September 2005

 Vol. III, Issue #21

Ribbon          Bergen CFS Support Group Newsletter

Meeting Report

We had a great turnout for our first meeting of the fall season!  Many familiar faces and a few new ones enjoyed our guest speaker, Beth Sorger.   Beth is a traditionally-trained psychotherapist who uses Energy Psychology with Emotional Freedom Techniques (EFT).   In a workshop-like atmosphere, Beth showed us one example of EFT called “Tapping”.  A series of acupressure points on hands, face, and chest can be gently “tapped” using ones fingertips.  The rhythmic tapping, along with a verbal and emphatic repetition of acknowledgment, and acceptance of the problem, acts on the meridians of the body to release emotional and physical pain.  In our session, we tested this technique by holding a piece of candy as a temptation.  After tapping, most people could easily turn away from the food-craving.  Another example involved identification of a specific source of pain, and some relief was experienced by almost everyone.  Beth has worked with individuals with chronic illness including CFS and Fibromyalgia and has found that Tapping, and other types of EFT can be easy to learn, and quickly help to manage problems without medications. 

 

To learn more about this therapy, check out www.emotionalfreedomtechnique.com.  Beth Sorger practices in Nyack, NY specializing in adult, adolescent and family therapy.  She can be reached at 845-353-6373, or bethnard@aol.com.  Beth will be speaking at the December meeting of the Bergen Fibromyalgia Support Group.  That meeting will be held on Sunday December 4th from 1 to 3 pm at Pascack Valley Hospital.

 

An announcement was made that the Fall NJCFSA Conference will be held on Saturday, November 5, 2005 in Eatontown NJ.  Internationally recognized, Dr. Paul Cheney will be the featured guest speaker, along with Dr. Susan Levine and author Shanon McQuown.  We are hoping for a large turnout to learn about the “New Directions in Research and Therapy in Chronic Fatigue Syndrome”.  Please spread the word and go to www.njcfsa.org to download the registration form.

Note: Thanks go to Judy Machacek for writing this meeting report in my absence. Pat

 

Research

HEALTH SENSE

Biology of chronic fatigue gains focus

By Judy Foreman  |  September 5, 2005  Boston Globe

For years, many doctors and others dismissed people with Chronic Fatigue Syndrome as depressed, lazy, or just plain whiny. Now, a slew of research -- more than 2,000 scientific papers by some counts -- is suggesting that chronic fatigue is not a psychiatric illness, but a nasty mix of immunological, neurological, and hormonal abnormalities.  Several types of brain scans, for instance, have found different patterns of blood flow to certain regions of the brain in patients with chronic fatigue, and other studies have shown that patients have difficulty in thinking and processing information, and are unable to do several mental tasks at once.  ''There are objective brain abnormalities in many patients with CFS that are consistent with the symptoms patients describe," said Dr. Anthony Komaroff, a chronic fatigue expert and editor-in-chief of Harvard's Health Publications, a division of Harvard Medical School.

Chronic fatigue, which has no known cure, is more than feeling tired all the time. Definitions vary, but the one the federal government uses says it is characterized by persistent, unexplained fatigue lasting at least six months, as well as four of the following: sore throat, tender lymph nodes, muscle pain, multi-joint pain, headaches, unrefreshing sleep, malaise after exercise, and impaired memory or concentration.  The syndrome -- which can come on after an acute infection, a head injury, a major life stress, or from no obvious triggers at all -- now affects 800,000 to 2.5 million Americans, most of them women, said Dr. William Reeves, chief of CFS research at the federal Centers for Disease Control and Prevention.  But the ailment is tricky to diagnose because its symptoms overlap with those of other conditions such as depression, Gulf War Syndrome and fibromyalgia. A federal study now underway is designed to measure the activity of thousands of genes in 190 people, some with CFS, some without, to find a distinctive genetic fingerprint for chronic fatigue.  The goal, said Reeves, is a blood test for chronic fatigue.  ''This illness is a nightmare that is extraordinary," said Dr. David Bell, a specialist in Lyndonville, N.Y.  ''If you're lucky, you get over CFS in a couple of years. If you're not, it stays with you for the rest of your life."

Jean Harrison, 52, a former art restorer who lives in Salem, has been unlucky. She thinks she's had mild chronic fatigue since she was 6, but she wasn't diagnosed until she was 41, when her symptoms got worse. ''For a long time, my doctor thought I was depressed, so I exercised to help with that. But when the doctor realized I kept getting much worse after exercise, she concluded I had CFS. I was thrilled to finally get a diagnosis, after all those years of people saying, 'What's wrong with you’?"  Now, Harrison is ''almost housebound," she said. ''If I do too much, I can end up being asleep for days. If I haven't overextended, I can be awake for 7 to 8 hours. I can't exercise at all -- it's unthinkable to walk a mile. If I have supper with my family on a Sunday, I have to spend all day Monday in bed. It's a devastating illness."  Like Harrison, many people with chronic fatigue are first told they have depression. But the afflictions are quite different, with depression triggering an increase in the stress hormone cortisol and chronic fatigue a decline, said Harvard's Komaroff. While depression gets better with drugs like Prozac, the fatigue of CFS does not. 

Jean Harrison's perplexing response to exercise is also typical of many chronic fatigue patients, perhaps because in them, exercise triggers the release of fatigue-inducing immune chemicals called cytokines. People with the syndrome sometimes can exercise as hard as healthy people -- they just feel awful for a day or two afterward, Reeves said.   ''There is considerable evidence from published studies that in CFS the immune system is overactive," said Komaroff.

Given the complexity of Chronic Fatigue Syndrome, perhaps it's not surprising that treatments are piecemeal and not very effective and that some doctors get almost as discouraged as their patients. ''Very few doctors are willing to care for CFS patients because it is such a downer," said Dr. Hugh Calkins, director of electrophysiology at Johns Hopkins Medical Institutions in Baltimore.

Still, experts point to remedies that may help relieve some of the symptoms. In doses five to 10 times lower than those used for depression, tricyclic antidepressants, like Elavil, can improve sleep, said Komaroff.  And cognitive behavior therapy, which teaches people to re-evaluate their negative thoughts and behaviors, does help some people with CFS to use optimally the little energy they have.  But mostly, it's a game of patience -- and hope, that the strides in research will translate into better diagnosis and ultimately, better treatments, for chronic fatigue.

Judy Foreman is a freelance columnist who can be contacted at foreman@globe.com.  

© Copyright 2005 The New York Times Company
 

Helping Hand

 

While this service is available to a limited group of people, you might be one of those who can benefit from this agency.  Please go to the website to learn more.  It was brought to this editor’s attention by someone who has used the service and was pleased with the work and the assistance.

http://www.bergenvolunteers.org/chore_services.htm

 

Chore Service

 

The Chore Service helps senior citizens (age 60 and over) and disabled homeowners of all ages remain safe and secure in their homes by performing minor household repairs that they can neither do themselves nor get anyone else to do. Services are provided by Chore’s crew of 21 volunteer handypersons working as teams with paid drivers. There is no charge for Chore’s services, but clients are expected to pay for the parts necessary to complete the repair.

 

  What Chore Can Do For You

Services are provided for senior citizens (age 60 and over) and for people of any age with disabilities. Work is done by volunteer handymen who want to help others. The Chore crew will determine if a particular project is beyond their expertise.

Minor Plumbing - Repair leaking faucets - Repair leaking toilets - Replace washer hoses

Minor Electrical – Replace outlets - Replace light switches and plugs - Replace or repair door bells - Replace light

     bulbs - Replace existing light fixture (if appropriate)

Repair or Replace - Door locks, handles, springs and closers - Filters and batteries

Install – smoke alarms - Carbon monoxide alarms - Grab bars in bath area - Internal railings - Air conditioners (also

     remove) - Storm windows/screens (also remove)

  What Chore Cannot Do For You

Chore is unable to service emergencies.
Chore does not do outdoor work, painting, tiling, door or window replacements, work requiring high ladders, heavy lifting, new wiring or appliance repairs.

Repairs for apartment dwellers are limited to personal items only.

If you need the name of a licensed plumber, electrician or other skilled worker, consult the Yellow Pages.

 

  To Schedule a Service Call
 Call 201-489-7790.

The wait for a service call can be more than two weeks.

NJCFSA Conference 

 

Please consider attending this conference.  It is an opportunity to hear some of the people who work so hard on our behalf. Complete information is available on the website www.njcfsa.org.

 

New Directions in Research and Therapy

in Chronic Fatigue Syndrome

DATE: Saturday, November 5, 2005     

SITE: Sheraton Conference Center EatontownNew Jersey

TIME: Noon to 5:00 PM                                                    

FEE: $30 per person (parking is free)

REGISTER: in advance by October 30, 2005                    

REGISTRATION INFO: (609) 219-0662

Conference Program

 

Noon1:00 p.m.        Registration & Exhibits

 

1:00 – 1:15 p.m.          Introduction & Welcome

                       

1:15 – 2:15 p.m.          CFIDS and Diastolic Cardiomyopathy

Paul Cheney, MD, PhD, Director of The Cheney Clinic in Wilmington, North Carolina and pioneering clinical researcher in field of CFS.

 

2:15 – 3:00 p.m.          Educating the Child with CFIDS

Shanon McQuown, Special Education Coach and author of recently published book “Harnessing the Wind: Chronic Fatigue Syndrome and My Son.”

 

3:00 – 3:15 p.m.          Break – Light Refreshments

 

3:15 – 4:15 p.m.          News Update on CFS and Related Disorders

Susan Levine, MD, FAAP, Board Certified Internist and Infectious Disease Specialist; CFS Clinician and Researcher, Private Practice, New York, NY.

 

 

4:15 – 5:00 p.m.          Questions and Answers

    

Humor


 The following is from "The National Forum" - Spring 1998.

 

CFIDS OLYMPICS

1. The 50-foot crawl (land, not water)
2. The pole's fault
3. The parallel blahs
4. The warm-bath-lon
5. The cookie toss
6. The short fall
7. Synchronized swooning
8. The just plain downhill
9. The disc drop
10. The totally shot put
11. The 10-meter nose-dive

--Anonymous PWC Olympian

Editor’s Note

 

At the end of this newsletter is a form that has been forwarded to our group by the NJCFSA (New Jersey Chronic Fatigue Syndrome Association).  It is a Good Doctor Recommendation Form.  The NJCFSA Trustees are currently updating the outdated lists.  If you are fortunate enough to have a caring and understanding physician who works to help you cope with CFS, FM, or MCS (Multiple Chemical Sensitivity), please consider completing the form and submitting it to the address provided.  It is further suggested that everyone save a copy of the form for future use.  So many people lack compassionate care from a physician who understands the intricacies of these illnesses.

 

Next Meeting

The next scheduled meeting will be on Sunday October 15th.  Our speaker will be Tracey Gold, CMA, from the Institute of Neurological Care.  She will be speaking on pain management.  We will also have a discussion and provide information about the various CFS organizations in the US, their functions, purposes and differences.  If you were ever confused about which CFS organization does what, come join us!   

This newsletter is intended for CFS patients in the area of this support group.  The purpose is to share information and support.  If you have questions about meetings please contact Group Leader Anne at annielaurie2@optonline.net or annielaurie617@yahoo.com.  Subscription problems: Nancy Visocki at nvisocki@verizon.net. Editor: Pat LaRosa at pat@larosas.net.


PHYSICIAN RECOMMENDATIONS

            One of the best resources, which the NJCFSA provides for patients with CFS (CFIDS), Fibromyalgia (FM) and Multiple Chemical Sensitivities patients, is the physician recommendation list. This list of physicians personally recommended by our members is held by the support group leaders and by the person who answers calls on our ‘Help line’. Many patients are very grateful for this information. Our current list is now out of date. Physicians may have moved, retired or changed the focus of their practices.  New physicians with expertise in CFS/FM may have recently established practices within New Jersey. 

 

            If you can recommend your doctor or more than one doctor, please take a few minutes to fill out the questions in the box and return it to the address given below. We would like to include on our list recommendations of physicians who are specialists in different branches of medicine, such as Rheumatology, whom you personally know are sympathetic to the problems encountered by CFS, FM, or MCS patients and are willing to assist in the medical treatment of these patients. 

 

Please copy this form if you have more than one recommendation.

 

Physician recommendations

Physician’s Name: ____________________________________________________    

Medical Specialty: __________________________ Board certified: Yes [   ] No [   ]  

Office Address: ______________________________________________________

City, State, Zip: ______________________________________________________

Phone: __________________________

Check all that apply to this physician:

  • Diagnoses and treats CFS[   ]  FM[   ]  MCS[   ]
  • Knowledgeable about CFS[   ] FM[   ] MCS [   ] and it is his/her specialty
  • Knowledgeable about CFS[   ] FM[   ]  MCS[   ] but works in another specialty
  • Is a good primary care provider who accepts that CFS/FM/MCS are real illnesses                                                       but does not claim to be an expert [   ]
  • Accepts that CFS/FM/MCS are real illnesses, but works in another specialty[  ]
  • Helpful in treating severe pain [   ]
  • Has experience in disability claims [   ]
  • I am a patient with CFS[   ]  FM[   ]  MCS[   ]   

Please return this form to: NJCFSA Inc. PO Box 477 Florham park, NJ 07932.

 

            The information in this referral form will be used only to make the Physician referral list for the use of our members. We will obtain the permission of all recommended Physicians before they are put on the list. Patients using the list must make their own inquiries as to whether the recommended Physician takes their insurance or Medicare assignment, or if their HMOs will refer them.