The Northern Virginia
CFS/FMS
Support Group

Selections from our EMAILS and NEWSLETTERS

April 2001

Introduction

Welcome to CFSupport's Group News! After reading this page, visit Group News Directory, Home, or About Us for more information.  To receive all of our emails and newsletters, please join our email list and Yahoo! Group at http://groups.yahoo.com/group/CFSupport. 

As a member of our CFSupport Yahoo group, you would be able to browse and search our archives, use our Calendar of local and national groups, download files, use our rideshare database as well as receive current updates of interest regarding CFS/M.E., fibromyalgia, and related illnesses. We keep the number of emails to less than one per day on average.

Arthritis Foundation's Drug Guide

Arthritis Today, the consumer magazine published by the Arthritis Foundation, is offering a free guide to drugs used for arthritis and related diseases, including fibromyalgia. The "2001 Drug Guide" lists brand names, dosages, special instructions, side effects, warnings and cautions for more than 250 drugs. For a free copy ($3 postage in 2006), call 1-800-568-4045 . Last year's is also available online at: http://www.arthritis.org/conditions/drugguide/index.asp. See also the Fibromyalgia section: http://www.arthritis.org/conditions/DrugGuide/about_fibromyalgia.asp

Links & phone updated 06/06.  Some articles preserved from earlier years:
http://www.arthritis.org/conditions/drugguide/articles.asp

Transcripts From AACFS 2001 Seattle Conference

ImmuneSupport.com's library has online the AACFS Seattle Conference transcripts from the various chats they sponsored with speakers. The chats included Kim Kenney, Dr. Paul Levine, Dr. Charles Lapp, Dharam Ablashi, DVM, and others. For more about chatting with Immune Support, see  http://www.immunesupport.com/Chat/

More: Hillenbrand & "Seabiscuit"

We are so very proud of member Laura Hillenbrand, author of the New York Times #1 best seller, Seabiscuit: An American Legend. Not only is her book incredible, but Laura has made a point of using her many interviews as opportunities to educate the public about her many years with CFS. Horsing fans - and book lovers - are now probably two of the most well-informed groups in the US about our disorder!

In our emails, we told you about the tremendous feature article on Laura in the March 9, 2001, Washington Post. It was called "Against the Odds - Laura Hillenbrand Surmounted Illness To Cross the Finish Line With 'Seabiscuit' ", and can be read online at:
http://washingtonpost.com/wp-dyn/articles/A43937-2001Mar8.html

Another great article about member Laura Hillenbrand's new book and her struggle with CFS was in the news on March 13, 2001 - this time in the New York Daily News. The article is
GOT THE HORSE RIGHT HERE 
'SEABISCUIT' AUTHOR SHOWS CHAMP'S HEART
Celia McGee DAILY NEWS Feature Writer

It begins: "She barely leaves the house because she suffers from chronic fatigue syndrome. The disease struck in 1987, when [Laura Hillenbrand], daughter of a D.C. lobbyist and a former Washington Post journalist, was an undergrad at Kenyon College. Some 800,000 have been diagnosed with CFS, for which there is no known cure. There's a 3% chance of recovery during the first three years. Hillenbrand though, has ..."
Article available for purchase in archives at http://www.nydailynews.com/

Laura also has a website on her book at http://www.seabiscuitonline.com/ . You can add your complements to the many already placed on her guestbook there.

"Seabiscuit" has also been included in our support group bookstore at: http://geocities.datacellar.net/cfsnova/bookstore03.html

On Friday March 23, 2001, NBC Nightly News with Tom Brokaw had a wonderful story on Laura's battle with CFS.

On April 3, 2001, the Lexington Herald-Leader had a wonderful, compassionate article on Laura's battle with CFS. The full article was online at: http://www.kentuckyconnect.com/heraldleader/news/040301/kyhoofs/hoofsdocs/03seabiscuit.htm

Scott Simon talked with Laura on NPR Weekend Edition on April 7, 2001. Laura discusses her book, Seabiscuit: An American Legend, as well as her struggle with CFS. To hear the inspiring 20-minute story online, go to: http://www.npr.org/ramfiles/wesat/20010407.wesat.13.ram

On April 17, 2001, Laura continued her public discussion of these topics in a wonderful 50-minute conversation on WAMU's national broadcast of The Diane Rehm Show. To listen to this show in Real Player, go to: http://www.wamu.org/audio/dr/01/04/r2010417-5281.ram

Thanks so much to our group member Laura for continuing to educate the public about CFS, and for keeping us informed of her current interviews and articles!

Self-Help for CFS/FMS

From Kris Hopkins of the CFIDS Associations's CFIDS Support Network:

William Collinge, PhD, who pioneered the first mind/body medicine program for CFS, has made his book Recovering from Chronic Fatigue Syndrome: A Guide to Self-Empowerment available free online. 'Since it was first published a great deal of progress has been made in understanding the realities of the illness,' Dr. Collinge reports. 'However, CFS remains a complex chronic illness with no medical cure. Self-empowerment remains the most viable pathway for coping and promoting the recovery process.' The online edition includes an appendix describing Collinge's study published in Subtle Energies and Energy Medicine that found patients using mind/body medicine tripled their odds of improvement over 12 months. The free book is posted at www.healthy.net/collinge/cfs.htm .

Management of the Patient with Syncope

A very interesting article on syncope (including that caused by orthostatic hypotension) is now online at the Medscape site. The full article was at: http://www.medscape.com/34891.rhtml?srcmp=ms-031601

Medscape is free, but does require readers to sign in with a password. Here is an excerpt from the section on orthostatic hypotension:

Orthostatic hypotension (ie, at least a 20 mmHg fall in systolic pressure, a 10 mmHg fall in diastolic pressure, or symptoms) in the absence of volume depletion is most often due to an autonomic neuropathy or the administration of antidepressant drugs. An important component of therapy for orthostatic hypotension is avoidance of both volume depletion and the administration of medications (such as sympathetic blockers and antidepressants) that can contribute to this problem. A major benefit may also be achieved from tensing the legs by crossing them while actively standing on both legs. In one report of patients with autonomic neuropathy, this procedure raised the cardiac output by 16 percent and the systemic blood pressure by 13 percent. It can therefore minimize postural symptoms.

Other physical measures that may be helpful include:

• Arising slowly in stages from supine to seated to standing
• Performing dorsiflexion of the feet or handgrip exercise before standing
• Wearing Jobst stockings, up to and including the thighs, to minimize venous pooling.

Various drug therapies can be tried if these modalities are ineffective. The most common treatment is induction of volume expansion with a combination of fludrocortisone (an oral mineralocorticoid given in a dose of 0.1 to 1.0 mg/day) and a high salt diet. Patients must be carefully monitored for the development of edema or worsening seated or supine hypertension. Long term therapy with this drug, even when administered in low doses, is poorly tolerated in patients over the age of 65. Furthermore, incremental doses may be needed over time because of escape from the sodium retaining effects of the mineralocorticoid.

Other drugs that can be tried if fludrocortisone does not work or is not well tolerated include:

• Alpha-1-adrenergic agonists, such as midodrine (2.5 to 10 mg TID) or phenylephrine (60 mg every 6 to 12 hours)
• Nonsteroidal antiinflammatory drugs
• Caffeine
• Fluoxetine.

Youth Network For OI/CFS

For the young and the ill and their parents.....

Mother of a young girl with dysautonomia and member of the No VA MVPS/Dysautonomia group, Debbie Dominelli, has taken on a new project to help young people with orthostatic intolerance dysautonomias, (NMH, POTS, etc.) no matter whether they come from CFS, mitral valve prolapse syndrome, or whatever. The new Youth Network, part of the National Dysautonomia Research Foundation (NDRF) aims to put together something specifically for the kids. Everything was so geared towards adults...

Says Debbie, "Our first project is a Newsletter for the Youth Network...we are thinking of names...so far 'The Young and the Dizzy' is top on the list. We also have just assigned an Education Specialist who is putting together a Guideline for Schools, like the CFIDS Foundation has, with a physician to oversee it. The Ed. Specialist was a Special Ed teacher before her kid got sick and she had to deal with hell and the school systems, too. "

Get on the E-mail list for the Youth Network: (Updated 06/06)
New Name: Dysautonomia Youth Network of America
http://www.dynakids.org 
info@dynakids.org

CFS and ICD-9 and ICD-10 Classification Categories

The following gives a good description of the diagnosis codes for CFS. It is still confusing, because the codes are confusing. Awareness of the codes and their history helps you when your doctor's office uses the wrong codes, accidentally or not (e.g. the 300 codes could jeopardize long term disability if policies limit mental diagoses to 2 years) and it helps when you advocate and educate others about cfs.

"A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases", Prepared by the Centers for Disease Control and Prevention, National Center for Health Statistics, Office of the Center Director, Data Policy and Standards, March 2001 http://www.co-cure.org/ICD_code.pdf (link updated 06/06).

Bottom Line:

ICD-9
The International Classification of Diseases, ninth revision (ICD-9), was published by the World
Health Organization (WHO) in 1975.   The term “chronic fatigue syndrome” did not have a specific code in ICD-9 nor did the term appear in the alphabetic index of ICD-9.    The only entry in the alphabetic index of the ICD-9 was “Syndrome, fatigue” and referenced code 300.5, Neurasthenia, a condition classified in Chapter V, Mental disorders. The term “benign myalgic encephalomyelitis” appears in the alphabetic index and references code 323.9, Encephalitis of unspecified cause.   The code 323.9 did not include reference to postviral syndrome.  The term “postviral syndrome” was classified to code 780.7, Malaise and fatigue, in Chapter 16, Symptoms, signs and ill-defined conditions. 

ICD-9-CM  
ICD-9-Clinical Modification (CM) has been used in the United States since 1979 and has an annual update process that has been in place since 1985. In 1990, a recommendation to
create a specific code for chronic fatigue syndrome was presented. At that time, there was no
consensus about the etiology of the syndrome, which is needed to accurately classify a condition
in the ICD.  A modification to the alphabetic index was made to direct users of the classification to code 780.7, Malaise and fatigue.  This is the same code used to identify cases of postviral syndrome.  This change became effective October 1, 1991. In 1998, subcategory 780.7 was expanded to include new five-digit codes. The new codes created included code 780.71, Chronic fatigue syndrome.  The placement of this condition in this category was consistent with the WHO version of ICD-9 and with its placement within ICD-9-CM. 

ICD-10
WHO published ICD-10 in 1992 and included many modifications, among them relocation of
some diagnoses to different chapters within the classification.  WHO created a new category
G93, Other disorders of brain, in Chapter VI, Diseases of the Nervous System, and created a new
code G93.3, Postviral fatigue syndrome, a condition which was previously in the symptom
chapter of ICD-9.  WHO also moved benign myalgic encephalomyelitis to the new code G93.3. 
The alphabetic index contains other terms, such as chronic fatigue syndrome, that WHO
considers synonymous or clinically similar.

ICD-10-CM
In keeping with the placement in the ICD-10, chronic fatigue syndrome (and its synonymous
terms) will remain at G93.3 in ICD-10-CM.

Social Security E-NEWS

The Social Security website allows you to subscribe to an email newsletter with timely updates on several issues to choose from, including disability and medicare. It's at:
http://www.ssa.gov/enews/

Clinical Trial Info

Interested in participating in a clinical trial? We have a page full of information - and details on 9 current Washington, DC area trials for CFS, FMS, multiple chemical sensitivities and Gulf War illness. It's on our website's Clinical Trials page at: http://geocities.datacellar.net/cfsnova/trials.html .

More: CFS Film "I Remember Me"

From Immunesupport.com: Kim Snyder is a CFS patient and a filmmaker. Her documentary, "I Remember Me" was recently screened at the Santa Barbara International Film Festival, and has won several film festival awards. In this interview, Kim talks about the incredible impact her film has had on audiences everywhere and how the film got made, despite the challenges of living with CFS. To read more, go to: http://www.immunesupport.com/library/showarticle.cfm/id/3002.

Kim attended a screening of her film May 4, 2001 in Baltimore, part of the Maryland Film Festival. Also attending was Dr. Peter Rowe, a leading researcher and pediatrician, whose tilt table studies and care of CFS patients lead to major contributions to medical understanding of CFS.

Kim has a website about the film, at http://www.irememberme.com . She expects the film to be available on videocasette soon. (See our book/video pages for VHS and DVD.)

Dr. Bell's "Faces of CFS"

For those who missed our group order still interested in Dr. Bell's new book, Faces of CFS, the our link to Amazon for it is http://www.amazon.com/exec/obidos/ASIN/0970770200/cfsupport. 

Update 06/06: Now availble free as an E-book: http://www.davidsbell.com/DSBFaces.htm

Musings On Illness-Comparison Syndrome
by Toni Marshall

While nearly all the attention to Laura Hillenbrand's accomplishment as best-selling author with CFIDS has been well received, there have been some familiar grumblings, wondering how a CFIDS person can have accomplished so much, raising uncomfortable doubts and comparisons. Here are my thoughts on the subject (nine paragraphs, so, printing this to read while resting/reclining may leave you energy, later, for more important things):

I celebrate the positive attention Laura Hillenbrand, author of Seabiscuit, An American Legend, is bringing to CFS as a seriously debilitating, physical condition contracted by one very talented writer, who, with profound accommodation to her condition, determination, devoted support, and electronic tools wrote a best selling book.

All three interviews I heard/read/saw were remarkable in pointing out Laura still has CFS, that it is seriously debilitating, and entirely physical, but she wrote a book anyway. I found the Post article most interesting because of the profound accommodations Laura made for her condition. It's not like she could have written a book working anywhere but at home where her writing room was set up with fridge, food, place to rest, phone, fax, computer, etc., or, without understanding the accommodations she must make in order to write a book. Maybe it's the American Way to believe we can do anything, unless stricken with ill health, or other difficulties, that we could do anything if everything were "just right" with us and the world.

Maybe this is why some are distrustful of the attention Laura brings to CFS about her struggle with it while writing her book. This need not be an opportunity for beating ourselves up for not accomplishing more.

We don't have to feel badly about ourselves because of Laura's accomplishment. How many of us could write a book and sell it, or play Olympics soccer before CFS? Laura, and Michelle Akers, the Olympic soccer player, are news because they were more talented than average before they became so debilitated by CFS. They were never normal, less so now they have so complex a condition.

It hurts deeply to be questioned, as I've been recently, about how "sick" I am because I can drive, shop, etc. CFS is so complex, debilitating and hard to understand; I have limited control over its effects, even while doing my best to get treatment, including changing many lifestyle habits. Comparing one's illness experience with others' abilities and accomplishments perpetrates this hurt on those who suffer similarly to ourselves. I beg restraint as there is plenty of hurt coming from those who do not suffer similarly.

I celebrate the fact that life isn't over now that I have CFS. I can still drive (although I avoid it), run meetings, copy information of general interest for others with CFS, pay my own bills, feed myself, write this email, take calls from other PWC's wanting support and information, mail info to new PWC's, oh, and toilet myself, just not necessarily all on the same day, nor in the same week, or month. I could do a lot more if I had help: doing dishes, cooking, organizing, filing, taxes, laundry. Oh well; that's life, thank goodness.

I have the gift of gab and am good at keeping the support group meetings running smoothly (most of the time), and, lucky me, I didn't lose my gifts when I became debilitated with CFS. I have time to examine my performance, evaluate and improve it, unavailable to me when I was working. Everyone has gifts they haven't lost, even though we may feel our wings have been clipped. I celebrate my own and everyone's abilities and gifts. I welcome support of this concept.

Thank you, Laura, for your contribution to literature and positively impacting discussion of CFS.

-Toni, cfsupport-owner@yahoogroups.com (410) 647-7578

Krispin's Komments on Nutrition And Health

Krispin Sullivan's website is at www.krispin.com. It has so much information on magnesium, nutrition and more I hope you can check it out. The website also has a potassium section and a vitamin D section. I heard Krispin Sullivan talk this weekend about vitamin D at the Weston A Price seminar and was so truly inspired. My healing path just took another dramatic turn for the wonderful. -Elly (703) 968-9818   cfsupport-owner@yahoogroups.com

CFIDS Association Panel On Neuroendocrine Abnormalities

Neuroendocrine Abnormalities in CFS Deserve More Comprehensive Study

CFIDS Association, CDC Scientific Panel Issues Consensus Statement On Research Issues

WASHINGTON, April 23 /PRNewswire Interactive News Release/ -- Research on the neuroendocrine system, which involves interactions between the brain and glands that secrete hormones, could help explain many of the symptoms of chronic fatigue syndrome (CFS). This was one conclusion reached by a panel of experts that convened in March for the second in a series of scientific symposia on CFS. The symposium was sponsored by The Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America and the U.S. Centers for Disease Control and Prevention (CDC).

Several studies have suggested a neuroendocrine component to CFS, but the exact role these abnormalities play is still a mystery. For example, studies have found that some CFS patients have low levels of cortisol, a hormone produced by the hypothalamic-pituitary-adrenal (HPA) axis that plays a key role in sleep and fatigue, but more recent research has not confirmed those findings.

``CFS is a multisystem disorder, and needs a multidisciplinary approach,'' said Dimitris Papanicolaou, MD, assistant professor of medicine, Emory University, and panel chair. ``Researchers from diverse areas of study need to collaborate to answer questions about neuroendocrine involvement in CFS and drive treatment strategies to improve patients' daily lives.''

Following a day of presentations by experts from around the world, an independent panel composed of researchers and practitioners in the fields of biostatistics, endocrinology, epidemiology, immunology, internal medicine, neurology, psychiatry, and sleep disorders developed a consensus statement on the key issues surrounding the role of the neuroendocrine system in CFS.

The panel agreed that:

• The nature of HPA function in CFS needs to be clarified. There is evidence
   of HPA axis dysfunction in CFS patients, but testing has
   yielded inconsistent results. This may be due in part to the relapsing-remitting
   nature of the illness and to differences in research study
   designs. The panel suggested that studies comparing CFS patients with and
   without HPA axis dysfunction should be conducted. 

• Cytokine abnormalities, neuroendocrine abnormalities, orthostatic
   intolerance, and CFS may be interconnected. Cytokines are chemical
   messengers that stimulate the HPA axis when the body is under stress or
   experiencing an infection. A number of them, including tumor necrosis
   factor alpha (TNF-alpha) and interleukin-6 (IL-6), have been implicated
   in CFS. The panel noted these findings are intriguing in view of
   research connecting CFS and a family of blood pressure-related disorders
   called orthostatic intolerance (OI). There is evidence that excessive
   secretion of inflammatory cytokines such as TNF-alpha may induce OI,
   although more studies delineating the links between these abnormalities
   are needed.

•  CFS is not synonymous with depression. The panel agreed that CFS should
   be differentiated from major depression. Individuals with major
   depression have an activated HPA axis, but HPA axis studies in CFS
   patients have been contradictory. Studies have shown that
   corticotrophin releasing hormone (CRH) levels in the cerebrospinal fluid
   are normal or even low in CFS patients, while they may be increased in
   depressed individuals. As a group, persons with CFS also demonstrate a
   diminished cortisol response compared to persons with depression. The
   panel suggested that these data may point toward a potential biological
   marker for persons with CFS compared to persons with depression.

• No link has been established between CFS and stress. Past research has
   suggested that stressors such as viral infections, traumatic life
   events, physical abuse, and automobile accidents may cause CFS symptoms.
   However, the panel agreed that there is not enough evidence to date to
   establish a link between specific stressors and neuroendocrine
   abnormalities in CFS and related disorders.

• Sleep abnormalities may contribute to CFS symptoms. Sleep disturbances
   have been shown to cause increased production of IL-6 and TNF-alpha, and
   some researchers believe that they contribute significantly to excessive
   daytime sleepiness in CFS. However, the panel pointed out that studies
   of the association between HPA axis alteration, cytokine secretion
   patterns, and sleep abnormalities have not yet been conducted in CFS
   patients.

• More research is needed to define the neuroendocrine aspects of CFS.
   The panel outlined future research needs, including studies to: evaluate
   stressors previously hypothesized to cause CFS; test treatment
   strategies, including drugs to affect HPA axis activity; and identify
   neuroendocrine activity in larger populations of persons with CFS,
   including those that fit specific subtypes of the disease. Panelists
   also suggested ways to overcome potential research barriers, such as
   conducting long-term studies to capture the fluctuations in symptom
   severity most CFS patients experience and developing human experimental
   models that temporarily recreate the symptoms of CFS to identify
   potential biological markers for the illness.

The CFS assessment symposia series is designed to examine the role of the neurological, endocrine, circulatory, and immune systems in CFS. The symposia gather experts to evaluate research findings, identify the most promising next steps for research, define research and funding priorities, and create research collaboration teams.

The CFIDS Association of America, which developed the symposia series, is the nation's leading organization working to conquer this illness. Since 1987, the Association has invested nearly $12 million in education, public policy, and research programs in its efforts to bring an end to the suffering caused by CFS.

The CDC protects people's health and safety by preventing and controlling diseases and injuries, enhances health decisions by providing credible information on critical health issues, and promotes healthy living through strong partnerships with local, national, and international organizations. The agency conducts a CFS research program under the auspices of the National Center for Infectious Diseases.

CFS, also called chronic fatigue and immune dysfunction syndrome (CFIDS), is a debilitating and complex disorder characterized by profound fatigue, pain, and cognitive problems that are not improved by bed rest and may be worsened by physical or mental activity. For more information, call 1-704-365-2343 (updated 06/06) or visit www.cfids.org.

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