January 2005

 Vol. II, Issue #14

         Bergen CFS Support Group Newsletter

Meeting Report

The meeting was held on Sunday January 16th at Pascack Valley Hospital.  Ken Andes made his third visit to our group.  The focus of this session was Tai Chi that can be performed while sitting in a chair.  It included some non-strenuous stretching followed by a basic Tai Chi movement that can provide a restful sense.  This was followed by a variation that tends to have a more stimulating effect.  Ken cautioned those present to be selective when choosing a Tai Chi or acupuncture practitioner.  Training and reputation are important factors.

Lee Cohen, PhD, of the CF Alliance http://health.groups.yahoo.com/group/CFAlliance/ also attended.  She came to speak to our member Ed DeHooge.  The CF Alliance had recently printed a very favorable review of his book Fibro Man chronicling his journey with CFS and FM.

Points to Ponder    

(This is from the December CFIDS.org online publication (for those who may have missed the information last month)

On Nov. 18, 2004, Unum-Provident Corp., the nation’s largest disability carrier with 25 percent of the market nationwide, settled a multi-state investigation into claim denials. Unum will pay $15 million in fines and will be forced to re-examine 200,000 denied claims as Unum-Provident Corp. …Persons with CFIDS (PWCs) may represent a sizable group within those improperly denied benefits. The investigation found that Unum relied solely on their in-house physicians and often failed to consider both physical and psychological conditions in determining whether to deny or terminate benefits. Scores of PWCs have reported these problems in their dealings with Unum and other insurers now owned by Unum. We’ve covered some of these stories in the CFIDS Chronicle over the years. Unum insures 25 million people, through individual and group policies written by: Unum Life Insurance Co. of America, the Paul Revere Life Insurance Co., the Provident Life and Casualty Insurance Co., Provident Life and Accident Insurance Co., and the First Unum Life Insurance Co.                                                                                                       If you have been denied benefits under a Unum-held policy, contact your disability attorney or visit http://www.unum.com/newsroom/news/corporate/11032004_settlement.aspx for details about the reconsideration process. The National Organization of Social Security Claimants Representatives provides a network of attorneys specializing in disability law. You can reach their referral service at 800-431-2804.               Additional info from www.cfids.org

Winning the Long-Term Disability Battle                                                                                                     Are you considering making a claim with your insurer for long-term disability benefits because CFIDS is making it too difficult to continue working? Have you already filed a claim, only to have it questioned by your insurance company? Or has your claim been denied, and you're thinking about how to launch an appeal?                                                                                                                                                                    If you're disabled by CFIDS and you are covered by long-term disability insurance, we have an article for you. Writers Justin Frankel and Jason Newfield are attorneys who have handled numerous disability insurance claims, appeals and litigation involving CFIDS and fibromyalgia. In their article, they'll guide you through the minefields that patients often step in inadvertently, "blowing up" their chances for winning disability benefits. Just go to http://www.cfids.org/cfidslink/disability.asp to read this practical and informative overview.

CFS Awareness Day       

May 12, 2005 is annual CFS/FM Awareness Day.  It is also International ME/CFS Awareness Day.  There is currently a campaign underway to increase awareness through letter writing.  This is being called the Million Letter Campaign.  This information came from Dominie Bush      

Dear FMS/CFIDS Sufferers,
Have you ever noticed the blank stares you get when you tell people you have fibromyalgia?  They always say, "What's that?!"  If you say you have chronic fatigue syndrome, they say, "Well, I get tired too!!"  
Would you say that "Fibromyalgia Awareness" is lacking in our society??! The GOOD NEWS is that we can have a MAJOR IMPACT on the media and the world BEFORE the next Fibromyalgia Awareness Day (also International ME/CFS Awareness Day) on May 12, 2005!                                                                                                                  We are hoping that a MILLION letters will be sent!   Those who want to participate need to write only one letter and just change the address at the top to go to each of the recipients.   
The laws are way too tough for people to win their disability cases, because FMS/CFIDS is an invisible disease. In only 3 days I have received 400 emails from sufferers of the FMS/CFIDS disorder who are enthusiastic about this idea. It should not cost more than $1.85 (USA) to mail these letters for each patient.  We may even get this aired on television!
This is about millions of sick people forced to go through the barbed wire fence to get some help.
Letters need to be ONE PAGE ONLY.   We all need to send the letters out ON THE SAME DAY as everyone else so that this gets noticed.  The date we are aiming for is MAY 1, 2005, so that the letters are received at the same time and just prior to Fibromyalgia Awareness Day (International ME/CFS Awareness Day) on May 12, 2005. The more letters that are sent, the better the chance will be for all of us."  If victims of FMS/CFIDS mail their letters on MAY 1, 2005, we will speak as ONE VOICE and hopefully capture national attention for this illness.  This will be much more effective than anything else we can do as individuals! 
 Your ONE PAGE letter should contain the following:
 1.  YOUR NAME
 2.  LOCATION  (City, State and/or Country)
 3.  OCCUPATION or achievements prior to FMS/CFIDS
 4.  DATE OF ONSET of your FMS/CFIDS (and what you think caused it)
 5.  SYMPTOMS you suffer from
 6.  HOW this illness has affected your career, finances, relationships, family, etc. (be sure to mention any  LOSSES you have experienced)
 7.  WHAT you are asking for:  e.g., recognition of this illness, for doctors and lawyers to take FMS/CFIDS seriously for disability cases, for understanding from family and friends, for money to be spent on research for a cure, for media coverage, or whatever else comes to mind.
 (Most of us could write a book about our illness, but please limit your letter to one page.)

1.  THE FIRST LADY, WHITE HOUSE

1600 Pennsylvania Ave., NW

Washington, DC 20500

2.  Story Editor

20/20, ABC NEWS

147 Columbus Ave., 10th Floor

New York, NY 10023

3.  FOX NEWS

5151 Wisconsin Ave., NW

Washington, DC 20016

4.  Story Editor

60 MINUTES, CBS NEWS

524 West 57th St.

New York, NY 10019

5.  Senior Supervising Producer

MONTEL WILLIAMS

433 West 53rd St.

New York, NY 10019

 CANADIANS:  Please use the following address instead of the White House (#1 above): CANADA PENSION PLANS, HUMAN RESOURCES DEVELOPMENT CANADA, DISABILITY DEPARTMENT, P.O. Box 2710, MAIN STATION, EDMONTON, ALBERTA,CANADA,T5J 4C2

Other suggested recipients are:

Dr. Phil Show

5482 Wilshire Blvd., #1902

Los Angeles, CA  90036

 

Barbara Walters

23852 Pacific Coast Hwy., Suite 401

Malibu, CA  90265

 

Also, you can write your Congressman by visiting: http://www.arthritis.org/advocacy/priorities/priorities_contact.asp

 

But please remember that we don't want to dilute the quantity of our letters to individual recipients, so if you can only send 5 letters, please send them to the 5 MAIN addresses listed above. Oprah Winfrey is not included in this list, because she no longer accepts unsolicited input for her shows.

We need to build enthusiasm and momentum in the fibromyalgia community between now and MAY 1, 2005!  Please tell fibromyalgia support groups, friends with FMS/CFIDS, and even doctors who have experience with FMS/CFIDS patients and understand this condition.  Forward this information to anyone you know with FMS/CFIDS or post it on fibromyalgia newsgroups.  We need to get the word out!

I don't know of a better way to accomplish our goal of FMS/CFIDS Awareness!  It will take just a little effort from each of us in telling our own unique FMS/CFIDS story in "one page" form and sending it to people who have power and influence in our society.  Remember, we are doing this not just for ourselves, but for millions of sufferers worldwide.
Dominie Bush    dom@fms-help.com

P.S. Million Letter Campaign T-SHIRTS & SWEATSHIRTS are great for individuals or support groups!   Pattie [Caprio] designed the logo which appears at the top of this page and also on the shirts.

Literature Review

Benefit of Ribose in a Patient With Fibromyalgia

Posted 01/07/2005on www.medscape.com

Benjamin Gebhart, Pharm.D.; James A. Jorgenson, M.S., FASHP

Abstract

Ribose was added to the existing treatment regimen of a woman with fibromyalgia, resulting in a decrease in symptoms. It has been postulated that patients with fibromyalgia may have an alteration in muscle adenine nucleotide metabolism, leading to depleted energy reserves and an imbalance in cellular adenosine-triphosphate:adenosine 5'-diphosphate:adenosine 5'-monophosphate (ATP:ADP:AMP) ratios with an abnormal energy charge. As a key component in adenine nucleotide synthesis, ribose supplementation may be useful in such patients.

Introduction

Fibromyalgia is a syndrome that is manifested by generalized muscle pain and additional systemic symptoms of fatigue, tenderness and stiffness in multiple joints, sleep disturbance, and alterations in bowel activity. The specific etiology is unknown; however, changes in muscle histology, energy metabolism, oxygen utilization, and the neuroendocrine stress-response system have been postulated to play a role in the development and persistence of this disorder.[1] Low levels of muscle adenine nucleotides, reflected in depleted energy reserves and an imbalance in cellular adenosine 5'-triphosphate:adenosine 5'-diphosphate:adenosine 5'-monophosphate (ATP:ADP:AMP) ratios with an abnormal energy charge, have been reported.[2-4] The unknown cause and varying presenting symptoms make fibromyalgia a therapeutic challenge for practitioners.[5-7]

The management of patients with fibromyalgia requires the integration of both pharmacologic and nonpharmacologic approaches. Pharmacologic options have included tricyclic antidepressants, selective serotonin receptor antagonists, analgesics, benzodiazepines, antiinflammatory agents, and corticosteroids.[5, 6, 8] Routine daily exercise programs, dietary modifications, alternative therapies such as biofeedback and hypnotherapy, and nutraceuticals such as S-adenosyl-L-methionine (SAMe) have also been explored.[9] Unfortunately, less than 50% of patients achieve any meaningful relief of their symptoms with use of those therapies.[5]

We describe the case of a patient with fibromyalgia who had symptomatic relief when ribose was added to her existing treatment regimen. There have been anecdotal reports on the benefits of ribose in patients with fibromyalgia in whom conventional therapies have failed; however, to our knowledge, this is the first published case of use of ribose for this syndrome

Case Report

A 37-year-old woman had daily episodes of intense musculoskeletal pain and stiffness, mental "cloudiness," bouts of diarrhea, and sleep disturbance. As she was a surgeon, these symptoms compromised the skills necessary to perform her daily duties in the operating room. She was diagnosed with fibromyalgia by exclusion of other diseases and syndromes and in accordance with the American College of Rheumatology criteria.[10]

The patient was treated with ibuprofen 800 mg twice/day, valdecoxib 10 mg once/day, diphenhydramine 50 mg-acetaminophen 1000 mg at bedtime, and physical therapy once/day. She stated that this therapeutic regimen had limited benefit and that the adverse effects from these drugs further impaired her ability to perform her operative duties.

Approximately 7 months later, in addition to her regular drug therapy, the patient began taking CORvalen (Bioenergy, Inc., Ham Lake, MN), a ribose-based product. She took 5 g of CORvalen mixed in water twice/day. She experienced no adverse effects, and after 14 days she reported a decrease in her symptoms. Specifically, she noted an improvement in sleep, mental alertness, a marked decrease in joint pain, and normal stools. This trend continued, and after an additional month of CORvalen therapy she reported near-normal functioning with a major reduction in her symptoms.

After another month of taking CORvalen and feeling "normal," the patient elected to discontinue the drug. Within 7 days, she regressed to her initial fibromyalgia state, as reflected in joint pain, sleep disturbance, morning stiffness, trigger-point flares, and diarrhea. She resumed taking CORvalen, at the same dosage as before, and a major reduction in her symptoms again occurred within 14 days. She noted continual benefit for the next month while taking CORvalen. She stopped taking the drug for a second time after this additional 30-day period, and once again she experienced a reemergence of symptoms. When CORvalen was restarted for a third time, the patient's symptoms again subsided.

At the time of this writing, the patient was continuing to take CORvalen and was satisfied that her symptoms had abated.

Discussion

Ribose is a simple carbohydrate that plays a role in high-energy phosphate and nucleic acid synthesis. After ischemia or hypoxia, myocytes have decreased levels of ATP and total adenine nucleotides. Several days are required for their recovery once normoxia has been reestablished.[11-13] In patients with chronic hypoxic conditions, the cellular energy charge may never be fully regained.[14] These cells have the capacity to regenerate ATP; however, the pentose phosphate pathway of glucose metabolism utilized in the formation of the ribose that is needed to drive the regenerative process is slow in both heart and skeletal muscle cells due to poor expression of specific rate-limiting enzymes. Supplemental ribose has been shown to enhance the synthesis of adenine nucleotides, rebuilding depressed energy pools in both the heart and skeletal muscle after an ischemic or hypoxic insult.[11, 12] Ribose bypasses the rate-limiting enzymatic steps of the pentose phosphate pathway and accelerates the formation of ATP and subsequent tissue recovery.[15]

Supplemental ribose is initially converted to ribose-5-phosphate, subsequently forming 5-phosphoribosyl-1-pyrophosphate, a molecule key to the synthesis of ATP through the de novo purine nucleotide pathway.

The safety of ribose has been investigated in standard laboratory and animal toxicology models `and in human studies both subjectively and objectively. Investigators have concluded that ribose is well tolerated at dosages of up to 60 g/day, with no significant adverse effects.[16]

Ribose has been shown to improve the energy recovery time in skeletal muscle and to relieve fatigue, soreness, and stiffness after intense exercise.[12, 13, 17] It also has been reported to have a beneficial effect after high-intensity exercise in sports medicine. One study concluded that ribose accelerated the replenishment of ATP after intense muscle contractions,[18] and bodybuilders and sprinters have reported subjective and objective benefits during exercise after the administration of ribose.[18-20] However, other reports have shown inconsistent results for ribose in relation to improving short-term anaerobic exercise performance, muscle strength, endurance, or body composition during cycling or resistance training.[20, 21]

Ribose has also been investigated for its potential medical efficacy in both animal studies and human clinical trials. To date, the most promising data have been reported in connection with the application of ribose in cardiovascular disease. Both short-term and long-term animal studies found that the use of ribose after myocardial ischemia resulted in enhanced recovery of ATP along with improved diastolic functional parameters.[22, 23] Clinical benefits have also been observed. Patients with coronary artery disease or heart failure have decreased myocardial ATP levels. Daily supplemental ribose has been shown to improve cardiac function, increase exercise tolerance, and enhance quality of life in this population.[24]

Patients with fibromyalgia may experience an alteration in physiologic muscle metabolism. It has been found that they reach the anaerobic threshold in their muscles earlier, thereby using less of the available energy-rich phosphate metabolites at maximal work capacity.[25] In another study, patients with fibromyalgia were reported to have a potential abnormality in high-energy phosphate metabolism, as evidenced by significantly lower levels of ATP and ADP in affected muscles as compared with patients without the disease.[2]

Theoretically, the effect of ribose on increasing the muscle energy pool could reduce the metabolic strain in affected muscles and allow patients to assume a more active lifestyle. Considering the known musculoskeletal symptomatology in this syndrome and the reported benefits of ribose in skeletal muscle metabolism and physiology, supplemental ribose appears to have aided our patient in improving her quality of life.

Conclusion

Fibromyalgia presents a continuing therapeutic challenge. Ribose is a naturally occurring carbohydrate with documented medical benefits in patients with cardiovascular disease. To our knowledge, this is the first report to suggest its potential benefit in a patient with fibromyalgia, who had had suboptimal results with conventional therapies. We are designing a trial using objective outcome measures to further evaluate the effectiveness of this product in patients with fibromyalgia.                                                                                                                                              This article is reprinted with the permission of James A. Jorgenson, M.S., FASHP; e-mail: james.jorgenson@hsc.utah.edu

Coming Up

Mark your calendar.  The Spring Conference will be held on April 30, 2005 at Robert Wood Johnson in New Brunswick.  More information will be included in future newsletters.  

Next Meeting

The next scheduled meeting is February 20th from 2-4 PM at Pascack Valley Hospital.  It is an open meeting with time to discuss areas of concern to you.  We also plan to show a portion of a video from a recent conference if time permits.

This newsletter is intended for CFS patients in the area of this support group.  The purpose is to share information and support. Subscription problems: Nancy Visocki at nvisocki@verizon.net. Editor: Pat LaRosa at pat@larosas.net.