UPCOMING MEETINGS!!!         

*** DR. CHARLES LAPP at May 8^th meeting!**

MARCH/APRIL 2000

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.

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

Rockingham County Group Third Thursday of mo. 7:00 pm, Morehead Hospital, Eden   

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

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

**  Due to small attendance, the Daytime Support Group meeting at Jamestown UMC has been suspended until further notice.

           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 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  (www.ncf-net.com), CFIDS Association of America  (www.cfids.org), CDC (www.cdc.org).

Job-Hunting for the Disabled:  Ted Pavlakis, former commercial real estate broker with MS and Founder of Disability  Careers, Inc. runs a non-profit employment agency for the disabled.  His advice:

Do a self-assessment that is objective.  Be guardedly optimistic. 

299-4136 or 1-800-229-8776Courtesy: MS Connection, Jan.2000, CNCC

Abandonment of Disabled:  NC Council for Women  (919-733-2455), NC Disability Advocacy  (1-800-821-6922), NC      Victim Assistance  (919-831-2857), CareLine  (1-800-662-7030)

Online Service for People with Disabilities:  $11.50 Per Month Unlimited Access and email for the “Disabled” to be     Online through New Internet Service Provider (ISP) ABLE-NET Internet Services www.able-net.net based out of  Modesto,CA.  They offer specialized services to People with Disabilities w/special browser for visually impaired. 

Free internet access to the World Wide Web:  Offered this month for first time, free internet access to the Web as well     as free e-mail  (www.juno.com)

Neurology, 9/98, Belgian Migraine Society.  400 mg. of riboflavin (B-2) 1xdaily for 3 months, fewer attacks.

Corrections/Additions to Doctor’s List:     Neuroimmunologist, Dr. H.

Hugh Fudenberg, MD, Spartanburg, SC

Neurosurgeon, Dr. Michael Rosner moved to Hendersonville, NC

Termination of the Physician-Patient Relationship

The NC Medical Board recognizes the physician’s right to choose patients and to terminate the professional relationship with them when he or she believes it is best to do so. That being understood, the Board maintains that termination of the physician-patient relationship must be done in compliance with the physician’s obligation to support continuity of care for the patient. It must be done by appropriate written notice given to the patient, the relatives or the legally responsible parties sufficiently far in advance (at least 30 days) to allow other medical care to be secured.  Should the physician be a member of a group, the notice of termination must state clearly whether the termination involves only the individual physician or all members of the group..  If you feel your care has been improperly discontinued, see the NC Medical Board statement, and call Mrs. Clark at Ext. 220 (919)828-1212 to register a complaint.

Needed!  CFS/FMS or MCS female roomate to share housing expenses for Greensboro apartment.  Private BR, terms negotiable.  For more info, contact Ann Womack (632-1408).

Anecdotal Support Group IV Lidocaine Results Best results for pain, cognitive, migraine relief according to preliminary patient reports of those in our support group seem to be with Dr. Jay Goldstein’s Protocol: 250 mg. lidocaine IV with saline, infused over 2 hrs. once weekly in the outpatient clinic setting.  Effects may be cumulative, and Medicare covers.  Drs. Fried and Edellman are two local doctors who work with Wesley Long using this protocol.

Consumer Credit Counseling Service, Div. of Family Service of the Piedmont, Inc.  (1-888-755-2227) Free counseling in person, phone or mail to help resolve financial problems re: Debt Repayment Plans, Budget and Housing Counseling and Consumer Education.

CFS CHUCKLES 

Medical Charts

The following are actual, unedited, notes written by doctors on patients’ medical charts.

1.   Patient has chest pain if she lies on her left side for over a year.

2.   On the second day the knee was better, and on the third day it disappeared completely.

3.   The patient has been depressed ever since she began seeing me in 1993.

4.   Discharge status: Alive but without permission.

5.   Healthy appearing, decrepit 69 year-old male, mentally alert but forgetful.

6.   The patient refused an autopsy.

7.   She is numb from her toes down.

8.   Patient was alert and unresponsive.

9.   Rectal exam revealed a normal size thyroid.

10.  She stated that she had been constipated for most of her life until she got a divorce.

11.  I saw your patient today, who is still under our car for physical therapy.

12.  Skin: Somewhat pale but present.

13.  Large brown stool ambulating in the hall.

14.  Patient has two teenage children, but no other abnormalities.

One thing we can do - we can hide our own Easter eggs!   -  Margaret Smithey

Margaret called Dr. Thacker, her current doc, by the wrong name.   When she called him “Dr. Walker,”  her husband, Thomas stated that her short term memory must really be getting worse since Dr. Walker was her ObGyn 37 years ago!

HAPPY DOC’S DAY 

March 30, 2000

MEETING NOTES

by Ann Simmons

The presenter for our January meeting was Professor William B. Karper, Associate Professor at UNC Greensboro.   Professor Karper is conducting a research study of Fibromyalgia and exercise based on a select group chosen through interview screening, ability and committed availability to participate in the program conducted by him on UNCG campus.

Subjects are monitored during this program for their progress and the effects are documented during and after the course of activities with a follow-up on the effects of exercising.   Professor Karper states that some form of exercise is beneficial for everyone on a daily basis.  The key is to find what is best for you, develop and maintain a safe program. He mentioned the effects of traditional and alternative medicines and treatments, their interactions with each other and herbal remedies.  Through Professor Karper’s research of FMS patients, the following information are excerpts from his documented study:

A.   Regarding exercise-

1.    Strength appears to be more important than cardiovascular training for those with FMS.

2.   Water exercise may be a good choice for many with FMS.

3.    Exercise seems to have no effect on pain in FMS subjects worked with.

4.    Exercise can have a positive effect on fatigue in FMS subjects.

5.    Exercise can have a positive effect on HDL in FMS subjects.

B.   FMS sufferers appear to need someone to manage all of their medication and make some sense out of the total      treatment program.

C.   I am highly suspicious that a relationship may exist between ADD/ADHD and FMS.

D.   I believe (based on the latest research literature) that FMS has a neuro-hormonal basis.  My research does not support     that everyone with FMS is clinically depressed.  In my opinion:  Professor Karper’s study is helpful in the research of FMS.  He suggested that one doctor manage all types of our medication. Even when exploring alternative treatments as well as therapy, both physical and psychological. We all know that depression is not a cause of our illness, but it was good to hear Professor Karper make that statement.  While he explained that exercise is important he also mentioned that safety is more so.  It is recommended that you never start any exercise program without the consent of your physician following an illness, surgery or injury.  Once approved start slow with gentle stretching, then walking, when possible move on to an intermediate level and work your way up.  Never do more than your body is capable, never strain, never attempt something new without assistance.  You may find that walking only, is better for you, if so, stick with it daily if possible.   A more comprehensive study including in all facets (genetically, physically, spiritually, emotionally and mentally) of a person life may yield some valuable insight to the cause, treatment and cure of FMS.  Because of its complexity, the avenues or format of a study of this nature is unknown at this time.  With the help of monies set aside for the continuation of studies for CFIDS/FMS, maybe one day such a study will yield not only a cure but a prevention.

A CALL TO ACTION 

May 12 is International CFIDS Awareness Day!  Please do your part in helping to bring about awareness to such a devastating illness.  By sending letters to our congressmen and senators we will let them know how we feel about the continued setting aside of funds for research and studies.  This awareness will also charge them with the responsibility of making sure the appropriate funding is used for research and studies of our illness.

Thanks to the work of our MCS Liaison, Earle Phillips, Governor James Hunt has declaired May 7-13, 2000 as “MULTIPLE CHEMICAL SENSITIVITIES AWARENESS WEEK” in North Carolina.  See it on the website at http://www.governor.state.nc.us/govoffice/citizen/Y2K/MAY/multchem.htm.

Thanks to the work of our Human Resources Committee

Chairperson, Ann Simmons, has arranged for a proclamation be presented at the May meeting from Greensboro’s Mayor Pro-Tem, Yvone Johnson proclaiming May 7-13, 2000 INTERNATIONAL CFIDS AWARENESS WEEK.  Way to go Earle and Ann!  Making a difference is what it is all about.  Stay tuned for more upcoming publicity efforts, and if you would like to share your story with the local media, or volunteer to assist on a committee, please contact Ann.  The HUMAN RESOURCE COMMITTEE issues a Plea for Volunteers needed for various committees. These are informal committees seeking caring individuals willing to help at your own ability and availability. Professional experience not a pre-requisite, life experience a plus, life challenges welcomed. No deadlines or time frames, just do what you can when you can, if you can! Committee choices are flexible, participate as needed when you desire to.  ALSO At the March meeting, sample letters will be available for you to sign and send to congress!  Please bring stamps and legal envelopes  (they will also be available for purchase) to mail your letters in.  We also hope to have a supply of blue ribbons to handout to be given and worn by you, your family and friends in recognition of May 12, CFIDS/ME/FMS/MCS Awareness day.

From an earlier time in history—

LET MY PEOPLE GO (Exodus 5)

Bricks without Straw

Pharaoh gave this order to the slave drivers and foremen in charge of the people:  “You are no longer to supply the people with straw for making bricks; let them go and gather their own straw.

But require them to make the same number of bricks as before: don’t reduce the quota.  They are lazy; that is why they are crying out.  ‘Let us go and sacrifice to our God.’  Make the work harder for the men so that they keep working and pay no attention to lies.  ...So the people scattered all over Egypt to gather stubble to use for straw.  The slave drivers kept pressing them, saying, “Complete the work required of you for each day, just as when you had straw.  The ... foremen appointed by Pharaoh’s slave drivers were beaten and were asked, “Why didn’t you meet your quota of bricks yesterday or today, as before?”  The Israelite foremen went and appealed to Pharaoh: “Why have you treated your servants this way?  Your servants are given no straw, yet we are told, ‘Make bricks!  your servants are being beaten, but the fault is with your own people.”  Pharaoh said, “Lazy, that’s what you are-lazy!  that is why you keep saying, “let us go ...” Now get to work.

Then the Lord said to Moses, I have remembered my covenant.  Therefore say to the Israelites:  I AM the Lord, and I WILL bring you out from under the yoke of the Egyptians.  I will free you from being slaves to them, and I will redeem you with an outstretched arm and with mighty acts of judgements. ... I AM THE LORD.