Trinity Group. First Thursday of month at 1:00 pm, Trinity UMC, Trinity 

Rockingham CountyThird Thursday of mo. 7:00 pm, Morehead Hospital, Eden 

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

MAIN MEETING DIRECTIONS  ...

MAY:   Wesley Long Community Hospital’s THOMPSON AUDITORIUM is located at the hospital in the Kiser Building.

From High Point, take 68 N (Eastchester Dr.) Turn right on Wendover. Turn on Friendly Ave. exit.  Turn right on Friendly

(Friendly Shopping Center is to your left).  Take first left onto Elam Ave.  Hospital on left. 

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

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* * *  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 is a chemical sensitivity trigger often overlooked.  Thank you very much for your consideration. 

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/related issues, open to all. 

Our Support Group is also on the Web, courtesy of Earle Phillips at the NC Chemical Sensitivity Website ( http://ncchem.com ), National CFIDS Foundation  ( http://www.ncf-net.com ), CFIDS Association of America  (www.cfids.org), CDC ( http://www.cdc.org ).IN OUR WORLD 

Pelvic and Ovarian Varices, NMH, and CFIDS

Frank Albrecht., PhD.

Most people think of varicose veins (also called varices) as swollen, ugly (and sometimes painful) veins showing through the skin of the legs.  But varices also occur deep within the body.  Such veins within the lower abdomen (pelvic and ovarian varices, also called pelvic congestion syndrome) may cause severe pain and worsen orthostatic symptoms such as POTS or NMH (neurally mediated hypotension).  Pelvic and ovarian varices become engorged with blood, robbing the rest of the body of part of its natural supply and intensifying fatigue, dizziness, and other orthostatic problems.  They also put pressure on internal organs and on nerve tracts, producing flank, abdominal and vaginal or scrotal pain that is often dismissed as “all in the head.”  In males these varices can be seen as a varicocele, an engorged vein on the scrotum that drains the testes.  In females they are entirely invisible and can be found only by injecting contrast dye into the veins during  a radiographic scan.  The main symptom in both sexes is unexplained pain in the lower body, usually worsened by upright posture...In otherwise healthy women having had a child is the only known risk factor.  PWC’s with orthostatic problems are also at risk for this condition...Treatment is a minimally invasive procedure in which the engorged veins are tied off by a device threaded into them from a small incision.  The first PWC (Person with CFIDS/FMS, etc.) found to have extensive and symptomatic ovarian varices was 16,had been sick with CFS and NMH for more than four years, had never been sexually active...She suffered severe flank and pelvic pains that were presumed by her CFS doctor to be due to endometriosis.  Other doctors thought they were psychosomatic.  Studies done as her pain intensified led to the accidental discover that she had extensive abdominal varices.  After treatment her pain and her fatigue both showed dramatic improvement.  Since that time (March, 1999) a number of adult and adolescent PWCs have had this procedure with generally positive results...Any PWC with such unexplained pains should, if possible, talk with a pelvic pain expert and ask that physician to consult with the originator of this procedure with PWCs, Dr.Anthony Venbrux, Director of Interventional Radiology at Johns Hopkins University Hospital.

SOURCE:  The Mass. CFIDS Winter 2000 Update, sent in to our newsletter by Melinda Vadas.

Delayed Orthostatic Intolerance and CFS/FMS

Written by Frank Albrecht, PhD for “Brainstorms”

Most people who have CFS also have some degree of delayed orthostatic intolerance (DOI).  That is, their symptoms get worse when they stay in upright posture for a length of time.  Many people with FMS also have this problem. The simplest way to discover if you have DOI is to stand up for a while, with your arms by your side, fidgeting as little as possible.  It’s best to stand with your back to a wall.  Put your heels about four inches out from the wall and then lean back so your shoulders touch. This reduces your need to use your muscles to keep yourself upright and makes the test more powerful.  You also should not have a television or radio on, and should keep conversation with others to a minimum.  Standing this way for up to ten minutes, do your symptoms, whatever they are, get worse?  Or do you develop new symptoms that you don’t usually have?  Or does it not matter?  If it doesn’t matter you do not have DOI.  Otherwise, you do. Another aspect of this test is your heart rate.  A normal healthy person will have a heart rate that is not much higher after standing quietly than it normally is when lying down.  If you heart rate goes up a good bit, that indicates DOI.  Many people who have DOI show mottling or purple of the skin of their limbs, hands, and feet when they stand quietly in this way. This is because blood is not being pumped properly to the upper body and the head.  Instead it is pooling in low places.  You can look at your hands and feet after you have been standing a few minutes to see if they are becoming mottled or purple.  Another way to look for this after standing for more than 5 minutes is to hold one hand up at about neck level chin for one minute, letting the other hand hang by your side.  At the end of the minute put the two hands side by side in front of your chest.  If you have DOI one hand will be a normal color (whatever that is for you) while the other will be noticeably darker from venous pooling.  But watch closely, because the difference will fade in a few seconds. If you do this test (sometimes called the “poor man’s tilt table test”) and find you have DOI, does that mean you have NMH (Neurally Mediated Hypotension) or POTS (Postural Orthostatic Tachycardia)?  No, not necessarily.

If your heart rate goes up 30 or more beats per minute, or if you have to sit down to keep from fainting, you likely have one of these conditions.  You should talk with a physician about that.  But many people with CFS and FMS have some degree of orthostatic intolerance, yet not enough to warrant a formal diagnosis. If you have DOI, what should you do?   That’s easy.  Increase your intake a fluids and salt.  Especially salt.  Many mild symptoms of DOI are eliminated by this simple step.  If you are on a very low salt diet because you think (mistakenly) that that’s healthy for most people, your diet many even have created your DOI!  Using the muscles in your legs can help DOI.  I know one young woman with mild DOI (her older sister is very sick with it) who never stands in line.  She dances in line!  People look at her and smile, because she’s there in the supermarket checkout line moving to the music in her mind—and using the muscular contractions of her legs to keep her blood flowing upward to her brain.  You can also squat in line, fidget in line, walk in and out of line.  One woman told me she sits in line. Some people with DOI are fine if they run (for instance, Michelle Akers) but they can’t stand still very long.  If that’s you, run!  Or walk fast.  Sitting in a chair is also upright posture.  It will wear you out more slowly than standing, but wear you out it will.  Put your feet up!  In my office I draw a chair up in front of my DOI clients and make them up their feet up on it.  Or I get them to sit Indian style, legs drawn up under them.  People with severe DOI notice the effect immediately.  Those with mild cases do not feel an immediate effect but they do find that if they consistently sit with their feet up they get less tired and their other symptoms are improved. If these measures don’t make enough difference, you should see a physician who understands DOI.  A number of medications are available that help this condition.  You could also consult a trained herbalist. Do not, however, try to treat the condition yourself with herbal remedies.  Some herbs, such as licorice root, do help DOI.  But these remedies are powerful and can be dangerous.  They should never be used without expert supervision. If standing and sitting for a prolonged period gives you abdominal or pelvic pain, or makes pain in those areas worse, you may have pelvic varicose veins.  These are distended veins within the abdomen that are fairly often seen in DOI.  These kind of veins are internal and very hard to detect.  But they are not difficult to correct once they are found.  You could consult an interventional radiologist at a pelvic pain clinic to seek treatment for this kind of condition.  DOI has many causes—most of them unknown!  Low blood volume may be a cause—or maybe its an effect!  No one is sure, but many (perhaps most) people with DOI do have low blood volume.  This may be why infusions of IV Saline make people with this condition feel better for a while (a few hours to a day or so).  Some causes that are known and that crop up fairly often in CFS and FMS are Ehlers-Danlos Syndrome, Chiari Malformation, and cervical spine stenosis.  You can look those up on web sites devoted to them, and also at my own web site “For Parents of Sick and Worn Out Children” at http://home.bluecrab.org/~health/sickids.html .

HELP FOR SUFFERERS OF CHEMICAL EXPOSURE, CFIDS.CHEMICAL

SENSITIVITIES/POISONING, ALLERGIES, CANCER (Part 1)  Written for “Brainstorms” by Susan Vaughn 

First, it is always best to find a doctor who can work with you, but in my experience, if the doctor is ignorant of, or in the process of trying to disprove environmental illness, then you are better off without him - Do try to find an enlightened one - the clearinghouse source listed below will give you a list.

(Dr. Linwood Custalow, Todds Lane, Hampton, Va. (757-826-0216) and Dr William Meggs, Emergency Medical, ECU (919) 816-2954) Dr. Lieberman, Charleston, SC (803-572-1600) Dr. Speckhart, Chesapeake, VA: oncologist famous for successful treatment of cancer using alternative as well as traditional methods of treatment. Dr. Ackley, Nags Head NC: detoxification homeopathics and chiropractic (252-480-9909.) Dr. Meagan Walsh, Winston Salem: Nutritional Microscopy Screenings 336-777-0210 (around 65.00 for a screening) Author contact: Susan Vaughan, Kitty Hawk, NC  (252)480-3301

CFS CHUCKLES 

Marvina Powers ordered a sundial to put in the garden.  As she and cohorts, Fran and Margaret were admiring it, Marvina asked a simple CFIDS question.  “How do I set it?”  Her CFIDS friends suggested a simple CFIDS suggestion,  “Turn it on the backside and set it!”

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Donna Singletary had to call a friend to get her husband’s work number.  No ladies, its not as it sounds.  She didn’t have a Greensboro phone book, and the friend did!

SLEEPING AT YOUR DESK

Top Five Things to Say if Caught Sleeping at Your Desk 5. “They told me at the blood bank this might happen.” 4.  “Whew! Guess I left the top off the White-Out. You probably got here just in time” 3.  “I was testing my keyboard for drool resistance.” 2.  “I was doing a highly specific exercise to relieve work-related stress.”

And the #1 best thing to say if you get caught sleeping at your desk:

1.   “...and in Jesus’ name.  Amen.”

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TERMS OF ENDEARMENT

A man was invited to dinner by his elderly neighbors.  The old gentleman endearingly preceded every request to his wife with ‘Honey’, ‘Darling’, ‘Sweetheart’, ‘Pumpkin’, etc.  The man was impressed since the couple had been married almost 70 years.  While the wife was off in the kitchen, he said to the gentleman,  “I think it’s wonderful that after all the years you’ve been married, you still refer to your wife in those terms.” The elderly husband just hung his head.  “Actually, I forgot her name about 10 years ago.”

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REMEMBER: STRESSED SPELLED BACKWARDS IS DESSERTS!

********Three older ladies were discussing the travails of getting older. One said, “Sometimes I catch myself with a jar of mayonnaise in my hand in front of the refrigerator and can’t remember whether I need to put it away, or start making a sandwich.”

The second lady chimed in, “Yes, some times I find myself on the landing of the stairs and can’t remember whether I as on my way up or on my way down.”

The third one responded, “ Well, I’m glad I don’t have that problem; knock on wood,” as she rapped her knuckles on the table, then told them “That must be the door, I’ll get it!”

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MEETING NOTES

UPCOMING WINSTON-SALEM SUPPORT GROUP: 

Dr. Michael Rosner

May 12 at 6:30 PM

Lambeth Adutiorium@Forsyth Medical Center: 

Dr. Michael Rosner, Board Certified by the American Board of Neurological Surgeons, has worked in Charlotte and Chapel Hill, NC and NC before joining Park Ridge Hospital, Fletcher, NC.  He appeared on 20/20 (March 10,2000) discussing Arnold/Chiari and CFS/FMS.  Admission of $5.00.  (336)723-7624 for more info.  Video available for $15.

THANKS TO DR. MITCH BLOOM...FOR OUR INFORMATIVE APRIL LECTURE ON  NEURAL THERAPY!

A CALL TO ACTION 

For your CFIDS/FMS/MCS, etc. activism, you can email Bill Clinton at president@whitehouse.gov, expressing your concerns regarding this illness.

We are thankful to Ann Simmons, this year’s May 12 Coordinator, for requesting May 12 as a proclamation for CFIDS Awareness Day in Greensboro, as well as coordinating the Press Release activities and packets going to all of our media outlets across the Triad.  We have had two stories developing as a result of her labor of love...both on previously uncovered support group illnesses - Porphyria and Gulf War Syndrome.  It is our prayer that many lives will be touched and improved as a result of this coverage. 

Mayor Pro Tem & City Council Member Yvonne Johnson will present a proclamation of May 12 as Greensboro CFIDS Awareness Day and say a few words at the May meeting.  Our guest speaker will be Dr. Charles Lapp, Hunter Hopkins Center, Charlotte, NC.  Dr. Chuck will be speaking on State of Science hot topics and taking Q&A’s at the end.  May’s meeting will be held at WESLEY LONG HOSPITAL, Greensboro instead of Moses Cone this month only due to seating considerations.  The Thompson Auditorium at Wesley Long will hold 100 seats per fire code, so the evening will be first-come, first-served.  A donation basket will be available at the door for those wanting to contribute to help defray meeting expenses, and establish an emergency fund for indigent patients.  BLUE RIBBONS will be passed out to help attendees raise awareness on May 12.  A copy of the Mayor’s Proclamation is available on the web, courtesy of Earle Phillips, at http://ncchem.com/aware/gboromayor.htm

Thank you and God bless all of you who helped with our support group member in immediate medical need.  We have collected $228 to date.  This should cover the patient’s initial visit and lab tests, if needed.  I am hoping that his further costs will be covered by CFIDSers and/or, if he is approved, Medicare or Medicaid.  (The patient has no assets, income or any type of insurance at this point.)  Thank you again, My love to all of you. 

 Melinda Vadas, Patient/Physician Liaison.

 

Subject:      Who You Are Makes A Difference

A teacher in New York decided to honor each of her seniors in high school by telling them the difference they each made. She called each student to the front of the class, one at a time. First she told each of them how they had made a difference to her and the class.  Then she presented each of them with a blue ribbon imprinted with gold letters which read, “Who I Am Makes a Difference.”  Afterwards the teacher decided to do a class project to see what kind of impact recognition would have on a community. She gave each of the students three more ribbons and instructed them to go out and spread this acknowledgment ceremony. Then they were to follow up on the results, see who honored whom and report back to the class in about a week.

One of the boys in the class went to a junior executive in a nearby company and honored him for helping him with his career planning. He gave him a blue ribbon and put it on his shirt. Then he gave him two extra ribbons and said, “We’re doing a class project on recognition, and we’d like you to go out, find somebody to honor, give them a blue ribbon, then give them the extra blue ribbon so they can acknowledge a third person to keep this acknowledgment ceremony going. Then please report back to me and tell me what happened.

Later that day the junior executive went in to see his boss, who had been noted, by the way, as being kind of a grouchy fellow. He sat his boss down and he told him that he deeply admired him for being a creative genius. The boss seemed very surprised. The junior executive asked him if he would accept the gift of the blue ribbon and would he give him permission to put it on him. His surprised boss said, “Well, sure.” The junior executive took the blue ribbon and placed it right on his boss’s jacket above his heart. As he gave him the last extra ribbon, he said, “Would you do me a favor?

Would you take this extra ribbon and pass it on by honoring somebody else? The young boy who first gave me the ribbons is doing a project in school and we want to keep this recognition ceremony going and find out how it affects people.

That night the boss came home to his 14-year-old son and sat him down. He said, “The most incredible thing happened to me today. I was in my office and one of the junior executives came in and told me he admired me and gave me a blue ribbon for being a creative genius. Imagine. He thinks  I’m a creative genius. Then he put this blue ribbon that says ‘Who I Am Makes A Difference’ on my jacket above my heart.  He gave me an extra ribbon and asked me to find somebody else to honor. As I was driving home tonight, I started thinking about whom I would honor with this ribbon and I thought about you. I want to honor you. My days are really hectic and when I come home I don’t pay a lot of attention to you. Sometimes I scream at you for not getting good enough grades in school and for your bedroom being a mess, but somehow tonight, I just wanted to sit here and, well, just let you know that you do make a difference to me. Besides your mother, you are the most important person in my life. You’re a great kid and I love you!”  The startled boy started to sob and sob, and he couldn’t stop crying. His whole body shook. He looked up at his father and said through his tears, “I was planning on committing suicide tomorrow, Dad, because I didn’t think you loved me.  Now I know you care. This is the happiest day I’ve known.”

The boss went back to work a changed man. He was no longer a grouch but made sure to let all his employees know that they made a difference.  The junior executive helped several other young people with career planning and never forgot to let them know that they made a difference it his life...one being the bosses son. And the young boy and his classmates learned a valuable lesson. Who you are DOES make a difference.    

·         Anonymous internet source

I give you a blue ribbon. Who you are makes a difference, and I wanted you to know that.-  Margaret Holt, Co-editor, BRAINSTORMS