Bergen CFS Support Group Newsletter
monthly meeting was held on Sunday May 16th.
Our guest speaker was Jon Sterling who began as a member of this
support group and is an activist for people with CFS.
He is currently the Chairman of the CFIDS Association of America. He spoke of the need for advocacy and reminded
everyone to contact his/her congress persons. He
strongly suggested the online version found at www.cfids.org (click on the
Jon provided an update on research and funding. During a question and answer period, he reviewed some of the items addressed at the Spring Conference. Since that event was covered in the April Newsletter it will not be reiterated here.
Jon also explained that the name change movement has been halted. Further action at this point, requires funds that would be more beneficial if directed toward research. He said it could cost millions of dollars to change the name. The CFSAC decided that this would not be the wisest way to spend money at this time.
interesting to learn that an initial group of physicians has been
trained to recognize and manage CFS. That
group will be dispatched to train other groups through out the country. Among the tools being used at the training
sessions is “A Consensus Manual for the Primary care and Management of
Chronic Fatigue Syndrome”. This joint
project of The Academy of Medicine of
Points to Ponder
by Phyllis Griffiths, 1997
I have found that the simple chatter on how to go about coping with everyday life with other PWC's is often more valuable to me than all the scientific and medical postings combined. When I see that others share the same hopes, dreams, problems, and quandaries I feel less alone, less isolated. The depression of the day lifts ever so noticeably. I think it is not so much of the old adage that misery loves company, but more along the lines of the equally old adage of a burden shared is a burden halved.
When I feel useless, to myself and others, I find that it is much harder to get through the black-purple funk that descends upon me like a heavy blanket and keeps all light form reaching me. When I can brighten someone else’s day, my own is also brightened. If I have some coping idea to pass along to someone else... no matter how small or routine it seems to me, I feel that maybe I am less useless than I thought. The black begins to fade to gray and allow light in.
Some days the black-purple funk becomes suffocating. I become overwhelmed by the burdens and worries, and crisis, and know only fear and panic. When I can reach out and tell someone that I hurt.. and they reach out by just caring to listen and say... "yes, I have felt that pain too, and it is terrible"... then I am strengthened. I can stop beating myself up for not being tougher and more resourceful, I can stop trying to minimize my problems as the rest of the world seems to do.
To talk about how we go about our days, how we manage those everyday tasks that are now unrelenting challenges is one way that we help each other to get through another day. We can't gather around the kitchen tables of our friends’ homes... but we can meet here, via the computer.
It is all so very, very important.
I don't think that I could manage to keep on going if I did not have my e-mail friends and places like this to talk, and listen... to feel connected, welcomed, useful and active.
FM Online Newsletter A publication of National Fibromyalgia Association Vol. 4, No. 4 – April 20, 2004; Fibromyalgia and Long Term Disability Insurance – Recent Developments by Mark D. DeBofsky
Several recent court rulings
have shown an enlightened approach to adjudicating disability insurance
claims based on fibromyalgia. Rather than rejecting such claims as
“subjective,” courts have recognized the difficulty claimants face in
establishing disability in the absence of clear-cut medical tests.
Although a physician's support for a disability claim remains an
absolute requirement, the lessons to be drawn from the recent court
rulings offer a roadmap to the successful prosecution of a claim for
Court Judge Richard Posner is one of the most influential jurists and
legal scholars in the
These cases are all extremely informative. First, they illustrate that attempting to live a normal life is not incompatible with disability. These cases also show that the insurers' defenses are not insurmountable and that disability cases can be won, particularly in situations where the insurer has failed to obtain any independent proof supporting a denial of benefits. However, from experience gained in litigating these cases, the following suggestions are of crucial importance:
· If you have been working for a period of time after receiving a diagnosis, make sure you consult with your physician before submitting a claim for disability to avoid a defense of “what's different now?” New symptoms such as increased pain, increased fatigue, or new cognitive impairments need to be documented in the medical records.
· Make sure you are seeing a doctor experienced in treating fibromyalgia and stick with that doctor. Insurers are wary of “doctor shopping;” insurers also question disability reports from doctors who have only seen the claimant on a single occasion.
· Follow your doctor's recommendations. For example, if you have complaints about cognitive impairments and your doctor recommends neuropsychological testing, by all means pursue that testing – it will carry far more weight than your allegation of cognitive impairments or a note in a doctor's chart that says the patient is complaining about cognitive impairments. Sleep studies can also be useful in providing additional supporting evidence.
In a federal case from
Mark D. DeBofsky is an
attorney who practices in
next meeting is scheduled for
Understanding & Treating Chronic fatigue: The Polio Connection
By Richard L. Bruno, Ph.D.
L. Bruno will discuss the cause and treatment of Chronic Fatigue
Syndrome, Fibromyalgia, fatigue in multiple sclerosis and Parkinson's -
plus the new
in polio survivors about 35 years after the poliovirus attack.
Dr. Bruno is Director of Fatigue Management Programs and The Post-Polio Institute at
This is Dr. Bruno's only planned metropolitan area speaking engagement in 2004.
SEATING IS LIMITED - SO PLEASE REGISTER by contacting Nancy Visocki at 201-439-0704 or firstname.lastname@example.org.
Follow Route 303 South across the
Take Route 304 South to
Take Exit 2 from the
Follow signs for Route 4 West. Take Route 4 West to
Follow the directions below.
Follow to Route 80 West to the
Take Exit 168 (Westwood, Ho-Ho-Kus) and turn right onto
light onto Broadway which becomes
will be on the left.
Take Route 17 South to
over Route 17 and proceed approximately 1/2 mile following signs for 502 East. Turn right onto
Saddle River Road
Hospital will be on the left at the fourth light.
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 email@example.com.