Vol. V, Issue #54
Bergen ME/CFS-FM Support Group Newsletter
Our guest speaker was Matt Fellner, a licensed acupuncturist from the Acupuncture & Wholistic Health Center, located in Bergenfield. He addressed acupuncture’s effectiveness in treating fatigue and pain, the most common symptoms of CFS and FM; and how acupuncture can help you reduce stress, gain greater vitality and feel more energized. He also defined energy and movement and how to incorporate them into the life of the person will a serious illness. Many of those present learned how they can work toward reducing pain and fatigue through gentle movement and mindfulness. Positive attitude also plays a role in coping with ME/CFS/FM. Hopefully some of these techniques will be helpful toward managing these illnesses.
NJCFSA 2008 Conference
*Please consider attending this event. Details and registration form can be found at the end of this newsletter. The brochure is also available in PDF format.
In the News – ME/CFS (from About.com)
A Simple Explanation to Help With Understanding Chronic Fatigue Syndrome
This Goes WAY Beyond Tired!
By Adrienne Dellwo, About.com Updated: September 11, 2008
About.com Health's Disease and Condition content is reviewed by Kate Grossman, MD
Chronic Fatigue Syndrome vs. "I Get Tired, Too"
We all get tired. It's part of life, and especially part of modern life.
Think for a moment about the last time you were really tired at work. It's harder to focus, harder to function, but you can push through it.
Now think back to the last time you were really sick with something like strep or the flu -- too sick to work, and too sick to function. Can you remember how exhausted you were, how hard it was to get out of bed and even take a shower? When you're sick like that, it's like your body just shuts down and demands that you rest.
There's a big difference between the two types of tired, right? That second kind of tired is what people with chronic fatigue syndrome1 (CFS or ME/CFS2) deal with every day. They're not just sleepy, and they can't just push through it. They're so wiped out that their bodies demand rest and sleep constantly.
A woman who's a regular in About.com's Fibromyalgia & Chronic Fatigue Syndrome forum3 has a great story that helps people relate to how she feels every day:
Several years ago I was put under anesthesia for a dental procedure. I amazed the nurse and surgeon when I woke up because I was reading and chatting away. They couldn't believe how functional I was; the nurse actually called a couple of people over. I realized my 'amazing' ability was a result of fighting through CFS fatigue for years.
Most people who are regularly tired can trace it to some aspect of their lives -- they don't get enough sleep, they're too busy, they're under too much pressure, etc. People with ME/CFS, however, don't have an obvious cause of fatigue. Usually, they were perfectly healthy people one day and no longer healthy the next.
What Does Chronic Fatigue Syndrome Do to Your Body?
In most cases, chronic fatigue syndrome comes on suddenly. While scientists don't yet know exactly what causes it, a growing pool of evidence points to a combination of genetic predisposition and exposure to viruses or toxins. Many cases start after a flu-like illness, but then some of the symptoms never go away.
What many experts believe is going on in the body of someone with ME/CFS is constant immune system activation, as if the body is trying to fend off illness. Working that hard all the time is a big drain on the body, which is part of the reason we all get so tired when we're sick.
As if that level of fatigue weren't enough to deal with, chronic fatigue syndrome can bring a host of other symptoms. Experts recognize about 45 of them, and each person deals with a different mix of symptoms and levels of severity.
Common ME/CFS symptoms include:
· Sleep that isn't refreshing
· Muscle and joint aches
· Sore throat
· Swollen lymph glands
· Cognitive problems
The cognitive problems associated with ME/CFS are sometimes severe. Regardless of how intelligent the person is, he or she may become forgetful, be unable to recall common words, frequently lose a train of thought, or sometimes become confused. Simple tasks such as reading a newspaper, cooking a simple meal, or finding your car in a parking lot become daunting and overwhelming.
Well-meaning people frequently tell those with ME/CFS that they'd feel better if they'd get more exercise. Most people do get an energy boost from exertion, but people with ME/CFS don't. They have a symptoms called post-exertional malaise, which means that even small amounts of exertion can make all of their symptoms worse for a couple of days. Since deconditioning can add to the fatigue and weakness that CFS patients face, a gentle graded routine is one of the treatment recommendations.
Chronic Fatigue Syndrome, Disbelief, and the Need for Support
Imagine suddenly feeling sick and exhausted all the time and having someone tell you you're not really sick. People with chronic fatigue syndrome face that all the time. Some doctors say they're depressed or that it's all in their heads - they're just whiners or hypochondriacs. It's also common for them to tell someone, "I have chronic fatigue syndrome," and hear something like, "I think I have that, too. It seems like I'm always tired."
Because we don't yet have a good diagnostic test for ME/CFS, sometimes it's hard for people with the condition to convince the people around them they're really sick. It can strain marriages, drive friends apart, and make work conditions especially stressful. People with ME/CFS often end up feeling isolated, which compounds the depression that frequently goes along with any debilitating illness.
Some people with ME/CFS find medications, supplements and life-style changes that help them feel better, but it's a long, difficult process of experimentation and not everyone finds things that make a big difference. So far, no drug is FDA approved for treating ME/CFS, and no treatment works for everyone.
Chronic fatigue syndrome is a serious, life-altering, frustrating, often misunderstood illness. What people with ME/CFS need most of all from those around them is emotional support and understanding.
This About.com page has been optimized for print. To view this page in its original form, please visit: http://chronicfatigue.about.com/od/whatischronicfatigue/a/understandCFS.htm
©2008 About.com, Inc., a part of The New York Times Company. All rights reserved.
In the News (from About.com)
What's Going On? A Simple Explanation of Fibromyalgia
Making Sense of a Complex Disorder, For Those Who Don't Have It
By Adrienne Dellwo, About.com
Updated: June 16, 2008
About.com Health's Disease and Condition content is reviewed by Kate Grossman, MD
Fibromyalgia is a complex condition that's difficult to understand, especially if you don't have a medical degree. Because it involves the brain and nervous system, fibromyalgia can have an impact on virtually every part of the body.
If you're trying to understand this condition in someone you know, it can be incredibly confusing. When a lot of people see a bizarre collection of fluctuating symptoms1 that don't show up in medical tests, they decide fibromyalgia must be a psychological problem. A host of scientific evidence, however, proves that it's a very real physical condition.
Digging through that scientific research doesn't help most of us, though. Terms like neurotransmitter dysregulation, nociceptors, cellular enzymes and opiate pathways aren't exactly easy to grasp.
The goal of this article is to help you understand and relate to what's going on in the body of someone with fibromyalgia, in plain terms and without medical jargon. At the end of each section, you'll find relevant medical terms with links to definitions. They'll be helpful if you want to go beyond a basic understanding, but you don't need to understand the terms to get through this article.
Understanding the Pain of Fibromyalgia
Imagine you're planning a party and expecting about 20 guests. Three or four friends told you they'd come early to help you out. But they don't know show, and instead of 20 guests, you get 100. You're overwhelmed.
That's what's happening with pain signals in someone who has fibromyalgia. The cells send too many pain messages (party guests), up to five times as many as in a healthy person. That can turn mild pressure or even an itch into pain.
When those pain signals reach the brain, they're processed by something called serotonin. People with fibromyalgia, however, don't have enough serotonin (the friends who didn't show up to help), leaving the brain overwhelmed.
This is why people with fibromyalgia have pain in tissues that show no sign of damage. It's not imagined pain; it's misinterpreted sensation that the brain turns into very real pain.
Other substances in the patient's brain amplify signals -- essentially, "turning up the volume" of everything. That can include light, noise and odor on top of pain, and it can overload the brain. This can lead to confusion, fear, anxiety and panic attacks.
· Substance P
Understanding the Ups & Downs of Fibromyalgia
Most people with a chronic illness are always sick. The effects on the body of cancer, a virus, or a degenerative disease are fairly constant. It's understandably confusing to see someone with fibromyalgia be unable to do something on Monday, yet perfectly capable of it on Wednesday.
Look at it this way: Everyone's hormones fluctuate, and even things like weight and blood pressure can rise and fall during the course of a day, week or month. All of the systems and substances in the body work that way, rising and falling in response to different situations.
Research shows conclusively that fibromyalgia involves abnormal levels of multiple hormones and other substances. Because those things all go up and down, sometimes one or more are in the normal zone and other times they're not. The more things that are out of the zone, the worse they'll feel.
Understanding Stress & Fibromyalgia
Some people think FM patients are emotionally incapable of dealing with stress, because a stressful situation will generally make symptoms worse.
The important thing to understand is that we respond to stress both emotionally and physically. A physical response, in everyone, includes a rush of adrenaline and other hormones that help kick your body into overdrive so you can deal with what's happening.
People with fibromyalgia don't have enough of those hormones, which makes stress very hard on their bodies and can trigger symptoms.
Also, when we talk about "stress" we usually mean the emotional kind, which can come from your job, a busy schedule, or personal conflict. A lot of things actually cause physical stress, such as illness, lack of sleep, nutritional deficiencies and injuries. Physical stress can have the same effect as emotional stress.
· Norephinephrine (noradrenaline)
· HPA Axis
Understanding the Fatigue of Fibromyalgia
Think of a time when you were not just tired, but really exhausted. Maybe you were up all night studying for a test. Maybe you were up multiple times to feed a baby or take care of a sick child. Maybe it was the flu or strep throat.
Imagine being exhausted like that all day while you're trying to work, take care of kids, clean the house, cook dinner, etc. For most people, one or two good night's sleep would take that feeling away.
With fibromyalgia, though, comes sleep disorders that make a good night's sleep a rarity. A person with fibromyalgia can have anywhere from one to all of the following sleep disorders:
· Insomnia (difficulty getting to sleep or staying asleep)
· Inability to reach or stay in a deep sleep
· Sleep apnea (breathing disturbances that can wake the person repeatedly)
· Restless leg syndrome (twitching, jerking limbs that make it hard to sleep)
· Periodic limb movement disorder (rhythmic, involuntary muscle contractions that prevent deep sleep)
Fibromyalgia In a Nutshell
A lot of illnesses involve one part of the body, or one system. Fibromyalgia, however, involves the entire body and throws all kinds of things out of whack. As bizarre and confusing as the varied symptoms may be, they're tied to very real physical causes.
Fibromyalgia can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.
· It's NOT psychological "burn out" or depression.
· It's NOT laziness.
· It's NOT whining or malingering.
· It IS the result of widespread dysfunction in the body and the brain that's hard to understand, difficult to treat, and, so far, impossible to cure.
The hardest thing for patients, however, is having to live with it. Having the support and understanding of people in their lives can make it a lot easier.
This About.com page has been optimized for print. To view this page in its original form, please visit: http://chronicfatigue.about.com/od/whatisfibromyalgia/a/understandfibro.htm
©2008 About.com, Inc., a part of The New York Times Company. All rights reserved.
The next meeting will be Sunday October 19th from 2-4 PM at the Ridgewood YMCA. It will be an open meeting with discussion of coping technique. Bring your ideas to share with the group.
This newsletter is intended for CFS & FM patients in the area of this support group. The purpose is to share information and support. If you have questions about meetings please contact: Pat LaRosa at email@example.com, Nancy Visocki at firstname.lastname@example.org, Judy Machacek at email@example.com or leave a voice message at the NJCFSA HelpLine 888-835-3677 during business hours.
NJCFSA CHRONIC FATIGUE SYNDROME CONFERENCE
Sunday, October 26, 2008
NEW RESEARCH AND PERSPECTIVES IN CHRONIC FATIGUE SYNDROME (ME/CFS)
Co-sponsored by Sheraton Eatontown Hotel Conference Center
Eatontown, New Jersey
11:30 –12:30 pm Registration, exhibits and buffet lunch
12:30 – 12:45 pm Introduction & Welcome: Warren M. Walkow, MD, Department of Medicine, Monmouth Medical Center
12:45 – 1:30 pm John Chia, MD The Role of Enteroviruses in CFS
1:30 – 2:15 pm Pat Fennell, MSW, LCSWR CFS, Quality of Life, and the Chronic Illness Era
2:15 – 2:30 pm Coffee, tea & beverage break
2:30 – 2:45 pm Presentation of Awards
2:45 – 3:30 pm Kenneth Friedman, PhD Evolving Strategies for Chronic Fatigue Syndrome Research and Education
3:30 – 4:00 pm Susan Levine, MD, FACP New Infectious Causes of CFS and Methods of Detection
4:00 – 4:30 pm Question and Answer Panel Session: Conference attendees will be able to submit their questions to the speakers.
Monmouth Medical Center relies upon faculty in its CME Program to provide educational information that is objective and as unbiased as possible. In accordance with the nationally accepted guidelines, faculty is asked to indicate any commercial relationship that might be perceived as a real or apparent conflict of interest.
ABOUT NJCFSA Inc. P.O. Box 477 Florham Park, NJ 07932 www.njcfsa.org
NJCFSA is a non‐profit organization that supports patients and their families with the following: InfoLine, website, physician
and attorney referrals, current medical information, newsletter, support groups, lending library, medical conferences,
fundraisers, funding for ME/CFS research, high school student & medical school student scholarships, public education,
publicity and media coverage, public policy and advocacy.
Please support the activities of NJCFSA by becoming a member for an annual $30!
The annual fall conference of the New Jersey Chronic Fatigue Syndrome Association, Inc. (NJCFSA) is co‐sponsored by Monmouth Medical Center. It will provide information on Chronic Fatigue Syndrome (ME/CFS) for primary care physicians, specialists in endocrinology, immunology, infectious diseases and pediatrics, nurses, and other health care providers. ME/
CFS patients and their families will benefit from up‐to‐date information on research and treatment, as well as from an opportunity to network with advocates in the patient and medical communities.
ABOUT THE CONFERENCE
DATE: Sunday, October 26, 2008
TIME: 11:30 am ‐ 4:30 pm
LOCATION: Sheraton Eatontown Hotel Conference Center Eatontown, New Jersey
ADMISSION: Register by October 12: $35 Register on conference day: $45
NJCFSA Information Hot Line: 888‐835‐3677 Registration includes buffet lunch, program handouts, and free parking. For health
considerations, this conference is fragrance‐free, smoke‐free and pet‐free.
Directions to the Sheraton: Garden State Parkway to exit 105, Route 36 East to Route 35 South to Industrial Way East. The Sheraton is 5 minutes from the Garden State Parkway exit.
ABOUT THE SPEAKERS
John KS Chia, MD, is the founder of EVMED Research and also an assistant clinical professor at UCLA school of Medicine. As a well rounded physician, he is a dedicated researcher and an infectious disease specialist in Torrance, California. His most recent discovery that 82% of Chronic Fatigue Syndrome patients in his study had enterovirus capsid proteins within their stomachs was published in the Journal of Clinical Pathology and announced in an international press release. He also is actively investigating effective treatment strategies to help these debilitated patients.
Dr. Kenneth J. Friedman is an Associate Professor of Pharmacology and Physiology at the New Jersey Medical School in Newark, NJ. He developed an interest in Chronic Fatigue Syndrome (CFS) when his daughter became ill with CFS/Fibromyalgia in the early 1990’s. He is the author of the lead chapter of the New Jersey Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome, and co‐author of two additional chapters. Dr. Friedman served a more‐than three‐year term on the Chronic Fatigue Syndrome Advisory Committee (CFSAC), and served on both the Education and Research Subcommittees
of the CFSAC. He is the author of a research subcommittee report entitled, “Fish or War,” which served as the source for many of the recommendations submitted to the U.S. Secretary of Health by the advisory committee. Dr. Friedman is a Trustee of the New Jersey CFS Association.
Patricia Fennell, MSW, LCSWR, is a researcher and clinician specializing in chronic illness, trauma, forensics and hospice care. Her organization, Albany Health Management Associates, treats and examines global health care concerns through clinical care, consulting, and professional education utilizing the Fennell Four Phase Treatment (FFPT™) approach. Her publications include Managing Chronic Illness: The Four Phase Treatment Approach and The
Chronic Illness Workbook.
Susan M. Levine, MD, FACP, is a Board Certified, Infectious Disease and Allergy & Immunology Specialist, with a primary interest in CFS and FM. Dr. Levine has published many research papers in peer‐reviewed journals; she was a contributing author to A Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome. She served on the Name Change Workgroup, reporting to the Federal Government committee for CFS. Dr. Levine collaborates with scientists from multi‐disciplinary fields in national and international research studies.
ABOUT CME CREDIT NJCFSA, *CME Credits available for physicians & Nursing Contact Hours have been applied for
This activity has been planned and implemented in accordance with the Essential Areas, Standards and Policies of the Medical Society of New Jersey through the joint sponsorship of Monmouth Medical Center and NJCFSA, Inc. Monmouth Medical Center is
accredited by the Medical Society of New Jersey to provide continuing medical education for physicians. Monmouth Medical Center designates this educational activity for a maximum 3.5 AMA PRA Category 1 Credits™. Physicians should claim credit commensurate with the extent of their participation in the activity.
ABOUT NURSING CONTACT HOURS
Contact Hours have been applied for through Monmouth Medical Center. Monmouth Medical Center is an approved provider of continuing nursing education by New Jersey State Nurses Association, an accredited approver, by the American Nurses Credentialing Center’s Commission on
Accreditation. (P91‐12/2007‐2010) Call Pat LaRosa: 2013854194
Target audience: Primary Care, Internal Medicine, Infectious Disease and Endocrinology Physicians, Nurses, and other health care providers
Objectives: At the completion of this conference, the participants should be able to:
‐ Discuss the role of chronic enterovirus infection in ME/CFS and review possible treatment strategies for patients who are found to have gastric enteroviral protein.
‐ Evaluate those factors, which affect the quality of life in ME/CFS patients. Show the importance of ME/CFS as a significant cause of chronic illness.
‐ Identify possible new infectious causes of ME/CFS and describe their methods of detection.
CME participants must preregister for conference and CME credit call Kathy Fiore: 7329236790 CME & conference registration: $95
On conference day, sign in & pick up materials.
Conference registration: $35 $ ________
NJCFSA membership: $30 $ ________ (Optional)
Please make check payable to: NJCFSA, Inc. Your returned check will be your receipt.
Mail check and this form to:
NJCFSA Fall 2008 Conference
P.O. Box 477
Florham Park, NJ 07932
NJCFSA FALL 2008 CONFERENCE
Please fill out and detach this form /
copy form for additional attendees
Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis (ME), is a serious, often disabling illness that attacks all body systems. Over 1 million American men, women and children suffer from ME/CFS. As yet, there is no cure and treatment is aimed at symptom relief. However, promising multi‐disciplinary, multi‐national research and new technologies are advancing treatments protocols for ME/CFS patients worldwide.
Accommodations at the Sheraton:
To reserve a room at a discounted rate of $135 per night at the Sheraton Eatontown Hotel, please call 732‐542‐6500 by September 26, and refer to the NJCFSA Fall 2008 Conference.
Other hotels in the area:
Holiday Inn, Tinton Falls 800‐HOLIDAY
Red Roof Inn, Tinton Falls 732‐389‐4646
Days Inn, Wall Township 800‐325‐2525
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