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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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CROI (Retrovirology and Opportunistic Infections, Boston) on XMRV and CFS

Discussion in 'XMRV Research and Replication Studies' started by Ecoclimber, Feb 28, 2011.

  1. Cort

    Cort Phoenix Rising Founder

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    I think you have a point. If there was contamination there, even if the mtDNA test missed something - it shouldn't have missed everything. The endogenous retrovirus origin paper, however, does not propose that little bits of mouse DNA got in there - which is what happened with a couple of studies in which what looked like XMRV turned out to be contamination according to the IAP test. The new finding suggests that XMRV was created in the lab and found its way into lab cell lines and does not infect humans.

    Just because XMRV was created in the lab doesn't mean that it can't infect humans - it can clearly infect human cells - and it could still infect humans; it suggests that there is less evidence now that it actually does infect humans and that Silverman is going to need to show viral integration into human cell before anybody buys that argument.

    This is completely different from the proposals that the WPI is mistaking XMRV for mouse DNA - which never really flew because they were able to grow the virus - so they must have had at least some XMRV in those samples.
     
  2. Cort

    Cort Phoenix Rising Founder

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    Dr. Mikovits response

    One site said this was Dr. Mikovits response

     
  3. currer

    currer Senior Member

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    Hi Ecoclimber,
    I read your latest post with great interest. (edit I seemed to miss the title where you say you are pulling out. I hope you wont do this.)

    Clearly you could push forward the research into CFS/ME, and it is to your credit that you wish to make this effort on our behalf. We are all in your debt for this, and I would like to say how much I appreciate what you are trying to do.

    I live in Britain and have been involved in the ME world for about twenty years. There is a lot of argument and dissention among patients and if you want to continue your work to help us, (and I hope you do), you will need to be prepared for unfair comments and ingratitude and attacks at times from some people.
    This happens to everyone who works in this field and often to those who work hardest on our behalf.
    My consultant, who had been outstanding in advancing the NHS provision in this country for ME patients had to endure some quite vicious and unjustified attacks that circulated on the internet. Misinformation takes on a life of its own here. I know he was terribly hurt.
    BUT DO NOT BE PUT OFF! It will be even more to your credit that you carry on despite this.
    People with ME are ill and under tremendous strain because of the stigma they carry. This disease has been neglected and misrepresented (I believe for political reasons) and sufferers carry a lot of anger which is misdirected at those nearest to them.
    You will need to develop a thick skin and become philosophical about it.

    Personally I think that there is a psychiatric component to ME as a consequence of the disease, not as a cause, and some people do become paranoid. In addition we live in a small world created by the limitations of the illness. The internet is where some people vent their anger, sometimes in an unbalanced way. This is a measure of how ill people are and how much suffering we endure. Not everyone can rise above their wrongs all the time. I like a good rant as much as the next person, especially when I am depressed and sick. All the patient charities and their leaders have been verbally attacked by unhappy patients and the ME world is riven with distrust and suspicion of each other.
    But you will have to carry on regardless because what you could achieve is better that all the criticism you may have to endure on the way, and your achievement will be lasting once the criticism has faded away and been forgotten.

    It is within your power to do good. Unfortunately it is not within your power to always find co-operation or gratitude for your good intentions.

    You are able to go out into the real world and change it. Those who criticise are ill and stuck and embittered and probably housebound. They cannot really prevent your work, at least not in the long term.
    Please put your effort into positive initiatives and forget about the other forum and its members. Let it go.
     
  4. biophile

    biophile Places I'd rather be.

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    Thanks Cort. I should have asked, "how can this be reconciled with claims of contamination?"
     
  5. biophile

    biophile Places I'd rather be.

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    Ecoclimber sounds like quite the motivated philanthropist, but I still don't quite understand how his efforts were so easily derailed:

    Funders or researchers ran away at the sight of controversy? Chicago Tribune has that much influence on peoples' views?

    A few posts on a forum managed to squash research in the real world? The irony here is that if XMRV really is just contamination as Ecoclimber seems to be leaning towards, Gerwyn et al saved Miller and funders from wasting valuable resources.
     
  6. alex3619

    alex3619 Senior Member

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    Hi currer, do not be sure xmrv is buried, do expect it to be challenged - and MLVs are still important. It aint over tilll its over, but either way its about finding the truth. Getting it right is more imporant than getting a result we hope for. Bye, Alex
     
  7. currer

    currer Senior Member

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    Hi Alex,
    I agree with you that it aint over yet.
    But I dont want to get too focused on the minutiae of PCR. I think the wider picture is just as interesting (if not more). The most interesting thing to come out of the WPI for me was the link between CFS and autism and cancer in families. That would be really interesting to investigate and not as bewildering as trying to find out what is happening at cellular scale where we can only test at the limits of detection.
    If the autism cancer cfs link is really there there must be a cause and it must be looked for. It is outrageous that proper epidemiological studies have never been done in this disorder when they are so obviously the first step and easy to do.
    I really hope this conference isnt set to halt other research into CFS - research that has been needed for a generation.
     
  8. SilverbladeTE

    SilverbladeTE Senior Member

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    Currer
    oh I agree that this damn illness causes psychiatric problems, as noted in my post under "symptoms" other day
    it's a NEURALOGICAL and chronic illness that causes pain and nasty symptoms, so it would be bloody remarkable if it didn't cause serious personality and memory issues ;)
    Lyme for example carries extremely high risk of driving untreated folk to suicide/self harm...no one but an appallingly ignorant or evil person would suggest that is a "psychological illness" though
    Same with rabies, syphilis and many others such as surprsingly, bladder infections often seriosuly affect the mind, also, toxins, such as mercury ("mad hatters disease")

    Alex
    yes, this is NOT buried! :)
    as I said, look at the incredible load of CRAP that went on about HIV research, that was ridiculous behaviour etc between research groups, ugh
    Never mind the uttelry VILE, depsicable bigotry and COWARDICE the US government especially showed, Reagan buried his friend Rock Hudson and still not much was done because AIDS was reviled as a disease of "god cursed deviants"..O M G!!! how backward :(

    Likewise, ME/CFS disease has, IMHO, been deliberately manuipulated to the press and public ot appear to be fraudulent, a "mental disease of "malingerers and hysterical women who jsut need a slap in the face"...this is classic, brilliant, effective but evil misdirection
    Such attitudes also imbed themselves in researchers! researchers are *HUMAN* and fall prey to Human foibles like anyone. Many though are hopefully enlightened enough to see through such, or intellectucally interested to learn the actual facts.
    Also, this affects research, with HIV no one wanted to touch a "gay plague", so they had trouble getting funds...same with us.

    I'll explain this again to those who think "they are out to get us" (yes they are, lol)
    there's no "Illuminanti" trying to bump us off, but there IS a web of vested interests who want us to die off, to go away, to stop costing them money or drawing attention to somehting they want hidden.
    they can and will affect research, by not funding some researchers who may find the truth, or funding those they think will not.
    So this weights the odds against us.
    Again though, most researchers are honest. But the funding issue can massively skew things to look worse than they are.
    If only 2 researchers who can find (+) XMRV issues are funded, but 20 researchers who can fined (-) XMRV research are funded...does that really mean XMRV is not real? it's statistcally skewed so it's hard ot tell the scientific "truth"


    For example, during the 50s/60s even early 70s, the tobacco companies had utterly evil, foul schemes to skew research and public opinion on the dangers of smoking. (I cna go get links if need, to back this up)
    they could fund an honest researcher, even without them knowing it, who the tobacco companies felt their research would show little or no harm
    others they outright bribed, even if the researcher believed themselves honest, the huge grants etc naturally skewed their findings because they wanted to not upset their patron....

    please go read up on psychological warfare, the Public Relations and advertizing companies, and the insane and enormous programs of public manipulation the East and West got up to in the Cold War and afterwards many from that crap started to sell their tricks to corporations and governments.
    Ever seen the film "They Live"? simplistic and humourous but has a damn good point: we're bought and sold, manipulated, from day we are born (though it's not a bunch of aliens, lol).

    http://www.dvdactive.com/images/reviews/screenshot/2009/4/theylivebdcap3.jpg

    In an ideal world, all research would be completely neutral, pharma corps would be banned as monstrous parasites and mass murderers (hey if you fake safety studies and folk die for profit...WTH else is it then?), and governments would ring fence and be seperated from chosing what gets researched, leaving it to committees of experts, except in crisis...things could be so much better.

    All honest research is needed, even inf negative, because science works by DISPROVING things, not by "proving" them.
    Alas, we do have reason to be skeptical and worried, and all that and illness = paranoia :/
    neither side though has right to be 100% sure (on any science issue actually), too much evidence supports XMRV as a live virus for it to be ignored, but the negatives do have points. IMHO, it's about 90% (+) for XMRV for a few reasons, but it's still very early days so it's a "narrow 90%". I could be wrong. It's when folk think they cannot be wrong *at all* we get problems.

     
  9. eric_s

    eric_s Senior Member

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    Thanks, Ecoclimber. I appreciate it. To be fully honest with you, of course i, with the information i have available, still am not 100% able to exactly know what the truth is. Of course there never is 100%... And please be aware English is not my native language, so things might come across slightly differently than how i mean them.

    What you say you have done sounds great. Please, later, take some time to reconsider. Here is my take on things... I'm not a money type of person, but in the end, we live in an economy based on money. Money is what will save our lives, if anything. We need research and this has to be paid. That's why i'm planning to try to work much more on this and in a couple of weeks i will have time to do more. We need to try to make funds available from all possible sources, ourselves, private money from sources not related to ME/CFS and public money.
    People like you and the people you might have connections to are what we need. I think internet forums are a good thing, but our efforts in the end have to go through other routes to be succesful. It can only work through "real" organisations like foundations, associations etc. Only this can provide a sufficient degree of organisation, seriousness, is possible for the public to grasp etc.
    I have sympathy for anyone with ME/CFS because i know what it means. But nevertheless, please don't let what happens on internet forums influence your decisions too much. Work with other groups, like you say you have (WPI, CAA etc.). I also share this concern that there is too much infighting, too little cooperation within the ME/CFS community. We have no chance like this, unless things are already set to unfold in the best possible way by now (XMRV to be confirmed, massive funds being poured in etc.)
    It's clear that our nerves lie blank, but nevertheless, one has to say that being sick does not mean one is exempt from the law. You are still responsible for what you do. We have to pull ourvelves together and be careful.

    If what you say is true, Ecoclimer, thank you for all you have done. I am ready to work with someone like you as well as my health allows and i will do whatever i can. You or anyone else may contact me anytime. I'm in Europe, so this might open up new possibilities. We have to make sure that sort of cooperation is possible, this is where we have to get. If we could get philantropists to help us, it would be great progress. And we do deserve it a lot. Don't let some bad experiences fool you, please. I'm ready to be the middleman and take the heat, if necessary, even if that's not really what i need at the moment.

    In case you or anyone else is interestend in some of my background... I was born in 1979. I have ME/CFS since 1998. A bit more than one year before finishing high school. Before this moment, i used to be quite fit, did a lot of sports, anything i like. Ok, i liked to drink a bit on weekends etc. but who doesn't at that age. All my friends who did the same are well. Some years after the onset, i started studying law, but it was impossible to do at a regular university so i had to give it up. So i started with a distance university. I have studied long enough by now to be a Dr., but thanks to ME/CFS i have not finished it yet. With this illness you have no chance to achieve or do a lot. We need people to help us. We also need to do much more ourselves, i realize some people can't do much, but others can, with limitations. So i hope you see this is the right place for a philantropist.
     
  10. LaurelW

    LaurelW Senior Member

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    Dear Ecoclimber,
    I'm really sad that you are pulling out of ME/CFS research due to the actions of a bunch of rabblerousers, most of whom got kicked off of this forum for bad behaviour. The majority of us are good, polite people who are really suffering and very much appreciate the contributions you have made to this field so far. We really need people like you to be our advocates! Please reconsider.
    Thank you!
     
  11. consuegra

    consuegra Senior Member

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  12. Cort

    Cort Phoenix Rising Founder

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    The family history connection is one of the more interesting things to come out of all this. I don't have autism or ADHD or MS in my family but we do have autoimmune diseases and I've talked to several people with family histories very similar to those that were mentioned.
     
  13. SilverbladeTE

    SilverbladeTE Senior Member

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    Currer,
    cheers! :)
    for all that I bitch n' moan, I love a laugh too, hehe
    I'll need to get back to making art if I can recover from this bloody chest infection, sigh :/
     
  14. Cort

    Cort Phoenix Rising Founder

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    Ecoclimber and I talked about this several times. I felt he was worried too much about the negative press the Dusty Miller study was getting but he does come from the corporate world and he asserted that corporations really dislike getting associated with things that get bad press. Dr. Mikovits to the Chicago Tribune cast her in a bad light - so he didn't feel he was going to be able to get money for her. The CAA has its problems with the patient community - so there were problems there. Dusty Miller was being called all sorts of things which might be problematic for Fred Hutchinson. I don't come from the corporate world (lol) but I thought - is it all that bad, really - a bunch of patients upset on the internet? He thought it was.
     
  15. currer

    currer Senior Member

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    Re cancer autism and cfs - research here could reveal a cause - as with the XMRV hypothesis.
    Too much research is symptom based - and that doesn't take us very far. While it is true that many diseases are effectively treated without understanding of their causes I feel research should look for a CAUSE for a disorder which appears to be acquired, and has spread so rapidly in the last thirty years.

    Cort - the reason there is dissent in the CFS world is because decisions and choices made here are important and impact on people's lives. Of course feelings will run high. People are really suffering. Look at the flak the WPI will take if XMRV does not work out.
    We need people with courage to get involved, and yes, it will sort out the men from the boys! Thats reality - its not always pretty!
     
  16. Cort

    Cort Phoenix Rising Founder

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    I just want to acknowledge that based on my conversations with Ecoclimber over the past 9 months or so this is all true. He has shown an amazing commitment to network and work -particularly since his health is really, really poor. He is another person whom I wonder how much progress we could make - if he could just get healthy.

    His help with the OFFER computer and software fundraising event was critical. We talked many times about getting the WPI, first, and then the CAA, later, up on the MS Alumni (fundraising) site (Phoenix Rising?? :)) and getting Dr. Mikovits and then Suzanne Vernon an 'in' to the grant review committee at Microsoft.

    He went to great lengths to get Dusty Miller involved. We had a fascinating interview (never posted unfortunately) but the Miller study was derailed by a number of reasons; the uproar at the ME/CFS Forums hurt and probably made Miller gunshy about contacting the CFS community but my understanding was that after talking to other retrovirologists who were interested/doing similar projects - he also decided that XMRV's chances of working had faded considerably. (Miller's alternate route if the direct 'contact them on the Forums' approach was too much, ironically was to get patients from Dedra Buchwald's clinic - not the place we'd exactly want him to go -but that was the direction he was being pushed in).

    Ecoclimber talked with me about the Paul Allen Foundation and the Dusty Miller invitation and contacting congressional people in his area as well as Miller's and Mikovits ultimate agreement on the study - which, unfortunately, has not taken place. Ecoclimber may have some outbursts at time but he is willing to network like no one else I know, really.
     
  17. Cort

    Cort Phoenix Rising Founder

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    Well aware of that curer :) (believe me). Alot of people, patients and researchers, have alot invested in XMRV turning out. It did seem to be the turning point for us. I thought it might be the biggest turnaround in medical and public opinion of any disorder anywhere. There would be pre XMRV and post XMRV - two eras divided by one research finding.

    XMRV is taking some big hits right now....but the BWG and Lipkin and Singh and GSK/CAA studies are very important. No one has tried to show XMRV integration into human DNA of CFS patients. If they could do that that would be big. If the WPI can identify XMRV positive samples correctly in the double-blinded BWG test - that would be big.

    I think the negative stuff at the Conference is inferential - it's not positive proof. It's like the Hue paper - the Hue paper raised some red flags, the other Retrovirology papers raised some more, the endogenous retrovirus paper raises some more and XMRV will surely lose more support among researchers - but they don't actually prove that XMRV is not an infectious virus in CFS. Some researchers - we'll see how many - will say the chances of it being that are so small as to make that proposition untenable. Others will argue otherwise...that there is no proof that the XMRV in CFS did not come from people (but somehow got into the samples).

    Showing integration into human DNA would be a big step forward....
     
  18. eric_s

    eric_s Senior Member

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    Bill and Melinda Gates Foundation... do you know what this means? It could well mean our ticket to health in a reasonable time. I don't want to sound cynical, but that's the way it is.

    So here is another suggestion. Ecoclimber, you say you prefer working behind the scenes. No problem. But i think we would have to find a way so that it's possible to be more transparent about things. I believe if people truly knew who they are dealing with and could see what chances this means, they, or at least the vast majority of them, would be very grateful and things might work much better. I'm not asking you to disclose more about yourself, just maybe think about how it would be possible to achieve this. That it would be better possible for people to trust someone like you. For example you've said you've tried to work with Annette Whittemore. More or less everybody on ME/CFS Forums would support you 100% if they had heard about this from her.
     
  19. currer

    currer Senior Member

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    I did not know ecoclimber was himself ill. He deserves sympathy for the stress he has been under.
    My consultant was a leading figure in Britain who tried ( and largely succeeded) to improve provision for CFS patients in Britain. he told me that he urgently wanted to get more doctors to take an interest in CFS/ME as he would be retiring soon but that we were known as a very difficult patient group ( vicious internet attacks on doctors being relatively common ) and new doctors were unwilling to get involved. After all they could make more money in another specialty and never have to face all the grief we would give them.
    So this only leaves those with a special interest (like having ME themselves, or having a relative with it) available to the patient community - so that is only a small group.
    However I dont blame patients, mad though they may be. Crappy said neglect was a form of abuse and if only it were only neglect! We are damaged by the attitude of the society we live in and this damage shows. But it takes an exceptional person to see the truth of this and that we are nevertheless still deserving of help.
     
  20. akrasia

    akrasia Senior Member

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    Cort wrote:

    Dusty Miller approached this community in a way that was unethical: he hadn't received IRB(Institutional Review Board) approval of his protocol.

    He wanted to use an untested assay that, as I understand it, would falsely indicate contamination when people were actually XMRV+, undermining the work of the WPI. This is a very important issue. Until things are much clearer people should be very chary about participating in experiments which are using this assay. As I recall, he wanted to perform a "definitive" study.

    Miller claimed to have a great familiarity and sympathy with the political issues animating the M.E. world. If he did and still was going to enroll patients from Buchwald's clinic, which views the disease as factitious, then he was not truthful.

    If his commitment to the XMRV project could be swayed just by virtue of his conversations with other retrovirologists what does that say about his earlier assertion that he was on board with the association of XMRV and M.E.?

    His participation on me/cfs forums was not as innocent as you describe; he gave as well as took. If a handful of voices, some abrasive perhaps, could sway this scientist from significant research, what sort of scientist is he?
     

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