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A Moment of Reflection: Please Read!

Discussion in 'XMRV Testing, Treatment and Transmission' started by Ecoclimber, Jun 5, 2010.

  1. garcia

    garcia Aristocrat Extraordinaire

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    Hi all,
    some good posts. I just wanted to point out that an individual testing negative for xmrv does not have any bearing on the potential role of xmrv in ME/CFS. We are still in very early days and the tests are not 100% reliable, in particular false negatives are common.

    I would urge anyone who wishes to draw definitive conclusions from their own test to wait until the testing becomes more reliable.
     
  2. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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    And the average term of western governments is ..............(?) - in other words, they are short termists with one eye always on their own re-election. They are therefore not likely to take risks by making spending commitments to long term research programmes into low priority diseases such as ME/CFS, for which they themselves will not get the credit at the ballot box.

    TGOP
     
  3. judderwocky

    judderwocky Senior Member

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    thank you soo much. i really needed to hear that. i have been increasingly isolated since i got sick and its nice to know i have a positive effect on others. sometimes, when you are couped up and alone you just begin to see the negative way you impact others... how they have to compensate... even when people are being nice i still feel conscious of them "altering" their plans... ive been brooding the last couple days and this was a very nice thing to say :)
     
  4. gu3vara

    gu3vara Senior Member

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    I agree with you, it seems like the person who started this thread is worried to be left without diagnosis because he don't have XMRV. But in these early days, I wouldn't worry much about a negative results atm. I even wonder if it is worth spending big dollars on tests right now, even an early positive result could be debated as reliable by a doctor and he could very well ask you to have another one when a standard test will exist.

    My guess is if CCC CFS sufferers test massively positive for XMRV and it's proven a cause of CFS, I'm 100% sure I'll have it as I fit the CCC, in blood or in tissues somewhere...
     
  5. judderwocky

    judderwocky Senior Member

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    i think the expertise is another thing ... the wpi collaborated with several other groups.... all with very very long histories in infectious diseases and retroviruses... each of the failed studies had one thing in common... the psychiatric experts in each study were HUGE pushers of CBT for a very wide range of diseases and disorders.... even looking back at some of their other studies... if some compound or medicine was found to show a benefit to people with CFS... the one that comes to mind is carnitine... then they were in some cases the lone group publishing a study saying that the medicine or supplement didn't help... at least thats how it appears to me. there is a difference between stonewalling research and offering a genuine second opinion... i feel like they cross that line repeatedly... and i can't help but think at times it comes down to a mixture of expertise (they are usually "bleeding" over into research areas that are not their speciality) and simple hubris. cbt has a place in helping sick people... it just shouldn't be an excuse to do nothing else.

    also.... as a side note... has anybody noticed that a few scientists have managed to cure obsessive compulsive mice with a bone marrow transplant... turns out its actually just an immune disorder... and yet the primary treatment method is anti depressants and CBT ... rofl.
     
  6. Bob

    Bob

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    Yes, I noticed this news as well... It seems that many psychiatric disorders are being proven to be physical in origin... There's also been work on depression which links it to the immune system and inflammation... This makes a lot of sense to me, having experienced depression from a young age, which I always attributed to genetic or other physical causes, rather than psychological causes. Actually, CBT never even made sense to me as a treatment for my depression... I never considered myself to have 'faulty' thought processes as a cause for my depression... my thinking always seemed very balanced and realistic, especially when compared to many people I've known in my life!

    (apologies for being totally off-topic)
     
  7. VillageLife

    VillageLife Senior Member

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    Yes I agree we all have to be open minded and perhaps not get our hopes to high but pre-October I was suffering from TERRIBLE depression, I had been suffering from this for 11 years since I got ill at 14...and in the last 6 months my depression has basically gone.
     
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Great thread! Excellent comments by Shiso, Cort (#52), Sing, omerbasket and especially garcia, alex3619, Sunlady, dannybex, dysautonomiaXMRV, ixchelkali and Mithriel among others!

    Cort, agreed. The chances are very high that XMRV is meaningfully associated with ME (and imo probably causative to a great extent). Even if XMRV is shown to be only partially causative in a minority of patients this will go a long way toward changing mindsets which now cause our biggest problems- underfunded research, lack of treating physicians, lack of belief, shoddy treatment of pwME, lack of research into biomedical explanations, massive iatrogenic harm to patients with GET etc.

    At the least I think this will turn us in, hopefully, short order into an MS- a serious neuroimmune disease that is recognised as such despite there being no recognized physiognomic biomarkers (only 80% have the sclerotic plaques detectable on MRI) and mostly unknown cause and little effective treatment. As bad as that sounds, being in the position of an MS patient is a hell of a lot better than our current situation. And we could very well have somewhat effective treatments in two years and substantial progress towards others.

    Things are getting better, but we have to be outspoken with the truth to make sure we get what we deserve- equal treatment.
     
  9. Cort

    Cort Phoenix Rising Founder

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    Lots of insightful comments.

    I really think the yuppy flu idea is over in the media. Personally, at least in the US, I think the disease is kind of at crossroads; my guess is that many doctors and researchers don't think it's psychological but they just don't know what it is - we're in this kind of neverland.

    One of XMRV's great graces is to potentially put us somewhere definitive. Once that happens we have the benefit of being embraced by the institutional powers. We're not embraced by anyone right now; instead we're in a little office off to the side in the NIH that has no money and no power. If XMRV wins out we get embraced by a big network of scientists that have institutional capacity to get funding; they have the connections and can get their grants passed. They are on on the inside looking out; our researchers have been on the outside looking in - a very different story.

    Like Dr. Vernon said, if XMRV turns out, it turns CFS in an 'intense and fundable' disease - that's what we've been wanting forever!

    (Really like this thread plus Justin and I agree. That makes the whole thing worthwhile :D)
     
  10. Cort

    Cort Phoenix Rising Founder

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    I actually don't think, at least in the US, that we are badly served by the media any more. I think those days are gone. They certainly get things wrong (they are the media :)) but the pieces I read now usually portray CFS as a serious altho mysterious disorder We've had some great pieces this year. I think we're slowly winning the battle of public opinion.

    The big problem, for me, is the research arena where entrenched ideas must still prevail - I can't imagine how else to explain such lousy funding after all the wonderful (horrible) statistics that have been dug up.

    In the popular media I think we've turned the corner in the US.
     
  11. citybug

    citybug Senior Member

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    I think Eccoclimber post was well thought out on many points and am glad to see other sides in the debate.

    I personally think XMRV puts all the pieces together and there hasn't been anything near the caliber of the study that could negate it. If somehow some freaky thing turns up which no one has uncovered so far, it is great science done the best way humanly possible. WPI is our strongest research institute, and in the best position to find how CFS works. If they were dead wrong (which does not seem to be the case) we still should be supporting them 100%. And have money ready for them for the next study. It's our institute. The money isn't coming from anywhere else. How much Nobel prize winning caliber research do we have?

    Most proposed CFS studies (I don't know yet what some new ones are up to) look weak to me, looking at the elephant's trunk or tail, or something 20 feet away from the elephant. Even if they are good they are scattered in many pieces. Montoya, Lerner and Chia's studies (good) could tie in with XMRV. The Sharma monkey studies showed XMRV populating the gut. Mikovits talked about XMRV and co-infections in the IACFS Q&A.

    I was going to say I'm afraid I'll test negative too, and I think the main reason the forum isn't 100% behind the finding is the negative tests that we know about. But now I'm remembering that XMRV isn't primarily in the blood, and WPI who runs 4 tests keeps finding it. No one has looked at lymph nodes or gut tissue or bone marrow yet (Sharma monkey study is in CROI thread). We need the research to focus on XMRV until it is completely checked out in every possible direction.

    I'm afraid that the retrovirals will be too difficult. But WPI is looking at Peptide T and hopefully other peptides that some say might be milder. If they had a lot of money they could be looking at more treatments, reservoirs of infection, and trials with the antiretrovirals.

    What I'm most afraid of is stupid little studies, naysayers, what is the word for just tuning ou--apathyt, and the research being dropped. There are a lot of patients and doctors who will not even consider the possibility of XMRV because of the other viruses that have come and gone. I think this is a very real problem in the patient community (afraid to get burned again). It even affects the CFSAC meeting. Why weren't they asking more about what's going on with XMRV?

    We're waiting like little children. All these XMRV studies could be in the works now. Ask for the funding. All studies are experiments that you don't know if they'll pay off. It's best to be reasonable and not strident in letters to government and corporations, but if public opinion says Research XMRV it drowns out the small stuff. Sometimes nobody does a replication study. We don't have to wait for one. A replication study would be nice, it is the gold standard, but we have no control over that. Lots of research can happen without one that could wind up providing corroboration. Since we don't have one yet, keep going with other XMRV projects.

    What I want most is that multi-arm treatment study and testing of more patients from every CFS doctor by WPI under research conditions.


    Mark said he had ideas for small studies. I'd like to hear those ideas. I think PR could fund a small study with an article on the front page like for Bateman, or try to get something funded. We could fund testing at WPI for a small group who were found negative by other means, or some other tests on a few non-positive people. Something to answer the questions of people here. Send some of Chia's biopsies for testing.


    Quote- Last weekend's thread about the delayed press release from the CDC concerning xmrv and CFS, demonstrated the angst among many of the forum members regarding xmrv and CFS. The discussion worried me as well as, I am deeply concern that if xmrv doesn't pan out as expected, this will cause a devastating impact on the emotional well being of many members on this forum. Endquote

    We really get into rampant speculation here. Every time I want to say, let's stop speculating on some thread, I start wanting to speculate too.
    I'm comfortable with all the debate among patients. But if efforts to turn down debate and discussion come out of trying to use the internet profile, I think we should have a private or members only section for heated or speculative discussions (all?) rather than censorship. Censorship will kill the forum. People are starting to leave. This is not a news organization and most articles are blogs with a healthy dose of personal opinion. There could still be high profile public articles and reference areas or other public areas to attract people to the site.

    I do totally disagree with Eccoclimber regarding non-FDA approved prescriptions. The person reporting here lives outside the country and is not subject to the FDA. I think there will be more people trying antiretrovirals on their own if trials aren't funded. It's up to the patient and doctor.
     
  12. Impish

    Impish Senior Member

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    Wow... what a great discussion. It is nice to see two sides argued without name calling.

    I have a bit of experience with the pharma industry (but I am no expert). Here is my limited knowledge of off label uses of drugs. When you create a drug it has to go through a stage gated process for approval. It is very very expensive. Out of the pool of potential compounds that you start out with in the drug discovery phase very very few make it through to actually generate revenue. Clinical trials are very expensive. All of this means that you are economically pushed towards creating drugs that have the largest potential revenue. This means targeting something that presently has no cure, something that is require a long term use of the drug, etc. You also tend to target one disease at a time since in general you have to run a separate clinical trial if the drug is going to be prescribed for a separate condition. For example CelCept was/is used to stop organ rejection in transplant patients. It was also known that it might treat Lupus. The drug company first ran clinical trials for organ rejection and just finished Lupus trials. In the meantime doctors were prescribing it off label. My understanding that the use of off label drugs is well known in the medical industry and that in some cases new drugs have been rejected by the FDA as they don't respond as well as off label use of an existing drug for a particular condition. So this is a long winded way of saying that just because the FDA hasn't approved something for treatment doesn't mean that it isn't known that doctors use drugs for off label use. It isn't considered unethical as far as I know but rather a generally accepted practice.

    It is a well known fact that the human brain tends to see patterns where there is not one. That being said, several pieces seem to be falling into place for XMRV as a potential cause (although I have my concerns).

    1) The CROI animal study (mentioned above) found almost no virus in the blood of the subjects. It instead was in other tissues and the lymph system. This would explain why people have had such a hard time finding it.

    2) The class of retroviruses that XMRV is in causes similar immune disfunction as seen and documented in CFS suffers in other species.

    3) The german study using throat swaps found XMRV in the same number of health people as WPI. The throat contains a number of connections to the lymph system so it makes sense that it would be easier to find there.

    4) Crimson crescents. These were found in CFS patients as well as 3-5% of healthy controls. These could be the result of the virus? Wouldn't it be ironic if all it took to diagnose XMRV or CFS was looking down peoples throats...

    Again, until we have a replication study all of this is really speculation. That is really what is required.
     
  13. redo

    redo Senior Member

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    Well spotted Impish.
     
  14. Impish

    Impish Senior Member

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    A nifty study would be blinded throat swabs from controls and CFS patients with or without crimson crescents and/or with or without XMRV confirmed by another method. They could use the German method of finding the virus. I don't know why everyone seems stuck on blood since it has been shown to be a problematic way of finding the virus and in the animal models was barely found there.
     
  15. redo

    redo Senior Member

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    Yes. When the blood is not the reservoir, and it's in low concentrations in the blood, why be so determined to look there.

    I spoke with a researcher working on XMRV (non published), and he said his test was so sensitive that it'd pick up XMRV if it was in significant levels in the blood. I am not to judge if that's true or not, but looking elsewhere seems like a good strategy.

    Why don't you write the germans Impish? I think you could spark som interest.
     
  16. acer2000

    acer2000 Senior Member

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    Exactly. I don't know why doctors and researchers are so stuck on blood samples. They have been looking in the blood for 30 years in this disease and found next to nothing. Why not take some hints from the animal study and look in the GI tract and Lymph nodes? It seems like a no brainer.
     
  17. Impish

    Impish Senior Member

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    I think I might try and suggest this to someone for sure. I think I might try posting on the virology blog to see if I am out to lunch or not first...

    Too funny about the researcher with the ability to find XMRV in the blood. Here is the exact lines from the CROI animal model testing report. Maybe you should email the article to the researcher you know. They literally say below that the viral load in plasma was undetectable. Why waste your time with blood if you know this is the case.

    Both methods were concordant for the detection of XMRV in the various organs tested and showed a wide dissemination of replicating virus even when the plasma viral load was undetectable. Of interest was the finding that isolated lymphoid cells and primarily CD4+ T cells were found positive in most lymphoid organs including spleen, lymph nodes, and gastrointestinal tract, while in lung, XMRV+ cells exhibited a macrophage morphology. The frequency of infected cells appeared to decrease in spleen while increasing in the gastrointestinal tract from acute to chronic infection.
     
  18. alex3619

    alex3619 Senior Member

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    Hi acer2000

    I agree with you and everyone who has raised this point. I think there is a well established principle in modern biology that most infections are not found in the blood. Maybe medicine could learn something from modern biology. Throat swabs are not a huge deal, and can be one easily in a doctors office. If this technology works, why not use it? The issue, at this point, is more about which is more accurate at reasonable cost. I have long been aware of the research that showed viral infection in muscle and gut - so I have long wondered why more tissue biopsies have not been done in research. While all biopsies pose very slightly more risk than blood samples, typically only organ biopsies pose significant risk. Since this virus likes targeting lymph nodes, this would seem the likely place to start more testing invasive biopsies. However, if spit or throat swabs work effectively, then no further testing avenues should be required. I would not be surprised if someone somewhere is researching this right now - we may only hear about it after publication.

    My guess is that what has been historically biopsied has depended on the theory being used. There looked for enterovirus in gut and muscle, because it is known to infect both. Now we know XMRV likes lymph nodes and can be found in lungs, it is only a matter of time before more studies like this are done.

    bye
    Alex

     
  19. Mark

    Mark Acting CEO

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    Cheap and simple research proposals

    I too am pleased with the way this discussion has progressed from an unpromising start. I'm glad we didn't close the thread as some people asked earlier on...

    I've been too busy to post for the last few days, but I'm going to have a go at making a few quick points this evening, starting by answering this question:

    I presume this refers to me, since I have made some suggestions, and alluded to those ideas, several times since October. They are very simple and obvious ideas. They are what I felt ought to have happened in a rational, caring and respectful system, and I think the fact none of these things have happened is a damning indictment of the world of modern medical research (for which I have no respect left after what I've witnessed over the last 9 months).

    ME/CFS doctors, governments and researchers around the world could send samples of their patients to the WPI to be tested. I know some in the US have done this, but there's a very simple way to test whether the WPI's methods are accurate. A bunch of agencies around the world send coded blood samples to the WPI. Each agency codes an equal number of samples from their ME patients and from healthy controls. Those codes are all stored in some secure system such that WPI has no way of knowing which samples are which. WPI tests the samples for XMRV and releases those results. The codes are then revealed, and the results become clear.

    The participating agencies could be anybody, and there should be a few of them of course. Each sends about 10 CFS samples and 10 control samples, all collected in accordance with WPI's instructions.

    It's as simple as this: if the WPI could tell you - blind - which of the blood samples came from people with CFS and which came from healthy controls, then no reasonable person could then dispute that, at the very least, their test is the first ever diagnostic test for (at least a subset of) CFS. Then we could all stop messing about and focus properly on the WPI findings.

    With the 98% vs 4% prevalence - or even with the more modest 67% vs 4% - then if those figures are accurate, no more than about 20 samples would be required with this method to prove the validity of the test beyond all reasonable doubt. And it could be done, start to finish, in a few months - if the threat of XMRV was considered to be a serious one.

    Total cost of such a study should be around $8000 per 20 tests, plus the cost of drawing the blood, coding the samples, organising the whole thing etc - I can't really see why all this should cost much.

    The other, similar thing that ought to have also happened within a couple of months of the Science publication, is a variation of the above theme. 10 samples each from patients with MS, atypical MS, autism, atypical autism, GWI, IBS, and other ideopathic immune conditions...10 samples from each should be sent to the WPI in the same way described above.

    This would immediately give a very quick estimate of what the XMRV prevalence is in a variety of conditions. Whatever the results showed, they would yield an enormous amount of clues as to what XMRV does and who it infects.

    The above plan is very simple-minded, I know. What has happened instead is that a bunch of researchers around the world have tried their own methods for detecting XMRV, and unfortunately none of those other methods seem to work (with the exception of the most recent German study) meaning that in the last 9 months we seem to have learned absolutely nothing.

    Perhaps a scientist or medical researcher can tell me why my simple-minded plan - which seems watertight to me and would answer all the important questions we need answering, within a month or two - can't be done in the modern world?

    The only issue I can see is trust. If Simon Wessely sent his samples in, many or most of us wouldn't trust him and his team not to lie about the coding, and we wouldn't believe that his patient cohort was relevant anyway. If a trusted ME doctor sent their samples and the results confirmed WPI, doubtless the psych lobby would be suspicious that somebody had tipped off the WPI with the codes. So this is the area where some thought would be required - but doubtless a system could be devised with some kind of observers from both sides supervising the blood draws and the coding process.

    So scientists: is there any future for this proposal? If the medical research world can't get its act together to do something like this, perhaps a patient group - or a patient advocacy organisation - could organise such a study? I'd really love to hear whether anybody can explain why this sort of thing hasn't happened and presumably doesn't normally happen. Especially if they could provide an ethical justification...
     
  20. lansbergen

    lansbergen Senior Member

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    Blood to WPI and from the same patients and controls nose/throat swaps to the german lab.
     

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