1. Patients launch $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!
A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
Discuss the article on the Forums.

NJCFSA Conference with Dr. Mikovits Oct 17th

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by shannah, Oct 18, 2010.

  1. Stone

    Stone Senior Member

    Messages:
    371
    Likes:
    6
    NC
    Very encouraging to read this after the largely negative CFSAC meeting. Thanks, I needed that.
     
  2. Jemal

    Jemal Senior Member

    Messages:
    1,031
    Likes:
    60
  3. Sue C

    Sue C Sue C

    Messages:
    33
    Likes:
    1
    NJ
    Up Close and Personal at 2010 NJCFSA conference

    Hi everyone, It has been a long while since posting. Yesterday, had an early birthday present attending the conference. It was 'packed' with families and as noted those from WPI, including VIP lab member who is in front lines of XMRV testing. After my diagnosis in 1995 by Paul Cheney, MD and f/ups with him for several yerars, I had not been this excited and enthused since one on one conversations with him. Yes, the technology which allows one to see and listen to these researchers and doctors is superb. This forum leaves no stone unturned, And as in hiv/aids activism, when they got angry, people began to listen. Practiced as a nurse in mid 1980's when we started getting patients with opportunistic infections. It was scary not knowing what particular entity that we were exposed to or bringing to our families and others. When the blood supply was in real danger, it brought AIDS to the front pages. It was my impression, yesterday that it IS the time to not ease on what we know, support research keep in touch and respond, as when Dr Bell asked for support of WPI. PANDORA was represented and had sign up for those who would contact at least five of their local docs, as there are still so many who have no idea what we have is real and serious. It has been and is being maligned by others, in high places of influence and power. It was emotional to listen to older docs like James Oleske MD who worked in the eighties with AIDS babies and families in Newark, NJ when his peers questioned his choices. His emphasis, was on, despite the severity, to aim for QOL quality of life, that it is critical in longterm care and tx of child and adult.
    Judy Mikovits was first guest speaker, and as noted well, by another post, there were other WPI attendees. Realized that it is symbiotic, meaning I heard repeated that we, the patients are important to them, as they the researchers and doctors are vital to us. The highly technical, scientific studies were explained and outlined great. But as a nurse sitting next to me asked, 'did you get that?' Its important for me to be validated by those who know the truth of the matter. If I had wondered if or when to be tested for XMRV, there is no doubt today. Why doesn't the gov't want those with cfs/me to be tested? Could it be that there is power in our numbers? Susan Levine focused on education and about her new role on the CFSAComittee. Shared that Dennis Mangan new NIH director will use cfs/me from now on. There is now a broader picture of overlap: immune, viral, CNS requiring a team to deal with complexities. During Q&A there was a woman from Europe there as rep for those with more limited access to experienced doctors due to politics. She asked about those back in Europe if they could be tx'd here. And reply focused on using Skype having virtual management with each pt's unique profile. Then a tailor made approach with their tx is possible. No one doubts that many have lost hope or do not have social support to deal with their problems. Also asked if difference in FM and CFS and reply was yes, in gene expression, yet can have dual dx. Their summary of CFSAC mtg was that the ' funding process is so rigorous, and frustration that the research reviewers were not from related fields!' Most moving to researchers were the testimonies of patients (quote)
    Would like to know more (possible dvd by NJCFSA) as it was briefly mentioned at end of Q&A by Judy, about ....get hyper methylated, puts itself at the start site of genes...change in methylation. Johns Hopkins study of epigenic drugs to silence inheritable reversible identical twins and early changes in autism. Detection of XMRV in nasal swabs in immunocompromised pts leading to a respiratory resevoir for the retrovirus. (not T and B cells as thought?) Of utmost importance is consistency of methods used (done in non mouse labs!)and snap freeze and culture. Due to PEM post exertion better stop as am breaking notes up into pieces, It is an experience that I hope others are able to share, discuss and feel positive about.
    Sue C
     
  4. Bob

    Bob

    Messages:
    8,840
    Likes:
    12,359
    South of England
    This is fascinating stuff!

    This is very interesting...
    I wonder if they found XMRV in all 8 patients or just some of the 8?
    Were PMRV's just a red herring and did these patients actually only have XMRV? Or do these patients have PMRV's and XMRV's?
    [Edit: The Patient Advocate seems to have answered these questions:
    - Ruschetti cultured samples from Alter cohort and found x-variant in all of them.
    - indicated that X -variant and P-variant are two independent viruses]

    It will be intriguing to see what role PMRV's will be shown to have in people with CFS/ME.

    Does this put the WPI's UK results up to about 84% positive?
    I think that the significance of the WPI's UK study has been under-discussed... Probably because it hasn't been published yet.

    The WPI's UK study is a confirmation study of their original study, carried out in independent labs, and it shows that a large proportion of UK ME patients (about 80%) have XMRV. As far as I understand, these UK patients were not specially selected from clinics, but were randomly selected from online forums etc., so they are a disparate cohort, not a niche cohort.

    This is a highly significant study, and it goes a long way towards satisfying me personally about how widespread XMRV is, how significant XMRV is to the whole ME population, and the importance of the role that XMRV plays for all of us in our illness. In other words, it has almost totally got rid of any lingering questions and doubts that I had about XMRV its significance for the ME community. I now believe that nearly all of us will test positive for XMRV.

    I think that Judy's work on families and non-ME disorders is fascinating... It's a shame that she doesn't have more funds to carry out bigger studies.

    This is worrying...
    But it doesn't explain why none of my family or friends have ME (not including friends who I've met because they have ME)...
    I suspect that some of my family members, and friends, might be XMRV carriers.

    More info about the contamination issue is very welcome but, for me personally, contamination has not been an issue for months now... I think most of the ME community moved on from this issue months ago... It's a shame that the scientific community can't look at the research objectively, but continuously need further evidence to dismantle their prejudices.
     
  5. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    What a talk that was! This was my take on the PA's blog and I look forward to reading the other takes on the meeting. Very encouraging stuff.

     
  6. alex3619

    alex3619 Senior Member

    Messages:
    7,683
    Likes:
    12,494
    Logan, Queensland, Australia
    Hi Jemal,

    This was discussed on another thread: my take on it is that XMRV used to be a mouse virus, probably more than a century ago, maybe much longer than that. Now it is entirely a human virus, and nearly all mice are immune. That immunity is where the Xenotropic bit comes in, and may have been due to every mouse that wasn't immune dying out - but if so this happened at least thousands of years ago I think. This raises the question of where XMRV has been hiding since then: what species carry it? Nearly all mammals appear to be susceptible.

    Given that MLVs are used to create a murine model for AIDS, and that most mice are now immune to XMRV, and that env appears to be much more detectable than pol or gag genes, my guess is that XMRV is highly pathogenic, at least in mice. I doubt it is any less pathogenic in us. I currently think the primary cause of pathogenicity is the protein envelope, but we need much more research to be sure. I would be looking for levels of protein envelope in ME and CFS patients compared to asymptomatic XMRV carriers if I were a researcher.

    Bye
    Alex
     
  7. Gemini

    Gemini Senior Member

    Messages:
    397
    Likes:
    301
    Cort,

    Dr. Mikovits emphasized Dr. Komaroff's patients
    were used for the Lo study and that he and Dr.Peterson
    are both very experienced at diagnosing CFS. On your
    Oct 15 Buzz page you might want to add Komaroff's name.
     
  8. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    507
    Los Angeles, CA
    Did she indicate when any of this wonderful information will be PUBLISHED???
     
  9. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    She may also be trying to emphasize that despite it's mouse origins that this is a virus that infects humans, and is transmitted from human to human at this point.

    I for one would be happy if the next wave of news reports doesn't include pictures of mice, making the whole thing seem benign to the general public.
     
  10. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    407
    Upstate SC, USA
    Ditto - The publishing of at least some of this information would be a great boost to the ME/CFS community and future "X" and "P" research.
     
  11. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    We need to see more sequences published to put this to bed. At that point we could hand those stubbornly carrying the contamination flag and tell them to put that in their pipes and smoke it. I fully believe Mikovits, the Ruscettis, etc. but for some the proof is what's published so hopefully well get a paper soon with significantly more sequences and put this contamination nonsense to bed permanently.
     
  12. Jemal

    Jemal Senior Member

    Messages:
    1,031
    Likes:
    60
    Ha! Well I would rather have the mice then all the images of people sleeping! I am afraid it's suggesting we are lazy or something...

    Yes, that means these kind of images:

    [​IMG]

    This one is used in this article:
    http://www.seedol.com/20102935-study-says-xmrv-not-connected-with-chronic-fatigue-syndrome.html

    It's horrible! I am fed up with these images. It's like we are all relaxing in our cozy beds. Give me the mice any time any day!
     
  13. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    Hey Alex,

    I'm interested in your theory.

    I'm curious about you statement about the env gene being more easily detected. At one point Frank Ruscetti was saying it was quite variable (or perhaps just a certain region is) and could account for some studies missing XMRV. You've probably kept up on the studies better than I. Can you point me to a thread or other info on this? I'm very interested in these details.

    Also, I've heard Judy Mikovits state that the env was a neuro-toxin and oncogene, which is not a pretty picture. Is that the basis of your belief in the role on the env in pathogenicity or do you have another idea?

    Thanks,
    Otis
     
  14. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    Point taken, perhaps the mouse is the lessor of the evils.
     
  15. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    507
    Los Angeles, CA
    A big scary image of a RETROVIRUS ought to do nicely.

    Sometimes articles use a stock photos of things like rows of tubes in a laboratory, which seems harmless enough and conveys serious scientific intent much more than images of sleepy people and cute little mice.

    EDIT: I know this has been shared around here before, but it bears repeating:

    http://www.guardian.co.uk/science/the-lay-scientist/2010/sep/24/1

    Yakawow!
     
  16. Recovery Soon

    Recovery Soon Senior Member

    Messages:
    380
    Likes:
    37
    Just be thankful it's not this:

    http://rlv.zcache.com/sleepy_mouse_mousepad-p144897038412981712trak_400.jpg
     
  17. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    Dr. LeGrice said it will be easy for Alter/Lo to fully flesh out the sequences of the viruses they found. I expect we should hear from them soon. A paper from the WPI would help alot as well. I'm sure they must be preparing one.
     
  18. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    is
    I don't think Cooperative Diagnostics is the enemy per se. They're a diagnostic lab - they use proprietary techniques they developed that they think are better than anyone else's. They seem to be doing fine in a competitive marketplace. They saw a good thing with XMRV when it came out and they jumped on it. Then they couldn't find it in CFS which surprised them. They dug deeper and they still couldn't find it. Now they don't think it's there and feel strongly enough about it to publish it with their name on it. That's it for me.

    I know it seems very personal and gut wrenching but it's too bad it has to get personal in public.

    If CD does a lousy study with all the brainpower directed at this virus that will become very clear over time. My guess is that the cause will be something little that no one thought of at first; ie the blood storage scenario - in that scenario alot of people get exonerated and we can stop hammering each other.
     
  19. alex3619

    alex3619 Senior Member

    Messages:
    7,683
    Likes:
    12,494
    Logan, Queensland, Australia
    Hi Otis

    With the usual caveat that its only an hypothesis, a big maybe:

    The paper was for prostate cancer, not CFS. I think its the one discussed here:
    http://www.forums.aboutmecfs.org/sh...ies-that-found-you-guessed-it-zero-XMRV/page6

    However, I know there was a thread on this somewhere, I just cant find it. They found they could get results using env, but not pol or gag, and they needed three times the usual amount of nucleic acids, and I think they sometimes had to repeat the test. The excerpt I pointed to above only shows part of this. Even with advanced search I couldn't find it, I am starting to wonder if it is more a memory glitch (but not seriously).

    One candidate target for the envelope toxin is the nerves affected by small fiber neuropathy: we should be looking at peripheral nerves, not just the CNS. It is a candidate (i.e. we need proof) cause of CFS. It is a good candidate as a cause for orthostatic intolerance and neurological pain. I am still drawn to the idea that ME or CFS is a reaction to the virus however, and the virus may not be causal.

    One of the reasons I like the envelope hypothesis is that the virus can just crank out envelope to attack our nervous/immune system, which reduces the risk of us becoming resistant (no viral RNA to alert us), particularly since it mutates faster. If it does target sensory nerves, this could be like electronic counter measures: scrambling the nervous system's ability to detect problems, and keep the body exhausted finding other things by overloading the sensory systems. Worse, by binding to nerves, it increases the risk of neurological autoimmune attack, which would further degrade our nervous system.

    I do worry though that we seem to be talking about four classes of people, and detection may differ in each:

    1. No virus.
    2. Viral DNA, no active virus - asymptomatic.
    3. Viral DNA, no active virus, "recent" virus outbreak currently resolved, possibly envelope induced nerve damage.
    4. Viral DNA, active virus, patient in relapse.

    You can keep splitting these groups with different hypotheses, but I don't see the point without evidence. I only mention it because it could help to make sense of some of the research.

    Bye
    Alex
     
  20. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    Alex,

    I found this on Sandra Rucetti's website. Interesting stuff and the last sentence sounds like she is giving the env protien a close look in pathogenesis. There are some other interesting points but I need to try to sleep.

    Cancer and Neuroimmune Diseases Induced by the Human Retrovirus XMRV

    We are currently using knowledge and reagents obtained from working with mouse retroviruses to study the xenotropic MuLV-related human retrovirus XMRV, which was recently discovered through an association with prostate cancer. In collaboration with the laboratories of Judy Mikovits and Frank Ruscetti, we were able to use antibodies developed against the envelope protein of SFFV to detect infectious XMRV in the blood cells and plasma of patients suffering from the neuroimmune disease chronic fatigue syndrome (CFS). We were further able to develop a seroconversion assay using cells expressing the SFFV envelope protein to detect antibodies against the virus in the plasma of CFS patients. We now plan to apply our knowledge of the pathogenesis of mouse retroviruses that cause cancer and neurological disease in rodents to study the molecular basis for similar diseases associated with XMRV. We are in the process of developing rodent models for determining the biological effects of XMRV in vivo, which if successful will provide a small animal model for preclinical testing of potential anti- XMRV drugs. In addition, we are testing both in vitro and in vivo the biological effects of the envelope protein of XMRV, which like its related SFFV counterpart may be responsible for the pathogenicity of XMRV.
     

See more popular forum discussions.

Share This Page