I'm sorry rlc, but what you are saying here about Dr Mikovits and the WPI just doesn't make any sense. I can't even unpick the logic of what you are trying to say, and it in no way justifies your claim that Dr Mikovits or the WPI lied.
Hi Mark, heres the reference to the WPI claiming to have samples collected by Dr Peterson
Dr. Peterson has a repository of samples from the original out break in Incline Village, Nevada which also includes longitudinal samples taken from patients from the 1980's through 2005. None of these samples were used in the XMRV study.
http://www.wpinstitute.org/research/research_biobank.html
They say
The WPI repository samples came from patients who live in many different locations around the US.
Physicians who contributed patient samples include: Dr. David Bell, Dr. Paul Cheney,
Dr. Daniel Peterson, and Dr. Eric Gordon. Other individual patient samples came from individuals who became ill while living in California, Wisconsin, South Dakota, etc.
OK: fine: so the WPI claim to have samples contributed by Dr Peterson (and others) in their biobank. In the quotes above, they say:
- Dr Peterson has a repository of sample from Incline Village.
- That repository also includes samples from patients taken from the 1980s to 2005.
- None of these samples (the samples from Dr Peterson's repository) were used in the XMRV study.
- The WPI also have a repository, which includes samples contributed by Dr Peterson.
Note that there is no claim here about what was used in the (Science) XMRV study, except to note that samples from Dr Peterson's
own repository were
not used in the Science study.
So therefore this statement by Dr Mikovits
To find the retrovirus, Mikovits and her team studied documented cases, such as CFS outbreaks in a symphony orchestra in North Carolina and in Incline Village, Nev.
We found the virus in the same proportion in every outbreak," she says. But how are people getting this retrovirus?
http://www.scientificamerican.com/article.cfm?id=chronic-fatigue-syndrome-retrovirus
Is not true, and in the part of the world I live in saying something thats not true is called a lie.
Note first that the
only statement from Dr Mikovits here is a partial quote by the Scientific American journalist saying that "We found the virus in the same proportion in every outbreak". The rest of the "statement by Dr Mikovits" is actually an interpretation of her words by that journalist.
What the journalist says is that "
to find the retrovirus" (note that this may very well
not be referring to the Science paper itself but to the work that the WPI did
before the Science study), Dr Mikovits and team "studied documented cases, such as CFS outbreaks...in Incline Village, Nev".
So in this quote, the
journalist is saying that Dr Mikovits studied cases
"such as" CFS outbreaks...in Incline Village and "found the virus in the same proportion in every outbreak". Note that the latter part of this quote is given without its context, so we really don't know what Dr Mikovits was actually claiming here - except that they studied a number of outbreaks (possibly as part of the Science study, possibly before, possibly both), and found the virus in the same proportion (roughly, presumably) in each of the outbreaks.
So in summary of that: what all of this means is that the journalist has understood (rightly or wrongly) that Dr Mikovits and team studied a group of patients or samples from Incline Village and found XMRV in them - whether this study was part of the Science study or not, we can't tell from the 11 words attributed here to Dr Mikovits.
I don't even know - still - what you are saying that Dr Mikovits said which was untrue!
Boiling down what you have said above, your 'argument' runs like this:
- The WPI claim to have some samples in their BioBank that were contributed by Dr Peterson
- The WPI also state that Dr Peterson has a bank of samples collected from Incline Village
- The WPI assert that no samples from Dr Peterson's own bank were used in the (Science) XMRV study
- A journalist said that Mikovits and team studied outbreaks such as Incline Village.
- Dr Mikovits is quoted as saying "...we found the virus in the same proportion in every outbreak..."
- Therefore the latter statement is a lie by Dr Mikovits.
I just can't even find a way to make this argument of yours into a sufficiently meaningful statement to refute it! It doesn't even make sense.
To try to help with the confusions/assumptions you may be making:
- What a journalist says is not necessarily an accurate reflection of what they were told
- Dr Mikovits' quote is partial and does not state that she studied patients from Incline Village
- The study looking for XMRV by the WPI was not necessarily just the study done in Science
- When the WPI say they used no samples from Dr Peterson's own bank in the XMRV study, that doesn't mean that they can't have samples in their Biobank from Dr Peterson, and it doesn't mean they can't have studied any patients from Incline Village looking for XMRV, and it doesn't mean they can't have studied any patients from Dr Peterson looking for XMRV
before they conducted the Science study.
You seem to have just placed a series of incorrect interpretations on what you have read, made assumptions about what they imply, taken that together with another flawed interpretation of yours of what a journalist said Dr Mikovits did, and somehow turned that into an argument alleging that Dr Mikovits and the WPI lied.
The best I can say is that you are in good company: you take my mind back to October 2009, when an army of illogical sceptics and naysayers descended on the WPI, picked every word they said apart, misinterpreted and misunderstood what they had said by placing their own interpretation on their words, based on their own prejudices, sowed the seeds of confusion, and then accused the WPI themselves of being dishonest when in fact it was the critics' own skewed perceptions that meant they were unable to read words and understand what they actually said, rather than what they
thought they meant or
wanted them to mean.
So I'm afraid, you still have nothing here, and I am not surprised because nobody has managed to demonstrate that anything the WPI have said is false, though many have tried...
The fact that they back tracked later and changed their storey months after, only after being questioned about it. Instead of immediately letting the world know what Dr Mikovits said in the Science article wasnt true, just leaves me with a very sceptical view of what their saying as it has done with a large amount of other people.
Now you reference the Science 'article' - you mean the Lombardi paper I guess, not the Scientific American article, though it's quite unclear and you haven't quoted anything from the Science article.
But anyway, there was no 'backtracking' or 'changing of the story', just a series of explanations and clarifications for people who had made incorrect assumptions and misread or misunderstood the wording of the Science paper. The process left me with a very sceptical view of the scientists, commentators and critics who were making these unfounded criticisms (and spreading a lot of dirt) about something they clearly didn't understand.
Selecting people using two very different diagnostic the CCC and Fukuda which are very different is as unscientific as it gets! And neither of these criteria defines ME, and will always diagnose a large number of people with all kinds of different illnesses as having CFS.
More illogical nonsense. The patients all satisfied BOTH Fukuda
AND CCC, and this was merely stated that they all did. It was also stated that they all presented with severe disability. In fact I don't think the actual selection criteria were ever made entirely clear; all that was stated was that all those patients studied did fit all of these diagnostic criteria. I think you need to consider the concept of subsets and note that what was stated was that the group studied were all patients who fitted all the major existing definitions of CFS. In any case, the study claimed to be a study of CFS patients, so whether their criteria defined ME is not a point they emphasised themselves, and whether their patients were ME patients or not, I don't think anybody knows at the moment; what is known is that they were all very sick and fit all of the definitions of CFS.
As is being shown by the work of Dr Hyde, Dr Mirza and the recent NHS study, if anyone is ever going to get anywhere with research then they need to stop using the woeful diagnostic criteria, and employ some highly qualified diagnostic experts who will consult with the likes of Hyde and Mirza to find out how its done. Instead of wasting every bodies time and what little money is available testing people who all have different illnesses!
Without knowing about the work you're referring to, here at least I can agree, that much more thought is needed about how cohorts are defined, and what group of patients are studied, particularly using diagnostic experts to define the cohorts, and bearing in mind the likelihood of the existence of overlapping subsets of conditions in the study design. Incidentally, the people I've seen emphasising that issue most strongly have been the NIH 'State of the Knowledge' Workshop (where it was a major theme), Dr Leonard Jason, Dr Vernon of the CAA (who also criticised the WPI, and many other studies, over exactly that point), and of course Phoenix Rising.
Id also like to point out that the WPI recent publication in which their know saying that measuring Cytokines in people with a failed XMRV test proves that the patients have CFS and XMRV is causing it, is also incredibly bad science, because changes in cytokine levels are found in thousands of different diseases including a large amount of those misdiagnosed as CFS, and you could just as easily say based on their findings that XMRV causes Major depression, as you could say it causes CFS. It is common knowledge in the medical and scientific community that Cytokines are unspecific markers found in thousands of conditions and there is nothing exclusive about them to CFS, as can easily be found by typing the names of illnesses and Cytokines into Google
I'm afraid this comment is again just more lazy thought and illogical reasoning.
What the WPI are looking at - like others studying cytokine expression in people with CFS and related neuroimmune disorders - is a
pattern of cytokine expression: a signature. Of course changes in cytokines are known to exist - in almost every disease I would imagine - but it is the signature patterns of a variety of conditions that are of interest, and the wPI are claiming, I presume, that they have identified a cytokine profile that is related to XMRV infection. There's nothing unreasonable about that - and citing a whole list of papers listing other illnesses where cytokine levels have been studied is hardly an argument for saying that cytokines ought not to be studied.
It's rather like saying there's no point in studying heart rate patterns in any given condition, because everybody has a heart. Again, I'm sorry, but your point is just illogical.
Exactly the same applies to NK cell dysfunction; it is again caused by a vast amount off different conditions and one night without sleep will cause NK cell dysfunction
http://www.ncbi.nlm.nih.gov/pubmed/8621064
Indeed: again, exactly the same applies: just because other people may have NK cell dysfunction is not a reason not to study it!
People with a ME, CFS or CFIDS diagnosis have been since 1988 and still are, getting blatantly false information from scientists and so called CFS expert doctors, which doesnt even come close to being based on easily proven scientific reality, How many thousands of people have been charged for Cytokine and NK cell tests, that prove nothing whatsoever except that your sick which you know before you have them done. There found in so many conditions that their diagnostically useless!!!
Again, nonsense. Having firm evidence that you have NK cell dysfunction or abnormal cytokine levels is both a diagnostic clue for the physician and a means to demonstrate to authorities and doctors that you are physically ill, should they question that. Just because they aren't a specific marker for ME, CFS, CFIDS or WTF doesn't mean you shouldn't have the tests done and investigate your pathology! On that argument, since there is no specific definitive diagnostic marker available, you would presumably say that we shouldn't have
any tests done.
Personally I think that the WPI could make things a lot easier for every one if they softened their stance from were right and your wrong. And instead said we dont think theres contamination in are lab, but we may be wrong and invite the like of Coffin and Singh etc to spend some time at their lab checking for contamination if they find it then everyone will know it was contamination and people can move on to other areas of research that hold promise like Enteroviruses. If they dont find contamination then they can all work together redoing the tests by the WPI methods and see what they come up with. The WPIs present stance seems to be in grave danger of antagonizing the rest of the worlds Retro virologists community who have been studying this. And no matter what happens with XMRV if things dont change to a less confrontational attitude, no matter what they find in the future other scientists are likely not to want to be involved with them, or their work.
There's quite a bit of innuendo in this and it's not based on anything I've ever seen from the WPI, though the accusation is typical. All they have ever done is defended their own findings. They found something, they believe it is true, and they have defended their findings robustly when challenged. There's no reason why they should roll over and give in unless and until they are shown to be wrong. Given the extraordinary and unfair vitriole that has been hurled at them, and the illogicality and unfairness of so much of the criticism, I really haven't seen anything from them that classifies as a 'confrontational attitude' - quite the reverse in fact: they have just defended themselves. And if XMRV works out, then what other people think about their attitude won't matter a damn.
Back to ME vs CFS...
Since you return now from criticising the WPI to discussing the distinctions between ME and CFS, I'll respond to what seems to be the state of play on this thread...because whilst I think a lot of progress has been made, I'm not convinced that the formulation you give here is sufficient for further study of CCC CFS patients who do not fit the criteria for historical ME...
Personally I think that this tread started by Tuliip is incredibly important because it is raising the awareness that ME is not CFS and that the CFS diagnosed group contains large numbers of misdiagnosed people with well over a hundred different conditions. And it is only by advocating on the basis of getting all these different illnesses separated and everybody getting their correct diagnosis that any progress will ever be made.
All research is presently a waste of time and money because its being done on people with very different illnesses as if they all have the same thing. And the belief that everyone has the same illness is exactly what the likes of the CDC and the Wessely School want everyone to believe.
I agree that this thread is a very important discussion, primarily because arguments amongst ourselves and a failure to campaign together on issues of common interest are extremely damaging to all of us. Whatever our beliefs - and they are all
no more than beliefs without evidence - about the true nature of the ME, CFS, and ME/CFS populations, there is a very strong sense in which we should consider ourselves to be "all in the same boat", because we have been lumped together, with broadly similar and yet distinct illnesses, which are not being researched or treated, and our fates are intertwined whether we like it or not: we have to understand each other to move forward.
I'm quite open to the "wastebasket" analysis, and the idea that there are subsets seems clearly correct, in some sense at least. Whether there really is any unifying medical factor to ME and CFS is actually completely unknown, however, and it is still perfectly possible that there may be. It is entirely possible, for example, that we all have conditions that are mediated by a variety of retroviruses which have similar effects. There is no doubt, of course, that many of us have undiagnosed conditions. But whether all of us have conditions that are known and that
could be diagnosed is, logically, very questionable.
So in the interests of pursuing consensus, please let's put unfounded allegations about esteemed researchers 'lying' to one side and try to be a bit more logical.
There is still quite a bit to be hammered out here, it seems to me, and I would highlight the following point from what you said above:
"ME is not CFS and that the CFS diagnosed group contains large numbers of misdiagnosed people with well over a hundred different conditions."
Now it may well be true that there are over a hundred different conditions that people who are diagnosed with CFS actually have. That is indeed a crucial campaigning issue, and it is a major thing that we should highlight from the PACE trial results, actually: around 75% of patients referred to that study were
said to "not have CFS", in which case the question arises: What did they have? Why were they diagnosed with CFS? And should not patients with CFS therefore receive much more attention to determine what they
do have? The evidence for that argument, from the PACE authors themselves, is now compelling: we should receive
more tests,
more referrals for expert diagnosis, and
much more effort into determining what our illness is, instead of being dumped in the wastebasket of CFS.
All can agree on that.
What is certainly not proven, however, is that people with a pattern of illness similar to CCC CFS do not have a condition that is the same as, or similar to and related to, ME. Given that the precise cause of ME remains unknown, it's entirely possible that the historical definition is incomplete, and that people with very similar symptomology may have a variant of the same pathology, indeed that seems very likely. It's also very likely indeed that a significant proportion of people diagnosed with CFS, whether by CCC or otherwise, are suffering from a condition that is
not known to medical science at present.
In the absence of any evidence otherwise - and there certainly isn't any - then the possibilities mentioned in my previous paragraph remain, and it does seem to me that those wishing to draw a sharp line based on the historical ME definition, and claim that everyone on the other side of the line has undiagnosed known conditions, need to be very careful indeed with their language when describing CFS patients who do not fit the historical diagnostic criteria for ME.
I have no problem whatsoever with well-defined cohorts, and the historical definition of ME seems to me as good a place to start as any. I have no problem with saying that CCC-defined research cohorts should be screened in any well-defined way that is proposed, to distinguish those in the study who have ME as historically defined; it's also right that those cohorts should be extensively screened by expert physicians to rule out other undiagnosed conditions. But at the end of the day, that is still going to leave an awful lot of people who have not been successfully diagnosed, over the course of decades, who don't fit the ME definition, but who do fit the CCC, and the further study of people with those illnesses can't be solved solely by the methods you have set out.
So I hope that sets the scene somewhat for the further work that needs to be done here: if we could achieve a consensus understanding about ME and CFS and the way forward for studying cohorts of ME and CFS patients, that would be a major step forward: I repeat that until we can achieve that consensus we will be wasting far too much effort on fighting amongst ourselves.
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