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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Article: Who's In? and Who International XMRV Workshop

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 23, 2010.

  1. Megan

    Megan Senior Member

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    I'm with Otis on this. At least we have Ruscetti speaking from the original WPI study. But its disturbing that Switzer is presenting, and not Harvey Alter!
  2. V99

    V99 *****

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    Sam carter
    No where in that statement has Mikovits said they committed fraud, she said their design was so screwed up that they would not detect xmrv. The same goes for Vernon's statement about the CDC.

    Megan
    Why not Mikovits instead of Mr Switzer and Alter?
  3. taniaaust1

    taniaaust1 Senior Member

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    Thanks Cort for your well done article.

    Im starting to see how lucky we are to have Dr. Ruscetti talking on us at the conference... I think my main issue now is with the Switzer lecture.
  4. V99

    V99 *****

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    I guess it is Dr. Soriano saying he cannot find it in CFS patient?
  5. VillageLife

    VillageLife Senior Member

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    Great summary Cort!
    I just hope the tables turn when Dr Alters paper comes out, It's time for a media frenzy! :D
  6. markmc20001

    markmc20001 Guest

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    Heya Cort or anybody, aren;t we kind of half-ass official already on XMRV. it's recognized in protrate cancer, and some articles are already referring about it as existing in CFS.(read one yesterday in here, can't remeber where) Isn't it just a formaility at this point to come out and release the Alter paper? sounds like many of the other papers and stuff have already recognixed XMRV in CFS. It's just a matter of how to dump it on the public?
  7. SOC

    SOC Moderator and Senior Member

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    I think the researchers in the field take it as a given, with some reservations until a validation paper comes out. The Science paper was superb, despite the talk of the nay-sayers with an psychosocial bias. You don't get published in Science if there are any obvious flaws in the work. You can't say the same for Retrovirology, for example, but Science has a very rigorous review process to weed out all but the very best papers.

    That isn't to say the people outside the field (psychiatrists, reporters), or on the fringes (physicians, public health officials) all buy into the ME/CFS/XMRV connection. They would have to read and fully understand the Science paper. Many are still in the kindergarten "counting papers" phase of analysis which doesn't account for the quality of the research.

    A validation publication in a top-flight journal should clinch the issue, though. The researchers in the field will lose most of their reservations and the connection will be seen as fact, although more papers are always better in that regard. The Alter et al paper in PNAS should be the validation paper we need.

    Note that I've said the connection will be accepted. The causality and effect issues are still to be argued. That is, you'll hear a lot of, "Well, okay, you have XMRV, but is it causing your symptoms or is it just a secondary infection to an unknown root cause? Maybe you have it, but it isn't causing any symptoms particularly, like HTLV-1." Those are still unknown issues that we will need to fight through -- ones that stand in the way of antiretroviral treatment. The fight will not be over with the Alter et al paper.

    I think you've hit the nail on the head. What we really have is a question of how to dump it on the public. Authorities really should have more information than they do at this stage (thanks CDC and Wessely and co). My guess is DHHS is scrambling to get enough information to be able to say something more than, "Duh... I dunno". That's my theory about the delays and fiddling around currently going on, anyway.
  8. twopenneth

    twopenneth

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    This is a worrying development

    CDC on Chronic Fatigue Syndrome, Looks like the Centers for Disease control have updated the Chronic Fatigue Syndrome Pages on the website, Updated July 21, 2010

    "No diagnostic tests for infectious agents, such as Epstein-Barr virus, enteroviruses, retroviruses, human herpesvirus 6, Candida albicans, and Mycoplasma inco...gnita, are diagnostic for CFS and as such should not be used (except to identify an illness that would exclude a CFS diagnosis, such as mononucleosis). In addition, no immunologic tests, including cell profiling tests such as measurements of natural killer cell (NK) number or function, cytokine tests (e.g., interleukin-1, interleukin-6, or interferon), or cell marker tests (e.g., CD25 or CD16), have ever been shown to have value for diagnosing CFS. Other tests that must be regarded as experimental for making the diagnosis of CFS include the tilt table test for NMH, and imaging techniques such as MRI, PET-scan, or SPECT-scan. Reports of a pathway marker for CFS as well as a urine marker for CFS are undergoing further study; however, neither is considered useful for diagnosis at this time."

    http://www.facebook.com/l.php?u=http://www.cdc.gov/cfs/general/diagnosis/testing.html&h=17562
  9. Cort

    Cort Phoenix Rising Founder

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    They are digging in. In a sense they are right - CFS is such a big disorder that none of those tests results are positive in all CFS patients - altho I am surprised to see them put NK cell function in there - as I thought most people with CFS have that. Cytokine results are all over the map - there's not much consistency as I remember. Ditto for tilt table - very variable (I passed my Tilt Table test with flying colors apparently but it made it me really sick - which doesn't count). On the other hand I don't think you need to have everyone test positive for a diagnostic test to have it be a diagnostic test.

    What about heart rate variability? Low blood volume? Oxidative stress isnt much of a diagnostic tool but it is always increased. The CDC's favorite finding - low cortisol - isn't present in all patients either.

    Basically what we need to do is break CFS up; then you will have the herpesvirus subset and other subsets will presumably show up.
  10. V99

    V99 *****

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  11. CBS

    CBS Senior Member

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    I'm not convinced it's as worrying as all that.

    It very may be the way out from under the CDC 'CFS' BS. I never wanted a diagnosis of CDC 'CFS.' As long as research continues into what I have, I'd rather that the CDC stay the hell out of research into my CCC CFS/ME. Sounds like like the CDC is as anxious to get rid of me as I am to get rid of them.
  12. katieann

    katieann

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    Nothing surprises me here regarding the 'cool kids' that were invited. And as far as Dr. J is concerned? It's their undoing to leave her more time to keep her head down in the work that will have the 'cool kids' in dentention hopefully for eons to come.
  13. markmc20001

    markmc20001 Guest

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    My diagonosis with my most recent doctor went from CFIDS(at my primary doctor), to lead toxicity and chlamydia pneumonia infection recently with my current specialist. I guess I can;t have CFS, if I have lead posioning and a bacterial infection? Maybe it is all starting to make sense?
  14. katieann

    katieann

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    "Heya Cort or anybody, aren;t we kind of half-ass official already on XMRV. it's recognized in protrate cancer, and some articles are already referring about it as existing in CFS.(read one yesterday in here, can't remeber where) Isn't it just a formaility at this point to come out and release the Alter paper? sounds like many of the other papers and stuff have already recognixed XMRV in CFS. It's just a matter of how to dump it on the public?"

    Imho, what needs to happen at the federal level, is to get it contained and screened out of the blood banks.

    1) First they need to create a standardized test for screening (Even though CERUS has one that works) http://toadlily-gamer.blogspot.com/2010/05/wpi-and-cerus-confirm-inactivation-of.html

    2) The BB's are wanting to empty their inventories Before screenign takes place because it's expensive (About $70.00 per unit I have read) That takes time as well, since it is a criminally immoral thing to do.

    3) Once the invetories are emptied, and teh tests are available, teh feds will wait UNTIL they have integrated the screeing solution. Only then will they announce anything to jo-public.

    The withholding of Alter's paper is just another stall tactic to give the feds time to clean up the mess the CDC caused by ignoring CFS. They Have to have time to empty inventories, make sure remaining inventories are cleaned, and all distribution activity memos are shredded.
  15. usedtobeperkytina

    usedtobeperkytina Senior Member

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    ok, help me out folks. (sorry if this belongs in the other thread. I guess I have to post it twice.)

    Doesn't Soc. Security recognize CFS as a diagnosis that can cause disability to the point of not being able to be "gainfully employed"?

    OK, and doesn't Soc. Security require objective tests to show the person has the diagnosis? And this is true even for CFS?

    So, then why does CDC say there is no objective biological test?

    Am I mistaken?

    Tina
  16. Cort

    Cort Phoenix Rising Founder

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    I believe so. Soriano says he used the WPI's methods and he did the study in conjunction with Abbott Pharmaceuticals, who presumably know what they are doing and had a good reason to find the virus. I was told, though, that they, too, were unable to find the virus in clinically positive samples which must have come from the WPI. Thus both Abbot and the CDC are unable to find the virus while the WPI can....a strange situation.

    A New and Unknown Technique? Speaking as a laymen I wonder how the WPI could be wrong here? Dr. Mikovits has said that their tests are painstaking and take a long time to do. Unfortunately their testing procedure right now has NOT apparently been outlined; they appear to be putting patient cells next to LnCap cells and then culturing them (?) thus somehow prompting the XMRV in the patient cells to replicate. Its only after that they test for XMRV by PCR. That's my guess at this point.

    If I have that right then they are doing a disservice to themselves by not publishing their testing technique. Most studies are going by the Science paper, yes they are tweaking it a bit - but they are using nested PCR to look for sequences that WPI described and they are all coming up negative and they will probably continue coming up negative so long as they rely on the methods section of the original paper (????).

    The problems appears to be that the WPI's methods have changed over time. This, of course, brings up several questions. Why did what worked at one time stop working or not work as well later?

    If Premise A is Correct Then What Happened? Something appears to have gone wrong at some stage of the process. They fixed that by using culturing but figuring out why culturing became necessary may be a problem for them. That may be due to the editing problem by APOBEC3 in T and B cells in some patients but not others. My guess is that they don't have the reason why down fully enough to be able to explain it satisfactorily. Still they have never published their new protocol - so few people in the research world appear to be following it.

    I guess the questions are

    Is the PCR technique they are using radically different from that in the Science paper? (My guess is that it is).

    If the answer to A is yes, then why does the technique work in one set of patients and not the others?

    Since the assays are obviously the big question right now why have they not told the scientific community how they are finding the virus? They had a great opportunity with the correction in the Science Journal. (I expected that they would be outlining how to find it by culture but, as I remember, it wasn't mentioned.) Are they waiting for studies that they are overseeing that will show that the virus is there using their new techniques?)

    I'm trying to put two and two together and may have added wrong but this was prompted by hearing that Soriano is coming to the US and hearing that he tried the WPI's techniques and failed and believes its all a mistake. Dr. Racaniello alluded to this when he said researchers are, by and large, using the WPI's techniques for PCR. I wonder how many other researchers are in his boat? (Is this how a researcher that failed to find XMRV ends up leading a talk on assay development for XMRV?

    Our Rock! - On the other hand, we know that Dr. Mikovits talks to Dr. Ruscetti frequently and he's still on board - so it seems the situation has been explained sufficiently to him. :cool: When I really, really start worrying is when one of the other principals - the Ruscetti's or Silverman - starts backing away from the discovery. That hasn't happened yet; in fact, Dr. Goff who is not a principal but is a well known figure - seemed almost giddy when he talked about the possibilities of XMRV and CFS and other diseases recently. Then there's Dr. Vernon going off on the CDC regarding their test tubes - which makes me think she knows more than she can tell. (Since what she basically does is network she may know about the state of XMRV in the research world than anyone.)

    For me I go up and down like a yo-you with XMRV trying to balance everything.
  17. leela

    leela Slow But Hopeful

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    Sorry, I haven't read Osler's web and don't fully understand the crappy politics behind all this in-fighting and suppression of papers etc. Could someone help me understand why government agencies would allow and promote huge hysteria waves around the latest fad flus, but want to suppress a potentially broad-reaching epidemic of retroviral origin? Is it the factor of having a product to sell (vaccines) for the one, but not the other?
    The whole thing makes no sense to me.

    If it was recognized as a serious threat (and come to think of it, even if it was not) by the powers that be, wouldn't you think the Big Pharma people would start throwing gobs of money at research, considering the whopping profits they could rake in if they were the first to find a treatment for a pathogen that might potentially affect tens of millions of people worldwide?

    Am I missing something? Am I off-topic? Sorry.
  18. V99

    V99 *****

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    I guess the only way to know if he used the same methods as the 'Science paper' is to wait until his study is published, but others have claimed the same thing.

    Mikovit's did publish this, 'AMPLIFICATION METHODS FOR XMRV DETECTION'
    http://www.iacfsme.org/BULLETINSPRING2010/Spring2010MikovitsLetter/tabid/427/Default.aspx

    It will also be interesting to see what Alter has done.

    Right now, it's a mess, and we have no idea what will happen next.
  19. Cort

    Cort Phoenix Rising Founder

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    Thats an interesting question. The SSA does recognize tests that help buttress the diagnosis of CFS (I think) - exercise tests, neuropsychological testing, Tilt table tests, ???? -It could be, though, that those tests primarily help the SSA decide whether a patient is disabled enough to warrant disability. I'm not sure how that plays out.
  20. V99

    V99 *****

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    Leela

    I think the best way to look at the CFS and Flu is separately. They have different reasons to treat each the way they do.

    The handling of H1N1, in my opinion, was not overstated. If the virus had mutated into something serious, there would have been millions of deaths. We were very lucky. My great grandfather died just after the 1st world war from the spanish flu, and my uncle's ex wife died from H1N1, she was in her 50's and had no heath problems. So it wasn't benign, it's just didn't kill everyone who got it. I think the WHO and health services got the response pretty spot on. In fact, I would say in the UK, they could have been a little more sever in trying to stop the spread. It was the media and the public that added any element of hysteria.

    CFS on the other hand. Well, to sum it up. They never took it seriously, let it spread (perhaps), and now it's come back to bite them, and they are tripping over their feet to disprove the association, and trying to postpone the outrage, that may be ahead for them.

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