November/December 1999

Greensboro CFIDS/FM/MCS Support Group meeting 2nd Monday each Month

MAIN MEETING DIRECTIONS  ... Moses Cone’s Adult Health Education Center (AHEC) is located at the hospital.  Turn off Wendover Ave. in Greensboro onto Church St., then left onto Northwood, then right at the next light, and the Parking Deck will be on the right.  The AHEC entrance is located beside the parking deck at the top of the circular drive.

Because both CFIDS/ME (Chronic Fatigue Immune Dysfunction Syndrome or Myalgic Encephalomyelopathy), FMS (Fibromyalgia), MCS (Multiple Chemical Sensitivities), GWI (Gulf War Illness), Porphyria and Post-Polio Syndrome have overlapping symptoms, Brainstorms addresses them all as of concern to each of us.             

 

Please, no perfumes, colognes, etc. at any meeting, as many members are very sensitive to odors and chemicals which worsen their symptoms.  Washing clothing in perfume-free detergents is also helpful to patients, and a sensitivity trigger often overlooked.  Thank you very much for your consideration.---

Trinity Group First Thursday of month at 1:00 pm, Trinity Methodist Church, Trinity 

Rockingham County Group Third Thursday of month at 7:00 pm, Morehead Hospital, Eden 

Burlington Group First Monday of month, Faith UMC:  Myra Jackson (336)229-7818

Lexington Group. . . . . . . Contact Person:  Donna Hall, RN (336)224-0156

---

CFIDS CHUCKLES

My daughter calls our chocolate Cocker Spaniel, Sydney, a “CFS” dog.  I inherited caregiver status for Sydney (the dog) when Christy (the daughter) went off to college.  I wonder her nickname is because  a)  she sleeps at the drop of the hat  b) wakes when called even if she doesn’t want to  always wants to eat d)  does not like perfumes or strange smells, sniffs, rubs her nose and backs off when she encounters them e) and has panic attacks and barking when life-threatening things happen like meeting the Star Wars stuffed toy 3CPO (talks like a robot.)  Or perhaps it is because Sydney a) has no social life except barking at strange dogs that walk by and noises in the apartment overhead, or b) likes to watch other dogs on TV or c) does not like to be left totally alone, unless so tired she is unconscious.  The TV must be playing, or her rubber newspaper nearby d) Maybe because she loves “treats;” ie. big dog bones instead of chocolate, like me e) or because she often gets that vacant, “Where am I?” stare f) or has bad hair days most days.   Probably it is because she, like me, talks to her animal friends, and they sometimes are her best companions!   OR perhaps it is because  a) she always loves unconditionally - well, most of the time!  b) doesn’t keep a record of wrongs - she can’t remember them  c) is lovable and faithful  d) and only yelps if you step on her foot or a weather front comes through.    Oh, and I forgot!  Christy tried to get Sydney the dog a boyfriend, and it didn’t work.  So now she is starting on me.  And I won’t cooperate either ...  Both of us are too tired, and too unique a species to find a match!  So if you hear me howling one night, I am just having a temporary aberration of the “lonelies,” but as soon as I eat and sleep, talk to my e-mail CFS friends, get drug around like a faithful stuffed animal by my kids, and hug Sydney and my support group friends, it will go away.

“I am seeing my limits in the rear view mirror.”                - Melinda Vadas

YOU KNOW YOU HAVE A CHRONIC ILLNESS WHEN...

You’re the youngest participant in the water aerobics class ... and you’re 50.

You’re so excited that you’ve found your keys, you’ve forgotten where your car is.

You buy ibuprofen by the case.

People constantly tell you, “But you look so good!” and you feel so bad.

The pharmacist recognizes your voice when you call in refills.

You spend more time filling out medical paperwork than you do your Christmas list.

You buy stock in the company that makes the drug you are taking.

When your friends tell you, “That’s okay ... I’ll drive today.  I don’t feel like stopping at green lights and going  through the red lights!”  You are cautioned by your doctor, not the police, to slow down.

You explain to your grandfather how to apply for his Social Security.

·        Excerpts from

http://www.restministries.org/laughter.htm

NOTES & quotes

When things go wrong, don’t go wrong with them.

It is easier to light a candle than to curse the darkness If you curse the darknesss, the darkness will remain But the glow of that one small candle Will bring light ...

The difference between religion and spirituality is that religion is for people who are afraid of hell...Spirituality is for people who have been there.

IN our WORLD

FLOYD AND PFIESTERIA

We are awaiting upcoming results on NC coastal inland waterways such as the Neuse River, Pamlico Sound, etc. by the devastation of Hurricane Floyd.  We are afraid the worst has only just began in terms of the possibility for a pfiesteria outbreak.   Prior to Floyd, these organisms were propagated in part by the hog waste in NC waters after hog lagoon overflow, and human waste which depletes the oxygen.  Huge fish kills and human effects resulted.  Dr. JoAnn Burkholder of NC State has been the subject of a national best seller, “And the Waters Turned to Blood” for her work with pfiesteria.  This organism has been causing a CFS-like illness that she finally discovered when she and one of her co-researchers became ill after working with it.  It is making sick menhaden and persons such as fishermen, vacationers who are in the affected coastal estuaries and river waters at the time of an outbreak.  The airborne illness manifests with neurocognitive affects, mood changes, memory loss, severe fatigue, sometimes sores, etc.  Good reading, and something to definitely keep an eye on.  The Greensboro News and Record states that the State of NC has only begun to start trying to tell the scope of such a devastating storm on the environment.  Fishermen already have reports of crabs and fish leaving the now oxygen depleted waters and “dead zones” for more northern hospitable waters.  Researchers at Johns Hopkins and University of Maryland found abnormal brain function, burning skin and respiratory irritation followed by concentration problems in those exposed to vapors or water in areas where fish kills were actively occurring.  Researchers Levin and Schmechel from Duke found rats exposed manifested impaired learning.  Symptoms were also noted to relapse after exercise as burning fat cells released toxins into system.  CNS impairment, cognitive impairment, short-term memory and peripheral damage, immune system impairment, asthma-like effects, severe headaches, blurred vision, nausea/vomiting, kidney/liver dysfunction and narcosis “a drugged effect” were observed. Tourists are for the most part not being given this information, that the estuaries in parts of North Carolina during certain times of the year between April and October are subject to pfiesteria/fish kills affecting human health as well.  For up-to-date research, try JoAnn’s NCState University website.  www.pfiesteria.org/pfiest.html  She, much like CFS/FMS/MCS patients and researchers, has had to battle the political, medical and business establishments who wanted to deny this problem existed.  We wonder why? 

Excerpts from High Point Enterprise, September 26, 1999 Mosquito Spray Kills Butterflies The malathion sprays were to kill encephalitis-bearing mosquitoes.  A jogger talks about a truck coming upbehind her while she was in-line skating at Central Park, the air being filled with spray and butterflies dying everywhere.  Question is, if these and other species like rare dragonflies are dropping dead, what is happening to people, and their immune/neurological systems?

Gulf War Illnesses Spur New Paths of Research

“This is the theme,” said (Garth) Nicolson, “Multiple toxic exposures compromise the immune system, and if your immune system is compromised, you are at risk of these chronic infections.  Dr. William Baumzweiger, a Los Angeles clinical neurologist, told the vets “all these insults...make the body more vulnerable...The veterans are getting diseases that look like they are designed by a committee.”  All of this confounds traditional medical thinking on infectious disease.  Convention of Persian Gulf War veterans, researchers and advocates.  Since the Gulf War, veterans have presented a variety of symptoms including fears, night sweats, join and muscle pain, memory loss, headaches, skin rashes, diarrhea, abdominal pain, bronchitits, arthritis, confusion, chronic fatigue, depression, hair loss, ulcers, heartburn, insomnia, bowel nflammation, asthma, lactose intolerance, allergies, and painful sensitivity to light.  “There are noticeable pathways in all of these things, Garth Nicholson, chief science officer at the Institute for Molecular Medicine in Huntington Beach, CA told the conference.  “They start with multiple toxic insults and they end up with chronic infections.  And the infections continue long after the toxic insults stop.”

(WORLD SOCCER CUP CHAMPION) Michelle Akers’ website talks about the program she used to get back into condition after being sidelined with CFIDS and NMH for years. She lists the medical tests she had and strongly recommends them for someone with these conditions before starting a reconditioning program. A well-read lady who had the support of a top CFIDS doctor, team doctor, team trainer, team psych, nutritionist, PT, massage therapist, family, friends, coaches and TEAMMATES. I think the support of these championship women who love and believe in her made a big difference in her recovery. She also has a strong religious foundation.

  I suggest this as great reading to understand how she was able to perform at this level with CFIDS. If all PWCs had this kind of medical and emotional support, I think we would have more recovered patients.  Her take on exercise can be found at http://www.michelleakers.com/exercise.html.  This is an excerpt of her views on medical tests needed for planning a reconditioning program:

“Consult a doctor, specifically a doc who specializes in CFIDS and/or chronic illness. Get the gammut of tests done and be absolutely positive you don’t have any other obstacles to be aware of before beginning an exercise program (i.e., high blood pressure, injury, infections, etc.).

You don’t want to be stupid and jeopardize your health permanently.

 “VO2 Max Test and Cortisol Levels. Now, get with a doc who can perform (or authorize) a VO2 Max Test on a treadmill or a bike and have blood Cortisol levels measured before and after exercise. This is important.  Dr. Cheney (The Cheney Clinic) stressed the fact that if my blood Cortisol levels were abnormally low I was risking permanent damage by continuing to exercise at extreme levels. (Note: There is a specific protocol to be followed when doing these tests, so be sure to contact a doctor that is versed in obtaining the correct information and performing the correct test protocol.) A VO2 Max Test measures the volume of oxygen that your cardiovascular system  is able to supply your body while exercising and determines when your body turns from aerobic to anaerobic during activity. The VO2 Max is the maximum level your body can supply O2 and maintain activity. “

When you determine the point your body goes anaerobic, your training regimen can be altered to obtain maximum benefit and activity without causing you to fatigue out too quickly or crash from extreme demand on your body. And lastly and more importantly, once the blood Cortisol levels are found, you can determine if it is “safe” to exercise.”

http://www.michelleakers.com/index.html      Review by Sydney Poore, RN

From the BBC: Health Report Raises Sheep Dip Health Fears http://news.bbc.co.uk/hi/english/health/newsid%5F383000/383003.stm A report by the Institute of Occupational Medicine in Edinburgh has found that exposure to organophosphate sheep dips poses a risk to health.  Between 1976 and 1992 the use of organophosphate sheep dip was compulsory in the UK.  Since 1992 it has been optional. The BBC report also cites the above average number of sheep dippers on one of the Western Isles “found to be suffering from the chronic fatigue syndrome ME - four times the national average.” Further details about ME in the Western Isles may be found at:

http://listserv.nodak.edu/scripts/wa.exe?A2=ind9712B&L=co-cure&P=R233 [Please note that the URL for the article in the Stornaway Gazette given in this Co-Cure post is no longer functional]

FYI:  Porphyria

An overlapping disease with some patients with CFS/MCS/FMS, the symptoms of porphyria vary from mild to severe, and can involve many different areas and be confusing to both patient and physician, who don’t suspect this disease and are not looking for it. General characteristics include: a female preponderance of about 63% The acquired form can occur at any age depending on environmental exposure. General symptoms of an acute attack for all forms of porphyria include: abdominal pain and tenderness, red, dark or green urine, non-abdominal pain nausea vomiting, constipation loss of appetite, amenorrhea (loss of menstrual periods) breast secretions and diarrhea.  The neurological symptoms of acute attack are: 1) peripheral manifestations including peripheral neuropathy, weakness, paresis/paralysis, sensory disorders, and possible respiratory 2) central nervous system symptoms including behavioral changes, irritability, anxiety, hallucinations, confusion, depression and sometimes even seizures and 3) cranial nerve involvement may cause voice changes or aphonia, facial nerve palsy, problems with eye muscles, trigeminal nerve (5^th cranial nerve) palsy, dysphagia (trouble swallowing), vision changes and other symptoms.  PHYSICAL FINDINGS of the acute attack may include red or dark urine, rapid heartbeat over 100 beats per minute, labile or varying hypertension, fever, dilated bowels, urinary incontinence or leaking of urine, profuse sweating, increased hair growth, decreased urination, bladder distention, hyperpigmentation of the skin, jaundice (yellowing of skin caused by liver failure).  In about one-half of the patients, photosensitivity is a major problem with severe reactions to sunlight in the worst cases; severe dermatitis with blistering, scabs and sores may appear on skin when exposed to sunlight.

Porphyrias are a group of 8 different diseases of heme synthesis in which over-production of porphyrin compounds results from deficient enzyme activity in the biosthentic pathway of heme, either in the liver or red blood cells in the bone marrow. In the final steps of this process, iron is added in the red blood cells, producing heme, which is then made into hemoglobin within the red blood cell.  Most of the porphyrias are related to liver disease; one form involves both the liver and bone marrow, and another form originates in the red blood cells. Red blood cells live for about 3 months. When they die they break down to bilirubin which is processed by the liver. So the process of  producing new red blood cells to replace the older ones is continuous.  The biochemistry of the porphyrias is very complicated, but the important thing to note is that it may be caused by a series of deficient enzymes which may result in an over-production and over- accumulation of one or more of the porphyrins. These porphyrins may be deposited in various tissues where they are quite toxic and thus cause symptoms. (From Our Toxic Times by Dr Gordon Baker August 1994 Vol 1 No.8)

Holiday Tips

Have your family tape their wish list on refrigerator before Thanksgiving, and tape yours as well. 

Use catalogs or the internet.

Let shopping places know you have a disability that limits your ability to walk for sustained periods of time, and ask for assistance.  Give one dollar bills in $5 or $10 in envelopes if you are unable to shop for individual gifts.

Have a potluck Christmas dinner at another family member’s house. 

Hire someone from your local church interested in earning some extra money to do ½ day or 4 hrs. cleaning for $25 to get your house ready for Christmas.

Send a copied Christmas letter, asking your friends to contact you and let you know how they are doing, as well as sending an inspirational quote and brief update on your family.

Send free online cards.  (www.bluemountain.com) Attend a special services your place of worship offers.  Sometimes the children’s program strikes just the right note to lighten a burdensome day.

Have a small inexpensive tabletop tree, a decorated fresh wreath, and some Christmas candles for a quick, inexpensive, low labor Christmas feel. 

On and off during the day, treat yourself to a free spirit-lifter of some inspirational Christmas music on CD or radio.

Each December, Target makes holiday shopping easier for seniors and people with disabilities by dedicating one morning of shopping solely to them.  As part of this 25-year tradition, the guests at this party are treated to entertainment, food, fun, personal service, free gift wrapping and, best of all, hassle-free shopping. (612)304-6098 or www.target.com

Don’t forget to put other PWC’s on your Christmas list:  prayers, cards or a call.  

Also send a non-taxable donation to CFIDSERS- a emergency CFS relief organization run by Dr. Elaine Katz.  There are so many needs. See her on the net at http://www.cfidsers.org/contents.html or by mail at 

CFIDSERS, Inc. 

4714 Northwood Lake Drive, East

Northport, AL  35473

Her mission statement:

TO ALLEVIATE THE SUFFERING FROM FINANCIAL EMERGENCIES PRIMARILY AMONG PEOPLE WITH CFIDS, WHO, HAVING NO RECOURSE OTHERWISE WOULD HAVE TO ENDURE HUNGER, HOMELESSNESS, AND MEDICAL DEPRIVATION.  Tax ID 63115572.

“Give until it stops hurting”

www.thehungersite.com

Click a button on this website, and somewhere in the world some hungry person gets a meal to eat at no cost to you.  The food is paid for by corporate sponsors and administered by the UN.  You’re only allowed one click per day. Low energy free gift to others this Christmas.

Anyone who has ideas for a column on how to start Internet home businesses that may be adaptable for PWC’s, please give us a call, or e-mail your article to:  MAuten5599@juno.com.

SURF the NET

virtualdog.com:  Don’t have the energy to keep up with an animal friend? Adopt a virtual dog; it even wags if you pet it.

http://www.netradio.net/home.  Soothing background music from your computer.

www.healthgrades.com.  Report card on U.S. doctors, health plans and hospitals. According to their ratings, Kaiser Foundation Healthcare of NC is best HMO  overall.  Free objective ratings on doctors., health plans, hospitals.  Great place to compare the Medicare C (Choice) companies that    are an option if you have Medicare A & B.  www.pdr.net:  “Physician’s Desk Reference” for herbal meds.  yahoo.com/health/Drugs_Tree/medication_or_Drug:  Potential drug side-effects.

http://GUKU.homepage.com/CFSintro.html

www.geocities.com/~marilynk

www.ndrf.org/physician.htm.  Doctors’ list.

www.angelfire.com/ma/ladylynn/friend.html.  Hug.

www.freeyellow.com/members7/chronic-relief/angelorder.html 

National Dysautonomy Research Foundation

www.link4u.com/y2kthm

www.wecantogether.org

www.co-cure.org

www.womenandchildrenfirst.com.

http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=7677561&form=6^db=m&Dopt=b

Dr. Grace Ziem and Albert Donnay article on “Chronic fatigue, fibromyalgia and chemical sensitivity:overlapping disorders” http://pages.ebay.aol.com/sports promo has a link to the CAA website, and a percentage of the proceeds from the online auction of the Joe DiMaggio collection auction goes to fight CFIDS, and raise attention about CFIDS by donor, Charlotte businessman Ralph Perullo.  His daughter has CFIDS.

http://abcnews.go.com/wire/US/ap19991013_1187.html

Report of Russ Bynum, AP reporter who attended CDC patient advocate meeting.

http://cfidsfoundation.org.  National CFIDS Foundation, and excerpts from    publication “THE FORUM”

http://www.cfids.org.  CFIDS Association of America, PO Box 220398, Charlotte NC  28222-0398

800-442-3437

 Editor’s new mailing address:  808 Lakecrest Ave., Apt. 702, Chatham Woods, High Point, NC  27265

For newsletter/membership subscriptions:  Marvina Powers, 107 Wall Ave., Thomasville, NC  27360

A DAY OF HERBS: November 6.  Sponsored by NC Cooperative Extension Service and Herbal Thyme, Dr. Roy “Chip” Watkins, MD, MPH of Family Practice of Summerfield will be the guest speaker.  His topic will cover ten major medicinal herbs.  A herbal buffet will be served at noon, followed by afternoon workshops for those who would like to stay on herbs for dogs, herbal wreaths, herbs for the cold and flu season, and making herbal pound cakes.

CNN  For those wishing to respond with positive or negative feedback on the CNN segment on CFS Sunday, October 24, 1999, convey your opinion on the Web at http://cnn.com/feedback/  or, by regular mail at:

 Attn: Graham Messick and Sarah Fogel

1 CNN Center

P.O. Box 105366

Atlanta, GA 30348

 PHILOSOPHER’S CORNER

Melinda Vadas, PhD

It is everybody’s job to attend to those suffering,

physicians are blessed enough to get paid for it.

WORDS & WORKS OF THE HEART

OUR THANKS to Dr. Jay Goldstein for his years of selfless service to the CFIDS patient community, often to his own personal detriment.  We honor you for your care for us all. 

Persons with CFIDS received a Halloween treat yesterday from “PARADE” magazine. The magazine, circulated in Sunday newspapers and read by 82 million Americans every week, ran a two-page feature on CFIDS.PARADE’s Dr. Isadore Rosenfeld wrote that "he used to be skeptical about CFS” but is now “convinced that [CFS] is a real disorder—probably due to some derangement of the immune system, possibly triggered by a still unidentified infection, viral or bacterial, or an allergy or hormonal imbalance.” He concluded by saying, “If you’re unlucky enough to develop Chronic Fatigue Syndrome, remember: It’s not all in your head.”

PARADE readers were referred to The CFIDS Association of America’s address and 800-number for more information.

The CO-CURE Internet group has set up an e-mail address where you can get the text of this copyrighted article for your personal, noncommercial use.

Just send an e-mail to LISTSERV@LISTSERV.NODAK.EDU The e-mail must read: GET CO-CURE.CFS (Don’t put any additional text in your message, as this is an automated system. You don’t even need a subject for your e-mail message.)

You can contact the editors of PARADE at

http://www.parade.com/email/index.html

Vicki Carpman Walker

Research & Public Policy Project Manager

The CFIDS Association of America

Advocacy, Information, Research and Encouragement for the CFIDS Community

PO Box 220398, Charlotte NC 28222-0398

Voice Mail: 800/442-3437        Fax: 704/365-9755

WWW: http://www.cfids.org    General E-mail: cfids@cfids.org

A CHAT ROOM founded by committee member, Mary Pretlow, is located at http://ncchem.com/safe-arbor.  Focus: support the Christian community in prayer for CFS/FMS/MCS sufferers and related issues, but open to all.  Our Support Group is also on the Web, courtesy of Earle Phillips at the NC Chemical Sensitivity Website ( http://ncchem.com); committee member, Christine Hagar’s CFS/FMS/MCS WEBSITE address may be found at (http://members.xoom.com/PlopFizz.)