Dear Readers,

The following article is so exciting to me. The first project Mrs. Whittemore initiated was a groundbreaker and now she is planning something much, much bigger.  This is my first article in its entirety (written by Cort Johnson via Co-Cure).

Also, see below the latest news from the CFIDS Association. Advocacy projects for anyone who can and is interested in being involved in.  You can subscribe to get CFIDSLink E-Newsletters and get the news from the CAA as soon as they publish it instead of when I am able to get a newsletter out.

Nancy

Annette Whittemore’s Next Big (BIG) Project

by Cort (Johnson)on June 7, 2009 (Author of Phoenix Rising Web Site)

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

 Date:    Mon, 1 Jun 2009 14:12:48 -0400
From:    "The CFIDS Association of America cfidslink@cfids.org via Co-Cure
         Moderator" <ray@co-cure.org>
Subject:  Ask Secretary Sebelius to Take Action on the CFSAC Recommendations

          Updated: VIRTUAL LOBBY DAY ACTION #2
    ====================================
    Write to Secretary of Health Sebelius
   
    Take Action! Visit this page:
    http://capwiz.com/cfids/utr/1/AEOFKOYXRK/JORWKOYYAC/3419517586]

    
    Kathleen Sebelius is the Secretary of Health and Human Services. She is responsible for all the agencies of the Department of Health & Human Services (DHHS), including the National Institutes of Health (NIH) and Centers for Disease Control & Prevention (CDC). On May 27-28, the federal CFS Advisory Committee met and passed a set of three recommendations, copied below. Please use our form letter to support swift implementation of these recommendations by Secretary Sebelius.



Recommendations from the CFS Advisory Committee to the Secretary of Health & Human Services
May 28, 2009

Recommendation #1: Establish progressive leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education.

We have heard from the IACFS/ME president who represents the scientific CFS community, call for new leadership within the CDC's CFS program. We also learned that a CFS patient group has over 1000 signatures asking for a change in leadership at the CDC's CFS program. Furthermore, we continue to hear complaints from patients during public testimony about a number of issues involving the leadership at the CDC. In addition, a number of patient organizations have called for a change in leadership of the CDC's CFS program. We are concerned with input from these diverse groups. We also felt that the 5-year plan offered at our CFSAC meeting was ambiguous concerning what could be accomplished with available resources, and also seemed to lack a bold vision to significantly advance the field.

Approved by unanimous vote.

Recommendation #2: Provide adequate funding to effectively carry out a detailed 5-year plan. This should include immediate progress in these areas:

- Identification of biomarkers and etiology of CFS
- Partnership with organizations representing CFS scientific expertise to
create guidelines for adult and pediatric management
- Provide web based guidelines for CFS management given our current state
of knowledge and expert opinion
- Provide comprehensive information about CFS in partnership with CFS
experts to the scientific community, medical and mental health
providers, educational institutions and the public for both adult and
pediatric CFS through DHHS resources

Approved by unanimous vote.

Recommendation #3: HHS establish 5 regional clinical care, research, and education centers, centers which will provide care to this critically underserved population, educate providers, outreach to the community, and provide effective basic science, translational and clinical research on CFS.

Approved by unanimous vote.

Ampligen for Chronic Fatigue Syndrome: Another Delay From the FDA

Tuesday May 26, 2009 from Adrienne Dellwo, About.com ME/CFS/FM Guide

NEWSBRIEF: The FDA's May 25 deadline has passed, and once again we don't have a decision on Ampligen (poly I: poly C12U), which is vying to become the first approved treatment for chronic fatigue syndrome. According to Ampligen's manufacturer, Hemispherx Biopharma Inc., the FDA says it will need another 1-2 weeks because of "staff scheduling changes."

In other Ampligen-related news, Japanese researchers are now looking at whether this drug is effective against swine flu (H1N1).

·  More Ampligen Information:  http://chronicfatigue.about.com/b/2009/05/22/fdas-ampligen-decision-imminent.htm

·   http://chronicfatigue.about.com/b/2009/05/26/ampligen-for-chronic-fatigue-syndrome-another-delay-from-the-fda.htm

An Interesting Tidbit from Across the Pond

Editorship : j.van.roijen@chello.nl

http://esme-eu.com/

<snip>

"Using new biotechnological techniques, much of the underlying pathophysiology of the disease has been unmasked. Several treatable clinical entities have been discovered, but this information does not reach healthcare personnel. The result is that patients remain undiagnosed and untreated for years with something that might be fully treatable. This is a
huge drain on the economy, as the estimated socio-economic costs for Europe are estimated to be 8020 billion annually."

The Basics about Fibromyalgia 

http://www.fmnetnews.com/basics-symptoms.php 

Biological, Psychological And Social Factors Influence Individual Pain Differences

http://www.medicalnewstoday.com/articles/149294.php

Restless Leg Syndrome

Subscribe to the CFS and Fibro Newsletters - These are very good.

http://chronicfatigue.about.com/b/2009/05/18/fibromyalgia-restless-legs-syndrome-know-the-symptoms.htm

 Date:    Fri, 22 May 2009 12:04:52 -0400
From:    Fred Springfield <fredspringfield1@verizon.net>
Subject: RES: An investigation into the cognitive deficits associated  with chronic fatigue syndrome

An investigation into the cognitive deficits associated with chronic fatigue syndrome.

Journal: Open Neurol J. 2009 Feb 27;3:13-23.

Authors: Thomas M, Smith A.

Affiliation: Centre for Occupational and Health Psychology, School of
Psychology, Cardiff University, UK.

NLM Citation: PMID: 19452031


This study addresses, among other things, the debate as to whether cognitive deficits do occur with a diagnosis of Chronic Fatigue Syndrome (CFS). Previous studies have indicated a potential mismatch between subjective patient ratings of impairment and clinical assessment.

In an attempt to tackle some of the methodological problems faced by previous research in this field, this study recruited a large sample of CFS patients where adequate diagnosis had been made and administered an extensive battery of measures. In doing so this study
was able to replicate previous published evidence of clear cognitive impairment in this group and demonstrate also that these deficits occurred independent of psychopathology.

The conclusion drawn is that cognitive impairments can be identified if appropriate measures are used. Furthermore, the authors have shown that performance changes in these measures have been used to assess both efficacy of a treatment regime and rates of recovery.

[Note: This is an Open Access article, the fullcontent of which is available for free at
http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=19452031
]

Date:    Fri, 22 May 2009 09:18:07 -0400
From:    Lois Ventura <knothome@QCOL.NET>
Subject: NOT, MED: Dr. Byron Hyde's new book

See the top of this page for links (you may need to refresh your =
browser):   http://name-us.org/DefintionsPages/DefHyde.htm

Lois Ventura
Co-founder / Editor / Webmaster
National Alliance for Myalgic Encephalomyelitis
www.name-us.org

Fibromyalgia Network Newsletter

http://www.fmnetnews.com/pages/enews/May_09.html

Go here to subscribe to the newsletter from the American Association for Pain Management

Look on the left side and go down until you find "newsletter."

http://www.aapainmanage.org/