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!
Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.

Article: Where's the Beef? The WPI and the NIH

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 3, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    650
    Likes:
    1,011
  2. Stone

    Stone Senior Member

    Messages:
    371
    Likes:
    6
    NC
    Do you think there is any potential for earnings with the thing's for which they've applied for patents? Or is that too far down the road? What about the move with VIPDx? Anything promising there?
  3. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    I'm sure they are getting revenues from tests with VIP Dx - I simply have no idea how much or what it costs to keep the WPI rolling and active. Dr. Mikovits has made reference to their lack of money. Other than that I really don't have any idea where they are financially - it just seems to me strange that they haven't received any federal funding for XMRV research at all.
  4. Stone

    Stone Senior Member

    Messages:
    371
    Likes:
    6
    NC
    I certainly does, Ollie. I wish I knew the answer. There are a lot of things fishy about this.
  5. Sherby

    Sherby Sherby

    Messages:
    91
    Likes:
    0
    London UK
    I would have thought that they want to keep ME/CFS in-house. That way they can control information, treatments and costs. WPI is just a thorn in there side.
  6. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    35
    Texas
    Thanks Cort! This is my worry as well. Lots of people are scrambling to make money on this and WPI seems to be left to fend for itself. I would like to know that we have a well funded research institute that is searching for answers with regard to neuroimmune disease. However, they need money.

    "It’s too early to tell if a pattern is emerging but it is perhaps time to wonder about the future of the WPI and XMRV. The WPI lead the way on XMRV and CFS but will they in future? Can they if they don’t get ample funding? If they can’t get XMRV grants - what kind of a future awaits the CFS community? Hopefully a new group of researchers would bring new eyes to XMRV and CFS, but given CFS’s torrid history with the mainstream research community, surely everyone would breathe easier knowing that a strong, independent, committed research institute like the WPI was at the forefront of the ME/CFS-XMRV effort."
  7. anciendaze

    anciendaze Senior Member

    Messages:
    870
    Likes:
    933
    This reminds me all too much of the strategy for dealing with DeFreitas and Wistar. When potential investors heard from Stephen Strauss that there was no infectious disease, just a bunch of neurotic patients, they lost interest. They might have had doubts about the correctness of his opinions, but there was never any question about his ability to block trials of drugs and certification of tests. Without the ability to sell results, any investment would be a total loss. A second parallel arises with constant demands for further proof, with considerable costs and demands on her time, while grants were being handed out to other people.

    A similar strategy in another field comes to mind. Anyone recognize the context of the statement, "We'll cut off their air supply." ?
  8. John Leslie

    John Leslie

    Messages:
    39
    Likes:
    0
    All of the big players (other than Abbott who is tied to the Cleveland Clinic's "XMRV prostate sequence") will have to negotiate a deal with WPI to play in the XMRV game. Biorad, Gen-Prob, Quest, LabCorp, and the private equity folks will be calling. With a fair licensing deal the WPI should be able to generate funds for research and clinical care. Ever wonder why Abbott didn't do anything with XMRV from 2006 (when they did their deal with Cleveland Clinic) until 2009. They were and are still looking for the sequenced XMRV with the wrong process.
  9. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    And all of this is why WE must be the ones to beat on the Feds and support WPI as much as we can. Don't wait for the government to do anything that isn't shoved down their throats. WE must be the major noise makers in all ways possible. WE must educate everyone - the public, doctors, the media, those around us on CFIDS and XMRV. I have done a lot of explaing about CFIDS and XMRV in the past several days because I had to take my 70 year old neighbor to the hospital for knee surgery, stay with her, and then run to the dentist, the vet, etc. and everywhere I went, there was a discussion on CFIDS and XMRV. I was kind of surprised that the people (receptionists, nurses, doctors, dental assistants, and the dentist) were not really aware of CFIDS/CFS or XMRMV. Basically they knew little to nothing about either. That tells you something when you incounter the medical profession, many actually quite bright and informed people in this case, not knowing about a very real disease and a deadly, contagious virus.

    The government doesn't want XMRV out there and terrifying the public as another HIV, for a number of reasons. So they have kept the lid on XMRV thus far. But when finally the NIH and FDA studies (WHERE THE HELL ARE THEY) come out, and hit the press, etc. there is going to be a public uproar and a far better informed and demanding public.

    I will say that when I told one dental assistant that XMRV is a retorivirus like HIV she sort of pulled back from me. So I realize we are going to be getting treated like lepers who may spread that horrible virus to everyone. But too bad. I've been treated so horribly for having a "fake" disease for so long that actually scaring people with a contagious virus is sort of "cool" in an admittedly immature and nasty sort of way. Or maybe because it's more real and I'm no longer a lazy flake but a sick person with a virus.

    Anyway, WPI did fling open the door on XMRV and CFIDS and for that I can't thank them enough. It really is the job of the Federal government to fund the research for a potentially (probably) highly contagious and deadly virus and one that may well be part of the secrets to cancers and other diseases. They don't know enough about this virus to make decisions on funding and for that reason they do need to spend the money and get the research done to see if there is a horrible, huge potential for horrific damage by this newly discovered virus. I guess they are doing that and IF they (the Feds) think that there is more to this virus then the funding will shoot up as HIV/AIDS funding did - into the billions, still.

    Bottom line: WE MUST KEEP BEATING ON THE FEDERAL GOVERNMENT. We must continue to provide support to WPI so that they can continue research to further prove that this virus must be given significantly more funding for research by the Federal health organizations.

    Good writing Cort, as usual.
  10. JillBohr

    JillBohr Senior Member

    Messages:
    247
    Likes:
    0
    Columbus, OH
    Here is a link to the NIH peer review process. It breaks it down to the levels of how a grant is approved and even has links to the people involved. Perhaps we should start contacting them and advocate they review and accept proposals relating to XMRV and how it impacts us.

    http://grants.nih.gov/grants/peer_review_process.htm
  11. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    What really reminded me about DeFreitas was her inability to get grants after her discovery and her considerable anger at watching the NIH fund another researcher to study her virus. She really needed money and there was the feeling that she was being punished for a) announcing the results of the study before it got published b) talking to the media about the results before the study was published and c) being funded by the CFIDS Association.

    I've never really bought the Stephen Straus came into, I forget which pharmaceutical company, and took the DeFreitas virus testing program down story. That company had licensed from the rights to her virus from Westar and had been working on it for six or eight months. They seemed to make progress at first but then, like the CDC, they got stuck. After reportedly spending a lot of money on the program they brought in some more experts to evaluate the program. Stephen Straus was one of them. At that point they decided to discontinue the program. These pharmaceutical companies have a lot of expertise - they had the potential of making a lot of money on the test - but they apparently felt it wasn't going to happen. I imagine that he simply push them a bit in the direction they were already going.
  12. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    Good point John! Think of all the money WPI could generate if XMRV was validated and found to be a major factor in CFS. Think of all the people showing up at Dr.'s offices with problematic fatigue - there's a gold mine sitting out there for somebody who could come up with a good quick diagnostic test.:victory: (Not to mention the possibility of it being in fibromyalgia and other diseases.)
  13. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    I get the impression that Abbott labs might want that money. Perhaps this is why Mikovit's is being told she cannot present at the Abbott lab funded conference?
  14. Gemini

    Gemini Senior Member

    Messages:
    392
    Likes:
    266
    Office of Research on Women's Health(ORWH)'s Director, Dr. Vivian Pinn, has final say on NIH ME/CFS research projects; Eleanor Hanna, PhD, coordinates them for her. Hanna's field of expertise is Substance Abuse; her degree is in Psychology.

    External peer reviewers read, score, critique, approve/disapprove grant applications. The director usually follows their recommendations. Key question-- who are they(names?), what are their skills/qualifications? Do any of them specialize in infectious diseases/immunology? Or are they from the "Psychology School" backing the psychiatric, perception-based model of ME/CFS?

    ORWH hasn't updated ME/CFS grant status/accomplishments on their website in over 5 years:
    http://orwh.od.nih.gov/cfs.html.

    Dr. Pinn is the one to contact: ODORWH-research@mail.nih.gov.

    Gemini
  15. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    For sure Abbott wants that money.... This could be a huge market - I'm sure they, the NCI, Dr. Singh, Glaxo, WPI......whoever, are doing whatever they can to win the race. I wonder if any of those people are presenting...I think Dr. Singh is actually (?) - and they are working hard on a serology test I believe.

    Dr. Mikovits said she was told that it was because she was too much of a 'patient advocate'. She told me they were also afraid she was going to talk about autism - so several things probably came into play - difficult to tell for sure. Dr. Ruscetti was apparently very upset that Dr. Mikovits was not asked to present - as he should have been - this is, after all, about the science is it not?

    Dr. Singh is on with Dr. Racaniello tomorrow.
  16. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    If the conference is behind closed doors, than what would be the problem with talking about Autism?
  17. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    Here's what I understand happens; grants go to the CFS SEP - which has traditionally been slanted towards pain researchers. If a grant gets an acceptable score there then its sent to the Trans NIH Working Group - a group of Institute representatives. They decide which, if any, grants they want to support and then they go to their individual institutes and asked them for money. You can see what a muddled process this is. The ORWH doesn't have much money - they almost never provide money for grants - so this group of Institutes - none of which has responsibility for CFS decides if they grant will be funded.

    The only group with the incentive to find CFS, the ORWH, doesn't have any money. The actual funders don't have a incentive because they're responsible for their own programs. Because the buck doesn't really stop anywhere the CFS program languishes and dribbles away.Its a structure built for inaction - which is what has happened. The last major grant effort in CFS - which Vivian Pinn described as being small as a grant effort as was possible to put together - happened over five years ago.

    The CFS grant for XMRV did go through the CFS SEP - which, honestly, was a small miracle, given the way things have gone. :)
  18. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    You might want to ask Dr. Mikovits - she was the one that said that - or better yet ask the organizers. It does show, though, that going to and speaking at that controversial Autism conference probably didn't do her or us any good.
  19. garcia

    garcia Aristocrat Extraordinaire

    Messages:
    933
    Likes:
    102
    London, UK
    Cort what is so "controversial" about Autism? I think those in the autistic-community might take exception to this characterization of their condition.
  20. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    35
    Texas
    Bottom line.......Lots of posturing, positioning and politics going on here and it does not seem favorable to persons with neuroimmune disease. I can't help but wonder why Abbott was so intent on hiding the fact that they were the co sponsors for this workshop. It was obvious that there was another sponsor due to the wording on virology education and there was reason to beleive abbott was that sponsor. We sent many emails to abbott and virology education with no reply. My sister left several messages with abbott and finally spoke to someone there. My sister was told that abbott is NOT sponsoring any xmrv workshop. A few days later virology education added a sponsor button to their website with abbott as the co sponsor. What this all means I am not sure but It left me feeling uneasy. We should all know what is going on with this research and where the funding is coming from! It is our right considering it will have a direct impact on our lives.

See more popular forum discussions.

Share This Page