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WPI Finds High Levels of Retrovirus in ME/CFS Patients

Discussion in 'XMRV Research and Replication Studies' started by Cort, Oct 8, 2009.

  1. Dreambirdie

    Dreambirdie work in progress

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    Hi Finch--

    That's great! I'm hoping that eventually it will make it onto one of these popular shows--like Dr Oz, preferably. I'm thinking of sending in a video account of my illness to him. But it's just so much work... and you know how much energy that would take. :(
  2. Koan

    Koan Be the change.

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    Hey Min,

    I was delighted to see your post re this being covered in my favourite UK newspaper, The Guardian.

    However, I was very sad to see the open conversation had so few responses and that what was there was almost entirely a ridiculous argument between people with ME and people who accuse the MEers of behaving badly regarding those with mental illness!!!

    This is madness! No humour intended. Please check it out and comment if you have not done so.

    I have a stepchild with a serious mental illness, anorexia nervosa. I posted the following:

    WistM

    10 Oct 09, 8:38pm (1 minute ago)

    The only reason that ME patients resist a diagnosis of depression or other mental illness is that it is inaccurate and treatment for an illness we do not have will not work.

    I have a beautiful child with a serious mental illness. I understand the sensitivity of those who hear only the desperate chorus of: we're not depressed! However, we would happily accept a diagnosis of depression if it led to useful and effective treatment.

    I believe you will find the ME community has a great deal of hard won empathy for people with mental illness. We understand what it is like to be marginalized in the way patients in both communities are. My child does not have an easier time of it than I do.

    All we ask is that the diagnostic protocol and the resultant treatment be scientifically sound. Stop diaguessing us! Follow the science. That's all.

    That should not be too much to ask.
  3. Dreambirdie

    Dreambirdie work in progress

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    Wow Koan!

    Great letter. Thanks for doing that. :):):)
  4. Dreambirdie

    Dreambirdie work in progress

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    Hi sarahg--

    I think I'm living vicariously by reading this... it feels so delightfully good to read... :):):)
  5. rebecca1995

    rebecca1995 Apple, anyone?

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    m0joey wrote about Dr. Cheney,

    I wonder if having the Rnase-L defect would raise your chances of being XMRV-positive. Have any of the good docs talked recently about other things that can cause the Rnase-L issue? Years ago I read Dr. deMeirleir speculating that intracellular bacterial infections could cause the Rnase-L problem, too. I asked my LLMD at the time whether he thought Borrelia infection could cause it, but he didn't know.

    Mikovits said there were people in study who had XMRV but not Rnase-L--but I'm wondering if you can have Rnase-L without XMRV.
  6. cfs since 1998

    cfs since 1998 *****

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    From what I have read, people with prostate cancer due to XMRV had exactly the same RNase-L irregularity that CFS patients do. I think these are the only two conditions in which they have found this irregularity.

    "The human retrovirus XMRV is associated with prostate cancer, most frequently in humans with a defect in the antiviral defense protein RNase L" (Journal of Virology, July 2009).

    Before the paper was released I thought this XMRV thing was being overblown. Now I can see that, if true, it seems to make all the puzzle pieces fit together.
  7. Cort

    Cort Phoenix Rising Founder

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    I'm really interested in RNase L. aspect. My understanding is that the people with this aggressive prostate cancer have some sort of genetic mutation in their RNase L enzyme. ME/CFS patients have a problem in one part of the RNase L. pathway - which leads to, as I remember, a fragmentation of one part of the pathway - possibly causing a channelopathy - and causing RNase L. inactivation.

    I was worried about RNaseL problem in prostate cancer for obvious reasons and I asked Dr. Mikovits if ME/CFS men should have increased risk of prostate cancer. She said No!- that it was a different problem. So I think the RNase L problems are similar - they effect that enzyme - but different.

    Actually some of the ME/CFS patients who didn't have the RNase L defect still carried the virus.

    I can't wait to hear just who these ME/CFS patients that were involved in the study are. We know that some of them came from outbreaks across the country. That suggests infectious onset -but what about the rest? Are there gradual onset patients in this group? Were they all severely ill? Researchers often gather their best cases for their first studies - the most ill patients - because they want to prove their point. Were they all really ill? or is the virus found in less ill people?
  8. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

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    There is always the chance of multiple transmission paths including sexual. Someone speculated about ticks, I also wonder also about fleas. Right before I came down with the strange mono-like illness back in the 1980s, I took in a stray cat who liked to hunt mice and small rabbits. She was living in an old cardboard box behind the building where I lived. I had been leaving a window open but she would not come in until one night she just jumped down and curled up against my legs. In the morning I found my legs covered in flea bites. Total speculation but I had not been sexually active in some years and also not since that time either.

    It will be a while before this is sorted out. I was totally burnt out even before all this excitement. Wonder what my doctor will say next time I see him.
  9. Summer

    Summer Senior Member

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    Hi All,

    I was totally stricken down, in 1986, but I never was well since I had mono, at age 18, in 1969.

    I do have some interesting info. I was not one of the ones in the DeFreitas paper http://www.pnas.org/content/88/7/2922.full.pdf, which was announced in Kyoto, Japan, about Sept 1, 1990, but I was tested in June 1991, by PCR, for the retroviral sequences, and tested positive for "CFS Associated Retrovirus". I am not sure how many more were tested, but I have the figure of 50 stuck in my head, and there was almost a 100% positive rate.

    I know for a fact that DeFreitas work may be vindicated. Testing is going to be done to prove she was finding XMRV.

    I know a little about why her work was not replicated at the time, but the important thing is Mikovits believes Elaine found XMRV and aims to prove it and vindicate her work. :)

    Summer
  10. Summer

    Summer Senior Member

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  11. Martlet

    Martlet Senior Member

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    Another newbie here, originally from the UK but living in the USA these past fifteen years.

    I've been reading here but was prompted to join in order to thank everyone for helping to clarify and put into perspective this incredible news.

    Of course, like others here, I am amazed at the notion of XMRV only being transmitted by body fluids.
  12. jenbooks

    jenbooks Guest

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    Thank you Summer. :)
  13. MEG

    MEG Senior Member

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    Xand

    "XAND" sure sounds more legit than CFS. Also wondering also how to pronounce it!

    So looking forward to more info and testing.
  14. DavidH

    DavidH Guest

    Hi guys.

    I was excited as you all at first to hear about this, almost hard to believe. I sent a $100 donation this morning in my glee (the potential vindication mainly).

    I'm sorry but having read the press release i'm more than a little sceptical, i don't see this holding water at all. Just have a look at this paragraph. Professional researchers don't release reults in this manner (and certainly not without mentioning the figures for the healthy control with the revised techinique), and she's making a wild and unsubstantiated claim for which there is no evidence (that the virus has been implicated as a contributing factor-it hasn't). Sorry scientists don't talk like this. Buisness people promoting thier 'institute' do though.


    “Since the original Science paper was submitted, we have continued to refine our test for XMRV and
    have surprisingly found that 95 percent ME/CFS samples tested positive for XMRV antibodies in the
    plasma. This finding clearly points to the retrovirus as a significant contributing factor in this illness,”
    said Judy Mikovits, Ph.D., director of research for WPI and leader of the team that discovered this
    association.


    Whittemore Peterson Institute
    The Whittemore Peterson Institute for Neuro-Immune Disease exists to bring discovery, knowledge, and
    effective treatments to patients with illnesses that are caused by acquired dysregulation of both the
    immune system and the nervous system, often results in lifelong disease and disability. The WPI is the
    first institute in the world dedicated to X associated neuro-immune disease (XAND), and other X
    associated diseases, integrating patient treatment, basic and clinical research and medical education.


    Perhaps they have found a virus, perhaps it's endemic and perhaps you can find it in most of the healthy population if you look hard enough, we have absolutely no idea. You'd expect a research scientist to be talking about repeating the study with larger sample sizes, not jumping straight into promoting their new facilities and blood tests for hire. Conclusions made are usually conservative and highlight the need for further study, but claims like they're making make the whole thing look pretty suspect.

    Let's all hope i'm wrong! Just expressing caution here, we're all running around excited about the news, it'll be a real shame if we turn out to be the fools.

    EDIT; what i'm really saying is that my initial excitement has turned to caution. The Press release is unproffessional and illadvised to say the least and the website appears to be for a private clinic, ie. a business. Does anyone know more about the Whittmore Peterson Institute? Is there any literature available from the other studies in their research programme?
  15. Aftermath

    Aftermath Guest

    Dr. Oz Thread

    Dreambirdie,

    I appreciate your effort, but please keep things to the appropriate forums and do not double post (it fragments discussions).

    If you want to draw attention to something, you can put a link to it (I have done it for you below).

    Just type the text you want to have a hyperlink to, highlight it, click the globe w/ paperclip icon, and cut/paste the url (info in the white bar at the top of your browser) from the thread you want to link to.

    For example:

    Write Dr. Oz Regarding the XMRV Research Announcement
  16. dannybex

    dannybex Senior Member

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    One of the producers of the show, Susan Harris, had/has CFS, and she wrote that episode. I noticed on IMDB that she hadn't done anything since, until I think 2007...so maybe her health is better now...
  17. Aftermath

    Aftermath Guest

  18. dannybex

    dannybex Senior Member

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    That's my laymen's opinion as well. Maybe there's some genetic component, or an overwhelming overload of multiple stressors (environmental -- pesticides, heavy metals, molds, etc)...?

    Re hearing the news: In my case, as Koan knows(!), I finally had to get off the computer (and remained away!) for about 30 hours...it was all too stressful, my back almost completely gave out. Thank god I had an acupuncture appt yesterday afternoon! (And if you're in Seattle, Kang Wen is a low cost non-profit clinic -- FIVE DOLLARS for acupuncture!)

    And I better quit here soon or I'll get all tensed up again. It's not really that it scares me, as I know people who were bedridden who finally recovered, but just that there are so many questions that we all have, it just got too overwhelming. It will take months if not years to answer the questions...

    d.
  19. cfs since 1998

    cfs since 1998 *****

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    Olive leaf extract is an integrase inhibitor and inhibits HIV:
    http://www.ncbi.nlm.nih.gov/pubmed/17275783

    It has also been found to be helpful in experimental autoimmune encephalomyelitis, an animal model of MS:
    http://www.ncbi.nlm.nih.gov/pubmed/19386399

    I started taking OLE myself about 8 months ago because I heard it was a good antiviral and might possibly be effective against EBV. I had some really extreme symptoms for the first several months but not much has happened since then. We'll see.
  20. jenbooks

    jenbooks Guest

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    I have to stand up for Mark K. whoever he is because I think he posted that simply because I speculated that perhaps SIV jumping species and at the same time a murine leukemia virus jumping species was not accidental but the result of human experiment. I know that's a big speculation to make, and I cited Baxter shipping live bird flu in their flu vaccine last year, as an example of supposed human error that would have infected the populace at large with bird flu. If not discovered, the source would not have been known.

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