailed demographic and familial histories across a wide population may offer more definitive data than specific familial studies, although ideally both would be pursued in tandem.

IVI

 

[currer]

Honestly IVI, I dont know where you get your statistics from.
As far as I am aware nothing is known with any certainty about ME/CFS either prevalence, epidemiology, causation, how the disease develops over time once contracted, - you name it!

I can only speak for the UK of course. Our government certainly can be proud of itself here. It has worked hard to ensure we are just as ignorant now as we were thirty years ago.

 

[*GG*]

It seems that Dr Singh found that not to be the case:

It turns out that a few months prior to extracting our blood samples, the same biorobot had been used to extract DNA from tissue culture cells that had been infected with XMRV. Despite the several months interval between the two extractions and the use of sterile, disposable reagents in the biorobot, we obtained false positives in our negative extraction controls and some patient samples.

Not sure if this paragraph is from Alex or the paper, but this sounds like contamination. "False positives in our negative extraction controls and some patient samples." A negative control that ends up "false positive". perhaps I am wrong in my interpretation, but again, this sounds like contamination. I would assume that this explained away?

GG

 

[Daffodil]

we musn't panic. i think there is good news coming.

 

[free at last]

My stakes in this at presnt, are not as high as for some here. but, i paid the price of this horrible illness, for many years, even though i survived and for the most part got a lot of my life back. thats not to say. my body isnt still affected, and my mind partly destroyed. but im doing good at the moment. none the less. the impact emotionally is so powerful. when i found out a cause for all that suffering ( possibly xmrv ) i burst into tears. tears of relief. tears of knowledge. tears of vindication. and on and on. Then it seems. we cant have that.

We must be the unkown mentaly ill patients, who are just imagining it all, are just making it up. or are mentally disrurbed to a point where, we make our selves illl. Its so unfair for everyone. its just not right. this was supposed to be our justice. ( the truth was out justice) the wpi. gave us hope, and our pride back. the world once again is taking it away again.

Thats ok i guess if the world is right. but what if they are wrong ? what if, it really is this virus. that has ravaged out bodys and minds. we must keep pushing for the truth, untill we know 100% it either is, or is not, this virus. And if its not, the real cause must be found.

I hope you know something i do not Daffodil. I so admire your courage. all your courage against this horrible disease. its funny you saying we musnt panic D. a memory shot through, with those words. the hardest part for me. was i hated the illness so much, it scared me so much. it felt so horrible for so long. all i ever did was panic. that panic just suffocates the soul. drowning in fear, and illness. you all know exactly what im saying. hope your right D

 

[eric_s]

You know, what is the hardest for me, is that i am sure we don't have to let anyone take something away from us or classify us in a wrong way. We don't even have to depend on XMRV so much. If we did better at advocacy, raising money, getting research done, then even if it's not XMRV that's causing ME/CFS, i would be sure we will go on quickly and find what the cause is.
But because we are doing too little and not good enough, everything goes so slow and we depend so much on the mercy of others and they have a lot of power over us and our situation. If we would only change this, become better organised, more powerful, had more money and more people being active (even little things would help a lot), we could all feel much better, because we would know we are getting there as quickly as possible and nobody can discriminate or abuse us.
If i felt it's us who are in charge of our destiny and we are doing the right things to improve our situation as quickly as possible, i would not care about XMRV so much.

 

[In Vitro Infidelium]

Honestly IVI, I dont know where you get your statistics from.

Do you agree/disagree that the illness known to most contributors on this forum as M.E/CFS, is:

1. Known (or is generally accepted ) to affect all age groups with the possible exception of very young children ?

2. Affects (or is generally accepted as affecting) women disproportionately more than men, up to the order of 4:1 ?

3. Known to be (or is generally accepted to be) more prevalent in age groups between 25 and 60 compared with age groups outside those limits ?

4. Known to be (or is generally accepted to be) prevalent at rates in the region of 0.4% - 1.5% in developed countries, with an estimated global prevalence of 17 million people ?

If you disagree with these statistics then what is your basis for describing the illness beyond listing the symptomology of individuals ? Should we stop campaigning on the basis that 250,000 in the UK and over a million in the US are affected by M.E/CFS and say weve no idea how many are affected and it may actually only be a few and may therefore not a be a major public health issue ? Or do we continue to campaign on the basis of those figures even though we may not believe them ?

Whether accurate or not, collectively M.E/CFS sufferers have accepted a certain view of the illness and it is how we consistently explain it to each other and to the wider world. If we are to proceed from statements such as "if this were HIV it would be 1983" then we need to compare our accepted description of M.E/CFS with AIDS, which is what I did above. If that then leads to a rejection of the accepted description, thats fine (though I fail to discern any logical basis for it) but in fairness to those who want to continue to work with the accepted description, those who reject it, should have the courtesy to explain what it is they are talking about when they use the terms M.E or CFS or M.E/CFS. There are those of course who believe that M.E and CFS are different conditions but I dont think thats what is at issue here.

IVI

 

[In Vitro Infidelium]

we musn't panic. i think there is good news coming.

Why do you consider that the excellent work of Ila Singh isn't good news ? Science has advanced, what could be better for medical research ?

IVI

 

[eric_s]

Ian Lipkin has said that now we are more confused than before. So i'm not so sure about having advanced.

 

[Megan]

I have only just caught up with this news over the weekend. Very disappointing, as there seemed to have been indications that this study might be positive.

The thing that sticks out to me is the suggestion that antibodies might be cross reactive to 'related antigens'. Is she referring here only to CFS patients in other studies, or also her own antibody tests reported in her patent document? She clearly stated in the patent document that she had found XMRV antibodies in CFS patients, but now in this published study she says not? So what was she picking up in her earlier antibody tests? Has she something more to tell us?

 

[floydguy]

Why do you consider that the excellent work of Ila Singh isn't good news ? Science has advanced, what could be better for medical research ?

IVI

How have we advanced? It's another 0/0 study with no explanation as to why WPI might be wrong. I am not seeing how we've made any progress since Singh's study.

 

[alex3619]

Do you agree/disagree that the illness known to most contributors on this forum as M.E/CFS, is:

4. Known to be (or is generally accepted to be) prevalent at rates in the region of 0.4% - 1.5% in developed countries, with an estimated global prevalence of 17 million people ? IVI

Hi IVI, I am fairly sure the figure of 1.5% is way too high, more appropriate for a diagnosis of ideopathic chronic fatigue than ME or CFS. I am aware that even higher figures have been quoted using Reeves or Oxford criteria, but I don't trust either definition.

However, what I really disagree with, and its bugging me more and more, is this often quoted figure of 17 million world wide. Where is that coming from? If the prevalence data is right, and applies to all groups worldwide, then the real figure is much higher even with a prevalence of 0.4%. If it is actually 1.5%, even though I doubt it is, the real world population of ME/CFS patients is much much higher than 17 million. This is an old figure - it might have been true once, but that was a long time ago.

Bye,
Alex

 

[In Vitro Infidelium]

Ian Lipkin has said that now we are more confused than before. So i'm not so sure about having advanced.

Confusion doesn't obviate progress, it's just one stage in a process. New data frequently makes a situation more confused, the new data becomes assimilated, the need for further study is established, further data is ontained and the whole thing starts over. Science only very rarely arrives at end points in the style of 'the crime is solved', what you get usually is either part answers that maybe help a bit with some real world problem, or complete dead ends needing a sign saying 'no way through'. I wish more medical researchers were more open about the limitiations of their work - beware those promising any kind of 'fix' ,let alone a 'quick' one.

How have we advanced? It's another 0/0 study with no explanation as to why WPI might be wrong. I am not seeing how we've made any progress since Singh's study.

The question "why/how WPI is 'wrong" may not be scientifically approachable. If the WPI work were to have produced numerous false positives, establishing the precise error would likely require a replication of the original work with all errors in place and than having to work back from there - the problem is that further positives in a replication would be seen as vindication of the orginal work - which is why science does not usually accept stereotyped replication as sole sources of validation. Scientifically the WPI work has not been validated, Singh et al have produced a study that shows why the WPI can very likely not be validated -that's progress, and the conclusion from which is XMRV was never relevant to CFS despite what the WPI claimed was the case. Of course Lipkin and the BWG studies may show something different, but those future results will be subject to contextualisation by the Singh study - again in scientific terms the capacity to provide that contextualisation is progress. It may or may not be what M.E/CFS affected people want, but the researchers can't choose the results unless they are going to lie.

IVI

 

[In Vitro Infidelium]

Hi IVI, I am fairly sure the figure of 1.5% is way too high, more appropriate for a diagnosis of ideopathic chronic fatigue than ME or CFS. I am aware that even higher figures have been quoted using Reeves or Oxford criteria, but I don't trust either definition.

However, what I really disagree with, and its bugging me more and more, is this often quoted figure of 17 million world wide. Where is that coming from? If the prevalence data is right, and applies to all groups worldwide, then the real figure is much higher even with a prevalence of 0.4%. If it is actually 1.5%, even though I doubt it is, the real world population of ME/CFS patients is much much higher than 17 million. This is an old figure - it might have been true once, but that was a long time ago.

I don't think anyone with a serious intent to see M.E/CFS as being of organic causation could contend that there has been any adequate epidemiological study of the condition, so yes all the figures are dubious - but if we do not accept those figures, what do we accept as being the epidemiology and demography of M.E/CFS ?

If there are not between 1 and 4 million people in the US with M.E/CFS, how many are there ? 10,000 ? 10 million ? Is it that we simply don't know and no-one should put a figure on it until there has been adequate research ? And if XMRV or some other infectious agent is the cause of M.E/CFS, does that mean it may not be a serious health problem because only a very few people have it ?

If M.E/CFS affected people can not even articulate these issues to and between each other, what hope is there of explaining our concerns to other people, let alone the media or politicians ? Simple cherry picking of whatever 'facts' seems to fit on a day by day basis makes us look either stupid or liars or crazy or all three. Choosing any one fact has logical consequences for all further selections when selecting data to build the description of a circumstance, if we want to be taken seriously in our descriptions of the circumstance of M.E/CFS, then we must acknowledge the limitations that our selected data places upon us. The logical possibility that there exists a single infectious cause of world wide M.E/CFS is profoundly limited by the data most of us are willing to use; the same applies to any equation between AIDS and M.E/CFS using an XMRV/HIV equivalence.

IVI

 

[floydguy]

Scientifically the WPI work has not been validated, Singh et al have produced a study that shows why the WPI can very likely not be validated -that's progress, and the conclusion from which is XMRV was never relevant to CFS despite what the WPI claimed was the case. It may or may not be what M.E/CFS affected people want, but the researchers can't choose the results unless they are going to lie.

IVI

I disagree. The only progress they made was to show they couldn't find XMRV with their own assay. I could do that. I also disagree about researchers choosing their results. It happens and probably happens more than people care to acknowledge. Try googling MIT cold fusion 1989. You will find that MIT fudged their data to throw cold fusion research under the bus so they could continue getting Federal funding for their hot fusion program.


http://www.scribd.com/doc/3436415/MIT-and-Cold-Fusion-a-Special-Report

 

[alex3619]

Hi Jemal, my take on Singh, although I could be wrong, is that she thinks XMRV is associated with prostate cancer, but not ME/CFS. Her data should point her in that direction. Since the autopsy study was pure XMRV reseach, not ME/CFS related, it should continue. We will have to wait and sse though. Bye, Alex