Annette Whittemore’s Next Big (BIG) Project

June 7, 2009

Posted by Cort Johnson

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

 

 

 

 

 

11 comments

{ 11 comments… read them below or add one }

Anita Patton June 7, 2009 at 1:59 pm

Thanks, Cort, for this wonderful blog about the Whittemore Peterson Institute, and also for the sample letter from Annette! I truly appreciate the assistance in giving us concrete ways to help and, mostly, for what to say!! Annette Whittemore truly has gone ab0ve and beyond, and out of the box, for us ALL and what a gift to have her talents working diligently to build a team of researchers and scientists that are going the distance for ME/CFS!!!! So….the window is open, and now we can feel the wind blowing our way!!!! yippee!! Better times are ahead of us…..

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cort June 7, 2009 at 2:07 pm

I do still feel like pinching myself about the Whittemore-Peterson Institute. And in Nevada – which is definitely not known for cutting edge research – of all places. What a huge breakthrough this would be. The WPI’s budget – for all they’re doing and they’ve already done alot – is only $1,000,000 a year.. This would increase their budget 12fold plus add four more centers (!) That’s what we’ve been waiting for; this is the proposal we’ve been waiting for! There’s a pot of money waiting to be spent – let’s finally grab some of it. This could be our time: the Whittemore’s are, after all, in deep with Majority Leader Harry Reid. If we can pick up the ball and run with it a bit I’ll bet they and he can push it over the line. They already did it once…..

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Anita Patton June 7, 2009 at 3:22 pm

I agree with you, Cort! Annette and Harvey are just amazing and if anybody can get the job done…it’s them!!! We are so blessed to have them…..

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Sue Bailey June 8, 2009 at 7:50 am

Hi Cort,

Back in February, I ran across a list of earmarks on a government website. I was really excited when I saw an earmark for $192,000 for the Whittemore Peterson Institute for Neuro-Immune Disease, Sparks, NV, for facilities and equipment.

http://www.earmarks.omb.gov/2008-earmarks/earmark_343543.html

The earmark was requested by one senator and three representatives. I didn’t know which political party they belonged to, and I didn’t care! I was just happy to see the WPI getting the money.

However, when I posted this information to a cfs/me/fm discussion list, I was stunned to see that my post was blocked by the list owner because it was “political.” Yet, I had not even identified the political parties of the people who requested the earmark. I didn’t even suggest that people write and thank them.

Here’s part of my rejected “political” post: “The request was made by John Ensign, Senator NV; Joe Sestak, Representative PA 7; Dean Heller, Representative, NV 2; and Shelley Berkley, Reprentative NV 1.”

On another note, I was glad to see the transparency related to these earmarks. The website that lists them belongs to the Office of Management & Budget, Department of Health and Human Services, Health Resources and Services Administration–and it’s great that they have made this information public. (It would be helpful if William Reeves were more transparent.)

So, now you have written that the WPI is asking the federal government to build a network of five neuro-immune centers in the US that revolve around a central hub at the WPI.

That’s political. Bring it on! Yes, bring it on!

Sue B.

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cort June 8, 2009 at 11:57 am

That must have been a shock seeing that. (Those earmarks are good for something!) I believe they’ve gotten quite a bit of federal aid. I think they’re the only ME/CFS researchers to get a grant picked up so far through the Obama stimulus package – and apparently it was a pretty hefty one. They’ve got Nevada – now they need some help from the rest of us.

I just opened a really excellent Forum package on Phoenix Rising by the way. We LOVE political discussions!

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Sweetee June 8, 2009 at 9:31 am

Thank you so much Cort! This is wonderful news. I’m so glad the Whittemores and Peterson are working so hard to help all of us.

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tomcy6 June 9, 2009 at 12:38 pm

Thanks for this great news Cort. The quality of your work, like that of the WPI, is miles ahead of others who have the big budgets. Why haven’t you been hired by the CAA? Do you think that pressure from PWCs could make that happen? What do you suggest that we who don’t have congressmen on the health commitees do?

Tom

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cort June 10, 2009 at 6:16 am

I absolutely think pressure from PWC’s can make it happen; there are so many of us – if we call really got together I think we could demand it and make it happen. I think we should all inform our congressman that we support this. Everyone needs to know about out plight. That will help to get the word out and give the committee members backing.

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Kelly June 9, 2009 at 4:48 pm

I believe that for such a goal to come to fruition we need to draw our circle larger. Patients with Gulf War Syndrome and Lyme Disease are two other groups that could benefit should these Institutes be collaborative in nature. Cort has anyone, say Annette, approached other patient groups that could add their voice to this “chorus”?

For example Patty Murray (D-WA) and Kathryn Ann Bailey “Kay” Hutchinson (R-TX) have both been strong supporters of veterans with Gulf War Syndrome and biomedical research in this area.

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cort June 10, 2009 at 6:19 am

Autism also fits under the neuro-immune rubric. I don’t who she’s approached but I imagine she’s turning over every rock to get this done. As you many know the CAA has recently become allied with several other disease groups (TMJ, IBS, etc.). Nobody’s getting the funding they deserve – these types of centers – which look at broad issues (neuro-immune issues) should be able to incorporate many different diseases under their umbrella. Good idea!

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chris June 11, 2009 at 7:07 pm

I spoke briefly to Annette Whittemore at the London conference. I wanted to express my gratitude for her incredible generosity. This gal is extremely focussed and driven. She has a good reason – she wants to make her daughter better. In this manner, I feel bound to her – we have the same goal.

I attended the Reno conference. It has only been now, in that last few days, since reading Cort’s summary, that it falls clearly into place. Cort is quite amazing as to how he can get, selflessly, to the gist of the matter. I find his work and insights to be extremely useful to me in trying to sort through all the variables of this disease and its complexities.

Chris

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