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What are we waiting for really?

Discussion in 'Action Alerts and Advocacy' started by _Kim_, Apr 16, 2010.

  1. CBS

    CBS Senior Member

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    Thanks Mark.

    My apologies if I contributed to this in anyway. I've made some minor edits to by first response and have deleted my second as it was unnecessary and had the potentially to be seen as flippant.
  2. Kati

    Kati Patient in training

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    CBS I read your initial comment and I really got your sense of humor! Thanks for making me smile!
  3. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    Blowing bubbles.


    [​IMG]


    Popping bubbles.


    [​IMG]


    Blowing and popping bubbles.


    [​IMG]


    Works for me.


    [Although I'm not sure what either has to do with this thread!]
  4. Robyn

    Robyn *****

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    cxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
  5. citybug

    citybug Senior Member

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    This lecture by Dr. Klimas identifies some places to go after money. And her step one two three is like WPI's goals rather than HHS.

    http://www.aboutmecfs.org/Rsrch/XMRVKlimasII.aspx on phoenix rising
    Dr. Klimas's Lecture on XMRV Presented By PANDORA and the CFSKnowledgeCenter (Nov 2009)


    ***************
    We have one other little advantage right now, and I hope it will hold up but right now the FDA perceives Chronic Fatigue Syndrome as an Orphan Disease, an Orphan Drug Disease. That’s partly (determined) by how many people have it and they’re saying because less than 200,000 people have been identified with it, and that’s true, only 15% of patients have been diagnosed, that we will fit under the Orphan Drug Guidelines, which lets things move a little bit faster, you can get things out to market without quite as many steps. That would be good.


    Right now if I wrote a grant today to do this it would be submitted in January, it would be reviewed in March, it would go to council in July, it would be funded in September and I would get to start a year from now. So private money sometimes is the best money, particularly when you’re on the edge of something really, really big like this.
    **********
    You go to Congress, they can actually put aside money and there is one really important tool they have. There is something called the Office of Congressionally Mandated Research. This is an Army office. It comes out of the DOD budget, a very healthy budget one might say. The Office of Congressionally Mandated Research and that is absolutely the place where advocacy can put real committed dollars to an illness.

    Office of Congressionally Mandated Research (linked on that page)

    Contacts: Congressionally Directed Medical Research Programs

    E-mail: cdmrp.pa@amedd.army.mil
    ATTN: MCMR-CD
    1077 Patchel Street
    Fort Detrick, MD 21702-5024
    Phone: (301) 619-7071
    Fax: (301) 619-7796

    Questions Concerning Consumer Involvement:

    E-Mail: cdmrpconsumers@amedd.army.mil
    ATTN: MCMR-CD
    1077 Patchel Street
    Fort Detrick, MD 21702-5024
    Phone: (301)-619-7071
    Fax: (301)-619-7796

    This is the time to be philanthropic in this disease. This is your moment. This is the time your dollar makes the biggest possible difference. Hear me say that never has there been a more critical time to invest your philanthropic dollar in this disease. We wouldn’t want to you to take away from some other diseases but do it anyway. Jump Ship. Come on over because we really need this money right now to do this incredibly important work.
  6. jspotila

    jspotila Senior Member

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    Breast cancer first started getting big bucks for research through CMR. The Association began working last year to get CFS included on the list of fundable diseases. You can read about the effort here. We especially need veterans and their families who have been affected by CFS to get in touch. In order to be listed as a fundable disease, we have to show that CFS has "demonstrable relevance to the health of warfighters and veterans."

    If you are a veteran affected by CFS, or if you know someone who is, please get in touch with the office at cfidsadvocacy AT cfids DOT org. Your email will be kept confidential.
  7. Robin

    Robin Guest

    Is "affected by" the same as diagnosed with?

    My Dad is a Vietnam veteran and while he's healthy, he's certainly been affected by my illness. Would that count?
  8. jspotila

    jspotila Senior Member

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    I honestly don't know the answer to that, Robin! If he is willing, he could send the email. I will try and find out if parents of PWCs are considered "affected" for purposes of DOD research.
  9. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    I've started writing to celebrities known to have or have had cfs/me and asking them to help in anyway possible.
  10. Robyn

    Robyn *****

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    The CFIDS Association has just tossed an ambitious project in the ring that can turn pennies into dimes and nickels into dollars. The Patient BioBank project will take samples from carefully characterized ME/CFS patients and then bank them for future researchers to use. It has the potential take one rigorously defined ME/CFS sample and turn it into ten. A patient who donates to the bank today could help solve CFS 10 years from now.

    Anyone up for waiting another 10 years? How about an XMRV replication study?

    You can go here http://report.nih.gov/contactus/ to ask when the NIH will giving the NIAID money for XMRV Research.
  11. citybug

    citybug Senior Member

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    I think we should write to Michelle Obama, and send copies of the same letter to as many senators as possible. Same letter for CFSAC if writing a personal story. (testimony slots could get filled, M. Obama already picked her causes I think). and Kathleen Sebelius at HHs, top of the chain there !(added)

    I want to emphasize some money needs to go to WPI who is studying CFS patients and other Neuro Immune Centers. I'm too sick for CFSAC but would want to say --We need CFS studies at the same time as blood bank studies, not years later. And Where is the money? for grant applications.

    I was thinking I would switch to a postcard format for mine so I could print out more. The mail gets slowed by anthrax. I faxed last letters to them(no responses so far).


    Here is the letter I cut and pasted before from WPI for email circulation to friends for funds. I'm sure you all can do better.

    I had the photo pasted in from http://www.wpinstitute.org/news/news_cmm.html I think I will switch to a budding virus and update.


    May 12 is CFS Awareness Day. Please circulate for someone you know.

    A new retrovirus XMRV is discovered in CFS by the Whittemore Peterson Institute, published in research journal Science in October 2009.

    Do you know someone with CFS, Myalgic Encephalomyelitis (ME/CFS), Atypical MS, Fibromyalgia and Gulf War Syndrome? Please give to the Whittemore Peterson Institute to pursue this research.

    We need help now. Please donate a dollar or more for anyone you know and pass this on.

    http://www.wpinstitute.org/index.html Donate button

    Donate by shopping or searching, join http://www.igive.com/welcome/warmwelcome.cfm?c=53664

    Whittemore Peterson Institute

    The spectrum of neuro-immune diseases including: Myalgic Encephalomyelitis (ME/CFS), Atypical MS, Fibromyalgia and Gulf War Syndrome, share common abnormalities in the innate immune response, which result in chronic immune activation and immune deficiency.

    We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections. (See XMRV paper in Science.)

    This discovery opens an entire new avenue of Neuro-Immune Disease related research and our discovery has brought to this field world-renown immunologists and retrovirologists building our team of collaborators to translate our discoveries into new treatments as soon as possible.

    Because retroviruses are known to cause inflammatory diseases, neurological disease immune deficiency and cancer the discovery of XMRV has far reaching implications for the prevention and treatment of not only lymphoma, one of the potentially devastating complications of ME/CFS but prostate cancer and perhaps many others.

    Clinical Trials to start in fall 2010
    New treatment strategies for immune modulation and antiviral strategies have been successfully developed for chronic inflammatory disease over the last decade. Each of these drugs has had to undergo extensive investigation before obtaining approval for general use.

    January 31, 2010: Dr. Mikovits XMRV Seminar and Q&A by ProHealth and HHV-6 Foundation now available as video. http://www.prohealth.com//library/sh...fm?libid=15107

    Center for Molecular Medicine
    photo

    The University of Nevada School of Medicine, Center for Molecular Medicine, now under construction, is the future home of the Whittemore Peterson Institute. This state-of-the-art facility on the northern edge of the Reno campus is scheduled to open in 2010. In addition to the Institute the 100,000 square foot Center will house portions of several university departments and include research laboratories, clinical space, and a vivarium.
  12. citybug

    citybug Senior Member

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    On the we need confirmation front. I think members of the forum could come up with an idea for a small study that would confirm it for them. (Like WPI testing the poll members who were negative with the antibody test) who knows maybe we could get it funded.

    On waiting, we need to get going for CFSAC, May 12, and before the CDC and NIH make lots of plans for XMRV spending with CFS patients as the last priority.

    Everyone assumes WPI has lots of money. They keep saying they don't. It must be like an Oscar winner who gets no job offers. Meanwhile they keep working full speed ahead multiplying future goals, all things that we need the most: retesting negatives with antibodies, trials of drugs, working with everyone who wants to do a study.

    I wrote to mike.hillerby on donation page at WPI asking if they have info or support materials for fundraising, on the small level.

    Also asked for budget info, so we can get rid of the idea that they have everything they need. Maybe there needs to be a contact from their fundraising side. I don't think Dr. Mikovits should have to do everything. But she is a great catalyst.

    I think theCFSAC meeting preparation thread says that those committee members can't meet outside the meetings.

    So, is there any strategic planning among the different CFS organizations? There is an XMRV committee of the virologists, and the federal blood bank effort, but does anyone meet together from the advocacy side? Pandora?

    TomK posted info on WPI's Sept grant with Dr Kerr. http://listserv.nodak.edu/cgi-bin/wa...0D2B3A5423B80A

    It is 1.6 million over 5 years, which is 320,000 a year. I don't know if this is what was referred to when Kerr pulled out of study, and political problems.

    Way too tired

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