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Letter from Dr Mikovits to the editor of the IACFS Bulletin

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by fred, May 6, 2010.

  1. Cort

    Cort Phoenix Rising Founder

    Gerwyn I talked to Annette Whittemore about the negative studies; she said they used methods that are used to find HIV and that is XMRV had been like HIV they would have found it. But it wasn't. This statement "f they had the will and the wit to read the paper in the first place." goes too far for me. Why is there this need to call other researcher idiots? The problem was that they didn't go far enough - didn't retest their results using different means. Even the ones in our corner (Groom, Kerr et al.) didn't do that.

    Annette was not bothered by the first studies; she realized that they were first looks at the virus - she was bothered by the public comments made by McClure and Kuppeveld.

    These researchers clearly have closed minds regarding XMRV and CFS and when they found some evidence that it wasn't present they quickly stopped and made up their minds- that was, she believed, their main problem - not that they didn't know how to do PCR!
  2. Gerwyn

    Gerwyn Guest

    There is no such thing as doing PCR CORT.Using a PCR technique constructed to detect HIV virus to detect a much lower titre gammaretrovirus was the first piece of idiocy.

    They then compounded that felony by not using replicating cells.

    You could"do pcr" untill the cows came home and never find a MuLVin the latent phase.

    The third piece of stupidity was to use a primer based on a synthetic clone.As Stephen Goff says you only need to be out on your primer by two bases and miss the virus completely.Yes the PCR approach might have worked if they were looking for a lentivirus.The point is that they were not .

    Had they had the wit and the will to read the study they would have used the right techniques.

    It would not really have made any difference as the people in the Science cohort had neuroimmune endocrine symptoms the ones in the IC cohort did not.

    The Oxford criteria exclude people with neuroendocrine immune disorders and just measure fatigue

    The Oxford criteria are home made diagnostic criteria cobbled together by four psychiatrists.The Canadian criteria were based on the consensus of many expert physicians Dr Klimas included.It might be worth asking her about the Oxford criteria compared to the Canadian diagnostic criteria.

    Using a technique used to detect the aids virus to try and detect a gammaretrovirus in non replicating cells without first validating that technique by testing its ability to detect XMRV in a known positive is about as stupid as it gets.

    What makes you think that Groom is on our side?
  3. Forbin

    Forbin Senior Member

    This quote should be nailed to every researcher's computer monitor:

    "Teach thy tongue to say 'I do not know,'
    and thou shalt progess."

    Maimonides (1137-1204)​
  4. Dr. Yes

    Dr. Yes Shame on You

    Anyone can do PCR; making sure you are isolating the right thing, and enough of it, to do your PCR on is the hard part. What I can't understand is why the scientists in the three European studies would regard XMRV as being HIV-like in the first place; the first thing they should have done was to contact the WPI and pick their brains about XMRV before designing their methodology. Using a similar cohort selection criteria and fresher blood would have been wise as well, but their methodology - specifically the absence of activation and culture steps - appears to have been the big problem.

    When Kerr and Kuppevald contacted the WPI, one would hope that the importance of those steps was emphasized, but whether it was or not they did not include those steps. One thing I would like to know for sure is whether the WPI used those culture and activation steps on the positive sample they provided to Kuppevald (which he has said was positive by his methodology too), or if they simply gave him a blood sample.

    I would think that to the WPI (and clearly to Ruscetti) the most upsetting thing in all this was the failure of both Groom and Kuppevald's groups to report the sharing of samples with WPI and the ensuing positive results -- which of course were followed (in the case of Kuppewald's group and by Wessely et al in the BMJ) by excessively dramatic pronouncements and public derision of the WPI's ethics and methods (including the continuing nonsense about contamination).

    I think it is likely that Annette Whittemore was less disparaging in this case about the quality of those researchers' science because (a) she is not a scientist herself and (b) she knew that what she said would likely end up on the internet and at this time she is more cautious than some in avoiding explosive comments. Perhaps she is leaving that to others :)Retro biggrin:).

    Personally I don't know whether those researchers lacked wit or will (the latter especially for political reasons); all I know for certain is that some of their choices were puzzling or even baffling from a scientific point of view.
  5. eric_s

    eric_s Senior Member

    Switzerland/Spain (Valencia)
    I have a simple question, and it's not only to you but also to the other people on this forum participating in the sometimes very specific discussions about XMRV and the studies done so far.

    What is your qualification? Do you hold any degrees in this field and if so which ones?

    If you do, fine, if you don't, fine too, but don't forget, the people who have done those studies are doctors and professors. They have studied for around 7 or 8 years and actually also worked in that area for even longer in most cases.
    You don't get to be a professor just like that. There are many people graduating every year (and "even" those have my respect) but only a small fraction of them will become professors.
    That does not mean that laymen (not saying that's what you are, i hope you will clarify) can't also discuss these scientific topics but i for myself think it does not really make much sense. I think laymen should make a choice about which experts they want to trust but they should not think they can seriously understand the science themselves.

    I have some serious trouble for example with your view that you have stated several times, that old blood was used, in which, as you claim, it's almost impossible to find XMRV using the applied methods.
    I can't judge this, but seriously, if it was as simple as this, those studies would have been torn apart in seconds by anyone with a degree in this field, let alone a PhD. They would never even have been published.
    Dr. Coffin, for example, who seems to be a real capacity in retrovirology and who, so far, has to a certain degree also been critical about the "negative" studies, has, to my knowledge, never mentioned this problem.
    Why not? If it was like you said, i guess his reaction would have been about the same like yours or mine, if we see someone trying to start a car that has an empty tank.

    Adressing the last sentence of your posting, so far, in my opinion, we don't have any proven method, that's the problem. Right now it's only one team (the authors of the Science study) that has made those findings. As soon as other teams will validate this, then at some point we can regard the methods as proven.
    And hey, why wouldn't it make sense to develop a different method than the one used by the WPI to in the end reach the same conclusion? I think that would then be called a validation study, in contrast to a replication study. I'm not sure about this, since, as i have stated before, i have no education it this field, i come from the corner of law, but you may correct me if i'm wrong.

    And just one more little thing. Is it so hard to add a space between the period at the end of a sentence and the first word of the new sentence? Or to use " ' " instead of " ," ? What you write would just look so much more serious then.

    Look, i'm not here to fight you, but you often make quite wild claims and you also act a little bit too much like someone who knows it all for my taste. That's no problem, i don't care as long as there are no personal attacks against me, as it's not my forum. But just from my experience, people who really are an authority on something usually tend to be quite soft spoken.

  6. Gerwyn

    Gerwyn Guest

    Microbiology No mitosis no retroviral replication. There is no mitosis in old blood it is simple rerovirology .It is basic textbook stuff.

    If you have serious problems with that would you care to back it up with some science?

    I don,t make claims which are not supported by science I leave that to the denizens of the bad science forum where such behaviour is routinely practiced

    You dont get to be a professor without being very good at obtaining funding for your department.

    There is a proven method whatever your lay opinion to the contrary.

    In fact there are 4 all clearly stated in the Science study

    .Good scientists follow protocols.Good scientists test an unproven assay against a known positive control before performing their experiment.Good scientists behave like good scientists.Titles mean nothing actions speak for themselves.

    I agree with your point that laymen should not seriously think that the can understand the science themselves.It does not appear to deter some people from thinking they can though.

    Nor does it stop them from purporting to express an authoritative viewpoint when they are merely guessing

    I think I,m much more softly spoken than Mclure and dont make wild claims like there is "no XMRVi in the uk" based on using a technique used to isolate a lentivirus and testing patients diagnosed using home made non validated criteria.

    Finally a good scientist would read papers that reveal the replicative cycle of a MuLV class virus and where it can be found and where it cannot.

    No prizes for guessing how not to find XMRV


  7. eric_s

    eric_s Senior Member

    Switzerland/Spain (Valencia)
    Yes. I won't try to do that, because, as i've said, i do not know about these matters. And so i don't pretend to do so. But i will try with logic.
    You say it's basic stuff. So i guess every B.Sc. should know, a M.Sc. or PhD anyway. Now, tell me, why would an author publish a study that suffers from such a grave, blatant error? There are thousands and thousands of people in the world (including the author's own students) who would immediately find that error and the reputation of those authors would be destroyed. Their carreers would suffer badly. So they would only do that if they were really, really stupid, i can't see any other reason. But as they are able to go to toilet on their own (sorry for the not so nice picture) and even have managed to get their degrees and positions, i think we can rule that out.
    Furthermore, how could a study that would then obviously be worth nothing even be published? The same as i've said about the reputation of the authors would to some degree then happen to the reputation of that paper. Why would a paper do that? Harm itself in that way?
    And lastly, where are the voices of all the well qualified, objective scientists like Dr. Coffin who should see that error at once and denounce it? I have not heard anyone of them mention that point (the problem with the samples' age). And why didn't we hear Dr. Mikovits denounce this? She would certainly be capable to see that error and she would have every interest in the world to point it out. We haven't heard her do that. Why?
    So, i'm not saying that i believe those studies have come to the right conclusions. And there was criticism about the methodology used in them. But for the reasons stated above, i have a problem believing what you say about that point. But anyway, it's not so important. I, like probably anyone here, am waiting for those matters to be cleared. And we can't do that.
    Unless you are talking about the National University of Corruptistan this is probably not the main criterion.
    I agree, that my opinion does not affect the quality of the applied method. But neither does yours.
    How can you state that those methods are proven?
    Yes, think the authors of the Science study are good scientists and yes, "Science" certainly has an excellent name, but if your criterion to judge wheter a method is proven or not is wheter the study has passed the review process and has been published, then you will also have to regard the other methods as proven.
    And if your criterion is wheter a method can detect XMRV in a known positive, then at least if you believe the Dutch team, you would have to regard their method as proven too, because they have stated that they were able to find XMRV in the known positive sample provided to them by the WPI. I think they did not mention that in their paper, but they have since stated this.
    Titles do mean something. That's why i wish i could have studied more efficiently in recent times. They prove that you have spent a lot of time listening to people who know about things and work in those areas daily and that you have worked with those people and under their guidance and surveillance. And that you have passed exams that prove that you have aquired serious skills. Of course, most of us have met people holding titles who have nevertheless screwed up, so a title does not guarantee that you are always right. But i will trust a person with a title more than a person without a title, if it's about a matter out of that area of science.
    I don't know if you are referring to me, but i think i have many times declared that i am not a mircobiologist or anything of that sort. But i do claim to be capable of logical thinking and i can back this up. If you mean the "no XMRV in CFS" people then you're wrong because they are not laymen. If you mean anyone else, i don't really care :tongue:
    I agree regarding the point that the statement about there being no XMRV in the UK makes it very high up in the list of wild claims. I hope this will come back to those people.
    Anyway, i hope the Dutch and UK teams were wrong. I just want to be careful and be sure before i say i know how things are in this case. This is too important to jump to a conclusion.
  8. Forbin

    Forbin Senior Member

    In his October 2009 presentation to the CFSAC, Dr. Peterson described that they were able to take serum that was frozen in 1984, thaw it, and then use it to infect cells with XMRV. Blood serum does not contain blood cells and so there is nothing there which can undergo mitosis. However, it would seem that the free virions can survive in frozen serum for decades.

    Dr. Peterson called this discovery "somewhat frightening."


    Does this mean that it should be possible to take old, frozen blood and use it to infect viable cells which can then be cultured to produce detectible levels of XMRV?
  9. Gerwyn

    Gerwyn Guest

  10. Adam


    Sheffield UK
    It would be useful for some of the new members on PR to acquaint themselves with old threads. I did this before I posted anything. On the other hand, maybe those repeating old arguments are aware of these arguments and are just looking for inventive ways in which to repeat them?

    One can only wonder why?

    BTW Gerwyn

    The shrew and the lasso is up there with the best. Coffins' grinding the sausage was pretty special too.
  11. Mithriel

    Mithriel Senior Member

    One of our problems with this illness is that our concerns sound like wild conspiracy theories because no one can believe that our opponents could do what they have done. The upcoming 5million PACE trial is using people with fibromyalgia to "increase uptake" and yet the results will be applied to people with ME/CFS. This would not be allowed in a project for fifteen year olds. Actimeters were used at baseline but will not be used as an outcome measure because "they are uncomfortable for patients to wear" How they get away with this I do not know or understand.

    If we are talking about being qualified to make statements, why do psychiatrists and behavioural scientists feel competent to make judgements on an infectious disease? In the UK, ME was renamed AND REDEFINED (!) at a small meeting of mainly psychiatrists with no input from the experts who had been treating the disease for decades not even Melvin Ramsay who characterised the disease.

    There is great concern on the scientific world these days about the integrity of science. Because of the fiscal importance of publishing mediocre studies are gaining the high ground as groups peer review each other. This is very obvious in CFS papers.

    For the XMRV studies, we must ask WHY they were done in the way they were. They should have been replication studies. If the people involved truly had our interests at heart (and they are paid to do so) they should have been keen to find out if XMRV was present.

    The first studies done should have been to replicate the method of the WPI to confirm that XMRV could be found this way.

    In any other type of study they should have used a positive sample to see if they could detect XMRV using their chosen methods.

    Then they should have tested fresh blood samples to see if their current patients carry the virus.

    And only after all that should they have tested old blood to see if XMRV could be isolated.

    There was no hurry, this disease has been about for decades. Instead we had rushed studies done with methods that worked for HIV using blood they had sitting about. When these studies found nothing, the only information they carried were that their method did not detect in the sort of samples they tested. As experiments go these did not carry very much information and did not advance our knowledge by very much.

    What they did not do was shed any light on whether the population who have CFS also have an XMRV infection which should be the question these "experts" want answered. Yet they are being used as if they are the last word and have given a definitive answer.

    It is naive to think a title is a guarantee of knowledge. The number of new ideas which have been squashed for years because the "authority" did not believe it are too numerous to mention. Science has often been advanced by someone passionate outside the mainstream. In fact a title may indicate entrenchment with the establishment and even the best of scientists will be wary about seeing a lifetime's work be shown to be wrong. Scientists have all the human virtues and vices that other people have.

    As to whether any of us are qualified to speak on these matters, like many here, my career was drastically curtailed but my mind was still clear. Obviously we can't become professors when bedridden by illness but we are widely read and have a knowledge of the literature equal to many "experts" and far beyond that of the average doctor.

    In forty years of illness these "experts" have done nothing to alleviate my suffering. In fact things are much, much worse than when I was first diagnosed with myalgic encephalomyelitis. At that time it was treated as a genuine illness like any other and worthy of proper scientific study. I will not turn off my intelligence to accept the rubbish that is being published without proper design, controls or objective outcomes.

  12. Gerwyn

    Gerwyn Guest

    I agree that it too important to jump to conclusions.People are fighting for their lives in quality if not quantity.This is why I find the veritable leap to dogmatic positions by the Europeans so abhorrent
  13. Forbin

    Forbin Senior Member


    Thanks Gerwyn! That was very helpful. That's what I find so hard to fathom - that these others studies have assumed that XRMV is going to behave like HIV in terms of replication. I saw a video seven months ago in which Dr. Mikovits stated that XMRV only replicates during cell division. How is it that I heard about this but these researchers didn't get the word? Amazing.

    Thanks again.
  14. Gerwyn

    Gerwyn Guest

    I,m glad to be of help

    Is there any chance of a link to the video.It would be good for forum members to be able to access it

    Thanks again
  15. garcia

    garcia Aristocrat Extraordinaire

    Brilliant post Mithriel!
  16. eric_s

    eric_s Senior Member

    Switzerland/Spain (Valencia)
    If you mean me, you may direct your comment at me directly, i don't mind. I don't know which old agruments you mean and to me it does not matter very much. At first, i did not even intend to post on here, even though i appreciate the forum. After Gerwyn's reply to one of my postings i kind of got dragged into this argument here because i did not and still don't agree with him/her. And i did not like the style and tone of his reply.

    But if you are implying here, that i in some way have a "dirty" agenda and am not disclosing who i am and what my intentions are (i have just read some similar sounding remarks on another thread where Gerwyn was criticized), then i will take this personally. This is very the fun stops. I have had enough CFS for myself to not find such a remark funny. We are in the same boat, like someone (in a friendly way) replied to one of my first postings. And i totally agree with that. We want the same thing. BUT i do what i do here and might continue to do it for a while, even though at this moment i don't intend to, because i don't think that some of what is said here is helpful. On the contrary, i think it hurts the cause.
    But i also don't worry, becasue i am sure that things will go their way, regardless of what anyone here does. The role of XMRV in CFS will be clarified.
    Visiting this page should erase the doubts of anyone regarding that question
  17. oerganix

    oerganix Senior Member

    I second that, Adam.

    Eric, if you are puzzled by the unethical behavior of the UK and Dutch researchers, it might be helpful for you to read some of the threads, here or elsewhere, about the decades of anti-scientific behavior of the Wessely "school", which has clones all over the world. This school has captured the UK government research programs and denies funding to any researcher who does not try to rig their studies to 'prove' that CFS/ME is the result of 'false illness beliefs'. They turn all the real scientific evidence of biological cause around backwards, rather like the science fiction novel "1984", using "unspeak" to make it seem to say the opposite of what it says. They claim that fear and laziness have 'deconditioned' persons with CFS/ME and that this 'deconditioning' produces all the symptoms and signs of the illness. Therefore, they say, and have seduced the UK government to agree, that only talk therapy, anti-depressants and exercise can 'treat' the illness. Tests for anything else, they say, only encourages CFS patients in their "false illness beliefs", so other tests are denied. They also claim that awarding disability only encourages CFS patients to "stay sick". See the youtube videos about the death of Sophia Mirza for the extreme outcome that is possible from this uncompassionate and unscientific policy.

    For the history of similar malfeasance in the US, please read "Osler's Web" by Hillary Johnson, and/or visit her blog. The CDC has been a collaborator in the Wessely school mold for over 30 years; only last year did we succeed in getting the most recent perpetrator, Bill Reeves, out of there, but his successor is still in question and the CDC is still rolling along on his agenda, doing what he put in motion. Instead of researching the well-documented fact that viruses and retroviruses are involved in CFS, his latest 'research paper' puts forth the ludicrous theory that CFS results from childhood sexual abuse and bad mothering!

    See here for a brief history of viral and retroviral findings in CFS, dating back to the 1950s:
    http://www.investinme.org/Article-365 Documented involvement of viruses in ME CFS.htm

    Here is what Dr Klimas had to say:

    In her lecture in November 2009 at the University of Miami, Professor Nancy Klimas said about viruses and ME/CFS that much of the research at Miami and internationally found that the viruses studied all have several things in common: they infect cells of the immune system and the neurological system; they are capable of causing latent infections and they can reactivate under certain conditions.

    She also said that their early work at Miami in the late 1980s (published in the Journal of Clinical Microbiology in 1989) showed that ME/CFS patients had immune activation and poor anti-viral cell function. She then went on to discuss the importance of the findings of the retrovirus XMRV (evidence of which was published in Science on 8th October 2009), saying that it was very impressive work. She continued:

    This Science paper was amazing for a number of reasons. First, this team had put together such strong science that they could go for a Science paper.
    Science is like the Mecca of publication.
    If you get your stuff in Science, thats the best place you could possibly (get it published).
    And they dont take just anything and they sure, sure, sure dont take anything unless its extremely well done, validated and tested out.

    So they took this paper they not only took it, they put it in Science Express. They thought it was so important, they published on a very fast track

    The way (the researchers at the Whittemore Peterson Institute) looked is very sophisticated

    They then tried to find (the virus) in all these other waysthey looked from a whole different angle. Still found it.
    Backed up and looked from another angle. Still found it
    they had five different kinds of ways they looked for this virus. And they were able to find the virus.
    Thats why Science was so impressed

    It is a virus that can infect tissues that arent white blood cells

    Weve always thought something like that has to go on in (ME)CFS because you all have some neuro-inflammation. Your brain has a low grade level of inflammation. And you have some inflammation in the tissues that make hormones, particularly in the hypothalamic-pituitary-axis. And this is a virus that infects that type of tissue

    its pretty impressive that out of 101 (ME)CFS cases defined by clinical case definition or a research case definition that they found 99 with the virus

    And, oh, by the way, we have a biomarker. Not a small deal.
    A biomarker the virus itself.

    No better biomarker than something thats clearly, tightly associated with an illness
    So the conclusion, it really is a big thing. Its a big thing

    That work we were already doing plays right into this. All the genomics work and all the immunology work. This is all critical to the better understanding of this illness and how this virus plays into it

    (My underlining) (In case you are not aware, Dr Klimas is both a clinician treating CFS and a researcher who has been doing real science for decades.)

    Adam said: "On the other hand, maybe those repeating old arguments are aware of these arguments and are just looking for inventive ways in which to repeat them?"

    Eric, I really hope that you are simply, so far, uninformed about the history of this illness, and are not here to repeat the old arguments. That would be extremely cruel to a patient population that has already experienced extreme cruelty for over 30 years.
  18. V99


    Look up Francis Ruscetti & John Coffin, look at what they said at the recent Prague conference.
  19. eric_s

    eric_s Senior Member

    Switzerland/Spain (Valencia)
    I intend to stop this argument at some point, hopefully sooner rather than later. For me it does not make sense to go on ad infinitum with this. That does not mean that i agree. In fact, i still stand behind the things i have said but i want to stop this.

    I will reply to a number of the points we have discussed, of course you are free to reply to that but as i have said, as far as i'm concerned, i won't go on forever.

    It does not matter at all what you tell me. (Just as little as it matters what i tell you). Can't you see that? I don't see how you can think you have any right to judge what is scientific and what is not. Who are you? I will not say this more pointedly now, in order not to put more oil in the fire.
    I would not use the word "heavily". But yes, that's true and you know that i have mentioned that myself in my previous posting. And i was glad to hear that. Because he is someone who's opinion i hold in high esteem.
    Please show me where Dr. Mikovits has made that specific point. I mean that because of the age of the samples it was not possible to detect XMRV. I don't remember reading anywhere that she has said the same thing that you have claimed to be the case. In the letter that is the topic of this thread, she was very subtle and careful in her criticism of the "negative studies" and i think that's smart. This is how sensible people behave, in my opinion. I did not see your point in her list of the possible reasons for failure though.
    I don't agree. It is only logic and reason that solves any scientific issue. An experiment has to be the result of reason and logic, else it's a shot into the dark (which sometimes makes sense too, ok) and reason and logic are needed to interpret the result of an experiment and make sense of it. Isn't this true? But i have never said that i intend to solve a scientific issue using reason and logic here. To the contrary, what i have repeatedly stated is my opinion, that we need to let the people who are really qualified and know what they are doing and talking about sort this out. Dr. Mikovits is one of them and so are the other people involved in the ongoing studies.
    Many times, don't worry. But i think mentioning this again and again does not help. What we need is more high quality studies to clarify the XMRV question.
    This is not intelligent at all. They have returned a certain result (positive). But that might be a wrong result. I very much hope it's not, but everything is possible.
    Unfortunately, not at all. If this was the case i would now be popping the champagne and kissing (even) you. Btw, i still don't know if you're a girl. In this case i apologize and would have been nicer.
    It is just as well possible that they did not find XMRV in those samples because it was actually not there. That's why i come here every day because i worry about that possibility and hope to find news here that will clear this.
    No, there are people and documents who can confirm this.

    I have read in another thread that some people are happy to read your comments because they give them hope. I respect that and i see that some people need that hope to be able to go on.
    I don't want to take away hope, not at all. All i'm doing here, i'm doing because i try to help. But i also try to be objective and honest. Because i believe this is what a person owes to others.
    i don't want people to cheer about things now and later be disappointed.
    For that reason i say, please stay cautious, those news about XMRV are exciting and promising but please wait until we have more certainty. It's good if those news give you hope, they do the same for me, but try not to see things that are not there yet. We will make progress one way or the other, i don't doubt that, but please wait until we really know. Until then, just hold on. At least this what i find to be the most sensible approach and how i do it.
  20. eric_s

    eric_s Senior Member

    Switzerland/Spain (Valencia)
    Hi V99
    Thanks. I think i have read everything that i could find about that when it happened but if you can provide me those links i will read it again. Maybe i had missed some parts.

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