The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Video clip of Q&A at Peterson/de Meirleir presentation 26 May

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by fred, May 26, 2010.

  1. vdt33


    My comment doesn't apply specifically to this thread, but it does apply to the issue of testing for XMRV.

    My culture test for XMRV was negative. So I am wondering whether I have a different strain of XMRV.

    In my family, my grandmother was the first person to suffer from an ME/CFS like illness. She became ill in 1937 at the age of 28. She was bedridden for many years and never totally recovered before dying of cancer at the age of 62. My grandfather got a fatigue/allergy/asthma/ulcer illness several years later.

    They lived in a very isolated, rural area on a ranch where there were lots of wild animals, including wild mice. There was a pond where people, cattle, wild animals, and migrating birds all drank water. My aunts and uncles liked to catch mice and rabbits for pets.

    So naturally, I am wondering if I have a strain of XMRV different from the strain that is being detected by WPI.

    Does that make sense to anybody?

  2. awol


    vdt, sounds perfectly reasonable until proven otherwise.

    I would hold off on declaring yourself negative until you have had an anti-body test though.
  3. Rivotril

    Rivotril Senior Member

    My medical knowledge is not very huge but i know that:

    -The culture test at Vipdx produces many false negatives, so you might be in that group too
    Mikovits told that the 67%-98% difference was made by additional antibody testing
    -Mikovits already speculated in a Q&A session that like with HIV, were we have HIV1/HIV2, this might also be the case with XMRV, so that there is maybe an XMRV1 and XMRV. but today, this is all very speculative

    The first question might partly be answered when the commercial antibody test is available.
    For the rest: I think most of the members have more medical knowledge then I have , I just remember that Mikovits said something about the possibility mentioned above
  4. fred

    fred The game is afoot

    awol is right. The anti-body test should be more reliable that culture alone.
  5. subtr4ct

    subtr4ct Senior Member

    I have been wondering a lot about this -- does anyone have any vaguely authoritative reference or even hint about what the false negative rate for the VIPDx culture test might be? Based on what was revealed by WPI post-Science, (see discussion here), it seems like the WPI false negative rate for the culture method might be as little as 1/31. But I am not at all certain that I am interpreting all of this correctly.

    Q1) Does "Transmitable Virus in Plasma" correspond to the culture test?

    Q2) Would VIPDx's false negative rate be likely to be different from WPI's false negative rate for culture?

    Calculation appendix: 2 of the 101 Science patients were negative by all four methods. This implies that of the 33 who were negative by PCR (the method that generated the 67% headline number), 31 were actually positive. 30 of those 33 were deemed positive because of "Transmitable Virus in Plasma". The set of three negatives via "Transmitable Virus in Plasma" (33-30) would then be comprised of two true negatives and one false negative. 31 positive patients were tested by culture (assuming an affirmative answer to Q1 above), one false negative resulted. 1/31 ~ 3.2%.
  6. Rivotril

    Rivotril Senior Member

    and i understand there is also the chance that antibody might be negative, but culture positive? (just the opposite )
    So when I get tested on antibodies and its negative, there's a good reason to also test on culture?

    from Q&A:
    Q: Given the problems with antigen presentation seen routinely in so many patients with chronic fatiguing
    illnesses, we would expect to see some patients with culture (+) XMRV who are antibody negative?
    A: Yes! We see lots of those…these data are very interesting and suggest immune therapy including
    antibody therapy may be most useful in this disease.
  7. Hope123

    Hope123 Senior Member

    Thanks for posting this video, Fred!

    I think the first part where Peterson talks to an audience member about HIV patients with CFS who have not improved on their HIV antiretrovirals is interesting. Peterson states something to the effect that they might not be on the right drugs (which is true given the few studies out there on XMRV and antiretrovirals) and that the issue of it being an opportunistic infection is still being investigated.
  8. Hope123

    Hope123 Senior Member

    I can comment on Q2.

    You can't use the those numbers to get a true false-negative rate. To get sensitvity and specificity, you need a gold standard test, which is not yet available for XMRV. Gold standard means it is practically 100% sensitive (everyone who has the disease has a positive test) and 100% specific (everyone who doesn't have the disease has a negative test). (Knowing the sensitivity for a test means you know the false-negative rate. That is if sensitivity is 70%, the test is missing 30% (100%-70%)of people who DO have the disease.)

    For example, tissue biopsy is a gold standard for breast cancer -- it's invasive, time-consuming, and expensive though so mammography is used for screening/ initial diagnosis instead. But early studies of mammography were likely compared to tissue biopsy to get sensitivity and specificity numbers for it. (The women with suspected breast cancer likely underwent both mammography and tissue biopsy in the studies.)

    What we do know from the Science paper is that there are false-negatives with PCR. But there isn't enough known yet about XMRV to give the rate of false-positives; false-negatives, etc.

    If you're interested, here is a detailed general paper about how diagnostic tests are evaluated which can be applied to any test:
  9. Xand XMRV

    Xand XMRV Guest

    You can see the whole summary of the conference in this Facebook note:

    Conference in Madrid on the 26th of May by Daniel Peterson and Kenny de MeirleirShare
    Yesterday at 12:48pm | Edit Note | Delete
    Yesterday we have gone to Madrid to hear Dr. Dan Peterson’s lecture.
    It was an all morning session about XMRV, and the first to talk was Dr. Dan Peterson. He shared with everybody some of the findings in XMRV (nothing new) with many references to Dr. Judy Mikovits and the WPI, and his slides were the same that Dr. Mikovits uses in her lectures. The reasons for leaving the WPI were more a personal decision in order to have more time for himself after 25 years of service in WPI. He seems to be having a nice rest and is very happy to have the time to go sailing again.

    At some point It was mentioned by Daniel Peterson, that so far the best biomarker for CFS is the Low NKCell function test, and that if your budget was restricted, this would be the test to do, I guess He was referring to the same direction than Dr. Klimas is always talking about as well.

    The second lecture was from Dr. Kenny De Meirleir, very interesting, focused on the fact that the most important thing now is to have a simple and good XMRV Test for all the researchers. He assured that they already have the test and it works, and it is a matter of days that they will make it available, 3 to 4 weeks probably.

    De Meirleir also talked about all the work that is being done and possible treatments, but curiously never mentioned the Ampligen. Dr. Marc Fremont’s lecture was very technical about this test, and finally, Dr. Chris Roelant talked about the urine test they already have, which indicates intestinal dysbiosis is present in these patients.

    Some of the questions posted in the Conference were regarding the recent German study, and the fact that XMRV is 3 times more present in immune compromised patients already tells you that there is an immune problem on CFS patients where most of them have the retrovirus.

    There are three pathways affected on CFS which affect muscles and CNS:


    There are also 3 pats of the immune system affected:

    Th1 Linked to viral reactivation and intracellular infection due to an excessive hypersensitivity
    Th2 Linked to pathogens, allergies and inflammation and blood brain barrier dysfunction
    Th17 Linked to autoimmunity and inflammation and blood brain barrier dysfunction

    De Meirleir elaborated later on that Th2 imbalance that causes diseases such as CFS, Autism, HIV, MCS, Mercury exposure, Allergies, Parasites.
    Th1 relates to cell-based immunity Th2 relates to Humoral immunity

    You can see a bit on the conference in this link:

    Daniel Peterson Q&A

    Kenny de Meirleir Q&A

    When we asked Daniel Peterson to comment on Dr. Hubert lecture of last Monday in London, his answer was that Huber had positives 17 of the 19 samples that were sent to her, but She only spoke of the samples of other doctors who have tested negative. Daniel Peterson has said that once again we face the uncertainty of correctness in the samples tested, but also added that if She would have done a good job, She could not have all negatives, at least 3% would be positive, as we see is happening with the recent German study.

    When we asked about the fact that HIV patients that are XMRV positive and have CFS, are not reacting to their current antiretroviral treatment, and that could lead to the possibility that XMRV is just a passenger virus in a depressed immune system, his answer was that actually that would be one possibility, and the other one is that they are taking the wrong drug, because XMRV is a different retrovirus, and they are being treated for HIV.

    When we asked about the German study, and the fact that XMRV has been found now in the respiratory tract, and that could lead to new ways to detect XMRV different from the ones used in WPI, He said that is a big possibility. As we know blood is not the reservoir of XMRV, maybe the brain or the liver...

    There were some other questions regarding the prevalence of CFS in children, banning blood donations, etc...

    I will not add the whole Conference because is very time consuming, but I will review it and if I remember something relevant I will post in written expanding this current facebook note.
  10. Robin

    Robin Guest

    thanks, xand xmrv

    Is this the Emory test?

    Can you elaborate on this? She in fact found XMRV in 17 out of 19 samples but didn't report her own work, instead reporting on the work of other researchers? I'm a little confused! :confused:
  11. Dr. Yes

    Dr. Yes Shame on You

    Thanks for the report.

    Does anyone happen to know what ranges of what lab's NK function tests Peterson or Klimas consider indicative of CFS?

    Are you sure of the bolded statement, XandXMRV? (tricky name!) Was he clearly referring to 19 samples sent from the WPI? We have had conflicting reports now about what exactly Huber's findings were, and how many samples she got from the WPI.

    ETA - ha Robin just edged me out
  12. Cort

    Cort Phoenix Rising Founder

    I don't know. XMRV does grow and replicate - and its replicating very well in their cultures - and its during replication that slight changes in the genome occur. Actually the virus was so homogeneous that unless it replicated hardly at all - which is possible - one would have thought it was from a single source.

    Yes there are the controls - good point - but they came from a very different source - some blood bank or something. Could that make a difference? I really don't know!
  13. Robin

    Robin Guest

    It's in the PLOS study. (RTFS much? ;-) See the tiny TIFF file here. It looks like the median NKCC for CFS is 12, and for healthies 28. The low end (25%tile) for healthies is 20 and the high end for CFS (75%tile) is 21. There appears to be overlap!
  14. Dr. Yes

    Dr. Yes Shame on You

    Nah, I knew I could get this GEEK to do my homework for me. :Retro wink::D

    (Seriously, thanks for doing my homework for me. :ashamed:)

    Trouble is it doesn't seem (from an earlier thread) like commercial NK Function tests have standardized ranges at all, and in this study they seem to have used their own assay anyway.

    (btw Robin I found a Quest Diagnostics NK function test code that MIGHT work for NY state residents - # K86381)
  15. Robin

    Robin Guest

    Well, from what I understand it's not unusual for labs to have different reference ranges for various tests, and even different ones for gender, age group, etc. It's a real oddball test that isn't ordered very often, that's for sure. Probably if it became a biomarker for CFS there would be more of a standard!

    I'd need my doctor to open an account with Quest to get tested. It would probably be easier for me to get the Vipdx one. (You could call them and ask what their reference range is, too!) I hope you get permission to get tested!!
  16. citybug

    citybug Senior Member

    If Huber is looking at XMRV integrase, isn't that an enzyme made by XMRV, and if XMRV is spreading cell to cell on the lipid rafts or tendrils, would there be much integrase in the blood? Would it have to be sent out of the cell so the enzyme gets broken down?

    I wonder if the doctors sent a range of patients or, the old sick for 20 years patients and if that makes a difference, or treatment of coinfections.

    For the other studies, near the end of Osler's Web de Freitas says that a difference of a few degrees of temperature determined whether PCR
    tests worked.
  17. fred

    fred The game is afoot

  18. raul


    I write here some of the notes I took during the conference in Madrid. I am sure there will be inaccuracies they are but I hope they are more useful than misinformative. Some of this may overlap with what has already been posted.

    Dr. Peterson

    Since the Science paper there has been replication at the NCI with similar results.
    Serum alone maybe infectious as they managed to infect cells from a serum sample from a severely-ill patient. This sample had been stored for 25 years.
    He mentions the intercept system, approved in some parts of Europe, to neutralize viruses from blood donors. One downside is that it also neutralizes donor's leukocytes.
    No formal clinical trials at present.
    GSK plans a trial based on 5 sites. He describes Raeltegravir as potent and selective. Mentions tenofovir, AZT ... He says that in general patients tolerate these drugs poorly.
    He mentions the decrease in NK cells function test as the one he would choose if he could afford only one test
    He mentions he has tested some of his HIV positive patients for XMRV and all were positive. [I personally found this surprising. Maybe I just got it wrong. When answering a question about vertical transmission he explained that sporadic and epidemic cases may yield different statistics]
    He talks about the Canadian criteria and says that a 50 questions-list is in preparation to help diagnosis.
    Most of the lymphoma patients he has looked at were XMRV positive.
    He mentions that currently the correlation between commercial and research testing is not perfect.

    He tested the spouses of 8 CFS XMRV+ patients. 3 of them were XMRV+ and had CFS.
    He tested 5 sons/daughters of 5 CFS XMRV+ mothers. 4 of the were XMRV+ and had CFS. [It is in relation to this that during Q&A he explains that one has to differentiate between sporadic and epidemic cases]

    Dr. de Meirleir

    They have been working for the past 4 months in importing the culture + PCR test from WPI and they just got it to work.
    He mentions some drugs/substances that may offer potential to treat CFS such as:
    -minocyclin maybe at higher dose than normally,
    -an NF kappaB blocker? ( I am not sure I got this right)

    A patient was put on a macrophage activating factor (Something-MAF, related to vitamin D). This patient is XMRV+ according to 2 labs in Europe and 1 in the US (culture + PCR). Very significant clinical improvement (after several weeks?). Goes from working 2 hours per day to 8 hours.
    Normalization of C4 serum levels (goes down), Perforin PBMC (goes up), LL8 serum (goes down).
    10 more patients recently started on this protocol. There seems to be improvement.

    Dr. Fremont

    Talks about the different options for testing. A bit quick and technical for me to write down.
    Groom more positive in controls when using antibody testing. May reflect better ability to mount an efficient immune response?
    Future prospects: Fluorescent construct to detect XMRV replication, gene assays.
    XMRV test available from them in 4,5 weeks. (I think culture + PCR)

    Dr de Meirleir

    Is everything in the gut?
    Important to subgroup the patients:
    -2-5 A Pathway

    Naive Tcells:
    TH1 up, hypersensitivity
    TH2 up, allergies
    TH17 cells

    TH1/TH2 imbalance may be central

    Although H2S gas is necessary excess can cause mitochondrial damage

    They present a urine test that can be self-administered at home to monitor neurotoxic metabolites: organic metals and products of H2S that enter the body if gut is leaky.


    Pre ME
    Abnormal faecal test
    Low VO2
    Restore the gut: probiotics

    Moderate disease
    Exposure to heavy metals, fatigue, GI symptoms
    Probiotics, enterocoated antibiotics, metal chelation, zinc supplementation

    Aberrant protein conformation
    As before, plus treat opportunistic infections. Some treatments still experimental.

    Nickel may be more of a problem than mercury-> Found in margarine
    Mercury: In fish, dental fillings

    Dr Roeland

    The NMT kit: a disease monitoring self-test

    Th1 up: MS, Rheum Art, Crohns D, IBS
    Th2 up: CFS/ME, HIV, XMRV, autism, mercury poisoning, allergies, parasites, cancer

    The test detects Th2 up, "organic metal" or dissociated H2S.

    CFS patients and the test:
    24% negative
    41% moderate positive
    34% strong positive
  19. fred

    fred The game is afoot

    Thanks very much for this, Raul. It is very informative. May I ask a few questions?

    Did he say if the NCI results have been published?

    What is meant by 'sites'? Is this locations in the US, perhaps?

    Perhaps this indicates that there are more virulent strains or situations/occasions when the virus becomes more infectious.

    That should help the researchers of the world who don't use the CC because they say it can't be 'operationalised'.

    Cheney also says that XMRV transmits easily between family members although it's interesting that Peterson implies this may differ between sporadic and epidemic cases.

    Thanks again, Raul.
  20. Advocate

    Advocate Senior Member

    Hi Raul,

    Your notes are important, and I picked up several things I didn't know. Overall, I found them encouraging.

    Thank you for going to the conference and for reporting on it here. I'm sorry that your report is buried on a video clip thread.


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