EUROPEAN NETWORK of FIBROMYALGIA ASSOCIATIONS

From the News Desk of Jeanne Hambleton

PRESS RELEASE -28.01.2009

 

The European Medicines Agency (EMEA) are to  have a consultation with a delegation from the European Network of Fibromyalgia Associations (ENFA) in an attempt to understand the need for medical treatments for fibromyalgia in Europe.

Brussels – Following an invitation by the EMEA, the European Network of Fibromyalgia Associations (ENFA) has agreed to attend a consultation meeting with EMEA, where ENFA representatives will share their knowledge and experiences related to the disease of Fibromyalgia that some 14 million Europeans are suffering from.  One of the biggest challenges that the patients have been facing is the lack of officially recognized medical treatment options in the European Union whereas there are three drugs in the United States of America approved by the Food and Drug Administration: Cymbalta from Eli Lilly, Lyrica from Pfizer and recently authorised Savella from Forest & Cypress.

 

The European Declaration 69/2008 on Fibromyalgia that has been recently adopted by the European Parliament, symbolizing the awareness raised around Fibromyalgia, calls for actions on specific issues from European Institutions to improve healthcare surrounding the disease, e.g. investment in research and provision of better diagnosis and treatment.  In addition, the European Health Commissioner Ms. Vassiliou’s remarks (E-6262/08EN) on the treatment of Fibromyalgia demonstrates encouraging willingness of the European Commission to address various concerns laid out in the Declaration on Fibromyalgia.

“We hope that this new drive on Fibromyalgia awareness will bring the end to the impasse of medical treatment for Fibromyalgia patients in the EU”, said Mr. Robert Boelhouwer, President of ENFA. 

Fibromyalgia is a complex disease with a variety of symptoms in addition to the defining symptom – chronic widespread pain. It is estimated that 14 million people in Europe suffer from fibromyalgia and the condition is more prevalent with women (87%).  Fibromyalgia imposes large economic burdens on society as well as on affected individuals. The debilitating symptoms often result in lost work days, lost income and disability payments. Due to lack of awareness, on average patients in Europe see 3-4 physicians and take multiple medications over the course of several years before they receive a diagnosis of Fibromyalgia.

Mr. Boelhouwer said, “Increasing awareness of Fibromyalgia among healthcare professionals and patients will bring enormous benefits to patients, healthcare providers and the society in general by managing the burden of the disease.” he continues, “Having this in mind, ENFA welcomes the proactive role that both the European Parliament and the European Commission have taken up in raising the awareness of Fibromyalgia.”

 

 

Contact:  European Network of Fibromyalgia Associations (ENFA)

Mr. Robert Boelhouwer President of ENFA

contact@enfa-europe.eu  - www.enfa-europe.eu

 About ENFA

ENFA is a network of patient association and support groups working in close consultation with the national association in the relevant country. Our joint missions are to conquer the myths and misunderstandings around Fibromyalgia. The network will help collectively push forward the boundaries which currently exist in understanding, experiencing and treatment of Fibromyalgia. Our main goal is to see fibromyalgia receiving the recognition it deserves across Europe as an illness in its own right.

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http://www.europarl.europa.eu/QP-WEB/application/home.do?language=EN

 

 

New UNR center raises hopes for CFS patients

From the News Desk of Jeanne Hambleton 

BY LENITA POWERS • LPOWERS@RGJ.COM • FEBRUARY 5, 2009

People from across the nation and around the world who suffer from Chronic Fatigue Syndrome and other neuroimmune diseases are waiting anxiously for the opening next year of a new medical research center at the University of Nevada, Reno.

The $86 million Center for Molecular Medicine will expand the university’s research capabilities into cancer and other diseases and house the headquarters of the Whittemore Peterson Institute, which offers hope in the form of clinical trials and treatment for people who suffer from such diseases as Chronic Fatigue Syndrome, fibromyalgia and atypical multiple sclerosis.

“I get letters from all over the world, Australia, Spain, Ireland, London,” said Annette Whittemore, founder and vice president of the Whittemore Peterson Institute. “I got an e-mail saying Canada cheered when they heard the news that the institute was going to be a reality.”

The institute plans to conduct clinical trials, but there is no waiting list yet, said Whittemore, wife of Nevada lobbyist, lawyer and developer Harvey Whittemore.

The Whittemores — whose 31-year-old daughter, Andrea, has suffered from CFS since she was 12 — donated $5 million to help build the Center for Molecular Medicine.

“We will actually be able to provide patient care that, right now, is very spotty or nonexistent while also bringing expertise into the field,” Annette Whittemore said.

Except for a one-time allocation of $19 million in state funds, the center will be financed with bonds funded by federal grants and contracts attracted by the center’s expanded research capabilities and some of the nation’s top researchers, said Kenneth Hunter, chairman of UNR’s Department of Microbiology and Immunology.

“With this state-of-the-art facility and equipment, the ability we will have to recruit some of the best and brightest faculty and researchers with this extraordinary new building cannot be described,” he said.

Hunter said the Center for Molecular Medicine received $1.6 million in federal grant money last year for equipment, much of which already is being used in laboratories on campus and that will be moved into the new building when it opens.

First Research Project In Decades

 

The center is the first new medical research facility built at UNR in more than 20 years, and it will bring the university’s research capabilities into the 21st century, President Milton Glick said.

“It’s enormously important in the sense that it also is the first building ever built on this campus dedicated only to research, and that will allow us to generate more research dollars,” he said.

The new center, along with other buildings that have recently opened or are under construction on campus, shouldn’t draw the taxpayers’ ire because they were in the pipeline and partly funded by the state before the economic crisis began, Glick said.

“The student union, the Knowledge Center, the Davidson Math and Science Center, every one of these buildings was approved three to six years ago by the Legislature at a time when the state was still booming,” he said. “And the student union was paid for by the students, who taxed themselves with an extra fee to pay for it.”

The Center for Molecular Medicine will be funded in what is an unusual public-private partnership for the campus, Glick said.

“This is the first new building being constructed on campus where we will have the private sector occupying space they paid for,” he said.

The Davidson Academy for exceptionally gifted students is a public academy started and partly funded by a private foundation, but it is located in the old Jot Travis Student Union, not part of a new construction project, Glick said.

Clinical Trials Draw Funding

 

Hunter said the Whittemore Peterson Institute, which will be headquartered in the new center, will help the university’s medical students, as well as patients.

“Think about having an institute that is one-of-a-kind in the world that is dealing with a highly prevalent condition, but there is really no specific place you can go to get this kind of treatment,” Hunter said.

“Our students will be exposed to cutting-edge diagnosis and treatment for neuroimmune diseases,” he said. “I envision our medical students standing in the clinics next to guys like Dr. Dan Peterson, who is one of the world’s authorities on Chronic Fatigue Syndrome. This will give him an opportunity to run a first-class facility and train our students as well.”

Judy Mikovits, director of research at the Whittemore Peterson Institute, is doing work based on blood samples taken by Peterson during a 1984 outbreak at Incline Village among about 100 people who exhibited symptoms of Chronic Fatigue Syndrome.

Hunter said the problem is that doctors have no test they can run to determine if someone has CFS, but research being done by Mikovits and other scientists that could one day lead to a blood test or other means of diagnosing the disease.

Mikovits, Peterson and other researchers with the institute will be making their presentations at the International Association for Chronic Fatigue Syndrome and Myalgic Encephalomyelitis conference scheduled on March 12-15 in Reno.

Hunter said only recently has enough scientific evidence has emerged to convince physicians and researchers that CFS is a disease and not just a catch phrase for a bunch of symptoms.

“You can imagine how frustrating that is for patients who clearly are suffering,” Hunter said. “They go to a physician who, because this disease hasn’t received acceptance in the medical community that others have, treats them for years for ancillary things other than CFS.

“So if this disease can be validated with research and strong clinical information, it’s going to absolutely affect the lives of so many people in a positive way,” he said.

Counseling, Therapy Offered

 

Whittemore said the institute will offer patients nutritional advice, supplements and physical therapy.

“We’ll do neuroimaging with other partners to look at the brain and try to deliver at one institute as much comprehensive treatment as we can,” she said. “We’ll have counseling, and we would like to have a psychologist on board because living with a chronic disease is tremendously difficult.”

The Whittemore Peterson Institute is a major component of the Center for Molecular Medicine, but Hunter said the center’s mission extends beyond research solely into CFS.

“From the university’s perspective, it will be far broader than that,” he said. “The three departments that predominantly will be working there will have a huge number of federally funded research projects, ranging from cancer to inflammatory diseases and infectious diseases. It’s very synergistic because I think we will benefit just as much in our medical school department by collaborating with the institute.”

Copyright ©2008 Reno Gazette-Journal. All rights reserved.

(http://www.rgj.com/article/20090205/NEWS10/902050339/1321/NEWS)