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february 2008

Bergen CFS-FM Support Group Newsletter
Meeting Report
The February meeting found our group at another location. This one was held at Panera Bread in the Kohl’s
shopping plaza in Paramus. We welcomed several new members and a few supportive relatives/friends. This
meeting was a sharing session. Each attendee had the chance to briefly tell his/her story. Everyone’s journey
with CFS/FM is very individual, but as each person spoke, we also saw the similarities that many share.
Suggestions for coping and treatments were offered by both new and established members. This positive
interaction brings each of us the validation that together we can deal with this illness.
Resources – The Internet has given us a virtual library of resources. It can be difficult to identify
reliable information. A copy of the NJCFSA Resource list can be found at the end of this newsletter.
Another list of organizations and articles can be found at NJCFSA website n
the left column. Also at this site under FAQ (frequently asked questions), you will find the NJCFSA CFS Fact
Sheets for: CFS (in general), CFS in Pregnancy, and CFS in Children & Adolescents.
Sleep and Pain - There was a discussion of sleep problems. At the NJCFSA Spring 2007 conference, Dr.
Alan Pocinki (who has a private Internal Medicine practice in Washington, DC.) stressed that non-restorative
sleep needs to be evaluated with a sleep study. He said that sleep, pain and depression (if present) go hand
in hand and all must be addressed in order to improve fatigue and pain. This might be a topic for you to
discuss with your personal physician. It was interesting to note that many in attendance at the meeting have
had sleep studies as a part of their evaluations. In his talk Dr. Pocinki also stressed that if physical therapy is
to be a part of treatment, it is important to find a physical therapist well versed in CFS/FM. Improper PT can be
worse than no treatment at all.
Physicians – As usual, a major issue discussed was the problem of finding a doctor who treats CFS. Some
physicians do not treat CFS because they either do not accept it as an illness OR they do not know enough
about it. Recently, it has come to our attention that there are some doctors who will not treat CFS patients
because it is too costly. These are all sad situations. It takes time to properly evaluate someone with CFS –
more time than allotted by insurance carriers. Knowing that many of you do not have the financial resources to
visit some of the well-known CFS doctors, we suggested that you might want to consider Dr. Benjamin
Natelson’s CFS-FM Center. The center accepts both private patients as well as patients to participate in
research studies. Those who qualify for a study receive the research medication or treatment for free. Dr.
Natelson’s o
Pain & Fatigue Study Center
30 Bergen Street, ADMC/1618
Newark, NJ, 07101
973-972-4800
If you have a doctor who is CFS-friendly, please consider submitting his/her name for inclusion on the NJCFSA
Healthcare Providers List. A form can be found at the end of this newsletter.
Name Change
One of the notable names in CFS is David Bell who periodically issues a newsletter, the Lyndonville News.
The above link will take you to his latest edition. In this issue, Dr. Bell encourages his readers to go to
to learn about the current campaign for a fair name for this illness. If you
go to this site, be sure to go to all the links. You will learn about the name campaign from all angles. The
Name Change Advisory Board is composed some of the leading researchers and practitioners. You will also
have an opportunity to sign a petition to change the name to ME/CFS. The explanations for this choice can all
be found at the site. Please read them. We are not necessarily endorsing this. We are offering the
information, so you can make your own personal decision after reading the materials.
Social Director, Frank Kawa, has set a date for a gathering
Wednesday March 5th
Luncheon
The Seville Diner
289 Broadway
Westwood
The group will be there from 1:30 PM until about 3 PM.
Just show up.
If you have any questions or wish to let Frank know you are coming, you can call him at 201-768-4111.
You do not need to contact Frank to attend.
Directions to New Milford Library
[location of March meeting]
Meeting of the Bergen CFS/FM Group is in small conference room in back of Library reserved by Judy Machacek and
NJCFSA
From Route 4, traveling East:
Follow Route 4 past Hackensack Ave, (past Diner and Hooters) Exit right at River Road, toward New Milford/Teaneck Bear left at “T” in road (will see FDU beyond) Follow River Road, to the 4th light, (about 2 miles) To Ridge St. (Left side Turn Right at Ridge St., go one block to bend in road= Dahlia Rd. Turn Right onto Dahlia Rd. Library is on Right, parking lot in rear Exit at River Road, New Milford ( just past Belle Ave Exit) Bear Right at bottom of hill, go to light = River Rd. Follow River Road, to the 4th light, (about 2 miles) To Ridge St. (Left side Turn Right at Ridge St., go one block to bend in road= Dahlia Rd. Turn Right onto Dahlia Rd. Library is on Right, parking lot in rear From towns North of New Milford: A: Take Kinderkamack Rd south. Turn left at River Edge Rd (down the hill) Continue over tracks and up to River Rd to light “T” in road) Turn right onto River Rd and follow south, past Shop Rite Total lights from River Edge Ave to Ridge Street is 4 lights Now turn Left onto Ridge Street, (sign says River Lane on right,!?) Turn Right onto Dahlia RD, Library is on Right, parking lot in rear. Follow Boulevard south until you see Blue Sign for Library at Ridge St. Turn Right onto Ridge Street, follow curving road, bearing left until “T” in RD. Turn Left onto Dahlia Rd. Library is on Right, parking lot in rear. It is strongly recommended that you do not follow MapQuest - too many back streets and
confusing turns
.

FM in the Medical News
www.medscape.com
Duloxetine Reduces Pain Severity in Fibromyalgia Patients
Stephanie Doyle
Medscape Medical News 2008. 2008 Medscape
February 19, 2008 (Kissimmee, FL) — Results of a randomized trial suggest that duloxetine (Cymbalta, Eli Lilly & Co) is safe and
effective in the treatment of fibromyalgia, whether depressive symptoms are also present or not.
Duloxetine could be the next drug approved by the US Food and Drug Administration (FDA) for the treatment of fibromyalgia, according
to a researcher whose study was presented here at the American Academy of Pain Medicine 24th Annual Meeting. "It has been shown
that this class of medications can be very beneficial for treatment of pain and often can improve fatigue as well," Philip Mease, MD,
from the University of Washington School of Medicine in Seattle, told Medscape Neurology & Neurosurgery. "This is a real boon for
these patients." The study, a 6-month randomized, double-blind, placebo-controlled, fixed-dosed trial, was the second and slightly
larger trial of duloxetine hydrochloride in fibromyalgia. An application to the FDA for approval in this indication was filed in August 2007,
Dr. Mease said. "We're hoping for approval sometime this year," he said.
New Indication
Duloxetine hydrochloride is a member of a class of drugs commonly referred to as serotonin and norepinephrine reuptake inhibitors
(SNRIs) and previously was FDA-approved for treating major depression and managing diabetic neuropathic pain. The recent study
aimed to determine whether treatment with 120 mg of duloxetine for 3 months was effective in reducing pain severity in patients with
fibromyalgia syndrome (FMS). Two doses of duloxetine, 60 and 120 mg per day, and placebo were compared during a total of 6
months of treatment in adults. Coprimary efficacy measures included the Brief Pain Inventory Average Pain Score (APS), and the
Patient Global Impressions of Improvement (PGI-I) questionnaire. Safety and tolerability were also assessed.
At 3 months, patients treated with the 120-mg/day dose showed greater improvement in change from baseline in APS score and in their
end-point PGI-I score vs placebo-treated patients. At 6 months, the 120-mg/day group still exhibited greater improvement in APS
change and PGI-I scores.
Coprimary End- Point Outcomes With 120 mg/day Duloxetine vs Placebo at 3 and 6 Months
Duloxetine 120 mg/d Placebo P
APS score: change from baseline to 3 mo -2.31
APS score: change from baseline to 6 mo -2.25
PGI-I score at 3 mo
PGI-I score at 6 mo
The 60-mg/day group showed significant improvement compared with the placebo group on both measures at 3 months and on APS
change at 6 months. At 6 months, response, defined as 50% or greater reduction from baseline in APS, was greater in both the 120-
mg/day group (35.9%; P ≤ .01) and the 60-mg/day group (32.6%; P ≤ .05) compared with placebo (21.6%). Duloxetine was similarly
efficacious in patients with (n = 122) or without (n = 375) major depressive disorder with regard to both coprimary end points, they note.
Discontinuation rates over 6 months were similar among the groups: 45.3% in the 60- mg/day group, 46.3% in the 120-mg/day group,
and 50.0% in the placebo patients. Adverse event–related discontinuation was significantly higher in the 120-mg/day group (25.9%; P
=.003) but not in the 60-mg/day group (15.3%, P = .400) compared with the placebo patients (11.8%).
The researchers concluded that both the 60- and 120-mg/day doses are "efficacious and safe treatment options for pain associated
with FMS, whether or not major depressive disorder is present."
Cause Still Unknown
"Fibromyalgia can be very difficult to treat, in part because we don't know what causes it," said Ken Follett, MD, PhD, president-elect of
the American Academy of Pain Medicine, who was not involved with the study. "So some of the medications being delivered for the first
time can offer some hope to patients with fibromyalgia."
Pregabalin (Lyrica, Pfizer) was approved for the treatment of fibromyalgia in June 2007.
Funding was provided by Eli Lilly & Company and Boehringer Ingelheim. Dr. Mease reports no relevant financial relationships.
American Academy of Pain Medicine 24th Annual Meeting: Abstract 109.

Next Meeting
The next meeting will be Sunday March 16th from 2-4 PM at the New Milford Public Library [directions included
in this newsletter]. Guest speaker will be energy healer Shoe-Zen Shin (Osamu Kamiyama.) Mr. Shin has a
private practice in Paramus and has attended a few of our meetings to offer mini sample treatments to those in
attendance. The Bergen CFS-FM support group, its co-leaders, and our parent organization the NJCFA do not
necessarily endorse any particular therapies, but offer this as an opportunity to learn about some of the
alternative and/or complimentary therapies.
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: Pat , Nancy Visocki at
, Judy Machacek at k Kawa at 201-768-4111.
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: ______________________________________________________ • 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 • 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 enquiries as to whether the recommended Physician takes their insurance or Medicare assignment, or if their HMOs will refer them.

Source: http://njcfsa.org/brgnNewsletter02-08.pdf

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