1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Chronic Fatigue Initiative and Interview with Mady Hornig
In a follow-up article to the recent IACFS/ME conference presentation in San Francisco, and after speaking at length with Dr. Mady Hornig, 'searcher' delves deeper into the impressive work being completed by the Chronic Fatigue Initiative, and focuses in on those cytokine results ...
Discuss the article on the Forums.

Top scientists to meet at Cleveland Clinic on trial of XMRV

Discussion in 'XMRV Research and Replication Studies' started by Katie, Nov 10, 2009.

  1. busybee

    busybee Senior Member

    Messages:
    118
    Likes:
    3
    Hi Mark
    Thank you for this.

    Do you read it as a total of 10 subjects, 9 with CFS had antibodies, 1 control had no antibodies.

    Or of 10 subjects with CFS, 9 had antibodies and none of the controls had antibodies.

    If it is the second option then how many controls were tested? Considering some are positive for active XMRV presumabley there should be some controls with antibodies.

    If that makes sense.

    Bx
  2. Scavo86

    Scavo86 Senior Member

    Messages:
    129
    Likes:
    43
    England
    Second option I think :confused:
  3. George

    George Guest

    XMRV paper

    Hi Levi
    You're right about the way you're reading it. Thanks for a fresh set of eyes on the ALS abstract. Somewhere I have the full paper link but I can't find it right now. However, you're still right on the interpretation. <big grins>


    Mark

    On the science paper on XMRV if anyone wants to read the entire thing they can go to this link

    http://www.diagnosesupport.com/main/DSdocuments/XMRV%20paper.pdf

    I think this is the entire paper???? I've been reading and reading and waiting for some of it to soak in. Since, it is a PDF file I'm guessing that the paper can be quoted or reprinted without "express" permissions under fair use copyright law.

    Should some one start a thread, post it and let's all disscuss it???
  4. _Kim_

    _Kim_ Guest

    re: Mark, full-text access question

    Mark, I see no reason why you wouldn't be able to copy/paste any part of the article on here.

    WPI has a full text link to the article here

    and the supplemental material can be found here
  5. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    4
    Yes, let journalists know we are watching.

    I wrote her a short email thanking her for reporting this without the usual insulting, disdainful attitude toward ME/CFS. And I identified myself as a PWC so she'll know it is not my prostate that I am worried about. (Don't have one. Sorry for those who have prostate cancer, but I doubt this retrovirus would have got the amount of attention it has if men's health issues had not been at stake.)

    She replied that they'll be following up when there are results to report. So, let's keep commenting, keeping this story alive.
  6. Mark

    Mark Acting CEO

    Messages:
    4,460
    Likes:
    1,839
    Sofa, UK
    I refer the honourable lady to the reply I gave some moments ago...

    I'm sorry but once again I can't let that pass, because the low status of prostate cancer relative to other cancers, especially breast cancer, is already a gender politics campaigning issue for me. I think you're half-right: the retrovirus wouldn't have got the attention it has if cancer had not been involved, we know nobody gives a stuff about CFS. But if it were breast cancer that was linked to XMRV, the interest would have been even greater.
  7. Mark

    Mark Acting CEO

    Messages:
    4,460
    Likes:
    1,839
    Sofa, UK
    Nice one George! If it is dubious to post this under copyright law (as I would imagine), that's not our problem! :)

    So I've looked again for the antibody results I was referring to earlier, and as usual I had the gist right but the details were hazy...

    Check out the paragraph near to the end of the paper that starts "We next investigated whether XMRV stimulates an immune response in CFS patients", and the details immediately above that paragraph.

    The test looked for "Abs to XMRV Env" (which means antibodies to XMRV Env, I presume, so I'm interpreting this as "the antibody test", or rather, their first version of the antibody test, tentatively prototyped in this paper). In this test, plasma from 9/18 CFS patients reacted, and 0/7 healthy donors. I'm pretty sure this is what I was referring to earlier, and it looks like I misread 18 as 10 to get my 90% figure (god I hate PDF!).

    So that's what I was on about earlier.

    What it means I think is that in the initial study they did this small test on the antibodies, and it was a test based on analogy with another virus, SFFV, and results of that were 9/18 (50%) in the CFS patients and 0/7 (0%) in the healthy controls.

    As I understand it they've said, since the study was published, that they've now refined their antibody test and shown antibodies in >95% of CFS patients. Of course we don't know how many controls also test positive with their new improved tests, but as I've mentioned before it's a pretty safe bet that they've thought of that and tested on controls and the results in the controls are still negligible compared to the >95% in CFS patients.

    To sum up my interpretation of all this: they aren't allowed to reveal all of their results, but reading between the lines it sounds to me like their antibody test is now >95% reliable and rising, and over the next 6 months hopefully they and other researchers will get that reliability up to a level where they can roll things out much more widely.
  8. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    4
    Half right

    Mark, I hadn't read your post when I posted, but I think you're probably half right. ;) I am aware that prostate cancer is just now getting the attention it deserves. And that cancer of any kind is already in the research "pipeline" and mindset, so to speak. And it is probably true that at this point, there is an overreaction to breast cancer, in comparison to it's threat to anyone's health. (Men can get it, too.) Still, I seriously doubt that a retrovirus implicated in breast cancer would generate more interest than one implicated in prostate cancer.

    At the time of the beginning of the campaign to get more research into breast cancer and it's treatment, things were a lot different than they are now. Screening was non-existant. The treatment was barbaric. Routinely, parts of the chest wall muscles were removed, parts of the underarm were removed and women were left alive but unable to lift their arms or use them for any realistic purpose, with restrictive scar tissue that made movement painful or impossible. And there was excessive use of chemotherapy that was later found to be unnecessary and ineffective. There were even doctors who said that women who got breast cancer were unhappy at being women, etc., etc. Women got together to change that attitude without much help or interest from men. Perhaps men need to band together to get more attention for prostate cancer, but I see more interest in it even now than there has ever been for ME/CFS.

    The fact that the Office of Women's Health, in the US, is the only government office truly interested in dealing with CFS as a medical illness says volumes. As far as I know, there isn't even an Office of Men's Health, men being the standard to which women are derivations, or a sub-category. I'm sure someone will correct me if I'm wrong.

    I used to go to a PWC support group. To a man, the men in the group complained of being doubly disdained for having a "woman's illness". One was taunted by his doctor who said CFS is a mental illness of hysterical women, and a man who claimed to have CFS was by definition, an hysterical sissy. And he was offered a prescription for Viagra as a solution to being too "tired" to sustain his former sex life, without even asking for such relief. I might compare the research and interest in women's sexual dsyfunction with that of men's, but that would be too far off topic.

    If WPI had come out with research on a retrovirus that was solely implicated in CFS, I have no doubt that Dr. Mikovits would have been treated just like Dr. de Freitas was in 1991. In fact, Reeves attempts to do just that even now.

    So, I can't help be happy that other illnesses may be implicated in this discovery, simply so that CFS can't be, I hope, dismissed one more time as unimportant because it is a "woman's illness". I have no doubt that if 60-80% of the sufferers of CFS were men, this illness would not have been treated as badly as it has been. Witness how quickly Gulf War illness?/syndrome? was recognized and validated and treatments, however inadequate, were implemented.

    I also think it will be really interesting to see whether these other diseases siphon off a lot of the research money and attention from ME/CFS. That possibility makes it doubly important that we who have ME/CFS continue to be "squeaky wheels", crying out for greasing.
  9. Mark

    Mark Acting CEO

    Messages:
    4,460
    Likes:
    1,839
    Sofa, UK
    I love speculating too, but I doubt it will work out quite like that. For one thing, the WPI have also said that they also found XMRV expression in CFS patients who did NOT have B or T cell abnormalities. So my speculation is this: XMRV can infect all kinds of different cells, and which ones it infects will determine different symptoms. There will therefore be a variety of conditions, depending on which cells have been infected. The 3.7% of "healthy" controls will turn out to have subclinical consequences caused by infection of XMRV in cells that don't cause major symptoms. So there will be no way to draw a sharp line between XMRV+ and XAND. The whole thing will turn out to be a continuum, and even many of the Reeves-definition CFS patients who manage to think/con themselves better will turn out to have XMRV.

    So, cold_taste: I know from previous posts that you have very severe CFS, probably far worse than me. But my guess is that we both got our illnesses from XMRV, and your infection happens to have spread to more body systems than mine has. I reckon the most that science will be able to do in terms of shoehorning the continuous spectrum of XAND into the sort of tight "yes/no" definition so beloved of us dozy westerners, will be an artificial measure along the lines of "test positive on at least 4 of the following 10 tests", rather like the Canadian definition of CFS. And that definition will have no real meaning at all, other than deciding whether each of us passes the cut-off for being sick enough to get some help.
  10. busybee

    busybee Senior Member

    Messages:
    118
    Likes:
    3
    Hmmm, I do hope you're right Mark.

    Bx
  11. Mark

    Mark Acting CEO

    Messages:
    4,460
    Likes:
    1,839
    Sofa, UK
    Good post oerganix. Your points about the history of breast cancer are very interesting. I'm perfectly happy if we can agree that we're both half-right. :)

    Impossible to speculate so we'd best not bore everybody with the argument. I still reckon it would generate at least as much scientific interest, because it's highly likely the virus is involved in other cancers as well, but if prostate cancer happens to be more in the spotlight these days, that's just fashion really.

    Crucial points. Absolutely, yes, women have gained everything they have gained by banding together and fighting for their rights. I'd love to see men banding together in the same way now to fight for our rights, because there are a lot of emerging issues, and we're in a paradoxical phase where both men and women are discriminated against in a variety of ways. But I don't see much likelihood of that banding-together happening. Lest I be misunderstood, I've always thought of myself as a feminist, but men have never been thoughtfully engaged in the gender debates, and as a result we are still having a one-sided conversation which will never allow us to reach equality.

    So I'd love to see men getting together to campaign about gender issues, but it ain't going to happen because we're all terrified of being labelled sexists if we do. (Apart from me of course, I don't give a damn about anything any more, that's the good thing about having nothing left to lose. :) )

    I'm sure you're right, something similar is true here in the UK, and it gives me an opportunity to put the point I want to make succinctly (now there's a rarity!). The fact that there is an Office of Women's Health and not an Office of Men's Health is discriminatory against both men and women. Is that making sense?

    Which perhaps points to the way that men in situations such as this are now among the worst victims of sexism. We get it in the neck from everyone.

    Absolutely: I'm sure that's true. The only reason the research is even credited at all is because they already heard of XMRV in another context.

    Dead right that it's really good news for us all, it will force them to stumble across the truth in spite of themselves.

    Hmm...I can agree up to the point that if a greater proportion of CFS sufferers were men, it might have made a difference. But I would have been likely to cite Gulf War Syndrome as an example on "my side" if you hadn't got there first! Is it really the case that GWS has been taken seriously and properly researched? Here is a near-100% male condition, yet last time I looked, the scepticism from the establishment about its reality pretty much mirrored our own CFS experiences. Perhaps it got a bit more interest from conspiracy-theorists and anti-war types, because it's a "sexy" story. But they still haven't got to the bottom of what GWS really is, have they?

    So while we're on the subject, is GWS actually XMRV I wonder? Surely the symptoms are not a million miles away from CFS/ME/FM. When was that war anyway, 1991? And when did the epidemic of CFS ramp up and go worldwide I wonder? How many of us on here have been sick "for about 20 years"? Was GWS the epidemic that paved the way for the explosion of XMRV in the general population?

    To answer my own questions, I have very little doubt that there's a connection there. But I don't want to ruffle any feathers by pondering too loudly as to whether it would be possible for a biological weapons researcher to take a leukaemia retrovirus out of a mouse and genetically manipulate it so that it could infect humans via fungal spores...surely such a thing is unthinkable...neither the US nor the Iraqi military would contemplate it...

    I'm sure that will happen, just as you fear. At the same time, we'll probably get a lot of relevant research out of the XMRV studies for other conditions, so hopefully it won't all be bad news.
  12. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    4
    mountains of north carolina
    I'd kinda like to see this thread sorted out into a few different ones: ALS, cancer, the meeting. Admins, or somebody who knows what they're doing - can this be done? What with the brain fog and all, I'm not really following, but I'd like to.:)
  13. Mark

    Mark Acting CEO

    Messages:
    4,460
    Likes:
    1,839
    Sofa, UK
    Sorry about that fresh_eyes, that's my fault for letting myself get side-tracked. I agree, the recent discussion should probably be spun off into a separate thread, this one's supposed to be about the Cleveland meeting which is really important. But, sorry, I don't know how to do it. I'll try harder to stay on-topic in future.
  14. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    4
    mountains of north carolina
    No worries Mark, it's all very interesting & important. Thanks for your contributions. Maybe someone very capable will jump in and sort it all out for us! :D
  15. Aftermath

    Aftermath Guest

    Fair Use Doctrine



    While placing the full text of the article into the public domain would indeed be a copyright violation, posting a segment here of there is most certainly legal under the Fair Use Doctrine.
  16. Mark

    Mark Acting CEO

    Messages:
    4,460
    Likes:
    1,839
    Sofa, UK
    The only part of this that sounds wrong to me is that the mouse form that XMRV evolved from does not hurt mice. I thought I heard John Coffin say at CFSAC that the mouse form does cause a variety of problems for mice, which is why it's called xenotropic murine leukaemia-related virus. I thought he was saying this is suggestive that XMRV is indeed a harmful retrovirus in humans.

    (This was the part of Coffin's presentation where he referred to the one known species of brown mouse that doesn't carry XMRV, with a name sounding like 'moose' - presumably it's spelt 'mus' or something. It really tickled me when he had to clarify that he wasn't really talking about a moose here. Just why the moose is the world's funniest animal, I'm not sure).

    Anyway, sorry if this revives the confusion over endogenous vs exogenous viruses, and how harmful the endogenous ones may be. I get the impression that all this is a really fascinating open question at the moment, so we shouldn't feel bad about being confused. If I have it right, this exogenous virus has a good chance of eventually becoming endogenous in humans because once we're infected we'll pass it on to our descendents: it's in our DNA now. It has a specially good chance of becoming endogenous in humans if the CDC manage to fob us off again...

    As to how these retroviruses manage to 'jump ship', well HIV and XMRV came from mice and monkeys. These are of course two of the most widely-used animals in medical research, but that's because of their genetic similarity to humans so it's perfectly possible that they didn't 'jump ship' in the laboratory. The most extreme case of MCS that I've ever heard of in the UK is a former bioscientist who used to experiment on mice a lot and now lives a bizarre life in the middle of nowhere, but again, that could be a coincidence. Lots of MCS/CFS/ME/FM/XAND cases that I know of seem to have been contracted on university campuses, which may also be suggestive of the origin of the term 'yuppy flu', but again this is all circumstantial.

    Actually, I don't really buy the animal-lab theory, intriguing though it is. My personal pet theory is that mold/fungal spores are involved in transmission, which might explain 'Sick Building Syndrome' outbreaks and the Incline Valley hotspot (I've read there was a weird fungus in the area just before that outbreak started).

    Anyway, this thread's supposed to be about the big meeting at the Cleveland Clinic - is there any news about that yet I wonder?
  17. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    4
    mountains of north carolina
    My understanding of the point Coffin was making is that XMRV itself does not affect mice, it can't "go back" to that species, but the MLV (murine leukemia virus) that it mutated from does cause all sorts of problems. (Poor little CFS mice! Not to mention the poor moose! :))
  18. anne

    anne Guest

    Tragic. I didn't know mice could get sexually abused.
  19. Nielk

    Nielk

    Messages:
    5,073
    Likes:
    4,603
    Queens, NY
    But of course you must have known that they can fake exhaustion!
  20. _Kim_

    _Kim_ Guest

See more popular forum discussions.

Share This Page