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.
Lifestyle Management Not Cure for Chronic Fatigue Syndrome
by Lourdes Salvador
People go to medical doctors for treatment of their medical conditions. Yet, they frequently leave with recommendations for mechanisms to cope with their illness instead. Having coping skills it not all bad; however, coping skills won’t improve symptoms according to researchers.
It’s not as cut and dry as, “You have a pain condition. Here’s some pain meds for the pain. Learn to live with it.”
When a doctor is at a loss for the cause of a condition and doesn’t want to take the time to investigate, run expensive tests for all possible causes, and try various medical treatments, coping mechanisms such lifestyle management or cognitive behavioral therapy are often prescribed instead of medical treatment. This is frequently without regard to whether the patient is actually having trouble coping with their illness. It comes as a sharp slap in the face when prescribed without regard for the true medical treatment sought.
Sometimes, patients are even told their condition is psychosomatic, or imagined. Any objection from the patient is likely to be labeled as “denial” with a referral for a psychiatric evaluation.
Patient frustrations mount and they become more insistent on finding out what’s wrong when their symptoms are ignored or downplayed by doctors. The further insistence, a natural and normal response under the circumstances, often obtains the label “obsessive”.
Patients can be led down a useless path of doctor-induced destruction that renders the “first do no harm” oath a deceptive lie. For ignoring a deteriorating condition while inducing psychological duress by blaming a persons psyche when they are doing everything right is indeed very harmful.
But now scientists agree these “coping” programs fail to achieve either functional improvement or reduction of symptoms. Since they are geared only at how a person thinks about his or her illness, they could only cause an improvement in condition if the condition were imaginary.
Nearly every condition with recognized medical treatment was once thought to be psychosomatic, including asthma, diabetes, and poisoning. The true prevalence of psychosomatic conditions may be extremely low in the face of the astronomical rates of medical misdiagnosis, which range from 20% to 40%, depending on the care setting. Another factor is the slow rate at which science moves forward to study and understand emerging illnesses.
Chronic fatigue syndrome (CFS) has also suffered through misunderstanding and misdiagnosis, though new serum biomarker patterns of cytokine and chemokines are on the horizon for positive clinical diagnosis. Proinflammatory cytokines and chemokines often are associated with the neuroinflammation and neurotoxic damage to the central nervous system seen in CFS.
Gaber and colleagues evaluated the impact a lifestyle management program delivered on the functional abilities and severity of fatigue in a group of CFS patients. The program promoted graded exercise and cognitive behavioral therapy on both a group and individual basis.
Gaber says, “There was no significant difference between the mean values pre and post intervention. The program failed to achieve either functional improvement or reduction in fatigue in CFS/ME patients.”
Patients can protect themselves by doing their own research, obtaining a second opinion, asking lots of questions, requesting “proof” of diagnosis in the way of conclusive clinical tests, and joining peer support groups to gather information.
If a diagnosis makes no sense, chances are that it really makes no sense.
One woman was diagnosed with Reynaud’s upon reporting cold and clammy skin when she was sweating from exercising or warm weather. She was told to run her hands under hot water when they became cold. Reynaud’s is a phenomenon that occurs when a person is cold. It causes fingers to feel numb and cool in response to cold temperatures or stress.
However, the woman had reported that her symptoms occurred when she was in hot temperatures or her body was heated from exercising, not cold. Additionally, the diagnosis did not make sense to her because it did not affect only her hands and people who suffer from Reynaud’s don’t sweat when they are cold. When it happened, she alsofelt lightheaded and dizzy.
Yet, two independent doctors had incorrectly diagnosed Reynaud’s. It turned out that she suffered from chronic dehydration which caused heat exhaustion during exercise and heat exposure. Her doctor’s advice to run her hands under hot water would have served to further the problem, not abate it. This misdiagnosis may have held a potentially deadly consequence if she had not done her own research on Reynaud’s and questioned her doctor.
The best way to ensure proper care is to be your own advocate. If coping with the complexities of an illness is difficult for you, then a lifestyle management program may be beneficial for learning new coping skills. But coping skills should never be used as a replacement for medical care to treat underlying medical issues. Medical care is of primary importance and lifestyle management should only be added if a true difficulty coping with illness arises.
Gaber T, Priest J. Evaluation of a lifestyle management programme in the functional abilities and fatigue for chronic fatigue syndrome (CFS/ME) patients. British Society of Rehabilitation Medicine Winter Meeting & AGM. November 9, 2007.
For more articles on this topic, see: MCSA News.
Copyrighted 2008 Lourdes Salvador & MCS America