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April 7/8 NIH State of Knowledge Conference - watch online to show our support!

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Sasha, Apr 7, 2011.

  1. Rrrr

    Rrrr Senior Member

    oh, this notice on the MassCFIDS website says that Dr. Bell was at the NIH conference and will be giving his assessment of it at his April 16th lecture in boston.


    Dr. David Bell, April 16 2011

    Dr. David Bell, noted CFIDS/CFS researcher and pediatrician, will present Current status of XMRV Research and Comments on the NIH April State of Knowledge Conference" on Saturday, April 16, 2011. Dr. Bell will have just returned from the State of Knowledge Conference, a 2-day event bringing together researchers, clinicians, government officials and patient advocates.

    Register now!
    (You can also register family members and friends)

    Note: Please pre-register for this event. The building is secured, and entry will be easier if your name is on the list. Please bring a government-issued photo ID with you.

    Download/print the flyer - color version

    Download/print the flyer - black & white version

    This lecture is co-sponsored by the Massachusetts CFIDS/ME & FM Association and the Massachusetts Department of Public Health at the Hinton State Laboratory Institute. It will be held at their facility, 305 South Street, Jamaica Plain/ Boston, Massachusetts 02130. Registration will begin at 1 p.m. There is plenty of free parking and the auditorium comfortably holds a large group, so please pass the word.

    If you would like to receive notification about this conference via email, please sign up for our Newsletter email list if you have not already done so.

    Get directions to the Hinton State Laboratory Institute. Free parking is available on Saturdays. The location is also accessible by public transportation. The building is handicapped-accessible.

    There is a ten dollar voluntary donation for non-members. Become a member online now, or join at the lecture.

    A video of the lecture will be posted later on the website. Newsletter subscribers will be notified when the video is available. We also plan to do a written summary of the lecture.
  2. Sing

    Sing Senior Member

    New England
    Many thanks, Rich, for your impressions! This ought to be on a separate thread, I think.

    I too am a generalist, and specially appreciated Gordon Broderick's approach and talk. Here are the questions I feel are key:

    1. What started it? Could be herpes viruses, mono, enteroviruses, XMRV, etc.

    2. What is keeping it going? What is directing the steady, ongoing state of poor functioning and illness?

    3. What can treat it? What can stop the illness pattern and make it revert to a healthy pattern of functioning?

    The old model of just trying to identify one cause and then assuming that is all you need to know--then you can make a vaccine and develop a drug to knock out that one bug--this model may not cover the case. There are probably multiple possible causes which then result in a similar holding patten of illness with the symptoms we are familiar with.

    What is this holding pattern and what directs it--what are the control points?

    How to convert one pattern of functioning back to a healthy pattern?

    These are the main questions and approaches in my view.
  3. eric_s

    eric_s Senior Member

    Switzerland/Spain (Valencia)
    It's a shame this happened. Besides XMRV i think his study is the most interesting thing around and i really hate seeing them fight each other.
  4. medfeb

    medfeb Senior Member

    Like Rich V, I also had the opportunity to attend the NIH conference and agree with many of the points that Rich made. I was impressed with the effort that went into organizing this conference, with the range of well known speakers and with the general quality of presentations and discussion. Certainly there were differences in scientific perspectives which sometimes led to some passionate exchanges but thats not that surprising when there is so much at stake and still so much to be learned. I saw those as honest scientific differences which very sadly are going to take a little longer to resolve.

    I was really excited to see the work presented on system biology by G. Broderick. I understand the concerns with using the Witchita data set, but I think the scientific techniques used are going to become key to unraveling the etiology and treatment options for ME/CFS.

    Like Rich, I dont remember seeing any reference on energy metabolism, mitochondrial dysfunction or oxidative stress. He makes a good point about this not being a focus of US researchers.

    I would also like to have seen time spent pulling all the pieces together in an integrated fashion. But I am encouraged because I saw a lot of interest among the presenters in finding ways to collaborate together going forward on projects across their siloed disciplines, finding ways to better share their data and research, etc. It will be challenging for all the reasons Rich states but absolutely necessary to make progress with such a complex disease. I really got the sense that the NIH and participants all understand that.

    All and all, a great conference. Kudos to the NIH and Dr Magnan for pulling this together.
  5. richvank

    richvank Senior Member

    Email to Dr. Mangan concerning workshop and energy metabolism and his response

    From: richvank@aol.com [richvank@aol.com]
    Sent: Saturday, April 09, 2011 11:00 AM
    To: Mangan, Dennis (NIH/OD) [E]
    Subject: Appreciation for the workshop

    Dear Dr. Mangan:

    I want to tell you that I found the NIH State of the Knowledge Workshop on
    ME/CFS during the past two days to be extremely helpful.

    You put together a very comprehensive review of what is known about ME/CFS, and
    included the whole range of stakeholders. Thank you very much on behalf of
    myself, and I know that I echo the views of many others in the research,
    clinical, and patient communities as well.

    I hope you will also convey to Drs. Pinn, Anderson and Collins my appreciation
    for the seriousness with which they are addressing ME/CFS.

    There is, however, one area that I would like to mention that I dont feel was
    adequately covered in the workshop: the energy metabolism. I think the
    impression was given, particularly in the session on exercise and muscle
    function, that there are no serious issues in the energy metabolism in ME/CFS.

    In fact, there is considerable evidence of serious dysfunction in the energy
    metabolism in ME/CFS. There are have been numerous papers published in the
    peer-reviewed literature over the past few years providing evidence of oxidative
    stress in ME/CFS, as a PubMed search on the keywords chronic fatigue syndrome
    and oxidative stress will show, and this is a key indicator of problems in the
    energy metabolism. I would also like to draw your attention to the paper by
    Myhill et al., attached, in which it is shown that mitochondrial dysfunction is
    quite severe in some cases of ME/CFS, and that there is a direct relationship
    between mitochondrial dysfunction and severity of the illness.

    While the wide variety of published evidence supporting the presence of
    mitochondrial dysfunction in ME/CFS has not been adequately reviewed in a
    peer-reviewed journal, it is quite substantial, ranging over 1) muscle biopsy
    combined with ultrastructural examination of mitochondria; 2) measurement of the
    status of mitochondrial nutrients and response to their supplementation; 3) gene
    expression studies; 4) indicators of abnormal processing of the substances that
    normally serve as substrates for the mitochondria (oxygen; fuels, including
    carbohydrates, fats and protein; and ADP); and 5) indicators of abnormal
    production of the substances that constitute the normal products (ATP, carbon
    dioxide, water, heat and reactive oxygen species). The interpretations and
    conclusiong offered in the various papers are in some cases conflicting, and I
    suggest that this is largely due to differences in cohorts as a result of the
    case definition problems that were well discussed at the workshop.

    In a disorder in which fatigue and post-exertional fatigue are so prominently
    present, I think it is obvious that one area that should be thoroughly explored
    is the energy metabolism, and I dont feel that the ME/CFS research community as
    a whole has adequately investigated this, or made it an important part of their

    In view of this, I want to urge you to ensure that the problems in the energy
    metabolism in ME/CFS are not ignored in the NIHs appraisal of the state of
    knowledge of this disorder.

    Again, thanks to you and all the others at the NIH who produced this excellent
    workshop. I have been a full-time ME/CFS researcher for 15 years, have attended
    the previous two NIH workshops on ME/CFS as well as six other conferences
    devoted to this disorder, and this is the best get-together I have attended on
    this topic.

    Best regards,

    Rich Van Konynenburg. Ph.D.
    Independent Researcher
    Livermore, CA


    So noted. Thanks for the kind words and keeping us posted on the scientific
    basis for this illness.


    Dennis Mangan, PhD
    Chair, Trans-NIH ME/CFS Research Working Group
    Senior Research Advisor
    Office of Research on Women's Health, OD
    National Institutes of Health
    301 496-9006
  6. richvank

    richvank Senior Member

    Hi, Sing.

    Thanks for your post. I agree with your selection of key questions. I don't know if you were wondering about my proposed answers to them, but I will sketch out my current thinking, for what it is worth, below:

    ***I agree with you, and others may of course offer different answers to your set of questions, but I think I have a pretty good basis for the answers I've offered.

    ***Best regards,

  7. Enid

    Enid Senior Member

    Please guys we are relying on you there (when the slugging is done amongst them - as long as they find).
  8. serg1942

    serg1942 Senior Member

    Hi Rich,

    Thanks So MUCH for your report! Sushi and I were rooting for you during the two day-home-couch Conference :sofa::sofa:, as the camera was frequently focusing at Dr. Klimas, and therefore at you, as you were right behind! :)

    We were thinking exactly the sameWhen they were talking about the problems to deliver oxygen to blood, I didnt understand why anyone raised the known issue of oxidative damage in the mitochondria I mean, the closer they were of treating this subject was when they said Lets replenish our ATP levels, when they announced the launch time

    Also, we really missed what you say: someone trying to put the knowledge together, in order to show the whole picture, and by doing so, to try to really understand the pathophysiology of the disease I wish you could have raised some of your questions...

    I would like to bounce something off you We are living through very exciting times for CFS research. XMRV or other retroviruses and their relationship with old known infections, new genetic techniques that could change the way biomarkers, viruses hunting technics, etc. will be assessed, higher than ever attention of the media to CFS, new and promising treatments like GcMAF...

    We have all the above, however, on the other hand, we have even more questions than before.. Why is GcMAF helping (it is definitively helping many PWCs, including myself)? My leukocytes and lymphocytes levels are higher than ever (they were low, and now are in the middle of the normal range), while my vit D 0.25 that was low is almost normal, while the vit D 1.25 that was high is already normalAnd I know that my previous pattern of vitamins D is associated with chronic infections and autoimmune diseases, while Vit D is necessary for the innate immune response... How does vit D relate with CFS pathophysiology, and how these observations fit with your theory?

    As you know, I havent been able to tolerate the methylation support for the past 2 years. However, if I am improving, my methylation status must be improving by other means

    Also you know how well LDN worked for me, as well as for many PWCs. I think it may be preventing an excess of inflammation while on GcMAF, although I am a bit concerned about whether it could be also preventing GcMAF for fully working

    It comes to my mind a very logical question: When should I resume the methylation support?

    These are just a few ideas/questions from the top of my head, but of course therere many other unknowns to be answered.

    One of the things you have pointed out as something missing from the conference has been someone trying to put the pieces together Soooooooooooo, what I am trying to subtly say (well, maybe no so subtly :), is that we nominate you to try to put together these new exciting, but unfortunately scattered news

    Your Spanish fan club (Sushi, Sergio, et al) :victory:
  9. Enid

    Enid Senior Member

    Sergio - someone putting the pieces together now (amongst scientists) would be the best ever news. What is it that tips the balance and allows progression. Any thoughts anyone with all we have so far.Many systems into "meltdown" - so why ? as we try to treat the individual symptoms. 11 years ago my Neurologist said "viral" - now we are finding them.
  10. XAND


    Not shame at all, someone has to do the dirty job, and thats Judy.

    This was totally necessary, She told him the truth, saying that his study on XMRV was based on 2 samples, and was a bad study and totally flawed, the tuth never hurts, is simply unavoidable. This arrogant man needed that remark, just because He did a good study on the proteins found in the brain, does not imply that the immune system is not involved. Besides, how can He possibly claim that XMRV is not present in CFS patients when He was not testing the blood in the first place? The positive studies were done in the blood, not in the cerebro spinal fluid, therefore, He can not claim anything, because there is no validation for his conclusions, and even less when He tested ONLY 2 samples! Judy might be stubborn, ok, but We need that! We need to be heard, I am feed up of the political bullshit...We need someone to strike at the table and get attention of cluless people that do not see beyond their own egos.
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    i agree totally, we need someone like judy, shes not going to let someone walk over her, if she just rolls over and does what they say then we are back to 1994 again and we're going nowhere fast like the last 30 years.

  12. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA

    Thank you so much for the report of the conference and especially for writing to Dr. Mangan. I was going to try to work that into my weekend or week somehow, but now that I know you have done it I know it's okay if I don't. I do hope Dr. Mangan is able to include that information in the final report coming out of this conference.

  13. Cort

    Cort Phoenix Rising Founder

    Actually the samples in the first study were handled differently; the WPI gathered up the patient samples and got the other samples from the a blood bank....The big question for me is how the internal tests you would think the WPI must be doing have checked out...Dr. Mikovits has said they have checked 1,000's of samples....but how many controls? If I was them - unless I was absolutely positive about everything (and there's no way I would be positive about everything given what has been going on) I would be bringing controls in there regularly to ensure that their protocols are correct and I imagine that they've done so...That is the most important factor for me and it's one, unfortunately, that is not publishable...We shall see in the BWG and Lipkin studies about those controls.

  14. Cort

    Cort Phoenix Rising Founder

    Alter said the Lo Lab is very small - just two assistants - and that it would take them six months of devoting all their time to the Lipkin study to get through it. He said they are so cautious about contamination that they're afraid to bring in more equipment or more assistants. I asked him if Lo doesn't find anything 40% way through the samples (after 4 or 500) if he would just quit :) and Alter kind of sounded like, if he was in charge, that he would consider that. It's a very big task for a small lab. I don't know why they need THAT many samples...the WPI sounds overwhelmed and so does Lo. Of course the WPI is culturing this time - which takes up to 42 days (altho Dr. Mikovits has reported they have a much quicker test. In the presentation she said it will take them two months per sample).

    It took the WPI months to get back the BWG samples in phase I and II - they were always the last lab to get them back in...I imagine it will take a long time for them to get through them.
  15. Cort

    Cort Phoenix Rising Founder

    I asked him about that and he said he didn't know. I didn't get the idea that anythings going to happen. He's actually associated with the public health department in Berkeley and, as urbantravels noted, is a 'stringer' not a staff member. Amy I think missed either most or all of the second day but David was there almost to the end.
  16. Cort

    Cort Phoenix Rising Founder

    I thought they both got angry at times and both interrupted at times and both tried to speak over each other at times...
  17. Cort

    Cort Phoenix Rising Founder

    I don't know what she meant by that. My guess is that she meant two samples or strains of XMRV. Natelson used 43 patients in his study

  18. Cort

    Cort Phoenix Rising Founder

    Here's my take on XMRV and the Conference:

  19. urbantravels

    urbantravels disjecta membra

    Los Angeles, CA
    Where did this idea come from that our buddy Dr. Natelson's study looking for XMRV in spinal fluid was "only two samples"? By my reading, they had 43 CFS samples: the same 43 patients used in the proteomics study. Perhaps they didn't use the "right" PCR method, but that would have been a separate issue.


    Dr. M. clearly yelled something at him, but it must have been about something else or else misheard. And yet everyone seems to be picking up and repeating the idea that it was "only two samples." Check your sources, folks.
  20. Bob


    England (south coast)
    I don't know if Judy's comments might have been related to this:

    This would suggest that Schutzer et al sent a total of two phials, containing patient samples, to VIPDx for testing, alongside running their own tests.
    I'm just guessing here, but maybe Judy was refering to this?

    Anyway, here's the section of video where she says it:

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