The Massachusetts CFIDS/FM Association
"UPDATE"

Winter 2003 Issue (44 pages)
Mass. CFIDS/FM Association's Quarterly Publication

Features

Poetry Winners

Nonfiction Winners

Fiction Winners

 

  Departments

President's Message

Founder's Message

 

Organizational Information

 

 

FEATURES


 

 

Unraveling the Mystery of Neuroendocrine Dysfunction in FM/CFIDS

by Lucy Dechene, Ph.D. & Susan Kearns, R.N.

On December 7, 2002 Gail Adler MD, PhD, presented a lecture to members of Mass. CFIDS/FM Association on “Unraveling the Mystery of Neuroendocrin e Dysfunction in FM/CFIDS.”  Dr. Adler is a nationally known endocrinologist and researcher at the Harvard Medical School and the Brigham and Women's Hospital in Boston.  She has spent her career focusing on disorders of the endocrine system, particularly focusing on neuroendocrine dysfunction in FM.  Dr. Adler is the principle researcher on a number of NIH grants including: "Regulation of Adrenal Function in Fibromyalgia" 

Dr. Adler began by thanking all of the patients who participated in her studies.  She noted that there are significant overlaps between CFIDS, FM and syndromes defined by “environmental exposures,” as she termed it, such as Gulf War Syndrome and Multiple Chemical Sensitivity.  She noted that most of her work had been with fibromyalgia, but she would refer to what was known about CFIDS throughout the talk as well.

Why Neuroendocrinologists Study FM/CFIDS
Dr. Adler noted that many of the symptoms of CFIDS and FM overlap.  She listed prominent symptoms as:

Dr. Adler explained that since these are similar to symptoms in some neuroendocrine diseases, researchers such as herself became interested in studying the role of the neuroendocrine system in FM and CFIDS.

Fibromyalgia Pain

Dr. Adler explained that pain threshold is the measure of the amount of pressure applied to a patient that first becomes painful for an individual.  Pain tolerance is the measure of the pressure at the point at which the doctor must stop the administration of pressure because the individual perceives it as intolerable.  She explained that FM patients have both lower pain thresholds and pain tolerances than normal controls.

Overall in fibromyalgia, it is the case that structural, electrophysiological and biochemical studies of muscle, skin and tendons have tended to be normal.  She explained that the current hypothesis of the cause of FM is: “Alterations in brain function result in changes in pain processing and may also affect neuroendocrine and autonomic nervous system functioning.”  The focus of the rest of her talk was on the neuroendocrine system (especially the HPA-axis) and autonomic nervous system functions in FM.

(To be continued: Check in next month for the full article.)

 

 

WRITING CONTEST WINNERS

by Sharon Wachsler & Lorraine McDonough

Thanks very much to everyone who participated in our first-ever writing contest!  We were pleased with the number of entries - over 70 submissions!  Even more so, we were touched by the heartfelt, enthusiastic words of our members and contributors who shared their thoughts, feelings, and creative outpourings with us.  It takes courage to send in your work to a group of strangers.

We were also honored to have a distinguished panel of volunteer judges.  They include published poets, playwrights, essayists, short-story writers, and authors.  Biographies and information on the judges appears below.  We encourage people with CFIDS and FM to make use of these contacts to continue to learn and grow in their writing and artistic endeavors; it is a gift to the individual with CFIDS/FM and our community to have eloquent, impassioned people telling our own stories.

Thank you to everyone who sent us their work.  In some cases it was very difficult to choose winners; there were many close calls that could have gone another way.  The competition in the poetry category was particularly fierce, so those whose names - and work - appear in this issue should feel extremely proud of themselves. 

THE WINNERS

 Poetry

First Place: "American Grandparents Visiting Rockingham, Nova Scotia, 1975" by Mary Davies.

Second Place: "Denouement" by Lucy Fuchs

Third Place: "To Live" by Elizabeth Cass. 

 

Fiction

First Place: excerpt from Older Girls, by Mary Davies.

Second Place: "Dig Me Beach" by Chad Couto.

Third Place: "Defective" by Susan Dion.

 

Nonfiction

First Place: "Taking to the Water" by Elizabeth Cass.

Second Place: "Warm and Fuzzy Medicine" by Dianne Bourgeous.

Third Place: "Sidestepping FM at the Shore" by Petra Breen.

 

THE JUDGES
 

Rachel Barenblat is executive director of Inkberry, a literary arts center in the Berkshires (www.inkberry.org); she's also author of two poetry chapbooks, most recently What Stays (Bennington Writing Seminars Alumni Chapbook Series 2002).  Learn more at www.rachelbarenblat.com.

Cat Brenn-Bear is a performance poet, playwright, director, and an American Sign Language interpreter.  Her stage work has been seen in Boston, Worcester, New York, Philadelphia, and Washington, DC.  The industrial film she directed and co-wrote for Respond, Inc., "No More Silence," won the jury prize in the 1997 Somerville Film Festival.  She resides in Greenfield, Mass. where she talks out loud to her cats.

Teresa Esser is the author of The Venture Cafe: Secrets, Strategies, and Stories from America's High-Tech Entrepreneurs (www.theventurecafe.com).  She is presently working on a book about how intelligent women make the decision to become mothers.  If any readers have strong opinions about the process of becoming a mother, please contact Teresa at: teresaesser@yahoo.com.  She lives with her husband, Pehr Anderson, and their soon-to-be-born child in Cambridge, Mass.

Ginger Lazarus is pursuing a master's degree at Boston University's Boston Playwrights' Theater, where her full-length play, Nonprofit, was performed in May 2002.  Her plays have been produced in Massachusetts, New Hampshire, and New York and anthologized by Baker's Plays in The Boston Theater Marathon of Ten-Minute Plays, Vol. II.  She has worked for the Huntington Theatre Company, Coast to Coast Theater Summer Shakespeare Festival, and Theatre Cooperative.  Her writing has appeared in Sojourner, Boston Magazine, and The Worcester Review.

Jodi is a lesbian with CFIDS and MCS.  She has been a writer since before she was old enough to hold a pen, and an editor for almost as long.  She loves community organizing, interspecies telepathic communication, Vipassana meditation, and gardening.  She would rather laugh than whine, but it's a very close contest.

Peggy Munson was chosen for Best American Poetry 2003, and has been awarded poetry fellowships at the MacDowell Colony, Ragdale, and Hedgebrook.  She is the editor of Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome.  Peggy's poetry manuscript Pathogenesis, which deals with CFIDS, has been a finalist for several prizes.  She has also published numerous short stories and was a winner of the San Francisco Bay Guardian Fiction Prize.  Visit her at: www.angelfire.com/ri/strickenbk or www.peggymunson.com.

Debora Seidman is a poet and playwright who has had MCS and CFIDS for more years than she cares to count.  Her plays, In My Mother's Kitchen, The Lilac Minyan, and Berlin have been performed at the Lower East Side Tenement Museum Theater, Brooklyn Arts Exchange, the NACUL Center, and the National Yiddish Book Exchange.  Debora teaches classes called Writing the Body Home.  For information, contact Debora at DSeidman@aol.com  or 413-367-0127.

Sharon Wachsler is a poet, cartoonist, writer, and teacher with CFIDS and MCS.  Her work has appeared in five anthologies, including Restricted Access and Yentl's Revenge and in numerous newspapers and magazines, including Ragged Edge, Bitch, and Moxie.  Poetry awards include a Peregrine Prize and a Pushcart nomination.  Read Sharon's humor column at www.abilitymaine.org and her cartoons at www.sickhumorpostcards.org.  To learn about Sharon's online writing courses e-mail sickhumor2@aol.com.

 

 

Ciguatera Toxin a Cause of CFIDS?

by Lucy Dechene, Ph.D.

Recently there has been a great deal of publicity about research done by Dr. Yoshitsugi Hokama, Professor in the Department of Pathology at the John A. Burns School of Medicine at the University of Hawaii at Manoa, which was sponsored by the National CFIDS Foundation.  In a press release by the Foundation, it was claimed (1), “The research, for the first time, discovered ciguatoxin, a potent neurotoxin, in the blood of Chronic Fatigue Syndrome patients.”  What is ciguatera poisoning and is this really the result that Dr. Hokama found?

The press release stated, “Ciguatoxins are potent, heat stabile, non-protein, lipophilic sodium channel activator toxins and are recognized as some of the most potent biological toxins known.  They produce dramatic neurological manifestations, such as peripheral sensory or motor symptoms (including paresthesias, pain, burning, tingling, numbness), central symptoms such as headache, autonomic dysfunction and also affect multiple body systems (gastrointestinal, immune, hepatic, cardiovascular) and the muscles.”  The press release went on to say, “Many CFS patients in the study had higher levels of the toxin than the patients with cancer, hepatitis or acute ciguatera poisoning.  Quantitative assay results range from 1:5, the lowest toxin level, to 1:160, the highest toxin level.  All CFS samples gave titres of at least 1:20, with the majority of titres from 1:40 to 1:160.”

Is it believable that the typical CFIDS patient actually has ciguatera poisoning?  Well, no.  There may be some misidentified CFIDS cases that are ciguatera cases in Hawaii, Australia, Florida and other places where ocean fish such as barracuda that are found off coral reefs are eaten regularly, but such fish are not in a typical person’s diet.  The only way one can get ciguatera poisoning is by ingesting the toxin, and the toxin is only occasionally found in such fish, which are the top of the food chain.  There is no other source.  The typical human being will never be exposed to ciguatoxin.

But did Dr. Hokama actually claim that all the CFIDS patients in his study (as well as the cancer and other patients) actually had ciguatoxin in the blood stream?  No, again.  The title of his presentation at the International Symposium on Toxins and Natural Products in Okinawa, Japan makes that clear.  His talk was, “Acute phase lipids in sera of various diseases: chronic fatigue syndrome, ciguatera, hepatitis, and various cancer with antigenic epitope resembling ciguatoxin as determined with Mab-CTX."  The key words are “acute phase lipids” and “antigenic epitope resembling ciguatoxin.”  Apparently Dr. Hokama developed the Membrane Immunobead Assay test for patient sera, using a specific monoclonal antibody for ciguatera toxin (Mab-CTX).  >From the abstract of his talk, it is clear that what Dr. Hokama found was that his antibody bound to a lipid substance or substances in the blood.  Antibodies cross-react and can bind to multiple substances.  Anyone with allergies has unfortunately often discovered that fact.  So the substance or substances (they might differ in different people) to which the antibody bound might not be ciguatoxin.  In fact it is highly likely that the substance wasn’t ciguatoxin.  He suggests it is some type of lipid released by the liver.

So what was it and what is the significance of the findings?  Both are unknown at this time.  Certainly Dr. Hokama’s research is very interesting.  Are the substances the antibody bound to in sera the same in each subject?  Are the lipid substance or substances bound also toxins or containing toxins?  I hope he does more specific research to find out.  Ciguatoxin has anticholinesterase activity.  So it interferes with the breakdown of acetylcholine.   Perhaps the mystery substances bound by the antibody do as well, which would explain some symptoms in some CFIDS patients.

So should CFIDS patients rush out and get Dr. Hokama’s testing for ciguatoxin that the National CFIDS Foundation has advertised?  No, since no useful purpose would be served.  Even if the test was precisely specific only for ciguatoxin, no treatment for ciguatera poisoning is known.  Further, it is quite clear that this antibody test is definitely not specific for ciguatoxin.  We don’t know what the other substances are that the antibody binds to, nor if they are even toxins.  So save your money and wait for further research.  I wish I could say that Dr. Hokama’s findings are a major breakthrough in understanding CFIDS, cancer, hepatitis and cardiovascular disease, but at this stage they clearly aren’t.  But they are interesting.  I hope Dr. Hokama looks more closely at the chemical structures to which his antibody will bind and researches the significance of these lipid substances he’s already found with that property.

1. “Neurotoxin Discovered in Chronic Fatigue Syndrome,” National CFIDS Foundation, published on CO-CURE, November 17, 2002.

 

 

Standing Room Only for That Takes Ovaries! Reading

by Rita Sanderson

A lot has happened to Rivka Solomon, PWC author/ editor and Mass. CFIDS & FM member, since the announcement of her new book, That Takes Ovaries! Bold Females and Their Brazen Acts, in the Winter 2002 Update.  This book is a collection of 64 “courageous and outrageous” real-life short stories about gutsy deeds of women of all ages and cultural backgrounds who stood up for their rights and themselves.  Since the book hit bookstores this past spring, there has been a wave of publicity, readings and open-mike events around the country surrounding this book.  Leading members of the media have been covering the book and events, such as NY Times, Chicago Tribune, Seattle Times, San Francisco Chronicle, Glamour Magazine, Jane Magazine, and WBZ Radio, just to name a few.  The book also made it on the Boston Globe's Bestseller List this summer.

My daughter, Tamara, and I attended a jam-packed book reading coordinated by Rivka herself, that was held on Thursday, January 30, 2003 at Barnes & Noble at Boston University.  A sampling of the stories were read by local actors and actual contributors, and then the floor was opened up to audience members who shared their own experiences of bravery, determination and accomplishment.  I had read this book over the summer and passed it on to my daughter while she was at college.  Tamara started to tell her friends about it because she felt that by reading what other women had gone through would help to inspire them to stand up for themselves.  By going to this reading, we really got into the spirit of the book and enjoyed putting a face to some of the contributors to the book.  Even Tamara was moved enough to share an experience that she had while studying abroad.

What this book has done is create a national grassroots movement for empowerment.  In less than one year, there have been dozens of public open-mike events around the country where women and even men will come to share stories about themselves, or remarkable women in their lives and their brazen acts.  Horizons Theater, a Washington, D.C. theater group, will perform a four-week run of their play adaptation based on Rivka's book this March.  Rivka is working on her own play adaptation of That Takes Ovaries! that will include her life experiences with CFIDS.

The book is available in the Women’s Studies section at Barnes & Noble and other bookstores (ISBN 0-609-80659-9).  If you would like to host your own open-mike, details are available at www.thattakesovaries.org.  This is truly an outstanding accomplishment by Rivka, as a PWC.  I would like to close with Rivka’s own words from the Acknowledgements section of the book … “Anyone who lives in spite of CFIDS's life-altering restrictions has BIG ovaries.” 

 

DEPARTMENTS

 

 

Association Announcements

A Message to Our Loyal Supporters – The Future of Mass CFIDS/FM

by Diane Turner, President

In our Fall Update I shared with each of you the current financial crisis that the Mass CFIDS/FM Association has continued to face and, as your President, I feel it is my duty to update you with the most recent developments and what this means to you, our members and families.

With such uncertainty in the world, as well as a very weakened US economy, it is no surprise that charitable contributions have taken such a downturn.  In speaking with other non-profit organizations, many have had to change their strategies and revise plans in order to endure this challenging environment.  Everyone is trying new belt-tightening efforts, while maintaining the core services they provide.  Mass CFIDS/FM is no different.  We are in the same position and your Board of Directors has had to make some challenging decisions.

As you are aware, Mass CFIDS/FM has faced a severe financial crisis over the last couple years and it has resulted in some very difficult and necessary changes to our organization.  As the oldest and best organization in the country dedicated to helping those who suffer with these illnesses, we have always been proud of what our association was able to offer our membership.  In order for our Association to survive, we have undergone a transition that has resulted in the elimination and suspension of some of our services.  The most obvious change will be that of the elimination of the quarterly news publication, The Update.  In the past, we have been able to publish the largest and finest quarterly news publication loaded with up to date information on treatment, research, coping, advocacy and much more.  Unfortunately, we are no longer able to continue to provide this valuable publication.  This decision was not made lightly and let me assure you that it was the most difficult decision the Board of Directors had to make.  Therefore, I must inform you that this will be the last issue of The Update.  In addition, it is also necessary that we eliminate other services and scale back to the organization’s most vital elements.  This is primarily due to a decrease in paid memberships and too many unsuccessful attempts to recruit new members, coupled with a significant decline in volunteers who are the heart of the organization.  Your continued commitment and support has been greatly appreciated and has helped delay this difficult decision. 

Each of us has shared the benefit of The Update over the past nineteen years.  We will all miss it tremendously.  The featured articles (including those wonderful medical lectures!) and medical research and treatment information have been an invaluable resource for information regarding our illnesses.  We owe a world of thanks to Bonnie Gorman, Founder and Director of the organization, who has devoted the last 20 years and more than 50,000 hours to growing this organization, developing numerous programs and services, as well as writing, editing and producing The Update.  Without Bonnie's commitment and hard work, The Mass CFIDS/FM Association would not have been able to continue these valuable services for as long as we have.  We wish Bonnie better health as she transitions away from these roles.  Her can-do attitude and smiling face has made our involvement in the association pleasurable and rewarding. 

Let us not forget Dr. Lucy Dechene’s dedicated efforts over the years as Treasurer and Medical Editor, a key force in publishing The Update.  Lucy has made significant contributions to the reliability of The Update’s medical information.  This kind of commitment and effort put forth by Bonnie and Lucy, as well as a number of other longstanding members of the organization, to make The Update and many of our valuable programs possible has been remarkable.  They have given far more than 100% of themselves for a prolonged period and now it is time for their health and well-being to take priority.  Thanks a million and best wishes to each of you!

On a positive note, we are pleased that we are able to continue focusing on the following most essential functions.  These include our long standing information line, our invaluable support group network, disability guidance, physician referral, and maintenance of a passive website.

If we would try to replace our dedicated founder, we would realistically have to hire several full-time healthy workers and to accomplish this, Mass CFIDS/FM would have to generate three times as much income as it presently does.  Considering our physical and financial limitations, we have made plans to set aside enough reserves to sustain the organization for the remainder of this year at this level.  We will continue to need donations in order to carry on with the remaining functions.

At this point, we would like to thank everyone who has helped us in the past and those who will consider helping us in the future.  Mass CFIDS/FM Association has helped thousands of people over the years and our goal is to continue to assist all those who suffer into the foreseeable future.

Our organization is still in need of donations in order to continue these services and programs.  Please mail the form below with your tax deductible check to MASS CFIDS/FM ASSOCIATION, PO BOX 690305, QUINCY, MA 02269-0305.  Please join us to fight to keep Mass CFIDS/FM alive!  Send your donation in today!

Thank you for your continued support and wishing you all good health!

Diane

 =================================================================

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Please make checks payable to:

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 Thank you so much for your generosity!  All contributions are tax-deductible.

 

 

FOUNDER'S MESSAGE

by Bonnie Gorman RN, Founder

It is with sorrow that I have to write this letter.  Due to auto accident injuries, I have been much more severely impaired, and unfortunately I'm not getting better.  As a result, I had to step down from the Director's role.  This will necessitate changes in the organization that Diane will discuss in her message.

In looking back, I can't believe that it has been 20 years since I started this journey --my how time flies!  I have dedicated those years to educating, supporting and empowering people with CFIDS and FM.  I've committed over 50,000 hours to building and growing this organization.  They were hours very well spent.  This commitment has been a labor of love-- always challenging and never boring.  I believe we are all the better for it.  I leave with a sense of pride in all we have accomplished over these 20+ years.  I can only hope that others will step forward and take up the mantel to help sustain our great organization.

When we started the first support group in 1983, I had no idea what this organization would grow into.  These illnesses did not even have names, let alone any treatment options then.  Now Mass. CFIDS/FM Association is the oldest patient support organization in the country.  We expanded into a support group network in 1984, and started our education programs, something very dear to my heart.  Ironically, we were still an informal organization in search of a name for our illness.  It was then called the 'disease of a thousand names:' post-viral fatigue syndrome, chronic mono, neurasthenia, Icelandic disease, myalgic encephalitis, fibrositis etc. 

In January of 1985, the publication of the, then, seminal article in JAMA finally gave our illness a new name (at least for the eighties)-- Chronic Epstein Barr Virus (CEBV).  That moved us to formalize our statewide organization and name it the Massachusetts CEBV Association.  We also started our highly-acclaimed newsletter, The Update, in 1985-- continuing our mission of providing quality medical information to our members, the medical community and the general public.  We then added our information line and lending library, followed by our physician referral and disability guidance.  In addition we developed innumerable special programs over the years to better serve our members.

Our advocacy and public awareness campaigns followed at the state, regional and national levels.   We were founding members of the first national CFIDS advocacy campaign, CACTUS.  Our organization has pioneered many critical issues through our advocacy campaigns over the last 20 years --giving voice to those with CFIDS & FM.  Our support group network has expanded to the largest network in the country – over 30 support groups throughout New England.  We have reached out to many thousands of people with CFIDS and FM in New England and around the country. 

I want to thank all of the wonderful people, present and past, who have made this the great organization that it is, and that I know it will continue to be.  They are too numerous to mention, but I would like to especially thank our President, Diane Turner.  She has made invaluable contributions to our national advocacy efforts, public awareness campaigns and fundraising.  Her leadership, spirit and determination as President the last two years have inspired us, and allowed us to stay the course over these challenging times.

Thank you all so much for your continuing support over the years.  You will be in my heart forever!

Warmest wishes for health and happiness in the years ahead,

Bonnie Gorman RN
Founder

 

 

 

AACFS Clinical Conference Report

by Dr. Rosamund Vallings, MB BS, ME specialist, Auckland, New Zealand

I attended the AACFS 6th International Conference on CFS, FM and related syndromes, held at Chantilly, Virginia from 1/31-2/2/03.  The first day was a clinical conference for physicians working in the field of CFS, followed by a day and a half of research presentations. 

The clinical conference opened with an introduction and overview by Charles Lapp MD and Leonard Jason PhD.  Lapp ran through the history of CFS, which was described by Hammurabi as early as 2000 BC.  Jason reviewed the problem of CFS and its definition, citing that 50 million Americans suffer from fatigue, of which 14 million have prolonged fatigue and 8 million have a diagnosis of chronic fatigue (not CFS).  CFS fitting the research case definition probably affects 800,000 in the USA. 

Epidemiologically, a major study showed that there is a predominance of females with CFS, and almost double the number of Latinos compared to American whites or Afro-Americans.  There was no history of abuse in the majority of cases and in 50% of the cases there was a family history of auto-immune disease.  Those with CFS were found to be more functionally impaired than those with Type 2 diabetes, congestive heart failure, MS or end-stage renal disease.  Many do however show improvement over 2 years, though the majority do remain significantly impaired.  Various physical and psychological scales were discussed to measure outcomes and co-morbidity, including wearing a device to produce actigraphs showing daily activity.  Those with CFS particularly showed reduced activity and non-restorative sleep.

He then reviewed physical examination in CFS pointing out particularly that lymph glands and skin may be very tender.  Laboratory findings in CFS were usually essentially normal, though there may be abnormal immune complexes, atypical lymphocytes, lowered IgG, small increase in alkaline phosphatase, elevations in cholesterol and small increases in ANA and thyroid antibodies.  MRI studies of the brain have demonstrated high intensity T2 weighted lesions, but these do occur in other diseases and are non-diagnostic.  SPECT scans to demonstrate function show decreases in cerebral blood flow with exercise, often worse 24 hours later.

There was acute onset in 85% cases, and in 72% the main precipitating factor was infection, with a small number of cases following trauma, surgery, childbirth, allergic reaction and emotional trauma.  He reviewed possible causes of CFS, including various infectious agents, immunological defects leading to T cell activation, increases in cytokines and decreased NK cell function, HPA axis dysfunction with lowered cortisol levels and orthostatic intolerance.  92% of patients with CFS can become syncopal with orthostatic intolerance, and, as well as having a drop in BP, symptoms may come on after a delay of 15 minutes.

The differential diagnosis covered a very wide range of diseases, and the audience participated in discussion of the characteristic diagnostic features of other conditions such as:
-- Evidence of a tick bite and presence of arthritis in Lyme disease
-- Optic neuritis and ocular nerve disorders in MS
-- Butterfly rash and arthritis in SLE
-- Genital infection followed by arthritis (particularly in heel and lower spine) in Reiter's disease
-- Skin discoloration and immediate light headedness on tilt in Addison's disease
-- SSA antibodies in Sjorgren's syndrome
-- Hypercalcemia with polyuria in parathyroidism
-- High ferritin levels in hemochromatosis
-- Gluten sensitivity and low ferritin in coeliac disease
-- Raised SGOT in hepatitis etc

Lab tests for all of the above should be performed according to the symptoms and history.  Further investigation should be pursued if the ESR is elevated as that is not characteristic of CFS, when it tends to be low.

Fibromyalgia

A diagnosis of fibromyalgia (FM) is made if there is widespread pain of at least 3 months' duration coupled with tenderness in 11 of the 18 classical tender point.  Gulf War Illness (GWI) tends to overlap with CFS but there are important differences, such as gastrointestinal, respiratory and skin symptoms, which are uncommon in CFS.  The 1999 case definition for Multiple Chemical Sensitivity (MCS) was presented.  The main symptoms are cognitive impairment, mood disorder, disequilibrium, respiratory problems, headaches, nausea and fatigue.  Symptoms are reproducible with repeated exposure and tend to improve when incitants are removed.  There is considerable overlap between MCS and CFS with 30% of those with MCS fulfilling the criteria for CFS.

Management Approach

Lapp then presented his stepwise approach to the management of CFS.  These steps include Patient Education; Activity - balancing light activity with rest and increasing the level of activity slowly over time; and Nutrition - avoiding malnutrition, minimizing sugar, caffeine, alcohol and tobacco, keeping fats low if suffering from diarrhea and avoiding dairy products and or/gluten for 5 days to see if there is any improvement.

Specific Symptom Therapy:
Sleep Management - Initially try melatonin, phototherapy or OTC medication, then clonazepam 0.5mg and/or doxepin 10mg (clonazepam is habituating but not addictive).  Trazadone 50mg can give improvement in levels 3 - 4 sleep.  Hypnotics may be needed by some patients, and flexeril can be considered in combination with any of the above.

Central Activation - reduced levels of dopamine and serotonin can lead to sleep disturbance, low pain threshold, loss of motivation and depressed mood.  SSRIs (seratonin reuptake inhibitors) and SNIs (seratonin/ norepinephrine inhibitors eg. venlafaxine/ effexor) can be useful as can dopamine agonists such as wellbutrin.

Autonomic Nervous System dysfunction - treatment aimed at volume expansion with 2 quarts (2.5L) fluid per day with 1-2 teaspoons of salt daily.  Some will benefit from fluodrocortisone 0.1-0.3 mg daily.  Vasoconstrictors such as ephedrine and midodrine can be useful.

Pain Control - presented by Ben Natelson MD:

Stage 1:
--NSAIDS - celebrex 200mg 2x/day - often not much help.
--Plaquenil - raises pain threshold, but has side effects
--Tricyclics - amitriptyline 20-50mg, particularly if there is a sleep problem
--Flexeril, other muscle relaxants
--EffexorXR 75 -225 mg daily if depressed

Stage 2: Anti-epileptics drugs:
--Neurontin 100mg daily, increasing to 300mg, can possibly go up to 3 gm daily
--Lamotrigine 25mg daily initially rising to 100mg 3x/day
--Trileptal 150mg 2x/day, rising to 600mg 2x/day
--Topamax - good if there is a weight problem

Stage 3:
--Plaquenil - 6 month trial
--Tizanidine - 2-4mg 2x/day (very expensive)
--Mexelitine - 150 - 300mg daily (a local anesthetic)
--Lidocaine patches maybe useful for focal pain.
--Tramadol - 50mg daily.

Stage 4:
--Opiates - morphine up to 30mg 2x/day
--Methadone (cheap but has long half life)
--Prednisone - does not work in FM, but hydrocortisone 25mg daily is often helpful (keep in mind side-effects). A four-week trial is worthwhile.

Treatment for Fatigue-- drugs with stimulant effects were reviewed: dexamphetamine (dexadrine), eldepryl (selegiline), cylert (pemoline), methylphenindate (ritalin), modafinil (provigil) and a new drug used for ADD called amoxetine (atomoxetine).

Disability Evaluation of those with CFS was then discussed by Dr. Lapp.  He pointed out that in the US, primary care physicians are faced with the task of advocating for 800,000 patients with CFS and more than 2 million with FM.  Up to 50% of these people are unable to work.  Evaluation needs to be done by a physician familiar with CFS.  Standardized psychometric and functional testing instruments need to be used.  For presentation to Social Security in the US, CFS patients must fit the 1994 Fukuda definition, with one or more specific medical signs clinically evaluated over at least 6 consecutive months (eg swollen or tender nodes, tender points etc) - and certain specific lab findings are acceptable. (eg NMH by tilt table testing, abnormal cranial MRI).  Documentation of cognitive and emotional difficulties is also important.  Physicians world wide should be aware of the requirements to keep good notes on relevant issues for these patients.

 

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