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Ongoing NIH XMRV Research Projects

Discussion in 'XMRV Research and Replication Studies' started by Mark, Aug 1, 2010.

  1. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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    Matlock, Derbyshire, Uk
  2. WithHope

    WithHope

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    I think this is really exciting - but also echo other people’s comments re the length of time (years) to secure results.

    Once the NIH/FDA paper has been released – I wonder whether we should all attempt to rally around a couple of key advocacy messages - I believe strongly that one of the messages should be immediate funding for clinical trials (of ARVs).

    I believe it was Coffin who said that one way to prove causation is to directly treat XMRV – if disease expression is reduced or completely eradicated – this is very strong evidence to support causation.

    Unravelling the precise disease mechanism (as per the NIH future projects) could take years – I think this is a perfect moment for the ME community to learn from the international HIV community – and demand – very clearly and collectively – some key actions we want taken forward.

    e.g.: CLINICAL TRIALS NOW....
  3. VillageLife

    VillageLife Senior Member

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    Dont worry its not like we will have no news for the next couple of years, infact its going to be the opposite, we will probably have so many bits of news & information and stuff to learn over the next few years.
    What we have to remember is for years and years we had nothing and we all thought that we would be ill for the rest of our lives. but now more is about to happen then ever before!
  4. Gemini

    Gemini Senior Member

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  5. Gemini

    Gemini Senior Member

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    parvofighter,

    thanks for posting the whole Abstract.

    glad they're using DNA microarray technolgy and looking for co-pathogens.

    Gemini
  6. George

    George waitin' fer rabbits

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    What Villagelife said.

    No really there will be two levels of research. One is about the immediate problems involving this illness. What drugs do we have that work now, why do they work, and how fast can we get em to market. (grins) But the second level will be about really understanding the illness itself. Nailing it down, getting a nice check list for doctors to use in diagnosing the illness. The long terms stuff that will effect all those who come after us.

    Yeah, It looks like there is some pretty dang solid evidence out there for XMRV being a "causative" agent for CFS that we don't know about yet based on this research. I don't see these guys making quantum leaps without some pretty good back up. I think we are experiencing a bit of a blackout on the information front. It sucks but it won't last. We are so used to being the ones with all the knowledge that it's hard for us to let go and let others be in charge. It's a struggle for me to trust others to get it at all, let alone get it right!

    Don't be discouraged by the long time frame, heck a year is nearly over since we celebrated the Science study, so it goes by fast. The DHHS understands that it has a major problem that has to be resolved long term. Questions have to be asked and answered like what is ME/CFS? What does it look like? Who has it? How do you diagnoses it? The DHHS realizes that all the information from the CDC is pretty much worthless so they are starting from scratch. This long term study is the legitimizing of ME/CFS for us and for the world.

    I think that we may have a more immediate problem coming our way. Once the news breaks about the retrovirus and that it is associated with illness there's a really good chance that media is going to be asking many of the same questions. There will likely be a lot of "experts" who will come forward and spread a lot of misinformation. My guess is that all of us will be busy with writing letters and trying to keep the public straight and that Dr. Donnica is going to earn her money come next year. But that media exposure will also insure that some good thing happen like Ampligen getting FDA approval, that antivirals and anti-retrovirals drug trials will get set up and touted by the various government and pharmaceutical companies and that the awareness will finally get raised.

    The next three to five years are going to be their own kind of hell, folks. And maybe it's time to start thinking about that. We will need this board and each other more than ever to navigate the emotional ups and downs, the quacks and cranks, the trials and tribulations that are going to be part of the growing process. Maybe it will be a quite transition, I can surely hope so, but it could turn out to be a raging circus too.

    By the time 5 years have passed things will settle down we will have suffered and fought and won for all who come after us the battle to be cared for in ways that we never knew.

    So pace yourselves. (grins)
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Now that's just funny, NIH calling CFS a neuroimmune disease.

    Neuro

    immune

    and, here is the kicker: disease

    I don't think the CDC and NIH could be more diametrically opposite in their understanding of


    our




    disease.


    Tina

    Just for emphasis...... disease.
  8. eric_s

    eric_s Senior Member

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    Wow, yes, this looks good. The best thing since the news about the Alter paper, for me. And i'm having fever right now, so it feels extra strange :tear:
    I was too excited to read it all, but now i'll go back and read.
    I personally don't worry too much about those big timeframes. If this really means that the XMRV/CFS connection is now proven, then there will be new findings that continually come out and this will lead to more and more projects, not only in the USA. The speed of this will increase, i guess. I for myself would probably try to get people here at ETH Zurich (technical university) interested in this. Advocacy organizations and individuals all around the world should then start doing this. Scientists will realize that this is an opportunity to enter the history books (if it's really as we hope), so this should be attractive.
  9. Bob

    Bob

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    I live in the UK and so I don't have a great deal of insight into the roles of these US government organisations...
    So please could anyone explain how the roles of the CDC and the NIH differ, and what areas of health each of them have responsibility for, and authority over? Also, am I right in thinking that both the CDC and NIH are supervised/controlled by the DHHS?
    Thank you for any info.
  10. Gemini

    Gemini Senior Member

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    OverTheHills,

    Columbia U is very strong, West Nile & SARS discoveries.
    See Ian Lipkin's bio--
    http://en.wikipedia.org/wiki/Ian_lipkin

    Gemini
  11. Stone

    Stone Senior Member

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    Dear, I live in the US and I don't really understand it either, so you have some company. In fact, I'm not convinced that these government organizations always understand their own roles in things either. I'm sure there are many others on this forum who have a working knowledge of this hierarchy and I'm sure they will enlighten us at some point. As far as I know, yes, the DHHS oversees both the NIH and the CDC. The DHHS is basically the top tier of the cake under the Secretary of Health more or less, which if I'm not mistaken is a 'cabinet' position and answers directly to the president. The NIH in my simple mind seems more generalized, while the CDC is more specialized, but that is not always the case in practical reality. I perceive the NIH to be a little higher than the CDC but that might be because I respect them more today than in the past and certainly more than the CDC. The CDC however, is perceived by most physicians to be the official source of information on all things disease-related. If you quote some statistic from the CDC to your physician, his/her little ears perk up. This, I have found, doesn't happen to the same degree when you quote something from the NIH for some inexplicable reason. I think the CDC has better public relations perhaps. When we watch sci-fi movies about apocalyptic viral outbreaks and such we always see the CDC involved, never the NIH. They are generally perceived by the majority of the American public as scientific geniuses, knowing all there is to know about every disease, while the NIH is more or less perceived as more bureaucratic, vaguely involved in general health issues. Again this does not necessarily represent reality, merely public perception.
  12. shrewsbury

    shrewsbury member

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    This is all so exciting. Mark - great digging!

    OTH - do you have a link for this job ad? I've searched the site and can't find it. thx sb
  13. OverTheHills

    OverTheHills

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    Oh dear I realise now I'm a goldfish.

    See TGOP post #21 where he/she points out that there was a thread in June about this project (and who Maureen Hanson is and the advertising for people ).

    Doubtless I read it and have completely forgotten everything I read.

    Well,looking at it positively, a chance to be encouraged and excited all over again.

    Now, in response to Shrewsbury's post, here is the link where I found the CornellJob advert

    http://diagnosesupport.com/health/i...ticle&id=227&catid=132:xmrv-research&Itemid=8

    Looking at it more carefully I notice its old 17/12/09; and its not on the Cornell site - its the DIAGNOSE SUPPORT advocacy site which I've never checked out before. Perhaps they noticed it earlier in the year and archived it.
    Sorry, sorry, sorry:ashamed:Hope non-one was thinkin' of applyin'.

    Humbled

    OTH
  14. shrewsbury

    shrewsbury member

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    no worries whatsoever OTH - and no need to be humbled in my books - (well, actually, humbled's ok IMHO; I try to get daily doses) - but ashamed - nah. I'm actually impressed that you untangled that ball of fishing line at all - let alone how quickly. Thank you so for doing it.

    Thanks too to TGOP for clearing the fog a bit and reminding us of the earlier thread. I thought I felt some memories of this stirring in the murk.



    Not sure if anyone has noted this yet - Ila Singh;s study is looking for the prevalence of XMRV in the general population, in blood, and in tissue other than prostate.

    "Our goal is to further understand pathogenesis by XMRV, to determine if this virus causes prostate cancer, and delineate possible mechanisms for oncogenesis. We will also carry out epidemiological studies to study the prevalence and tropism of this new and important virus. "

    "Epidemiological studies to look for prevalence of XMRV in the general population: in blood, and in tissues other than prostate. Our studies could causally link XMRV to carcinogenesis and lead to novel modalities for cancer prevention and treatment. "
  15. Bob

    Bob

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    Thank you for that info Stone...
    Interesting to hear your opinions about the CDC and NIH, and about your experiences with your doctors.
    Thank you. :Retro smile:


  16. urbantravels

    urbantravels disjecta membra

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    The Centers for Disease Control and Prevention is a public health agency. Original biomedical research is really not their strong suit - I don't know enough about it to know why they even engage in it. Their purpose is to protect the health of the public - setting policy, distributing information, etc. See the Wikipedia article - they started out as an office charged with malaria control after WWII. It appears that the CDC's scope has broadened considerably over their history, to include things like "chronic diseases," occupational health and safety, etc.

    <http://en.wikipedia.org/wiki/Centers_for_Disease_Control_and_Prevention>

    The National Institutes of Health, on the other hand, is an agency devoted to biomedical research. It funds both its own research that takes place in its own offices and also hands out a lot of grants to outside researchers. There are multiple "institutes" including the NCI (cancer) which is hugely funded - 6 billion a year for cancer alone out of a total budget of 31.2 billion. (The CDC's entire budget is 8.8 billion.) Note that the National Cancer Institute collaborated on the original Lombardi et. al paper in Science. The cancer people have always been interested in retroviruses - since even before HIV/AIDs popped up - because retroviruses cause cancer in animals. So there is a long tradition of retroviral research there.

    <http://en.wikipedia.org/wiki/National_Institutes_of_Health>

    Both these agencies are part of the Department of Health and Human Services.

    I am not well versed in the checkered history of the CDC with regard to CFS, but it seems pretty clear to me that the emphasis in CFS research has finally moved where it ought to be - into the hands of experienced biomedical researchers. And the field of retrovirology seems primed to take this on after so many years of work on HIV - still lots to learn there.
  17. Cloud

    Cloud Guest

    I am just amazed that the NIH was able to come up with such a great study. They surely must have been collaborating with the right people (such as the WPI). They have all the right objectives and much of the study focus is right on......Post Exertional Relapses, and the possible xmrv connection to this "phenomenon". Finally.....Real progress from our government health agency!!
    Since this study began in June, and was approved some time before that, it changes my perspective that the DHHS was oblivious of the ME/CFS epidemic and XMRV until the Alter/CDC fiasco.
  18. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Written by George,

    "Don't be discouraged by the long time frame, heck a year is nearly over since we celebrated the Science study, so it goes by fast. The DHHS understands that it has a major problem that has to be resolved long term.

    Questions have to be asked and answered like what is ME/CFS? What does it look like? Who has it? How do you diagnoses it?

    The DHHS realizes that all the information from the CDC is pretty much worthless so they are starting from scratch. This long term study is the legitimizing of ME/CFS for us and for the world. "

    I think they should know what this looks like! :Retro mad:Diagnosis has already been established, has it not? :Retro mad:perhaps you mean better methodology/biomarker tests.:confused:

    Questions have to be asked and answered like what is ME/CFS? :eek:I guess you mean this in a general sense?;) It's not like this disease just occurred!!:Retro mad:
  19. Cort

    Cort Phoenix Rising Founder

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    What happened is that researcher applied for a grant and lo and behold the NIH funded it - its a great grant but this is the ONLY grant on XMRV and CFS funded thus. The WPI has reportedly sent in several grants that have been turned down and its impossible to know how many other have been. In my opinion, the NIH is still letting us down - there should have been more grants by now.

    It does take time to go through the granting process. Over the next six months a good number of grants will surely have moved through the system - we'll see if the NIH is willing to cough up some more money on XMRV and CFS.

    http://www.forums.aboutmecfs.org/content.php?196-Where-s-the-Beef-The-WPI-and-the-NIH
  20. boomer

    boomer Senior Member

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    Well, since the Minister of Health Canada said in an email to me that they would be pleased to fund research proposals for xmrv/cfs, except that they had not received any research proposal yet and that was many months ago, why doesn't the WPI partner with a research body in Canada and get the projects worked on partially in Canada? Can' t my country be leveraged to assist in doing some research work.

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