Date: March 6, 2009
Author: Lourdes Salvador
How far would you go to find a cure
How far would you go to find a cure for your child´s chronic fatigue
syndrome (CFS)? Annette Whittemore went $5,000,000 far. Expert medical
care for chronic fatigue syndrome has been virtually nonexistent. Often,
patients are left desperate for relief and frustrated at the lack of
Whittemore, a special education teacher the wife of a Nevada developer and
lawyer, Harvey Whittemore, decided to take matters into her own hands when
it came to her 31-year-old daughter, Andrea, who has had CFS for 19 years.
Chronic Fatigue Syndrome (CFS) is an illness primarily characterized by
profound, debilitating fatigue which has been ongoing for at least 6
months and is not relieved by rest. Other symptoms include:
* Cognitive difficulties, impaired memory, and poor concentration.
* Postexertional malaise (exhaustion and increased symptoms) lasting more
than 24 hours following physical or mental exercise.
* Unrefreshing sleep.
* Joint pain (without redness or swelling).
* Persistent muscle pain.
* Headaches of a new type or severity.
* Tender cervical or axillary lymph nodes.
* Sore throat.
The dramatic decline in activity level and stamina is often severe enough
to result in substantial occupational, educational, and social limitations
that lead to defining CFS as a major functional impairment. At least one
quarter of those afflicted are either unemployed or on disability.
Whittemore hopes to provide care to CFS patients at the Center for Molecular
Medicine at the Whittemore Peterson Institute, which she partially funded
with $5 million.
The $86 million Center will be located at the University of Nevada, Reno
and is scheduled to open next year. Not only will it serve CFS patients, but it will also serve other patients with various neuroimmune and
inflammatory diseases, such as myalgic encephalomyelitis, fibromyalgia, atypical multiple sclerosis, autism, and other related illnesses. The past
challenge with obtaining care for CFS was that doctors had no test to
confirm whether someone has CFS.
Now, Judy Mikovits and her colleagues at the Center have developed a diagnostic blood test which measures five cytokines and chemokines that can be used to confirm a diagnose CFS. Research projects also uncovered the fact that treating CFS patients with anti-viral drugs has greatly reduced symptoms.
Patients are calling the center from around the world to inquire. Despite
their suffering, the prior lack of a clinical test meant that many have
been mistreated by the medical community and in some cases disbelieved
that anything was wrong at all.
It is extremely frustrating to be living with a chronic disease and have a
doctor dismiss symptoms as "normal" or "all in your head" simply because
the medical community has not yet figured out what causes the illness or
found a way to confirm it.
It´s humiliating and degrading for patients. Even worse, lack of early
treatment frequently leads to disability, financial ruin. But the Center
hopes to change all that. In addition to diagnosis, the Center will offer
counseling, nutritional advice, supplements and physical therapy.
This article originally appeared in the MCS America News, March 2009
Issue. http://mcs-america.org/March2009.pdf . For more articles on this
topic, see: MCSA News.
(c) 2009 Lourdes Salvador & MCS America
(c) 2009 Los Angeles Chronicle