...Dr. Charles Lapp leads Q&A Sessions at the Winston Salem Support Group (336-723-7624) on May 13 (at Gospel Light Christian Church, Walkertown: 1-40 Linville Rd. exit), and at the

Greensboro CFS Support Group on June 14 (at Jamestown UMC, I-40S Holden Rd. Exit, High Point Rd. to Jamestown, church on right before main intersection of Guilford and Jamestown Rd.) Invite your doctors, nurses, family and write your question up on a card now!

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

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 ; Christine Hagar's CFS/FMS/MCS Forum may be found at: http://forums.delphi.com/m/main.asp?sigdir=udontlooksick&tid=33 .

Because both CFS, FMS, MCS, GWS 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. Thank you for your consideration.

MAY 12: INTERNATIONAL CFIDS/FMS/MCS AWARENESS DAY

Our thanks to WECAN (Worldwide Electronic CFIDS/ME Action Network), sponsor of the Awareness Day banner composed of pillowcases with names of patients from all over the world. Our support group has 48 names on this banner. We are looking forward to sharing photos from Washington in the next newsletter issue.

We are asking everyone to do the following things to raise awareness in our community (for free or cost of a stamp):

U Contact congressmen by e-mail at www.congress.org. or...

U Call them (202-224-3121) or ...

U Copy, personalize and mail the sample letter to arrive by May 12 in congressman's office. If you can only send a couple of letters, please send them to: Senator John Edwards (NC), Representatives Robin Hayes and Richard Burr (NC). For a complete list of key members of congress, come to the May daytime meeting.

U Educate! You may give your healthcare providers a free Medical Information Packet from the CFIDS Association of America by calling (800-442-3437) and leaving his/her name and address. Also request the NAIAD send a free physicians' booklet to them on CFS (NIH Publication Number 96-484) by sending the same information to Office of Communications, NIAID (31/7A50); 31 Center Dr., MSC 2520, Bethesda, MD 20892-2520.

U For the newest Center For Disease Control Booklet (Call 404-639-1338 to request 25 or more copies - request the October 1998 CFS booklet.) Friends and family may also be sent these packets.

U Packets for school nurses and principals are downloadable free off the NCF Website ( http://www.cfidsfoundation.org ) Send a copy to your local schools.

CHANGING THE NAME

Not one more loss of a PWC's life or dignity can be justified by internal wrangling, politics or even other legitimate concerns amongst researchers and supporters by the logic, "We'd better get the name right before we change it." Broaden it to the Myalgic Encephalomyelitis it is already known by abroad, explaining that this international name is more truly reflective of the illness and will be used until the cause is found. LIFE is too cheap to waste on dogma in one of its uglier manifestations. We support, along with former US Asst. Secretary of Health, Dr. Philip Lee, the Medical Professionals with CFIDS, RESCIND and the National CFIDS Foundation, immediate adoption of the name ME along with CFIDS until such time as more research and development provides a definitive cause. The patient community should lead the way, by definition, as we have always done. Until such time, we will refer to it as ME/CFIDS in public relations. Deaths of patients due to suicide because of the stigma of a name is unconscionable and preventable...one of the few things about this illness that is. Our bottom line is patients. If we don't want to get the wrong name, we'd better check our logic. We've had the wrong name for years, and two wrongs don't make a right..

CHEMICAL-FREE LIVING TIPS

Duke Power has developed an environmentally friendly program to manage natural growth within power line rights of way. Their goal is to manage tall plants that might grow into the lines while maintaining lower vegetation for wildlife such as butterflies, birds and deer. They've developed an environmentally friendly and cost effective approach to managing plant growth in the rights of way. A combination of mowing, hand cutting and herbicides are the tools they use to control plant growth while minimizing any potential environmental risk to wildlife, our maintenance workers or you. Applying selective, low-volume herbicides is a very effective method of managing growth around power lines, controlling high-growing species while allowing the lower vegetation to flourish by using low-volume foliar application from May through September, dormant stem application from October through April and cut-stump application throughout the year. As the years go by, there are fewer tall-growing species, less herbicide and mechanical cutting to be used. While they continue to research the best technologies and techniques for managing vegetation growth, they want you to know the products and EPA registration numbers for herbicides they currently use. Accord 524-326, Arsenal 241-346, Garton 4 62719-40, Krenite 352-395, Transline 62719-259. For organic farmers and others with concerns, they can provide other options. To discuss these options, or if you would like a copy of the Material Safety Data Sheet or the Manufacturer's label, feel free to call them at the telephone number listed in your local phone directory. For more information on their integrated vegetation management program, please visit the residential section of our website at www.duke-energy.com/customer

(--April Duke Power statement enclosure)

SURFING THE NET

http://www.immed.org  (Dr. Garth Nicolson: mycoplasma incognitus/CFS research connection)

http://www.sameboat.orgex.html

http://www.cfids.org/youth  (new resource for youth w/CFIDS)

http://www.drrapp.com  (Dr Doris Rapp: MCS and allergies)

http://www.agenet.com/ask_a_pharmacist.html#form     (free e-mail response to your question from registered pharmacist)

http://www.hon.ch/Library/theme/Allergy/Glossary/food_intolerance.html   (Food intolerance)

http://www.ameliaww.com/fpin/fpin.htm   (Fragrance sensitivities)

http://www.wakeforest.edu  (Wake Forest MedSchool edlinks/library)

http://www.epa.gov/iaq (1-800-438-4318 - EPA Indoor air quality, info clearing house/sick building syndrome)

http://www.drugstore.com  (online prescriptions)

http://www.TheDepot.com   (Click on community, and then Welcome) Our group's listed on the Greensboro News & Record online database of triad community service groups.

http://www.lookingglass.org  (or call1-800-644-2666 "Parenting with a Disability" - free newsletter)

http://www.medicareadvocacy.org   (860-456-7790) Center for Medicare Advocacy (private non-profit providing assistance to people with disabilities in areas of Medicare, educational materials, home care, and referrals

PROLOTHERAPY FOR FIBROMYALGIA

Mitchell J. Bloom, MD

Over the last several years, I have spoken with many patients and physicians who are having success in treating FMS and CFIDS. After doing an extensive literature search and doing several lectures on this subject, I have found many effective treatments available. This article will be one of a series of articles which will outline these treatments.

Several physicians have noted that the classical tender points in fibromyalgia are around tendons and ligaments. (Tendons attach muscle to bone, ligaments attach bone to bone). These structures are extremely sensitive to pain. It is believed that weakness of tendons and ligaments are the cause of FMS and that this is potentially correctable with prolotherapy.

Prolotherapy involves injecting a weak tendon or ligament with a solution that stimulates fibroblasts to secrete collagen. This collagen strengthens the ligaments and tendons. Studies have shown a 40% increase in diameter and strength of the ligament after injection. Changes persisted more than 12 months. Disability, mobility and pain levels all improved significantly in patients injected after 5 or more years of chronic pain. Randomized, double blind control studies with saline injected controls have demonstrated a statistically significant improvement in low back pain and disability rating in treated patients compared to controls.

A study on patients with FMS performed by dean Reeves, MD, my mentor, showed a reduction in pain levels and increased functional abilities in more than 75% of patients with severe fibromyalgia. In a study involving 31 patients, 40% said that prolotherapy was the only effective treatment (these patients had not had acupuncture). 27% said prolotherapy was much more effective than any other treatments they received. 17% said the prolotherapy was helpful, but did not last. 10% said it was more effective than other treatments. 6% said it was not helpful. Also, 58% experienced improvement in ability to engage in light work.

I have found that when prolotherapy is combined with acupuncture, the results are even more dramatic. When these treatments are combined with medications, the results are even better.

Ed.'s note: In CFIDS/FMS the term "success" means relative symptomatic improvement of some type, and is not to be mistaken for a cure or efficacious treatment, which does not exist at this present time.

NOTABLE QUOTES

"How far you go in life depends on you being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and the strong. Because someday in life you will have been all of these."

-- George Washington Carver

Doing the best at this moment puts you in the best place for the next moment. -- Oprah Winfrey

INSPIRATIONS ...

People are often unreasonable, Illogical, and self-centered;

Forgive them anyway.

If you are kind, People may accuse you of selfish, ulterior

motives; Be kind anyway.

If you are successful, You will win some false friends and

some true enemies; Succeed anyway.

If you are honest and frank, People may cheat you;

Be honest and frank anyway.

What you spend years building, Someone could destroy

overnight; Build anyway.

If you find serenity and happiness, They may be jealous;

Be happy anyway.

The good you do today, People will often forget tomorrow;

Do good anyway.

Give the world the best you have, And it may never be

enough; Give the world the best you've got anyway.

You see, in the final analysis, it is between you and God.

It never was between you and them anyway ...

GOD'S BOXES OF LOVE

I have in my hands two boxes

Which God gave me to hold.

He said, "Put all your sorrows in the black,

And all your joys in the gold."

I heeded His words, and in the two boxes

Both my joys and sorrows I store.

But though the gold became heavier each day,

The black was as light as before.

With curiosity, I opened the black;

I wanted to find out why,

And I saw, in the base of the box, a hole

Which my sorrows had fallen out by.

I showed the hole to God, and mused aloud,

"I wonder where my sorrows could be."

He smiled a gentle smile at me.

"My child, they're all here with me."

I asked, "God, why give me the boxes,

Why the gold, and the black with the hole?"

"My child, the gold is for you to count your blessings,

the black is for you to let go." - Author Unknown.

A Lesson: What Really Matters

A few years ago at the Seattle Special Olympics, nine contestants, all physically or mentally disabled, assembled at the starting line for the 100-yard dash. At the gun, they all started out, not exactly in a dash, but with a relish to run the race to the finish and win. All, that is, except one boy who stumbled on the asphalt, tumbled over a couple of times, and began to cry. The other eight heard the boy cry. They slowed down and looked back. They all turned around in unison and went back -- every one of them. One girl with Down's Syndrome bent down and kissed him and said, "This will make it better." All nine competitors linked arms and walked across the finish line together. Everyone in the stadium stood and the cheering went on for several minutes. People who were there are still telling the story. Why?? Because deep down we all know this one truth: What matters in this life is more than winning for ourselves. What truly matters in this life is helping others win, even if it means slowing down and changing our course.

Newsletter of Medical Professionals With CFIDS (MPWC) 10-98 http://www.cfids-me.org/mpwc/news0198.html

Very random overheard true CFIDS conversations!

• "I want to put my social insecurity number some where."
• If one door closes in front of you, jump out the window. If one door closes in front of you, then another one closes behind you! -- Tom Castle
• Jobs for headless chickens are few and far between.
• Our brain is in a vault in Kansas City - our bodies are walking around. -- Melinda V
• Life is a succession of lessons, which must be lived to be understood.
• Sometimes I think I understand everything, then I regain consciousness.

Certified Way to Annoy People

1. .Signal that a conversation is over by clamping your hands over your ears.

2. Wear a hood with one eyehole. Periodically make strange gurgling noises.

3. Every so often, freeze in mid-sentence and stare off into space for several minutes. After a long, awkward silence, resume your sentence and proceed normally.

(St. Peter was standing at the gates of heaven. There was a long line of people whose credentials for entry he was checking. A person dressed in a white coat and stethoscope pushed their way to the front of the line saying, "I'm a doctor. I don't have to stand in a line like that." He was promptly turned away by St. Peter. Another doctor comes past the line, and walks right through. The first doctor challenged St. Peter on Doctor #2's easy admittance. St. Peter replies, "Doctor? That was no doctor. That was God. He likes to go to earth and pretend to be God."

--Joanne Rankin, RN to her physician, feeling that one good joke deserves another! He was not amused??

The doctor says I have anxiety and depression. My mechanic could've told me that. And then he gives me medication for this and I take a look at the side effects! Anxiety, dizziness, drowsiness, decreased or inability to perform sexually, bloating, seizures in rare cases ... Come on!! ? that's supposed to help?! --

-- Rich Fox, comedian, "The View" 3/4/99

( Signs You've Joined a Cheap HMO

1. Pedal-powered dialysis machines.

2. Use of antibiotics deemed an "unauthorized experimental procedure,"

3. Head-wound victim in the waiting room is on the last chapter of "War and Peace,"

4. You ask for Viagra. You get a popsicle stick and duct tape.

5.     Annual breast exam conducted at Hooters.