May 2004

 Issue #8

CFS Blue Ribbon          Bergen CFS Support Group Newsletter

May Meeting


The 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 (click on the Grassroots Action Center).  This is the preferred method as it is safer than hard copy mail.  If you have not yet made these contacts, please consider doing so.  The site has sample letters that you can personalize if you so choose.


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.


It was 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 New Jersey, The University of Medicine and Dentistry of New Jersey, and the New Jersey Department of Health and Senior Services was subsequently distributed to physicians throughout the state.  If you have not seen this manual it is available at



Points to Ponder

This was found at the following site

The Value of Connection

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.

Phyllis Griffiths

Literature Review

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 benefits.                                                                                                                                 Hawkins                                                                                                                                                                         Appellate Court Judge Richard Posner is one of the most influential jurists and legal scholars in the United States . His ruling in the case of Hawkins v. First Union Corp., 326 F.3d 914 (7 th Cir. 2003), issued in April 2003, resolves a number of crucial issues. Anticipating the Supreme Court's ruling released a month later in Black & Decker Disability Plan v. Nord, 123 S.Ct. 1965 (2003), which rejected a lower court's determination that the treating physician's opinions in disability benefit claims were required to be given deference, Judge Posner nonetheless ruled that the treating doctor, particularly a specialist in rheumatology, had more knowledge of the claimant's condition than a reviewing doctor who had never seen the patient. Even more important, though, Hawkins recognized that disability usually does not occur suddenly:                                                                                                         A desperate person might force himself to work despite an illness that everyone agreed was totally disabling. Perlman v. Swiss Bank Corp. Comprehensive Disability Protection Plan , 195 F.3d 975, 982-83 (7th Cir. 1999); Wilder v. Apfel , 153 F.3d 799, 801 (7th Cir. 1998); Wilder v. Chater , 64 F.3d 335, 337-38 (7th Cir. 1995); Jones v. Shalala , 21 F.3d 191, 192-93 (7th Cir. 1994). Yet even a desperate person might not be able to maintain the necessary level of effort indefinitely. Hawkins may have forced himself to continue in his job for years despite severe pain and fatigue and finally have found it too much and given it up even though his condition had not worsened. A disabled person should not be punished for heroic efforts to work by being held to have forfeited his entitlement to disability benefits should he stop working.                                                             Another crucial point made by the ruling is that one does not have to be bedridden to be deemed disabled. Attending classes, using a computer, and doing some housework does not, according to the court, indicate that Hawkins is capable of working on a regular basis. The court added:        And when one is working at home it is easier to interrupt one's work every few minutes if need be than to do so at the office. But what is most important and ties back to the plan's bad argument is that Hawkins' unfortunate choice in life is between succumbing to his pain and fatigue and becoming inert, on the one hand, and on the other hand pushing himself to engage in a certain amount of painful and fatiguing activity. If he does the latter, it does not prove that he is not disabled.                                                                                                    Nor was the court willing to accept an argument that the majority of people with fibromyalgia can work. Characterizing that argument as “the weakest possible evidence,” the court pointed out that a “majority could be 50.00001 percent.” However, what the court deemed “the gravest problem” with the defense consultant's report was its rejection of disabling pain as merely “subjective.” The court found that since the accuracy of the diagnosis was unquestioned, because pain complaints are typical of fibromyalgia, flat-out rejection of the disability claim is being in excess of what one would expect to see with fibromyalgia was improper.                                                                                                                                              Morgan                                                                                                                                                                                 Another important appellate court ruling was issued in October 2003 in the case of Morgan v. Unum Life Insur.Co. of America , 346 F.3d 1173 (8 th Cir. 2003), which affirmed a lower court's ruling granting disability benefits to a claimant suffering from fibromyalgia. The claimant, a distinguished researcher in optical sciences for the Honeywell Corporation, struggled to work for as long as he could. However, when Dr. Morgan had to stop working, he continued to attempt to lead as normal a life as possible. His insurer, in an effort to challenge Dr. Morgan's disability claim, placed him under surveillance, and obtained videotape showing him driving, refueling his car, going to a bank, eating lunch at a restaurant, and going to a gym. Rejecting a claim that those activities were inconsistent with disability, the court sided with the claimant, finding those activities were not inconsistent with the claimed disability. The court was also highly critical of the insurer's failure to engage in any independent evaluation of the claim – instead, the insurer relied solely on opinions from in-house reviewing doctors, who had no demonstrated expertise in the evaluation of fibromyalgia. Nor did the insurer give any consideration whatsoever to evidence showing the claimant's cognitive decline.     The lower court opinion in Morgan, along with two other court rulings, are also useful precedents that reject insurers' efforts to limit the payment of benefits for fibromyalgia by characterizing the condition as a “self-reported illness.” So far, Morgan, along with two other decisions, Russell v. Unum, 40 F.Supp.2d 747 (D.S.C. 1999) and McArdle v. Unum, 2001 U.S.Dist.LEXIS 20541 (D.Minn. 2001), have found that fibromyalgia is not “self-reported” since the trigger points can be verified on examination. One lower court has ruled to the contrary, however.                                                                                                                                    Finally, although not a fibromyalgia case, a recent lower court ruling discussing pain as the basis of disability is very instructive in fibromyalgia cases. In Smith v. Continental Casualty Co., 276 F. Supp. 2d 447 (D.Md. 2003), a federal judge in Maryland explained that complaints of pain cannot be characterized as exaggerated without evidence supporting such a conclusion. The court also offered a guide to evaluation of pain:                                                                                                                   No test can measure how much pain a person feels. Indeed, each person's experience of pain is unique.                                                                                                                                                       The evidentiary assessment of pain cannot reasonably differ whether a claimant seeks disability benefits under a private plan of insurance or under the public scheme of social security. Willis v. Baxter Int'l, Inc. , 175 F. Supp. 2d 819, 833 (W.D.N.C. 2001); Palmer v. Univ. Med. Group , 994 F. Supp. 1221, 1233 (D. Or. 1998), abrogated on other grounds by Hensley v. Northwest Permanente P.C. Retirement Plan & Trust , 258 F.3d 986, 994-95 (9th Cir. 2001). Proof is proof. Thus: Once an underlying physical or mental impairment that could reasonably be expected to cause pain is shown by medically acceptable objective evidence, such as clinical or laboratory diagnostic techniques, the [plan administrator] must evaluate the disabling effects of a disability claimant's pain, even though its intensity or severity is shown only by subjective evidence. If an underlying impairment capable of causing pain is shown, its intensity can, by itself, support a finding of disability. Objective medical evidence of pain, its intensity or degree (i.e., manifestations of the functional effects of pain such as deteriorating nerve or muscle tissue, muscle spasm, or sensory or motor disruption), if available, should be obtained and considered. Because pain is not readily susceptible of objective proof, however, the absence of objective medical evidence of the intensity, severity, degree or functional effect of pain is not determinative.  Hyatt v. Sullivan , 899 F.2d 329, 337 (4th Cir. 1990). Because a claimant need not present clinical or diagnostic evidence to support the severity of pain, a plan administrator cannot discount self-reports of disabling pain solely because the objective medical evidence does not fully support them. Hawkins v. First Union Corp. Long-Term Disability Plan , 326 F.3d 914, 919 (7th Cir. 2003); O'Donnell v. Barnhart , 318 F.3d 811, 816 (8th Cir. 2003); Light v. Soc. Sec. Admin. , 119 F.3d 789, 792 (9th Cir. 1997). "'Excess pain' is, by definition, pain that is unsupported by objective medical findings." Cotton v. Bowen , 799 F.2d 1403, 1407 (9th Cir. 1986).                                                                                                                                               In addition to objective medical evidence, an evaluation of the vocational impact of pain must also consider: the claimant's work history; observations of the claimant by third parties, such as coworkers and superiors; the professional opinion of treating and examining physicians; the claimant's history of pain management and drug therapy; the dosage, effectiveness, and side effects of medications; the claimant's reputation for truthfulness; the consistency (or lack thereof) in the claimant's own statements; the congruity (or lack thereof) between the reported symptoms and the claimant's daily activities. O'Donnell , 318 F.3d at 816; Light , 119 F.3d at 792; Palmer , 994 F. Supp. at 1233. The last merits particular scrutiny. See Mickles v. Shalala , 29 F.3d 918, 921 (4th Cir. 1994) (Hall, J., announcing and concurring in the judgment) ("The only fair manner to weigh a subjective complaint of pain is to examine how the pain affects the routine of life.").

Lessons Learned  

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.

·        Be realistic. In a federal case from Indiana , a claimant was disqualified from receiving disability benefits because she manufactured and sold jewelry at craft shows throughout the Midwest and engaged in strenuous adventure travel. Taking an occasional class, sending and receiving e-mails, or engaging in a modest hobby are not inconsistent with disability, though.

Mark D. DeBofsky is an attorney who practices in Chicago , Illinois with the law firm of Daley, DeBofsky & Bryant concentrating in the representation of individuals in disability benefit claims including disability insurance and Social Security disability. He also serves as an adjunct Professor of Law at the John Marshall Law School, Chicago, Illinois.

Next Meeting


The next meeting is scheduled for Sunday June 13th 2004 at 2 PM at Pascack Valley Hospital.  The meeting day was changed in order to bring you a special program. 

Understanding & Treating Chronic fatigue: The Polio Connection

By Richard L. Bruno, Ph.D.

Dr. Richard L. Bruno will discuss the cause and treatment of Chronic Fatigue Syndrome, Fibromyalgia, fatigue in multiple sclerosis and Parkinson's - plus the new West Nile "polio"-- from the point of view of his 20 years of study and treatment of polio survivors with Post-Polio Sequelae.  Post-Polio Sequelae (PPS) are the unexpected and often disabling symptoms (overwhelming fatigue, muscle weakness, muscle and joint pain, sleep disorders) that occur
in polio survivors about 35 years after the poliovirus attack. 
Dr. Bruno is Director of Fatigue Management Programs and The Post-Polio Institute at
New Jersey's Englewood Hospital and Medical Center
.  He is also author of The Polio Paradox: Uncovering the Hidden History of Polio to Understand and Treat "Post-Polio Syndrome" and Chronic Fatigue (Warner Books, 2002). Click on "Post-Polio Letter" at for Dr. Bruno's papers describing his research and treatment of PPS and CFS.

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


Directions to Pascack Valley Hospital

Rockland County via Route 303 South
Follow Route 303 South across the
New Jersey border where it will become Livingston Street (Route 505 South). Proceed for approximately 3.5 miles through four traffic lights. Make a right at the fifth light onto High Street (which becomes Old Hook Road) and continue for approximately two miles through three more traffic lights. The Hospital will be on the right at the fourth light.
Rockland County via Route 304 South

Take Route 304 South to New Jersey where the road becomes Kinderkamack Road (Route 503 South). At first light in NJ, bear left over RR tracks and continue on Kinderkamack Road. Continue for approximately 5 miles. At the eighth traffic light, make a left onto Old Hook Road. Proceed to the second light. The Hospital will be on the left.
Rockland County or George Washington Bridge via Palisades Interstate Parkway

Take Exit 2 from the
Palisades Interstate Parkway and turn left onto Route 9W South. Proceed 0.7 miles and make a right at the traffic light onto Closter Dock Road (Route 502 West). Proceed 2 miles through two traffic lights to the intersection of Piermont Road. Proceed through intersection until the road splits then take right hand curve to blinking light, and turn left onto High Street (Route 502 West). Continue straight for three traffic lights to the intersection of Old Hook and Schraalenburgh Roads. Continue through light and cross railroad tracks. Pass the fenced reservoir on both sides and continue through two lights. The Hospital will be on the right at the third light.

George Washington Bridge via Route 4 West
Follow signs for Route 4 West. Take Route 4 West to
Teaneck RoadBergenfield
exit, bearing right onto
Teaneck Road. Follow Teaneck Road, which becomes Washington Avenue, then Schraalenburgh Road, for 6 miles. Turn left onto Old Hook Road
, and continue for 1.9 miles. The Hospital will be on the right side.
4 East
Take Route
4 East to Route 17 North. Follow Route 17 to the Garden State Parkway North, Exit 168.
Follow the directions below.
NJ Turnpike
Follow to Route 80 West to the
Garden State Parkway North
, Exit 168. Follow the directions below.
Garden State Parkway North

Take Exit 168 (Westwood, Ho-Ho-Kus) and turn right onto
Washington Avenue. Make a right at the fourth
light onto Broadway which becomes
Old Hook Road
. Continue to the fourth traffic light and the Hospital
will be on the left.
Mahwah–Suffern, NY Area

Take Route 17 South to
Ho-Ho-Kus Hollywood Avenue Exit. Make a right at the stop sign. Cross
over Route 17 and proceed approximately 1/2 mile following signs for 502 East. Turn right onto
Saddle River Road
(Route 502 East), which curves to the left and will turn into Werimus Road
and then
Washington Avenue. At the fifth light, turn right onto Broadway which becomes Old Hook Road
. The
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