IMPORTANT 4 new research & treatment cntrs proposal join in campaign WPI

Discussion in 'Fibromyalgia Main Forum' started by simpsons, May 15, 2009.

  1. simpsons

    simpsons Member

    Annette whittlemore has put a proposal forward and has backing politically what is needed now is for you the patients to get behind them and add your support.

    imagine 4 centers and the whittlemore peterson institute testing and treating patients.

    They are working hard for us so now is the time to help them fight for us.
    This is a hugh window of opportunity

    please everyone who can email and add your support and forward on to everyone else you know who can help too. Lets get behind her 100%
    Send an Email for free membership
    >>>>> Help ME Circle <<<<
    >>>> 12 May 2009 <<<<
    Editorship :
    mail scanned by Comodo I. Security

    patricia fero
    I need your help!

    Hello Friends and Family,

    We need your help to find individuals, from the
    states listed below, who will/can join in our efforts
    to persuade key members of Congress to support a
    major research funding proposal.

    This written proposal requests designated funding
    for 3 to 4 regional medical research centers and a
    National Neuro-Immune Research Center at the WPI/
    University of Nevada.

    We need advocates like yourselves to speak out in
    support of funding for these critical medical research
    institutions so those who suffer from ME/CFS and
    other neuroimmune diseases can finally find the
    answers and receive effective medical care that they
    so desperately deserve.

    There are over a million Americans with ME/CFS, yet
    we still do not have one FDA approved treatment or
    diagnostic test for this disease.

    We have written and delivered a proposal to
    Nevada's congressional delegation and all have
    agreed to support this effort. We can't do this alone
    but together, we can!

    President Obama has given Americans a critical
    window of opportunity, through increased research
    funding, that we must use to move these important
    issues forward.

    Please pass this on to your friends and relatives or
    to anyone that you know of that may be able to help
    our cause and have them contact me through my
    email below.

    We are calling this effort "Stand Up for
    M.E." (Myalgic Encephalomyelitis/CFS).

    Thank you for your help!

    With Warmest Regards,

    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)


    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

    [This Message was Edited on 05/16/2009]
    [This Message was Edited on 05/17/2009]
  2. simpsons

    simpsons Member

  3. gapsych

    gapsych New Member

    I think eventually having regional clinics sounds like a great idea but wonder if they should get the first clinic really going as far as scientific research, treatments, etc. before considering expanding and put the money into the already existing clinic.

    It would seem that when the existing clinic is established as legitimate, not saying it isn't, it would be easier to get funding?

    What are other's thoughts. I am just pondering. : )

  4. skeptik2

    skeptik2 Member

    I agree. We have no earthly idea what they have or don't have yet.

    I'll support them with everything I have if and when I see proof.

    Buyer beware...

  5. simonedb

    simonedb Member

    I didnt quite get where we are supposed to email?
  6. denis321

    denis321 New Member

    ESPECIALLY since there so little is known about CFS. It has no bearing whatsoever whether the WPI is successful or not. One center is not enough to advance CFS research.

    For many illnesses, there are Centers of Excellence which not only provide a one-stop medical care (i.e. specialist physician, social workers, dieticians,etc.) but also perform cutting edge research and train physicians, nurses etc. in the specific illness. These are things that are sorely needed for CFS. They often coordinate research efforts nationally. These are places physicians refer to when they face a challenging illness in a patient; I know because there are physicians in my family.

    If you look at other illnesses - e.g. MS, cancer, Parkinson's disease, even some unusual genetic disorders -there are multiple Centers of Excellence for them nationally despite these illnesses being more recognized and in some cases, more treatable, than CFS.

    In fact, the U.S. had 4 national CFS research centers (based at universities) in the late 1990s but, for unclear reasons, their budget was cut and they were disbanned in early 2000s. The University of Miami, where Dr. Klimas works, was one of these centers.

    The federal CFS advisory committee, meeting at the end of May, has recommended that five Centers be established for CFS since 2004 but it has fallen on deaf ears at the federal level.

    I wrote to Ms. Whittemore for more details but haven't heard anything yet.
    [This Message was Edited on 05/19/2009]
  7. denis321

    denis321 New Member
  8. denis321

    denis321 New Member

    "In 2001 when the NIH was still running the three Cooperative Research Centers the NIH funded 43 studies/projects including funds for the Cooperative Research Centers that were directly focused on CFS. At their peak the CRC’s were publishing from 10-15 studies a year."

    "In an interview recently posted on the Phoenix Rising website Dr. Friedman, a past member of the CFSAC, stated that the ‘decision to cancel the funding of those Centers had a numbing effect on CFS research whose consequences are still being felt today'"
  9. denis321

    denis321 New Member

    Don't mean to cram this down anyone's throat but just showing you Ms. Whittemore isn't spinning stuff out of thin air.
  10. gapsych

    gapsych New Member

    Right now it does seem to be stuff out of thin air. Ms. Whittemore alludes to some therapies and in one interview said there were and then retracted her statement saying she meant something else.

    This is spreading the monies and resources too thin at this point. Once the first clinic is up and going and so far nothing much is coming out except a lot of speculation, then other clinics will be able to supplement their income as it will be easier to get grants as well as legistation passed to help fund the centers.

    The government is going to want accountability and if one center can do this, it paves the road for the others.

    I have just been very unimpressed with what they have told the public so far.

    Even the meeting in April(?) was somewhat disappointing as it seemed people were just spinning their wheels and nothing new was really said.

    I think the public deserves to have more information, if there is any or not.
    I would like to see many centers but in the future.


    [This Message was Edited on 05/19/2009]
  11. simpsons

    simpsons Member

    Found this article on pro health by cort johnson pheonix rising on prohealth

    Below this is an abstract of a research paper they have already published.

    “We believe that by bringing committed scientists, physicians, and advocates together, we will find the truth about this significant public health threat, sooner rather than later." - Annette Whittemore In some ways Annette Whittemore is your typical ME/CFS mother. Like many other mothers, she recalls her concern turning to alarm and then horror as she watched her young daughter collapse with a mysterious illness. Andrea Whittemore was a healthy 11-year-old when a racing heart, severe headaches, nerve pain and exhaustion confined her to bed. At her worst moments Annette Whittemore feared her daughter was dying.

    Trips to their primary care physician were no help - and soon the Whittemores, like so many others, were on the ME/CFS treadmill, visiting specialist after specialist. Ten years would pass before Andrea, under the care of Dr. Daniel Peterson, achieved a substantial improvement on the experimental antiviral drug AmpligenR.

    Annette knew her daughter was fortunate to have parents with the resources to scour the medical field for help and provide her access to experimental treatments. Not only do many ME/CFS patients have trouble simply getting a diagnosis, but their treatment often consists of nothing more than calls for rest and anti-depressants. When they do find a knowledgeable doctor, special treatments such as Ampligen are often unavailable or simply too costly.

    She recalls, "I was constantly being asked if I knew anyone who could help these people." Frustrated by her inability to help, one day Annette had an epiphany, "I couldn't understand why there wasn't more being done. Somehow or other, I got up one day and thought that maybe that somebody was supposed to be me.”

    A Revolutionary Partnership

    Meanwhile Dr. Peterson was dealing with frustrations of his own. For more than 20 years he'd waited for the federal government to create the kind of integrated research/treatment/education centers that ME/CFS patients so desperately need. Fed up with a federal response he called “abominable,” he was chomping at the bit to get an opportunity to take a more comprehensive approach to this disease.

    Over Andrea's bedside, concerned activist mother met frustrated physician/researcher - and a partnership was born that may change the face of ME/CFS research and treatment.

    Dreaming big, they envisioned something that had never been done Institute that would:

    * Provide cutting edge treatments,
    * Stimulate research into neuro-immune issues,
    * And provide outreach to a new generation of physicians and researchers.

    This link takes you to their basic research programm

    looks interesting > > Cytokine > > Volume 43, Issue 3, September 2008, Page 245 > > Special Issue - Abstracts and Reviews: 7th Joint Conference of the > International Cytokine Society and the International Society for > Interferon


    > 36 > Serum cytokine and chemokine profiles of individuals with myalgic > encephalomyelitis (ME) reveal distinct pathogen associated signatures >

    > > Vincent C. Lombardi 1,2, Doug Redelman 2, Darren C. White 1, Marc > Fremont 3, > Kenny DeMeirleir 4, Daniel Peterson 1, Judy A. Mikovits 1,2, >

    > > 1 Whittemore Peterson Institute, Reno, NV, USA, > 2 Department of Microbiology and Immunology, University of Nevada, Reno, > NV, > USA, > 3 Protea Pharma, Brussels Belgium, Belgium, > 4 Free University of Brussels, Academic Hospital Brussels Belgium, > Belgium >

    > > Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a > Heterogeneous disease with unknown etiology. Previous studies have shown > that viral > specific > immune responses and immune abnormalities play critical roles in the > pathogenesis > of ME/CFS. The central problem in the management of patients with ME/CFS > is > the > lack of biomarkers for patient stratification into subgroups according > to > distinct > immune responses, virus infections and neurological abnormalities. This > situation > hinders both the diagnostic process and development of specific > treatments.

    > In this > study our aim was to subgroup ME/CFS patients based on serum chemokine > and > cytokine > profiles with the ultimate goal of establishing disease parameters on a > molecular > level that correlate with distinct disease phenotypes. We used > suspension > antibody > microarrays of 25-cytokines and chemokines on a Luminex platform for > serum > profiling > of 168 ME/CFS patients and 140 healthy controls. Our analysis has > revealed > distinct > pathogen associated signatures with significant 5- to 200-fold > differences > between patients and controls for the inflammatory serum chemokines > IL-8, > IP-10, > MIP-a and MIP-1b, as well as the pro inflammatory cytokines IL-6, TNFa > and > IL-1b.

    > Moreover, our data shows for the first time in ME/CFS a cytokine and > chemokine profile, > which suggests a TH17 shift in subgroups of our cohort. We conclude that > cytokine > and chemokine patterns in subgroups of ME/CFS can be used > diagnostically, as > serum biomarkers to stratify patients for appropriate anti-inflammatory, > antimicrobial > and antiviral therapeutics.

    > > doi:10.1016/j.cyto.2008.07.077
  12. denis321

    denis321 New Member

    It's just that you will find very few patient/ disease advocacy groups who say "Let's wait until we get good results from one center before we ask for another one."

    It takes a lot of time to get good results going and one center devoted to CFS is not enough to advance the research forward. There are rarer diseases than CFS with multiple Centers of Excellence in the country.

    Also, the way that CFS research has been funded/ conducted in the U.S., piece by piece coming from a few universities, has not resulted in a diagnostic test or treatment over the last 20 years. Multiple CFS researchers/ clinicians have asked that CFS centers be establish to jumpstart research.

    I have a family member who is a successful fundraiser. This person has told me that he always asks specifically for what he wants and for more than he will need because you may get less than what you ask for.
  13. simpsons

    simpsons Member

    There may not be one single test but there are tests used to diagnose ME set out in the canadian guidelines. The WPI are working on a single test along the lines of the paper above. But are we shooting ourselves in the foot by saying there is no one test. Mary S in her submission states that there are tests also. We need to get behind these centers in order to move forward at a faster pace

    Check out the post on epidemic ME where these links are from. i think you.ll find it very interesting

    Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and
    Guidelines for Medical Practitioners

    An Overview of the Canadian Consensus Document -
    Carruthers, van de Sande et al

    The Clinical and Scientific Basis of Myalgic
    Encephalomyelitis/Chronic Fatigue Syndrome

    Hyde, Jay Goldstein, Paul Levine – Published by The Nightingale Research
  14. LindaJones

    LindaJones New Member

    thanks for posting
  15. simpsons

    simpsons Member

    ok so now we know that the cfsac and the cdc are the guys to direct our attention on to promote these much needed centers.

    We must not let the grass grow under our feet and must keep this snowball that is the ME movement going until it hits the cdc and wipes out all previous policy, Reeves is sacked and they listen to the cfsac's recommendations

    We have seen advocacy at its best with the meetings being broadcast the patients speaking and the scientists giving evidence

    lets DARE TO DREAM

  16. denis321

    denis321 New Member

    I wrote to them asking for details as the more specific they can be, the easier it would be to ask my governmental reps to do something. E.g. it would help to see if they already have a Congressional sponsor, how much they are asking, what they are calling the proposal, etc.

    Has anyone heard more details?
  17. outofstep

    outofstep Member

    I wasn't around when they were seeing patients, but they published a consensus manual so that pcp's would know what to look for and how to at least treat the symptoms. CFS was legitimized as a result. We need these places-not just because people will have somewhere to go for treatment instead of going across the country to find a specialist, but also because they act as thinktanks and produce lasting longterm results. We need to do some kind of organized grassroots campaign going to lobby for these centers.
  18. skeptik2

    skeptik2 Member

    They were both in the research/treatment centers shut down. They should be able to tell us why, and what their responses would be regarding opening new centers again.

    I have noticed Natelson's name on many papers since the centers were shut down; and, of course, Nancy Klimas is now at the CDC, and seems to agree that Reeves must go and now.

    If we know why the old ones were shut down (and I think it was because they were getting too close to the truth of M.E.), we may be able to find a strategy (with their help) of how to get them reopened/restarted.

    I remember something about Natelson being very angry at being shut down because he felt he had seen enough patients that were very sick and needed help desperately.

    Surely, it isn't just the CDC and/or NIH that woud have underhanded reasons to keep us from knowing the truth about ME; it would take far more power and control to do that. Could Administration's of the past 30 years possibly have some hand in all this "cover-up" going on? Seems impossible to believe, but what other conclusion can we come to?

    I understand the politics of the cost of ME to the economies of countries, so if it is made psychosocial, then the victim can be blamed; but wouldn't it be cost-effective to have diagnostic tests and specific treatments that get PWC/MEs functioning again?

    Doesn't therapy with CBT and GET cost a lot of money to provide? Especially when it doesn't work?

    I know Kay Baily Hutchinson, of TX couldn't care less. I have letters from her in my files that "pooh-pooh" our concerns ever since 1993; she hasn't done one thing to advance our cause, and she's not about to change, IMHO.