stand up 4 M.E. 5 new research and treatment centers 5 wpi's

Discussion in 'Fibromyalgia Main Forum' started by simpsons, Jun 7, 2009.

  1. simpsons

    simpsons Member

    "The kind of research you want done finally being done - in large quantities. The real possibility of a breakthrough. But if it’s going to happen it’s going to happen now. The window of opportunity is open now". now is the time to get behind this annette has a ready written letter for you to send. Lets get behind this and dare to dream

    Bringing the Heat: An ME/CFS Blog phoenix rising
    http://aboutmecfs.org/blog/?p=583

    A wide-ranging, often rankly speculative and occasionally irreverent take on the world of chronic fatigue syndrome (ME/CFS)
    Annette Whittemore’s Next Big (BIG) Project

    by cort on June 7, 2009

    Annette and Harvey Whittemore pulled off something of a miracle when they convinced the state of Nevada to help them build the first chronic fatigue syndrome (ME/CFS) research, treatment and eductation facility in the world.

    The medical establishment, after all, has been almost as hostile to ME/CFS patients as the disease itself. The Whittemore-Peterson Neuro-immune Institute is an affront to the medical community’s disregard for this disease - a beachhold of hope that chronic fatigue syndrome (ME/CFS) patients can cheer about. But Annette Whittemore has always had a large vision and she wants more - much more.

    What do armies do after they establish a beachhead in hostile territory? They move on - and that’s what Annette Whittemore proposes to do; if she has her way the WPI will be just the beginning of a larger ‘invasion’ of the medical establishment.

    Stand Up for M.E. In the ‘Stand Up for M.E’. project she proposes that the federal government build a network of five neuro-immune centers in the US that revolve around a central hub at the WPI. The centers would cost $75 million dollars over five years. This is an audacious proposal indeed but no more audacious than having the small state of Nevada build the first chronic fatigue syndrome center in the world on it’s University campus.

    It’s also very timely. This is a unique period in the history of the NIH. With its 30% boost from the Obama stimulus package (10 billion dollars) it’s simply awash in money and it’s using most of it to build structures and buy equipment i.e. to build just the kind of facilities that Annette proposes. This opportunity will not come again.

    It’s also a dangerous time. The winners are going in lock in federal money for decades to come which will, of course, leave less for everyone else. If we don’t get in now it’s going to be all that much harder to get funds in the future.

    Think of it - five WPI’s! The federal budget on ME/CFS quadrupled. Real research centers. Real treatment centers. The kind of research you want done finally being done - in large quantities. The real possibility of a breakthrough. But if it’s going to happen it’s going to happen now. The window of opportunity is open now and but it’s closing.

    Can Annette Whittemore succeed on the federal level? In fact the WPI has already received substantial federal help. No one should forget either that the Majority leader of the Senate is Senator Harry Reid of Nevada, a strong chronic fatigue syndrome (ME/CFS) supporter for many years. The entire Nevada delegation is behind her.

    What she needs now is us. She particularly needs the help of people who are represented by politicians sitting on the health committees. Please communicate with your elected officials and ask them to support this project. Annette has provided a sample letter below and please e-mail when you’ve done so.

    Majority Members
    Tom Harkin (D-IA), Chairman
    Arlen Spector (D-PA),
    Daniel Inouye (D-HI)
    Herb Kohl (D-WI)
    Patty Murray (D-WA)
    Mary Landrieu (D-LA)
    Richard “Dick” Durbin (D-IL)
    Jack Reed (D-RI)
    Mark Pryor (D-AR)
    ?
    Minority Members
    Thad Cochran (R-MA)
    Judd Gregg (R-NH)
    Kathryn Ann Bailey “Kay” Hutchinson (R-TX)
    Richard Shelby (R-AL)
    Lamar Alexander (R-TN)

    SAMPLE LETTER

    Re: The National Center for Neuro-Immune Disease Research with Regional Medical Research Centers

    Dear Senator/Congressman____________:

    I am writing to urge you to support any congressional efforts to create a new comprehensive center for the study of ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome) and related neuro-immune diseases in the State of Nevada and five regional medical research centers across the United States. Up to four million people in America are currently suffering from Chronic Fatigue Syndrome; millions more suffer from similar diseases with no known cause. With the proposed partnership, great progress and strides could be made in the research of these diseases that have affected so many Americans for too long.

    The new National Center for Neuro-Immune Disease Research would be collaborative public/private partnership involving the University of Nevada, Reno and the Whittemore-Peterson Institute for Neuro Immune Diseases (WPI). The regional centers would serve as collaborative partners of the national center sharing clinical research resources translating to the most effective patient care in the shortest period of time.

    The Whittemore Peterson Institute has already established a significant research program in ME/CFS at the University of Nevada and will open in the new Center for Molecular Medicine, a 100,000 sq ft. medical research building, in the fall of 2010. The WPI research program is expanding its reach into other neuroimmune diseases and the cancers that most often develop in these patients. We are “shovel ready” for this important leadership role and ask for your immediate support. We are requesting funding levels of 12 million dollars a year for five years for the National Research Center and 3 million per year for each additional regional center or a total of 75 million dollars for the entire project. If only 10 percent of the patients with ME/CFS were able to return to work, the US would save over 1 billion dollars in lost wages and billions more in health care costs.

    Funds will be used to support various activities including, but not limited to, seed grants, equipment, facilities, patient care, clinical trials, education, public outreach, and the training of graduate students, medical students, and residents. The new Institute and center will run cooperative clinical diagnostic and treatment programs for patients with neuroimmune diseases such as ME/CFS and fibromyalgia, facilitating clinical trials of promising new diagnostic methods and treatments. It is important that all patients with these neuroimmune diseases, throughout the United States, have access to the highest quality of care.

    A program of this nature would support the needs of a huge population of patients who are truly underserved. Creating this partnership brings important translational research to the forefront in this medical field. Again, I urge you to support this effort and collaboration for neuro-immune disease research and I sincerely thank you for all you’ve done for our community and state.

    Regards,

    Annette Whittemore
    Founder and President
    Whittemore Peterson Institute
    for Neuro Immune Disease
    6600 N Wingfield Pkwy
    Sparks, NV 89436
    775-348-2335 Phone
    775-348-2350 Fax
    annette.whittemore@wpinstitute.org
    [This Message was Edited on 06/08/2009]
  2. Spinetti

    Spinetti New Member

    Dick Durbin is my senator. Time to send him another letter. Thanks!
  3. LindaJones

    LindaJones New Member

    thanks for posting
    many people are suffering from cfs and there are no treatment centers where they can get help
  4. simpsons

    simpsons Member

    thanks guys this would be fantastic wouldn.t it.

    linda you are so right there are many people suffering with no treatment centers where they can go for help.

    this would really make a difference

    perhaps people could get sympathetic friends carers and family to write as well
    [This Message was Edited on 06/08/2009]
  5. jasminetee

    jasminetee Member

    Thank you so much for posting this!

    "In the ‘Stand Up for M.E’. project Annette Whittemore proposes that the federal government build a network of five neuro-immune centers in the US that revolve around a central hub at the WPI." ~ Cort Johnson

    *(here's a link at Prohealth about Cort:

    http://www.prohealth.com/library/showarticle.cfm?id=8438&t=CFIDS_FM)

    5 more Centers for CFS!!! Yeah! That would be incredible!

    The NIH is awash in stimulus money from Obama? And they can spend it on WPI Centers? GOBAMA! Yes we can! And thank goodness for Senator Harry Reid of Nevada; our advocate. :)

    Now, are we to send letters to all of the politicians on the list? 'Cause I don't see my state represented.



    [This Message was Edited on 06/08/2009]
  6. skeptik2

    skeptik2 Member

    i agree with you wholeheartedly; Sen. Reid has been our advocate for years and years.

    Can we write to the others not from our state? Will they care if they do not represent us, in another state?

    Does anyone know?

    skeptik2
  7. simpsons

    simpsons Member

    why not write to the president himself as well
  8. Spinetti

    Spinetti New Member

    I used Sen. Durbin's contact form on his website and personalized Annette Whittemore's letter.

    skeptik2 – I don't think contacting an out-of-state representative could hurt and could help by showing wide spread support. Generally, constituents get the most attention and are the only ones who get written responses.

    Sen. Harry Reid is national leader and would no doubt welcome support for projects in his state. His website is

    http://reid.senate.gov/

    Now I can enjoy today's Cubs game in peace!
    [This Message was Edited on 06/09/2009]
  9. jasminetee

    jasminetee Member

    Oh, I just realized why these particular politicians are on this list. At the end of the article it says:

    What Annette Whittemore needs now is us. She particularly needs the help of people who are represented by politicians sitting on the health committees. Please communicate with your elected officials and ask them to support this project. Annette has provided a sample letter below and please e-mail when you’ve done so.

    Majority Members
    Tom Harkin (D-IA), Chairman
    Arlen Spector (D-PA),
    Daniel Inouye (D-HI)
    Herb Kohl (D-WI)
    Patty Murray (D-WA)
    Mary Landrieu (D-LA)
    Richard “Dick” Durbin (D-IL)
    Jack Reed (D-RI)
    Mark Pryor (D-AR)
    ?
    Minority Members
    Thad Cochran (R-MA)
    Judd Gregg (R-NH)
    Kathryn Ann Bailey “Kay” Hutchinson (R-TX)
    Richard Shelby (R-AL)
    Lamar Alexander (R-TN)

    So if you're from one of these states it would be great if you could send the letter to your rep(s) listed here. Since I'm not I will be sending the letters to my Senators and my Congressperson.

    Thanks,
    tee
  10. Spinetti

    Spinetti New Member

    To get an idea of the terrific potential of the WPI and regional centers watch the interview. It's titled "Real progress in ME/CFS research" and is available on YouTube at

    http://www.youtube.com/watch?v=TRtxMYI-zKg
  11. skeptik2

    skeptik2 Member

    They are setting up a project called "Advocates Extrordinaire" and marly silverman says they are going to do 10 polls and take the results to Congress, the DHHs, CDC, NIH and others, the purpose of which is to get the WPI's Institutes done, and now.

    Thing is, I already took the survey about the change of leadership desired at the CDC, and duhhhh, don't know their website...

    Does anyone know PANDORA's website? Thought I had it on hand and don't...

    Googled it and got all kinds of crap; they should be at the top of the list, don't you think?

    Thanks for the help,
    skeptik2
  12. simpsons

    simpsons Member

    haven't had time to check out that they are for the wpi could you post that bit for me please.
    here is the link for the poll
    http://survey.constantcontact.com/poll/a07e2j0j8jpfvjw46k4/start.html

    here is pandoras link
    http://www.pandoranet.info/

    i.ll post the pandora advocates in full in new post
  13. skeptik2

    skeptik2 Member

    I had been leaving out the "net" part!

    I signed up to be and Advocate; they are going full tilt to support CFS being given to the NINDS part of NIH and the WPI institutes of care. I've written my thoughts in 2-3 relevant threads here.

    I can't post links; bad computer, so I have to ask others to do it, so thank you so much for your answering my request!

    skeptik2
    p.s. added: Can someone get to Harry Reid and ask him to get Hillary's speech and Anderson's article to Obama?[This Message was Edited on 06/10/2009]
  14. simpsons

    simpsons Member

    we live only in the shadow of the real world
    in order to get into the real world
    we have to dream

    Dare to Dream

    in business i would alway write to the top director and they would assign it to their top men it got attention i can tell you

    send it

  15. gapsych

    gapsych New Member


    I agree with you. This is one of the reasons I think starting with the one center will help get funds in the future. We may be asking too much, too soon. Unfortunately this is how politics work. If wishes were horses this would have come about decades ago.

    I know a lot of people will disagree with this statement. I support the recommendations, but I do have reservations about five clinics at once, possibly spreading money and resources thin. I think is how the bureaucrats in Washington might spin this.

    I would love to see regional centers as it may benefit a lot of us and grant credibility to our DD. But is it realistic at this point?

    This is my view, which many do not agree with but I think it is important to see all sides.

    I will of course vote yes.

    No, I am not a traitor, just a different take on starting with five centers. Happy Face Here!!!

    gap
  16. skeptik2

    skeptik2 Member

    I see your reasoning, and of course no one thinks you a traitor!! Nooooo waaaaay! You have a very good point regarding the way politicians will see the effort to open five centers at once.

    However, (I usually try to think of one, LOL), as simpson says, DREAM BIG!

    We have waited an entire generation; there is stimulus money available and the WPI is going to ask for the funds to open 4-5, which is a drop in the bucket ($75M) in the healthcare budget.

    So I'm hoping for the whole ball of wax.

    skeptik2
  17. simpsons

    simpsons Member

  18. simpsons

    simpsons Member

  19. gapsych

    gapsych New Member


    Actually, I could go either way but was trying to show another side. Thanks for letting me know I am NOT a traitor, LOL!!

    In the end, I will support what the committee at the CDC is recommending.

    gap
  20. jasminetee

    jasminetee Member

    You have no worries of us thinking you're a traitor. You make a good point. It will be interesting to see what happens. The main thing is that we have the WPI. :)

    tee