WOMEN IN NETS CLAIMING TO BE TRAPPED IN PAIN IN 8 EUROPEAN CITIES

From the Fibromyalgia News Desk of Jeanne Hambleton

PRESS RELEASE Embargoed until 7.3.09

Brussels, (07.03.2009) – This Saturday has not only been marked by the International Women’s Day but also by the European action day on Fibromyalgia. While normal people were doing their usual Saturday’s shopping, the European Network of Fibromyalgia Associations and its Member Associations gathered together in eight European cities centres to expose their situation as women-patients suffering from fibromyalgia.

Simultaneously at 16:00 (Brussels time) in Paris, London, Amsterdam, Frankfurt, Brussels, Dublin, Milan, Lisbon and Madrid a passive demonstration took place where fibromyalgia community members trod the pavements of these cities.

The actual main issue around Fibromyalgia is that currently in Europe there is no recognized treatment whereas in the USA there are already 3 medicines available.

“This year has been declared the year against fibromyalgia by the European arm of the International Association for the Study of Pain (IASP-EFIC) and for this reason ENFA, as the European umbrella of fibromyalgia organisations wish to inform as much as possible not only diagnosed patients, but the general public, medical professionals, policy makers and politicians” says Pam Stewart, ENFA’s vice-president.

“Early diagnosis, diagnosis, treatments and information are still lacking for the estimated 14 million patients in Europe” says Robert Boelhouwer, ENFA’s president. “We have to keep on mobilizing the general public but also the politicians by having regular action days and awareness campaigns. This is the first event in 2009; the next one will take place in May on the occasion of the “International Fibromyalgia Awareness Day”, then in September and October. We will keep on fighting until we get a full and clear recognition of our disease, starting with a treatment approved for Europe,” he added.

Last December, 418 Members of the European Parliament from the 27 European countries expressed their wish to the European Commission and to the Member States to help raise awareness of the condition and facilitate access to information for health professionals and patients, by supporting European and national awareness campaigns; to encourage Member States to improve access to diagnosis and treatment; to facilitate research on fibromyalgia through the work programmes of the EU 7th Framework Programme for Research and future research programmes; and finally to facilitate the development of programmes for collecting data on fibromyalgia. The European Parliament has been the first European Institution to answer the call of the fibromyalgia community. The European Commission has been also recently been contacted but no reaction has came from them yet.

Fibromyalgia is a complex disease with a variety of symptoms in addition to the defining symptom – chronic widespread pain. These include fatigue, non-restorative sleep, morning stiffness, irritable bowel and bladder, restless legs, anxiety and cognitive dysfunction often referred to as “fibro fog.” All of these symptoms cause serious limitations in patients’ ability to perform ordinary daily chores and work and severely affect their quality of life. Some scientists believe that there is an abnormality in how the body responds to pain, and particularly a heightened sensitivity to stimuli.

Fibromyalgia imposes large economic burdens on society as well as on affected individuals. A study shows that an average patient in Europe consults up to 7 physicians and takes multiple medications over 5-7 years before receiving the correct diagnosis. The debilitating symptoms often result in lost work days, lost income and disability payments. Research in the UK has shown that diagnosis and positive management of Fibromyalgia reduce healthcare cost by avoiding unnecessary investigations and consultations.

Contact:Mr. Robert Boelhouwer President European Network of Fibromyalgia Associations (ENFA)
ENFA contact@enfa-europe.eu – http://www.enfa-europe.eu

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)