Lourdes Salvador's Column
...Co-founder of MCS America discusses the latest Multiple Chemical Sensitivity issues.
Lourdes Salvador volunteers as a writer and social advocate for the recognition of multiple chemical sensitivity (MCS). She was a passionate advocate for the homeless and worked with her local governor to provide services to the homeless through a new approach she created to end homelessness. That passion soon turned to advocacy and activism for people with MCS and the medical professionals who serve them. She co-founded MCS Awareness in 2005 and went on to found MCS America in 2006. She serves as a partner for Environmental Education Week, a partner for the Collaborative on Health and the Environment (CHE), and a supporter for the American Cancer Society: Campaign for Smokefree Air.
How Far Would You Go to Find a Cure?
by Lourdes Salvador
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 answers.
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 humiliated 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.
For more articles on this topic, see: MCSA News.
Copyrighted 2009 Lourdes Salvador & MCS America