October 2004

         Bergen CFS Support Group Newsletter

Meeting Report

It was so exciting to see so many people at the October meeting – many familiar faces and so many new ones.  The increased publicity seems to have paid off.  Our guest speaker was Wendy Raphel, RN an exercise specialist with Pascack Valley Hospital.  Her topic was gentle exercise in a chair.  She was fantastic!  Wendy began by stating that “movement” is a more accurate and appealing word to use than “exercise”.  She addressed the fatigue and pain issues so common to each of us and then led us through a series of VERY low impact movements that can be adjusted to the individual. Some of those in attendance were unaware that movements with such low impact could be so beneficial – and not have negative effects.  We hope to schedule Wendy for another meeting this year.

We also welcomed Hannah Reade, the Coordinator of Research at the VA Hospital in East Orange.  As we have mentioned in previous newsletters, that center is currently conducting studies for the NIH (National Institutes of Health) and is still looking for participants. Hanna addressed that need and after the meeting discussed eligibility factors with some members.  If you are interested or would like more information, please contact Ms. Reade at 800-248-8005 Ext. 2715 or 973-676-1000 Ext. 2715.

Anne sends thanks to our newest email members.  It has helped curtail mailing expenses.  If you have email and are receiving your newsletter by USPS, please consider allowing us to send you the newsletter by email.  From time to time Anne will send an additional article of interest.  The only others sending mail from this site are Nancy Visocki who is our Program Planner and Pat LaRosa - Editor of the Newsletter. 

Editor’s Notes:

1) Apologies for the delay in delivering this issue of the newsletter.

2) The email delivery problem is still being investigated.  We think it is now reaching most of you  but we have yet to solve the format problem.  It is sent with graphics and color but seems to arrive as plain text.  One problem solved – one to go.

3) Anne Gilmartin’s new phone number is 201-244-5188. (Her new email address is at the end of this newsletter.)

Points to Ponder  

The holidays are approaching and so too are the fragrance of warm pies, turkey, and cookies…also artificial fragrances, potpourri, candles, perfumes, and so much more.  This would be a good time to remind friends and relatives that some things that represent pleasure to some can be very harmful to those with multiple chemical sensitivity. 

Multiple chemical sensitivity

Definition - Multiple chemical sensitivity, also known as MCS syndrome or simply MCS, is a disorder in which a person develops symptoms from exposure to chemicals in the environment. With each incidence of exposure, lower levels of the chemical will trigger a reaction and the person becomes increasingly vulnerable to reactions triggered by other chemicals.

Description - Multiple chemical sensitivity typically begins with one high-dose exposure to a chemical, but it may also develop with long-term exposure to a low level of a chemical. Chemicals most often connected with MCS include: formaldehyde; pesticides; solvents; petrochemical fuels such as diesel, gasoline, and kerosene; waxes, detergents, and cleaning products; latex; tobacco smoke; perfumes and fragrances; and artificial colors, flavors, and preservatives. People who develop MCS are commonly exposed in one of the following situations: on the job as an industrial worker; residing or working in a poorly ventilated building; or living in conditions of high air or water pollution. Others may be exposed in unique incidents.

Causes & symptoms - Chemical exposure is often a result of indoor air pollution. Buildings which are tightly sealed for energy conservation may cause a related illness called sick building syndrome, in which people develop symptoms from chronic exposure to airborne environmental chemicals such as formaldehyde from the furniture, carpet glues, and latex caulking. A person moving into a newly constructed building, which has not had time to degas, may experience the initial high-dose exposure that leads to MCS.  The symptoms of MCS vary from person to person and are not chemical-specific. Symptoms are not limited to one physiological system, but primarily affect the respiratory and nervous systems. Symptoms commonly reported are headache, fatigue, weakness, difficulty concentrating, short-term memory loss, dizziness, irritability and depression, itching, numbness, burning sensation, congestion, sore throat, hoarseness, shortness of breath, cough, and stomach pains.

Diagnosis - Multiple chemical sensitivity is a twentieth-century disorder, becoming more prevalent as more man-made chemicals are introduced into the environment in greater quantities. It is especially difficult to diagnose because it presents no consistent or measurable set of symptoms and has no single diagnostic test or marker. Physicians are often unaware of MCS as a condition. They may be unable to diagnose it, or may misdiagnose it as another degenerative disease, or may label it as a psychosomatic illness (a physical illness that is caused by emotional problems). Their lack of understanding generates frustration, anxiety, and distrust in patients already struggling with MCS. However, a new specialty of medicine is evolving to address MCS and related illnesses: occupational and environmental medicine. A physician looking for MCS will take a complete patient history and try to identify chemical exposures.

Treatment - While doctors may recommend antihistamines, analgesics, and other medications to combat the symptoms, the most effective treatment is to avoid those chemicals which trigger the symptoms. This becomes increasingly difficult as the number of offending chemicals increases, and people with MCS often remain at home where they are able to control the chemicals in their environment. This isolation often limits their abilities to work and socialize, so supportive counseling may also be appropriate.

Prognosis - Once MCS sets in, sensitivity continues to increase and a person's health continues to deteriorate. Strictly avoiding exposure to triggering chemicals for a year or more may improve health.

Edited from Gale Encyclopedia of Medicine by Bethany Thivierge

CFS Awareness Day

May 12, 2005 is annual CFS Awareness Day.  It is also International ME/CFS Awareness Day.  There is currently a campaign underway to increase awareness through letter writing.  We are currently looking into the project and will bring you more information in the near future. 

Literature Review   http://chronicfatigue.about.com/b/a/118800.htm

This article appeared just after our meeting.  The topic is “exercise in a chair”.  It refers to a particular chair but it seemed so timely after our meeting that the link is included for those who might wish to read it.  The workout we learned at the meeting did not require any special equipment.

Research From http://chronicfatigue.about.com/b/a/108551.htm                                                New Study Shows Promise that “Skin Tests” May Be Able to Provide a Definitive Diagnosis for Chronic Fatigue Syndrome  August 28, 2004

A new study provides the hope of finding a way to distinguish between what is often the subject of confusion and diagnosis: the devastating "chronic fatigue" that accompanies the baffling and disabling disease called Chronic Fatigue Syndrome and the "chronic fatigue" associated with depression.

Using tone and light stimuli, a University of Alberta study has shown that Chronic Fatigue Syndrome can be distinguished from the chronic fatigue associated with major depression by recordings of skin temperatures and electrodermal activity. In the past, numerous psychological investigations have attempted to differentiate those with the fatigue of Chronic Fatigue Syndrome and those with the fatigue associated with depression. The University of Alberta study (conducted with researchers from the University Centre for Neuroscience at the University of Alberta and from Alberta Hospital) was the first of its kind to use skin tests involving electrodermal activity; in this case, electrodes were placed on each hand to measure the differences among those diagnosed with Chronic Fatigue Syndrome, depression patients who experience chronic fatigue, and healthy controls.

These tests determined the profile of Chronic Fatigue Syndrome patients is clearly different from normal controls, offering hope of eventually being able to pinpoint the clear biological basis to the condition.

Chronic Fatigue Syndrome (CFS) is a disorder, characterized by an often debilitating host of symptoms that includes muscle weakness, myalgias, post-external malaise, and sleep and cognitive disturbances plus fever, sore throat, and headache. "The level of disability varies for people with CFS, but some individuals find they are unable to return to work or function normally on a day-to-day basis. Unfortunately, many of these symptoms are subjective in nature and are difficult to quantify or confirm," says Hannah Pazderka-Robinson, the lead author on the study and quoted in this article on medilexicon. "Not only does the stigma attached with the disorder play an emotional toll on the patient, but it has implications for insurance claims as well.

"There are a number of medical professionals who don't believe that CFS exists in the first place," said Pazderka-Robinson. "The problem is, both CFS and depression are characterized by very similar profiles. Imagine a patient who approaches a doctor and tells him they feel depressed and tired all the time.

"Because there is no objective test for chronic fatigue [syndrome], such as a blood test, the condition can be difficult for a doctor to diagnose," said Pazderka-Robinson, who has just completed a PhD in neuroscience.

Unless a patient's complete medical and psychological profile is considered, there can be confusion between whether the proper diagnosis is Chronic Fatigue Syndrome or depression. This confusion is present because those diagnosed with depression also have some symptoms associated with Chronic Fatigue Syndrome. (In strictly layman's terms, the chronic fatigue of depression is sometimes compared to inertia, while the chronic fatigue associated with Chronic Fatigue Syndrome includes muscle weakness, cognitive skills disruptions, and varying degrees of depression triggered by being so tired. In other words, in depression, the fatigue results from being depressed; in Chronic Fatigue Syndrome, the depression occurs from being so tired.)

Pazderka-Robinson was further quoted as saying that because "depression shows a high co-morbidity with CFS, some CFS patients are often given antidepressants -- that don't work or work poorly, since they do not address the underlying condition. Again, when these medications don't work, physicians sometimes jump to the conclusion that there isn't really anything, physically, wrong. Obviously, both misdiagnosis and the tendency for doctors to treat these patients as if they're not really sick can be extremely distressing. It can also undermine the patient's trust in the doctor and make them less likely to seek treatment if the condition worsens."

This University of Alberta study has verified that there is physical evidence for those who suffer from Chronic Fatigue Syndrome (CFS), giving new weight to the often stigmatized and misdiagnosed disorder. Research just published in the International Journal of Psychophysiology (Volume 53, Issue 3, August 2004, Pages 171-182; Hannah Pazderka-Robinson, James W. Morrison and Pierre Flor-Henry) determined that, using independent criteria, CFS can be distinguished from depression.

The profile of CFS patients is clearly different from normal controls, suggesting there is a clear biological basis to the condition. The study shows people with Chronic Fatigue Syndrome have higher skin temperature than people with depression or those in a control group. In addition, the skin conductivity response (the skin's capacity to conduct an electric current) of those with Chronic Fatigue Syndrome is lower.

The most significant part of the research was that there is reason to believe it can provide independent verification for CFS sufferers that will show that these CFS patients are different than normal controls and they're not "just depressed," said Pazderka-Robinson.

For November Conference Info click here

Next Meeting

The next scheduled meeting is November 21^st  from 2-4 PM at Pascack Valley Hospital.   Our guest speaker will be Thomas Findlay, M.D., a Physiatrist, who is doing research at the VA for the NIH.  He also has extensive training in alternative treatments for pain.