Home | Newsletter | Pamphlet | News and Events | Patient Resources |
 | Bedroom Talk | Books and Videos | Letters | Articles of Interest | Links |

CSSA - Click Here to Return to our Home Page

Since the first printed issue of The Syndrome Sentinel in November 1997, we have attempted to provide the most current and significant information on chronic ‘invisible’ illnesses which we believe to be along the same continuum. Feedback has told us that we were successful, which is very gratifying.

The printed newsletter was a labor of love, but it took its toll on those of us who are ill ourselves. Because of that, the decision was made to suspend publication effective with the Winter 2001 issue. The Board of Directors of CSSA realized that the newsletter was perhaps our most important instrument in providing awareness, education and support for these illnesses, but we also realized that it cannot be at the cost of our own health.

Back issues are available at a cost of $5 each (includes shipping and handling).  In most respects, the information contained in these issues is timeless, based on the current state of research. The cause(s) of these 'invisible' illnesses is still unknown, and there is still no cure. 

The table of contents and excerpts from each issue are shown below. If you would like to order back issues, charge your order on VISA or MasterCard through PayPal here.

Pay me securely with your Visa or MasterCard through PayPal!

IMPORTANT: Please use the Mail Order Form if you wish to order back issues with Check/Money Order

In the Winter 2001 issue of The Syndrome Sentinel:

  • The Biochemistry of Chronic Pain and Fatigue, by Neil McGregor, MDSc, et al

  • Toronto Scientists Discover Master Immune System Switch, by Helen Branswell, The Canadian Press

  • Childhood Polio Infection May Cause Chronic Fatigue Syndrome in Baby-Boomers, from the Post-Polio Institute, Englewood Hospital

  • Polio Survivors' "Thinking Problems" Similar to Those in Parkinson's Disease, Not Alzheimer's, News Release

  • Fibromyalgia Patients Have Longer "Pain Memories"

  • News in the World of Myofascial Pain, by Devin Starlanyl

  • Fall Conference Updates, by Jean Pollard

  • Multiple Chemical Sensitivity: How to Reduce Your Toxic Load, from Alternative Health Magazine

  • Hepatitis B Vaccine Hearings: School Nurse Perspective, by Patti White, RN

  • Tribute to Dr. David Streeten, by David Bell, MD

  • Get Informed About Vaccines

  • Voices: Writings from people with chronic syndromes

  • Something I Ated, by John Herd
  • Ode to IBS, by Rita Shaw
  • HOWL, an editorial by Joan Livingston
  • HOWL 2000, by Joan Livingston
  • To Walk A Mile ... , by Bek Oberin
  • Information, Please!: notes of interest

  • Research Review

  • The Doctor Is In, with a follow-up by Neil McGregor, MDSc

  • Bedroom Talk with Kelly

  • Connie on Coping: Practical solutions to your problems in everyday living

  • Book Reviews:

  • Stricken: Voices from the Epidemic of Chronic Fatigue Syndrome, edited by Peggy Munson
  • After the Diagnosis: From Crisis to Personal Renewal with Chronic Illness, by Joann LeMaistre, PhD

Following is an excerpt from 'Childhood Polio Infection May Cause Chronic Fatigue Syndrome in Baby-Boomers, from the Post-Polio Institute, Englewood Hospital and Medical Centers:

"Fifteen years of research at The Post-Polio Institute has found evidence of brain stem damage in polio survivors who have fatigue associated with Post-Polio Syndrome, including lesions on MRI of the brain, attention deficits on neuropsychologic testing, reduced levels of brain activating hormones, and brain wave slowing.  “These abnormalities are evidence of damage to the brain stem neurons that activate the brain – the brain activating system that keeps the brain awake and focuses attention – and they are identical to abnormalities seen in patients with Chronic Fatigue Syndrome (CFS),” said Dr. Bruno.  “We believe that brain activating system damage causes fatigue in both polio survivors and those with CFS."

"Between 1934 and 1954, the year the polio vaccine was developed, nine outbreaks of CFS occurred either at the same time as polio epidemics or affected the staff at polio hospitals.  In fact, the first CFS outbreak was in 1934, sickening the staff at the Los Angeles County polio hospital,” said Dr. Bruno.  And, just as in Iceland, some who became fatigued in L.A. in 1934 remained fatigued for decades.  “The symptoms of polio and CFS were so similar,” said Dr. Bruno, “that 48% of the patients in the CFS outbreaks between 1934 and 1954 were thought initially to have had non-paralytic polio.”

Following is an excerpt from 'News in the World of Myofascial Pain', by Devin Starlanyl:

"We now have facts that cannot be disputed.  At last we have proof that myofascial pain caused by trigger points is a true disease.  We know what creates a trigger point, what it is, and many of the ways it can cause us pain and other symptoms.  We know what causes those taut bands that constrict our muscles, and we know why our muscles become so tight that they hurt."

In the Summer/Fall 2000 issue of The Syndrome Sentinel:

  • CSSA Is Growing!, with a new Research Review by Lori Clovis, MA; a welcome to Meghan-Morgan Shannon, International Educator and Activist, as Advisor

  • Fibromyalgia & Chronic Fatigue Syndrome – Related Syndromes?, by Lisa Lorden, CFS/FMS About.com guide

  • Fibromyalgia and Chronic Fatigue Syndrome – What is the Connection?, by Moira Smith

  • Getting Back to Basics: CFS and FM Are More The Same Than They Are Different, by Melissa Kaplan

  • The First National Symposium on Multiple Chemical Sensitivity, Chronic Fatigue Syndrome and Fibromyalgia: Environmentally-Triggered and Emerging Illnesses

  • Myofascial Release Therapy and Skepticism, by Kathy Monkman, RN, LMT

  • First, Do No Harm: Why Only Alternative Medicine Can Live Up to This Ideal, by Burton Goldberg

  • Scents and Sensitivity: People with Multiple Chemical Sensitivity Live With A Multitude of Problems. by Steve Powell, Everett (WA) Herald Writer

  • Rep. Dan Burton Critical of Vaccine Approval Process: Staff Report Details FDA and CDC Conflicts in Approval of Controversial Rotavirus Vaccine, House Staff Report

  • Brain Scans of Gulf War Veterans Show Brain Damage

  • The State of CFIDS/M.E. Science: CRITICAL!!, by Lori Linderman Clovis, MA

  • How to Acquire Social Security Benefits for CFIDS/CFS and Fibromyalgia Sufferers, by Alec Sohmer, Esq.

  • Statement of Congressman Jack Metcalf, Subcommittee on National Security, Veterans Affairs, and International Relations, Rep. Metcalf Investigative Report, The Role of Squalene as an Adjuvant in Vaccines, by Richard G. Shuster

  • "We Will Not Desert You", a tribute to our Veterans

  • Should MCS/CI/EI Be Called An Illness?, by Maggie Maeve Carson MacRaven, MA

  • Making It Right Now!, a new email list, by Maggie Maeve Carson MacRaven, MA

  • "I Remember Me", a Documentary by Kim A. Snyder

  • Information, Please!, notes of interest

  • We All Need a Little Humor: Reuterz News Service

  • The Doctor Is In, with a reply on cognitive disturbances

  • Coming Soon: Bedroom Talk, a safe, anonymous place to ask your questions regarding intimate relationships

  • Book Reviews:

  • Thriving With Your Autoimmune Disorder: A Woman's Mind-Body Guide, by Simone Ravicz, PhD
  • Chemical Brain Injury, by Kaye H. Kilburn

Excerpt from the Statement of Congressman Jack Metcalf, Subcommittee on National Security, Veterans Affairs, and International Relations:

"I have issued a report culminating a three year investigation into the conduct of the DOD (Department of Defense) with regard to the possibility that squalene, a substance in vaccine adjuvant formulations not approved by the FDA, was used in inoculations given to Gulf War era service personnel. According to the GAO (General Accounting Office), scientists have expressed safety concerns regarding the use of novel adjuvant formulations in vaccines, including squalene.

"The report reveals that the FDA has found trace amounts of squalene in the anthrax vaccine. The amounts recorded are enough to "boost immune response," according to immunology professor Dr. Dorothy Lewis of Baylor University. Therefore, my report concludes that, Mr. Chairman, you are absolutely correct in demanding an immediate halt to the current AVIP (Anthrax Vaccination Immunization Program).

"My report further states that an aggressive investigation must be undertaken to determine the source of the squalene, and the potential health consequences to those who have been vaccinated, both during and after the Gulf War.

"The report also documents at length DOD "stone-walling" attempts to resolve the squalene issue, which GAO investigators characterized as "a pattern of deception." The GAO stated the DOD denied conducting extensive squalene testing before the Gulf War, then admitted it after being confronted with the public record. The GAO revealed that DOD officials deliberating deployment of the anthrax vaccine expressed a "willingness to jump out and use everything," in discussing experimental vaccines containing adjuvants not approved by the FDA."

In the May 2000 issue of The Syndrome Sentinel:

  • An International Perspective on ME Presented at the All-Party Parliamentary Group on ME Annual General Meeting, Wednesday 22, March 2000, by Meghan-Morgan Shannon, MS, MFT

  • The Rowntree Report, Hansard UK, House of Lords February 16, 2000, Speech by The Countess of Mar

  • CFS Coordinating Committee News, from Dr. Donna Dean, Co-Chair of the DHHS CFSCC

  • Ninety Percent of Fibromyalgia Patients Have Thyroid Disease, Dr. John Lowe, board certified pain management specialist (American Academy of Pain Management)

  • Link Between Autism Increase And Vaccination, by J. Mercola, DO
  • It’s The Chemicals, Stupid, from the Ohio Network for the Chemically Injured

  • Persistent Pain Is A Disease

  • Support Groups More Popular Than Ever — Embarrassment Not a Deterrent

  • Sleep and Hormones in Women: Pieces to the Puzzle of Fibromyalgia & Related Conditions, by John L. Shaver, PhD, RN, FAAN

  • Excerpts from “Derailing Democracy” by David McGowan

  • Voices:  Writings from people with chronic syndromes

  • Meet Elaine DeFreitas, by Jean Pollard, Lyndonville Family Health Center
  • My Name Is Fibromyalgia
  • Editorial: CFS In Washington & Bethesda, by John Herd
  • The Doctor Is In, with Daniel Clauw, MD  

  • Connie on Coping:  Practical solutions to your problems in everyday living

  • Book Review:

  • Validate Your Pain, by Drs. Allan Chino and Corinne Davis

Excerpt from An International Perspective on ME:

“You are way ahead of the USA, as most people in the UK know what ME is and seem to understand that it is a serious disease.  At least in my experience, when I say I have ME, most people know what it is and I am treated with respect.  However since 1997 when Dr. Wessely and associates successfully convinced your National Health System to rename ME Chronic Fatigue Syndrome (CFS), the disease and people living with it began losing what little respect they had gained since the original cluster outbreaks in 1950s, such as the “Royal Free Hospital Disease”.  In fact the lives of persons with ME in the UK have been severely and negatively affected by this “new” name.”

“Dr. Philip R. Lee, former Assistant Secretary of Health and Human Services (HHS) started a federal interagency group in 1993, which is now protected under federal charter, to address the issues of this disease.  This group is called the CFSCC (Chronic Fatigue Syndrome Coordinating Committee).  Dr. Lee left his post in January 1997, having gone as far as he could to bring awareness to the Federal Government regarding the disease ME-CFS.                    

“Dr. Lee accepted the [Rudy Perpich] award and spoke very strongly about the name.  He stated, “Chronic Fatigue Syndrome was never meant to be the name of a disease; it was a working definition”.  Dr. Lee disagrees strongly with Dr. Stephan Straus.  Dr. Straus at the time worked for a branch under the HHS called National Institutes of Health (NIH) in the National Institute Allergy and Infectious Diseases (NIAID) division.  In other words, Dr. Straus was Dr. Lee’s subordinate.

How is it that we in the USA only hear about the research done by Dr. Straus and Dr. Reeves (Centers for Disease Control and Prevention, CDC) when there is a lot more research funded by the NIH which shows that there is much more to this disease ME than the psychobabble espoused by these two men?  A number of significant studies have shown neurological, endocrine, immunological, and cardiac involvement in this disease.  Yet in the USA, the psychological aetiology theory remains firmly in place.”  

Excerpt from
The Roundtree Report

“My Lords, we all know of and respect the expertise of the noble Earl, Lord Russell, in this field and I am grateful to him for drawing the Rowntree Report to our attention today.  I intend to concentrate upon a group of individuals who are spread across the whole age range of this report.  They are men, women and children who are suffering from what are categorised as illnesses with “ill-defined symptoms”.  Among them are CFS/ME, multiple chemical sensitivity, Gulf War illnesses, fibromyalgia, sheep dip poisoning and irritable bowel syndrome.  The severity of their symptoms fluctuates from day to day.

“I speak from the heart.  Noble Lords will know that I suffer from organophosphate poisoning.  I spent two years being socially excluded.  Fortunately, I have good friends and other helpful people.  I have been treated and have recovered.  I believe that I am now making a useful contribution to society.  There are hundreds of people in the world who could make a similar contribution and I ask the noble Baroness to listen.”  

In the November 1999 issue of The Syndrome Sentinel:

  • New Chronic Fatigue Study Fuels Debate on Name Change:  DePaul Professor Says Biological Name Taken More Seriously
  • Searching for the Gulf War Syndrome, or Dr. Haley Puts Away His Stethoscope, by Kirk Kirksey
  • News in the World of Myofascial Pain, by Devin Starlanyl
  • Fiscal Year 1999 President’s Budget Request for the National Institutes of Health, Statement by Dr. Stephen I. Katz, Director, NIAMS, NIH
  • Are Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Synonymous?, by Byron Hyde, MD
  • Social Security Update – Dateline: 9/22/99, by Lisa Lorden, About.com
  • Mycoplasmal Infections in Chronic Illnesses:  Fibromyalgia and Chronic Fatigue Syndromes, Gulf War Illness, HIV-AIDS and Rheumatoid Arthritis – Part III, by Garth Nicolson, et al
  • New Antibodies Discovered in Many Fibromyalgia Patients
  • Toronto Teen Wins ‘Silver’ in Science Olympics – Teenage Researcher Awarded Second Place Amongst 120 Finalists at Intel International Science and Engineering Fair
  • New Research to Help Care for Gulf War Veterans
  • Multi-Sensory Sensitivity or Muses Syndrome by Other Names from 1839 to Present, by Albert Donnay, MHS
  • One Patient’s Perspective on the CDC Conference with Patient Advocates, by Paula Carnes
  • The Doctor Is In, with Harvey Moldofsky, MD
  • Connie on Coping:  Practical solutions to your problems in everyday living
  • GAO Petition:  A Demand for Action, from Sudden Onset
  • Institute for Molecular Medicine Patient Order and Information Form, from Garth Nicolson
  • Recent Developments in CIND Disorders
  • Announcement of The UNIFY Coalition, a division of CSSA, Inc.

Following is an excerpt from ‘News in the World of Myofascial Pain’:

“We now have facts that cannot be disputed.  At last we have proof that myofascial pain caused by trigger points is a true disease.  We know what creates a trigger point, what it is, and many of the ways it can cause us pain and other symptoms.  We know what causes those taut bands that constrict our muscles, and we know why our muscles become so tight that they hurt.”

Following is an excerpt from ‘Searching for the Gulf War Syndrome, or Dr. Haley Puts Away His Stethoscope’:

“Haley believes his team has discovered not one, but three Gulf War syndromes.  Each is associated with the interaction of chemicals including low level nerve agents, anti-nerve gas pills issued by the military, and chemicals found in the flea collars worn by some personnel as protection against insects.  When Haley’s findings were published in the Journal of the American Medical Association, the Feds went ballistic.  Combat stress, they said, was still the culprit.  Although the government position has softened, the controversy still rages.”

In the August 1999 issue of The Syndrome Sentinel:

  • Mycoplasmal Infections in Chronic Illnesses:  Fibromyalgia and Chronic Fatigue Syndromes, Gulf War Illness, HIV-AIDS and Rheumatoid Arthritis – Part II, by Prof. Garth Nicolson, et al
  • Anthrax Vaccine Immunization Program, testimony given by Jane M. Orient, MD

  • Report on CFS Coordinating Committee Meeting, by Terry Hedrick, PhD

  • Controlled Perfume Study Reveals Adverse Irritant, Respiratory, and Neurologic Effects, by Cindy Duehring

  • The Conquering Pain Act of 1999

  • Mystery Illness Widespread, City Study Finds, by David Dauphinee, London Free Press Reporter

  • Developmental Disorders or Treatable Diseases?, International Conference to Study Common Disease Link for Autism, PDD, ADD, Chronic Fatigue Syndrome

  • Myofascial Release – “The Missing Link”, by John Barnes, PT

  • NIAMS Funds Multiple Research Grants in Fibromyalgia

  • Voices:  Writings from people with chronic syndromes

  • Editorial Commentary about the Article, 'Functional Somatic Syndromes', by John Herd
  • Questions for A 'Healthy' Spouse, by Ray
  • A New Name Is Coming! (Finally Saying Goodbye to 'The F Word'?), by Joan Livingston
  • A Message to My F'Mily, by Wanda Peacock
  • Some of My Favorite Tips, by Rebecca V. R.
  • We All Need A Little Humor:  Walking in Our Shoes

  • The Doctor Is In, with Daniel Clauw, MD, and Harvey Moldofsky, MD

  • Connie on Coping:  Practical solutions to your problems in everyday living

  • Book Review:

  • A commentary on “Osler’s Web”, by Jean Pollard, Office Manager and Research Assistant to David S. Bell, MD

The following is an excerpt from “Developmental Disorders or Treatable Diseases?”

“There is increasing evidence that a common disease link may be the cause of seemingly distinct medical problems like autism, PDD, attention deficit disorder and chronic fatigue syndrome, according to an international panel of scientists and child care experts.

“Therefore, traditional efforts to treat such problems solely as developmental disorders may be ineffective because these medical problems are neurological in nature and also should be treated as diseases, researchers say.

“ ‘Historically, autism, ADD, PDD and chronic fatigue syndrome have been viewed as separate developmental disorders that can only be modified by behavior modification and intensive educational efforts,” said Dr. Michael Goldberg of Tarzana CA.

' "However, the evidence is now strong that these conditions may indeed be related through a common disease process that must be addressed to maximize the potential of these children,” he said.'

In the May 1999 issue of The Syndrome Sentinel:

  • Scientific and Documentary Evidence Suggests That The Pentagon Modified the Anthrax Vaccine, James Madison Project Press Release
  • Using All The Tools – Part 2, by Harvey Zarren, MD, FACC
  • Odor Intolerance Linked with Sensitization, by J. Mercola, DO
  • A New Treatment Approach for Chronic Fatigue Syndrome, by Ellen Slawsby, PhD
  • Common Cause Foundation Lecture by Donald W. Scott, by Janet Weiner
  • Definition of An Illness, by David S. Bell, MD
  • Regarding Physician Education: Testimony to the NIH, NIAID, CFS Coordinating Committee, by Janet Horton
  • Mycoplasmal Infections in Chronic Illness: Fibromyalgia and Chronic Fatigue Syndromes, Gulf War Illness, HIV-AIDS and Rheumatoid Arthritis – Part I, by Prof. Garth L. Nicolson, et al
  • Administrative Law Judge in New Jersey Finds CFS Case the Equivalent of Multiple Sclerosis under the Social Security Regulations, by Barbara B. Comerford, Esq.
  • Managing Pain, from The Harvard Women's Health Letter
  • To Help Health Providers Prepare for Y2K, HCFA Establishes Toll-Free Phone Lines and Conferences, HHS
  • Press Release: Media Wars and Government Assistance, by Roger Burns
  • Voices: Writings from people with chronic syndromes
  • Acceptance Is Not Denial, by Susan Milstrey Wells
  • Name and Claim Your Disease, by Paula Carnes
  • Normal?, by Chip Davis
  • Understanding Is Key to Support, by Norm Lawson
  • Teen Faces Challenges of MCS, by Cyndi Hamilton-Weihert
  • We All Need A Little Humor: Special Olympics
  • The Doctor Is In, with Daniel J. Clauw, MD, and Harvey Moldofsky, MD
  • Connie on Coping: Practical solutions to problems in everyday living
  • Book Reviews:
  • A Delicate Balance: Living Successfully With Chronic Illness, by Susan Milstrey Wells
  • Freedom from Pain: The Breakthrough Program that Brings Relief to Chronic Sufferers, by Norman J. Marcus, MD

The following is an excerpt from "Mycoplasmal Infections in Chronic Illnesses: Fibromyalgia and Chronic Fatigue Syndromes, Gulf War Illness, HIV-AIDS and Rheumatoid Arthritis – Part I", by Prof. Garth Nicolson, et al

"Invasive bacterial infections are associated with several acute and chronic illnesses, including: Aerodigestive Diseases such as Asthma, Pneumonia, Inflammatory Bowel Disease; Rheumatoid Diseases, such as Rheumatoid Arthritis (RA); Immunosuppression Diseases such as HIV-AIDS; Genitourinary Infections and Chronic Fatigue Illnesses such as Chronic Fatigue Syndrome (CFS), "Fibromyalgia Syndrome (FMS) and Gulf War Illnesses (GWI).

"There is growing awareness that many chronic illnesses may have an infectious nature that is either responsible (causative) for the illness, a cofactor for the illness or appears as an opportunistic infection(s) that is responsible for aggravating patient morbidity.[1] There are several reasons for this notion, including the non-random or clustered appearance of an illness, often in immediate family members, the course of the illness and its response to therapies based on infectious agents. Since chronic illnesses are often complex, involving multiple, non-specific, overlapping signs and symptoms, they are difficult to diagnose and even more difficult to treat. Most chronic illnesses do not have effective therapies, and patients rarely recover from their conditions,[2] causing in some areas of the world catastrophic economic problems."

In the February 1999 issue of The Syndrome Sentinel:

  • Research in CFS and Fibromyalgia: Why Do We Move So Slowly?, by Daniel Clauw, MD
  • Killing Us Softly – Part 3, by Dr. Mark Donohoe
  • AACFS Medical Conference: Brief Report, by Roger Burns
  • Fibromyalgia and The Workplace, by Warren Nielson, PhD, CPsych
  • Using All The Tools – Part 1, by Harvey Zarren, MD, FACC
  • Congressman Bernie Sanders Speaks to Congress on MCS
  • The Mind-Body Connection, by Jacob Teitelbaum, MD
  • Folder from The Danish Fibromyalgia Assn. Aimed at Spouses/Significant Others of PWFMS
  • Moving Forward with Fibromyalgia: Steps to Emotional Recovery and Coping, by Bonnie Voth, B.SW., C.SW.
  • Voices:  Writings from People with Chronic Syndromes
  • Kit's Limerick, by Kit Murdoch
  • I Am Learning...., by Elaine
  • Fish Meditation, by Devin Starlanyl
  • Self-Care: Treat Yourself Kindly, by Camilla Lawson
  • Essay: CFS and Cognitive Dysfunction, by Luke Bohan
  • We All Need A Little Humor
  • The Doctor Is In, with Harvey Moldofsky, MD
  • Connie on Coping: Practical solutions to problems in everyday living
  • Book Reviews:
  • Getting the Best from Your Doctor (An Insider's Guide to the Health Care You Deserve), by Alan N. Schwartz, MD, Richard A. H. Jimenez, MD, Tracy A. Myers, MHA, and Andrew K. Solomon, MD
  • RELAX: You May Have A Few Minutes Left, by Loretta LaRoche
  • The Fibromyalgia Survivor Course, by Mark J. Pellegrino, MD, and Christine Marschinke, RN, BSN

The following is an excerpt from "Using All The Tools", by Harvey Zarren, MD:

"As 1999 begins, medical care in the United States is in major disarray.  Financial forces driven by bottom line economics are in conflict with practitioners who will try to uphold human values of caring and compassion.  (The practitioners, being mostly inheritors of American culture [major myth:  make as much money as you can as quickly as you can so you can retire and buy stuff] are concerned with income, but most still care about their patients.)  The conflict between money and other values has rapidly produced a large number of irritated, uncomfortable, abraded practitioners with little in the way of outlets for their discomfort.  The practitioner-patient relationship can only erode more as the conflict continues.

"Currently, the allopathic medical community is having to face up to the continued outlay of significant money spent by patients on complementary medical practices.  At the moment, some refer to the phenomenon as "just a fad!"  Again, the American culture's great myth that "only bottom line economics matters" and its attendant myth that "there is only so much money and power and either you have it or I have it" are at work.  Such myths result in a belief that money and power can only go to allopathic practitioners or to complementary practitioners. Here is fertile ground for conflict and each side bashing the other.

"Traditional Western physicians (allopathic physicians) receive a rigorous training in medical schools patterned after a report written in 1910 by Abraham Flexner.  The report, commissioned by the Carnegie Foundation, is all about science and clinical and laboratory practices. There is nothing in the report about the wholeness of people."

In the November 1998 issue of The Syndrome Sentinel:

  • CDC Accused of Lying to Congress About CFS Research, by David Pace, AP Writer
  • What Everyone on Your Health Care Team Should Know – Part II, by Devin Starlanyl
  • Majority of Americans Use Alternative Therapies, by J. Mercola, DO 
  • Killing Us Softly – Part 2, by Dr. Mark Donohoe
  • Dysregulation Spectrum Syndrome:  A Unified New Concept for Many Common Maladies, by Muhammad B. Yunus, MD
  • Trauma and Healing, by Deborah Bier, MEd
  • What is Brainfog and How Significant Is It?, by Marilyn J. Kerr, RN
  • Some CFS Patients Benefit from Low-Dose Steroid, But Side Effects Too Risky, News Release
  • Chemicals That Compromise Life: A Call to Action, by Davis Baltz
  • Fibromyalgia and Social Security Disability, by David F. Bander, Esq.
  • Excerpts from Press Conference on Gulf War Illnesses, with Senators Arlen Specter, Jay Rockefeller and Paul Wellstone
  • Voices:  Writings from People With Chronic Syndromes
  • Fibro Friendship and the Sisters, by Suzanne Ferriter
  • A Case for Early Intervention, by Carol H.
  • Fight Back?, by Bethany Wilson
  • To My Husband, After One Year, by Robyn Pollman
  • We All Need A Little Humor
  • The Doctor Is In, with Charles W. Lapp, MD, and Harvey Moldofsky, MD
  • Connie on Coping: Practical solutions to problems in everyday living
  • Book Reviews:
  • Chemical Sensitivity: A Guide to Coping, by Matthews
  • The Fibromyalgia Advocate: Getting the Support You Need to Cope with Fibromyalgia and Myofascial Pain Syndrome, by Devin J. Starlanyl

The following is an excerpt from "CDC Accused of Lying to Congress About Chronic Fatigue Research:

"I believe the CDC has intentionally misrepresented monies allocated to CFS research and I cannot ethically support this," said Dr. William C. Reeves, a branch chief in the CDC's National Center for Infectious Diseases.

"CDC spokesman Tom Skinner said the agency is aware of Reeves' allegations and is taking them 'very seriously'.  He said the CDC has asked the inspector general of the Department of Health and Human Services to investigate, but he declined to address Reeves' specific charges.

"Reeves filed his statement under the federal Whistle Blower Act, which guarantees job protection for federal employees who report fraud, waste or abuse.  He is still working at the CDC, but is not granting interview requests."

In the August 1998 issue of The Syndrome Sentinel:

  • What Everyone on Your Health Care Team Should Know – Part I, by Devin Starlanyl
  • Bankruptcies of The Heart: Secondary Losses from Disabling Chronic Pain, by Marcia E. Bedard, PhD
  • Georgetown University Medical Center Seeks GWS Research Study Participants
  • Coping With Chronic Pain, by Robert L. Miller, PhD
  • Killing Us Softly – Part I, by Dr. Mark Donohoe
  • Deep Breathing Can Improve Fitness, by J. Mercola, DO
  • Chinese Medicine: Try These Glasses, by William Mueller, Lic.Ac.
  • Researchers Find Physical Proof of Fibro Pain, Press Release
  • Volunteer Grassroots Effort Launched on Behalf of PWCs, by Sheryl A. Jefferies
  • Teitelbaum Announces Completion of Placebo Controlled Study, by Marilyn Kerr, RN
  • Homeopathy and Essences, by Deborah Bier, MEd
  • Myofascial Trigger Point Therapy: FAQs, by Leigh Cook
  • Quality of Life, News Release
  • Israeli GWS Study May Have Implications for CFS and FMS, News Release
  • Voices:  Writings from People With Chronic Syndromes
  • Jamie's Story, by James Oppenheimer
  • New York, NY, by Carolynne Butters
  • Penpal Network, from Rebecca Simpson
  • A Reply to the Question 'What is the problem?', by Scott Hancock
  • An Open Letter to Those Without CFIDS, by Bek Oberin
  • Kitten Therapy, by Suzanne Ferriter
  • Stephanie's Story, by Stephanie
  • The Doctor Is In, with Daniel Clauw, MD, and Harvey Moldofsky, MD
  • Connie on Coping: Practical solutions to problems in everyday living
  • Videos: 
  • Dr. Sharon Clark's Stretch Video
  • Dr. Sharon Clark's New Video on Muscle Toning and Strengthening
  • Chronic Myofascial Pain Syndrome: The Trigger Point Guide, with Devin Starlanyl
  • Fibromyalgia and You, featuring patients and leading FMS experts

The following is an excerpt from "Bankruptcies of The Heart: Secondary Losses from Disabling Chronic Pain", by Marcia Bedard, PhD

"For more than 30 years now, the majority of psychologists have been shifting their emphasis toward treating chronic pain as a perceptual and psychological phenomenon rather than a true medical problem.  One of the major theorists in this field was Wilmer Fordyce, who developed an influential social-learning model of chronic pain based on behavioralism about 20 years ago.  Fordyce believed that pain is behavior designed to protect oneself or solicit aid and that pain increases, i.e., this behavior is strengthened, when followed by desirable consequences.  Unlike many of his predecessors who believed chronic pain was purely psychogenic in origin, Fordyce believed that all pain began as acute pain from actual tissue injury and under normal conditions, the injury healed in a certain period of time.  However, Fordyce argued that if pain persisted beyond the normal healing time in an environment with secondary gains, the pain would become chronic. 

"My thesis is this:  not only is psychogenic chronic pain rare, but more importantly, few people disabled by chronic pain regularly receive secondary gains.  My evidence for this assertion comes from several sources: literature cited in the paper I presented at the 1998 Annual Meeting of the Society for Disability Studies (SDS); information about personal experiences sent to me by hundreds of chronic pain patients, as well as physicians and psychologists who specialize in treating chronic pain via numerous Internet lists I subscribe to and websites I monitor; and finally, my own experience over the past six years as a chronic pain patient." 

In the May 1998 issue of The Syndrome Sentinel:

  • The Concept of Pain, by Wesley Shankland II, DDS, MS, PhD
  • Highlights of The Sydney Conference: A YPWC's Report, by Anelie Walsh
  • The Relationship Between Fibromyalgia and The Multiple Chemical Sensitivity Syndrome, Palo Alto VA Health Care System
  • Testimony of Daniel J. Clauw, MD, before The Subcommittee on Human Resources of the Committee on Government Reform and Oversight Regarding the Current and Projected Federal Research Programs on Gulf War Illnesses
  • Adjustment to Chronic Illness and Essences, by Deborah Bier, MEd
  • The CFS/FM Twin Registry Call for Twins with CFS and/or FM
  • Open Proposal for Consensus Statement on 3-Way Screening of CFS, FMS & MCS, by Albert Donnay, Dr. Ann McCampbell and Dr. Grace Ziem
  • Low Blood Volume Study Is Published, by Roger Burns
  • New Research Shows Hyaluronic Acid Ten Times Higher in FMS Patients, by John Lowe, MA, DC
  • Voices: Writings from People With Chronic Syndromes
  • A Prayer Poem for Neill, by Carol H.
  • Dealing with Anger, by Lois Randall
  • Don't Ever Stop Dreaming Your Dreams
  • Annie or The Tail of a Fellow Sufferer, Installment 2, by Enid Segalmann
  • A Husband's Viewpoint, by Nick
  • I Have Fibromyalgia Syndrome, by Ann LeBlanc
  • The Doctor Is In, with Harvey Moldofsky, MD
  • Connie on Coping: Practical solutions to problems in everyday living
  • Book Reviews:
  • Dictionary of Medical Terms, by Mikel A. Rothenberg, MD, and Charles F. Chapman
  • When Movement Hurts: A Self-Help Manual for Treating Trigger Points, by Barbara Headley, MS, PT
  • From Fatigued to Fantastic: A Manual for Moving Beyond Chronic Fatigue and Fibromyalgia, by Jacob Teitelbaum, MD

The following is an excerpt from "The Concept of Pain", by Wesley Shankland, II, DDS, MS, PhD:

"Whether one suffers with fibromyalgia, TMJ problems, or any other chronic pain disorder,  why do people seem to respond so differently to pain?  In other words, why is the perception of pain so diverse and at times, very unpredictable?  These questions have been debated by scientists, theologians and physicians for centuries.  Only in the last few decades have some of the answers to these mysteries been revealed.

"But before we can continue to discuss issues of pain perception, we must come to common ground concerning a few concepts.  For example, what's the definition of pain?  Certainly, hitting your thumb with a hammer causes pain; but what about toothache pain in a tooth with no nerve or leg pain years after its amputation?  Also, are pain and suffering the same?  The concept of pain is fascinating; it’s intrigued mankind since the beginning of recorded history.  Pain commands humans to perform behavior that otherwise would be avoided.  Pain may also be an ally of the sufferer;   an excuse to avoid unpleasant tasks or situations when necessary.  In addition, pain is a private experience:  we can only measure the behavior of those in pain and not the pain itself.

"Like pain, suffering is a private experience and yet, it’s a universally distressing sensation.  Both human beings and animals have the ability to perceive pain.  Animals can scream, howl, or run away from a painful stimulus.  In humans, however, pain is far more complex.  Each person may react differently to the same stimulus of pain.  But why?"

In the February 1998 issue of The Syndrome Sentinel:

  • CSSA Receives First Grant

  • Trigger points and tender points:  One and the same?  Does injection treatment help?, by Joanne Borg-Stein, MD and Joel Stein, MD

  • Chronic Pain Fact Sheet, by Marcia Bedard, PhD

  • Medical Intuition: Questions & Answers, by Sue Hanks Singleton

  • Johns Hopkins Seeks Subjects for Study

  • Canaries In A Coal Mine, by Kevin Gregg, DC

  • Co-Cure’s First Anniversary, by Donna Tabish and Ray Colliton

  • Physicians with Chronic Fatigue Syndrome (CFS), Chronic Fatigue, or Fibromyalgia Registry

  • Vibrational/Flower Essences, by Deborah Bier, MEd

  • NIH Panel Issues Consensus Statement on Acupuncture, News Release

  • Democrats Unite in Call for Federal Legislation to Make Consumer Bill of Rights Real for All Americans, News Release

  • Novel Treatment "Knocks Out" Persistent Pain, NIH Release

  • University Of Florida Researchers Attempt To Find Diagnostic Tool For Fibromyalgia, News Release

  • Voices:

  • The Wholeness of Life, by Dennis Argall
  • Knowing Your Own Enemies Within, by 'Jane Doe'
  • "Fibro'rhyme'algia", by Shauna Leigh Taylor
  • Surviving CFIDS Until There's A Cure, by Charles Stone
  • Ignorance and MCS, by Barbara Camp, MA
  • Why CFIDS Advocacy?, by Mel Karasik
  • Pain Psychology – The Family Picture, by Lois Randall
  • Laughter - A Treatment Modality and A Hell of a Lot of Fun, by Betsy Jacobson
  • Connie on Coping: Practical solutions to problems in everyday living
  • Book Reviews:
  • Lost Voices: Women, Chronic Pain and Abuse, by Nellie A. Radomsky, MD, PhD
  • The Fibromyalgia Survivor, by Mark Pellegrino, MD
  • 8 Weeks to Optimum Health, by Andrew Weil, MD
  • Your Personal Guide to Living Well with Fibromyalgia, the Arthritis Foundation
  • Living with Fibromyalgia & Chronic Pain, by Gwyneth A. Graham and Camilla Lawson, RPN

The following is an excerpt from "Canaries In A Coal Mine", by Kevin Gregg, DC

"Here is an overview of some perspectives I will be going into in more detail later.  Have you ever considered that those of you experiencing FMS, CFS, MCS and GWS symptoms might simply be canaries down the collective mine shaft?  What if, like those canaries, you were simply the early warning system for this culture.  What if your experiences were exposing mounting health risks for everyone? You are, I suspect, at the far end of a continuum that all of us are on to varying degrees.  Placement on this continuum depends only on the degree a person is stressed, starved and poisoned by their life and environment. 

"A complex interplay of three factors – stress, toxins and nutrient depletions – I believe are the most clinically significant common denominators in these syndromes.  The interdependence of these co-factors makes the resulting conditions very difficult to treat using reductionistic medical models and methods.  A review of the medical literature seems to confirm this perceptual blind spot.  Numerous articles elucidate the effects of one of these factors but few or none seem to address the synergy of all three."

In the November 1997 Issue of The Syndrome Sentinel:

  • Foreword by Miryam Ehrlich Williamson
  • Help with Prescription Drugs
  • Difficult Choices: Making Treatment Decisions About Complex Issues, by Deborah Bier, MEd 

  • Basic Guidelines for Selecting An Alternative Practitioner, by Chris Ford, Certified Herbalist

  • Overlapping Disorders: CFS, FMS, MCS and GWS, by Albert Donnay, MHS

  • The Fibromyalgia Syndrome: It's Not All In Your Head, by Thomas W. Shinder, MD

  • Chronic Fatigue Syndrome and Fibromyalgia Through the Eyes of a Wholistic Healer, by Aaron Singleton, LMT/CHt

  • Fibromyalgia: More Than Just A Musculoskeletal Disease, by Daniel J. Clauw, MD

  • Knowledge is Power, by Devin Starlanyl

  • Acupuncture: Ancient Medicine for Modern Ills, by William Mueller, Lic.Ac.

  • Fibromyalgia Chat with John Lowe, MA, DC

  • Weather Conditions Affect Pain, by Robert N. Jamison, PhD

  • The Need for Correct Posture in the Treatment of Pain, by Debra L. Byer, DC, and Linda S. Squires, DC

  • VA Links Gulf War to MCS, CFS & FM

  • Research Summary: Stealth Virus Application to Chronic Fatigue Syndrome

  • Annie or The Tail of a Family Member

  • The Doctor Is In, with Daniel J. Clauw, MD

  • We All Need a Little Humor, by Suzanne Ferriter

  • Connie on Coping: Practical solutions to problems in everyday living

  • Book Reviews:

  • Fibromyalgia & Chronic Myofascial Pain Syndrome: A Survival Manual, by Devin J. Starlanyl MD, and Mary Ellen Copeland, MS
  • Laugh at Your Muscles: A Light Look at Fibromyalgia, by Mark Pellegrino, MD
  • TMJ: Its Many Faces, by Wesley E. Shankland, II, DDS, MS
  • The Chronic Pain Control Workbook: A Step by Step Guide for Coping with and Overcoming Pain, by Ellen Mohr Catalano, MA


The following is an excerpt from "Chronic Fatigue Syndrome and Fibromyalgia Through The Eyes of A Wholistic Healer", by Aaron Singleton, LMT/CHt:

"It is important to remember that our emotional traumas, even as a child, may produce illnesses of varying degrees later in life.  Anger, fear, shame, loss and the like may produce anxiety attacks, asthma, CFS/ Fibromyalgia and a host of other illnesses and breathing disorders.

"Presently, I have not encountered a client who has been diagnosed with CFS/Fibromyalgia that did not have emotional trauma at the root of the disease.  I have found that with all conditions, physical and emotional illnesses, it is necessary to know as much as possible about the total history of the illness or condition.  Beyond the traditional ways of diagnosing, i.e., medical records, observations and examinations, the following have been used to access old memories: regression hypnotherapy, visualization, inner child work, intuitive arts and body-oriented psychotherapy.  Hypnotherapy, color and sound therapy, bodywork, breath work, and energy therapies are but a few of the modalities used in releasing traumas."

The Chronic Syndrome Support Association, Inc.
801 Riverside Drive
Lumberton, NC 28358-4625

| Home | Newsletter | Pamphlet | News and Events | Patient Resources |
| Bedroom Talk | Books and Videos | Letters | Articles of Interest | Links |

© Copyright 1999-2002.  The Chronic Syndrome Support Association, Inc.
All Rights Reserved.  Health Information Disclaimer

Most recent revision Saturday, August 24, 2002