UPCOMING MEETINGS

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.

JANUARY NIGHT MEETING Monday, January10, 2000 7:30-9:00 pm Moses Cone AHEC Room 40 Topic: UNCG Professor Bill Karper FMS/CFIDS/ME Exercise Study	FEBRUARY NIGHT MEETING Monday, February 14, 2000 7:30-9:00 pm Moses Cone AHEC Room 40 Topic: General Discussion
DAYTIME SUPPORT GROUP Tuesday, January18, 2000 1:30-2:30 pm Jamestown United Methodist Church Topic: General Discussion	DAYTIME SUPPORT GROUP Tuesday, February 15, 2000 1:30-2:30 pm Jamestown United Methodist Church Topic: General Discussion

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

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

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.

MEETING NOTES

November Meeting Co-facilitators: Ann Simmons, Kevin Simmons, Dr. Ed Lurey, Margaret Smithey, and Fran Stanford.

Dr. Lurey was present with new information from a convention or seminar he had attended. He stated that it was the 18^th Annual Meeting on Pain which covered all kinds of pain from disease and illness with a focus on Fibromyalgia. (see attached handout). His talk was very informative. It seems that this doctor presented the group with research studies of a controlled group introduced to certain drugs ranging from low level doses of anti -depressants and slowly increasing to an effective tolerable dose, also studies with sleep aids such as Ambien, pain relievers like Ultram have been beneficial.

The studies concluded that drugs like SSRI and NSAIDS were not as useful as once thought by doctors because most patients tend to get worse.

These studies revealed that once an appropriate treatment for that particular individual is established and lessening of the symptoms appear from the use of Tricyclic drugs and other beneficial treatment, aerobic exercise and cognitive behavior therapy are the most globally effective treatments for this spectrum of illness. While Dr. Lurey explained that the brain is involved as a vital organ not functioning properly as reading, receiving and sending pain signals and sensations correctly. In comparison with a normal, retarded, insane, or emotionally disturbed person, our patterns are much different as well as the receipt of signals which travel to and from our brain and along the spinal column and nervous system.

There is a sensor study being done using mice placed on hot plates to see how they much heat they can tolerate by how often they raise their feet. He noted that there is a well established difference in the pressure tolerance or pain threshold of a normal person’s thumb nail as compared to what we feel. It seems that FMS along with people who suffer from IBS can tolerate pressure more on the top of the thumb nail. Therefore concluding that there is evidence of disordered sensory processing, autonomic and neuroendocrine dysfunction, and non-physiologic mechanisms that are operative in these conditions.

He also noted that while FMS is not a terminal illness there is no cure, but with diagnosis and treatment it can be managed through a combination of treatments. The healthcare professionals are beginning to recognize the relationship with other illness and symptoms co -existing in the same patient.

Because of these factors there is a new look at FMS, not in the head psychogenic, but in the brain physiologic. At one time some healthcare professionals called this illness depression, some believed that this illness followed depression, or was caused by lack of mobility or laziness and obesity, not enough exercise. More and more health care professionals are recognizing this illness as a chronic pain disorder and providing better treatment for their patients. Realizing that depression may follow the illness because of lifestyle changes from this debilitating condition of chronic pain, but depression is not the cause. Studies found that Fibromyalgia is not only a discrete disorder, but also a construct to explain the physiologic mechanisms, and most effective treatments, for a number of common medical conditions.

I should note at the start of Dr. Lurey’s presentation, his handout quoted an article from the Sept./Oct. 1997 issue of Arthritis Today an article entitled Fibromyalgia, Syndrome of the 90’s ; the author states... that there is no clear line that separates the biological versus psychological factors in manifestations of Fibromyalgia. Any form of stress, whether psychological or physical, triggers chemical changes in the body.

In my opinion, overall what Dr. Lurey said was informative and interesting, if we take into consideration that each case has to be looked at differently in respect to the type of onset, how long, what age symptoms first occurred, genetic history, body chemistry and how each person responds to certain medication, environmental and climate factors, other medical disease, allergies, chemical imbalances or sensitivities.

As we all know, what’s good for one group may not necessarily be good for another. It is hard to even know or find a individual that responds identically to the same medications or treatment. Personally, some things like certain medications I have taken and the exercise have been very harmful for me. Ultram for pain does not work, and the pain medications and sleep aids I’ve taken don’t do the job prescribed for, leaving me in a zombie state or the twilight zone and increase symptoms of other problems and side effects. Exercising in general, even starting with low level and trying to work up has been very damaging muscular and skeletally. I can tolerate low level aquatics if not overdone.

It could possibly be due to other underlying co-existing illness and disease such as the FMS/CFS/MPS/PTS, associated disc and back problems coupled together.

Conclusion: Some things we can agree on: that it is truly a challenge, we will not die from FMS, and we must learn to cope with and manage this illness through all avenues. I found my main highway to be spiritual. There is something about resting in GOD’s loving care and grace that makes a difference in my coping and adjusting. As Dr. Lurey said, this was presented at a conference he attended, some questions were asked at the end, some were skeptical and the majority had been there, done that, and paid the price with more pain.

We thank Dr. Lurey for keeping us up to date with the most recent conference, and for his genuine concern for our patients.

Our December meeting consisted of patients sharing/demonstrating the types of activity which had been helpful for them and not provoked relapse. This was very valuable. Dr. Charles Lapp, a national CFIDS expert, once shared that with these illnesses the patient has much to teach the researcher. Professor Bill Karper of UNCG will be our guest speaker for the January meeting, and share results from his FMS/CFS Exercise Program Study. Hopefully after these three months presentations, each patient will be presented with a well-rounded approach to modify to their own limitations. IMPORTANT:

The patient should always listen to their own body’s feedback for correct illness management. (Eds. note)

CFS CHUCKLES

Easy ways for PWC’s to get rid of Telemarketers

If they want to loan you money, tell them you just filed for bankruptcy and you could sure use some money.

If they start out with, “How are you today?” say, “Why do you want to know?”

Alternately, you can tell them, “I’m so glad you asked, because no one these days seems to care, and I have all these problems; my arthritis is acting up, my eyelashes are sore, my dog just died...”

This works great if you are male: Telemarketer: “Hi, my name is Judy and I’m with XYZ Company...”

You: Wait for a second and with a real husky voice ask, “What are you wearing?”

Cry out in surprise, “Judy! Is that you? Oh my! Judy, how have you been?” Hopefully, this will give Judy a few brief moments of terror as she tries to figure out where she could know you from.

If MCI calls trying to get you to sign up for the Family and Friends Plan, reply, in as SINISTER a voice as you can, “I don’t have any friends... would you be my friend?”

After the telemarketer gives their spiel, ask him/her to marry you. When they get all flustered, tell them that you could not just give your credit card number to a complete stranger. Tell the telemarketer you are busy at the moment and ask them if they will give you their HOME phone number so you can call them back. When the telemarketer explains that they cannot give out their HOME number, you say “I guess you don’t want anyone bothering you at home, right?” The telemarketer will agree and you say, “Now you know how I feel!” And then hang up.

QUOTES & NOTES

“To the world you might be one person, but to one person you might be the world.”

“Sometimes the majority only means that all the fools are on the same side.”

“I don’t have to attend every argument I’m invited to.” “Learn from the mistakes of others. You can’t live long enough to make them all yourself.”

“There are two things I’ve learned: There is a God. And, I’m not Him.” “Following the path of least resistance is what makes rivers and men crooked.”

“Your worst days are never so bad that you are beyond the reach of God’s grace.

And your best days are never so good that you are beyond the need of God’s grace.”

Between Gardens: observations of Friendship, Gardening and Disability ISBN 1-896095-55-0, $19.95. Written by Carol Graham Chudley and Dorothy Field by a sufferer of CFS and Post-polio syndrome. www.womenandchildrenfirst.com

Check out “2000 Peterson’s Guide to Distance Learning Programs” in your library or bookstore for learning in your home at your pace.

The Triangle Allergy Support Group says it“describes EcoSmart Technologies new insecticides that are safe for humans, Called EcoPCO insecticides, they are due on store shelves late summer 2000.”

I’m really sorry for the delay in responding—have been on extensive travel in the past 6 weeks, and missed your message. I’m happy to say that Pfiesteria activity was strongly discouraged by the major flooding from the hurricane. With any luck, it will be less active for 1-2 years because its populations have (to a major extent) been washed downstream and displaced from areas that are most optimal for its toxic activity. I informed the media about this information, which is probably why they were quiet (as you mentioned) -- they asked about it at length, but I explained that we should be focusing on a lot of other water quality problems that have resulted from the hurricane. Its effects on Pfiesteria are likely one of the few ‘benefits’ that this storm afforded. Thank you for your kind comments, and for your interest in our research.

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),

(If you don’t have a computer at home or at a friend’s, it is worth a short trip to your local library during their least busy times of 1:30-3:00 pm to print off free copies of this research info below. It shouldn’t take over an hour.)

FMA.NC@worldnet.att.net. (EMAIL Address for Fibromyalgia Network of NC) http://www.archinternmed.com (DePaul University research study published in October 11 Archives of Internal Medicine, challenging the CDC CFIDS prevalence figures: 800,000 instead of 400,000 Americans suffering from this. We believe there are many more.)

http://www.guidestar.org (Exhaustive info about nonprofit organizations. CFIDS Association of America listed.)

http://mapsonus.switchboard.com (Turn by turn directions, free from your doorstep to any where you need to go - even the docs! Helps on the getting lost problem, though it is not necessarily the quickest route.)

http://www.igive.com (select CFIDSERS as charity and portion of purchases will go to them to help indigent patients)

http://www.jobswarm.com (a comprehensive, fast-growing service that matches businesses with independent contractors (freelancers). The process is efficient, beneficial to both parties, and membership is absolutely free of charge. Freelancers can avail themselves of the site by submitting bids on a variety of project proposals offered in their field.

JobSwarm deals with a variety of job categories, from computer programming and graphics design, to marketing and translation services. The service is ideal for freelancer PWC/FMS’ers seeking temporary employment opportunities that will likely not interfere with disability income limits. JobSwarm is also a useful tool for businesses and non-profits that would like to outsource projects to competent professionals at a market-driven rate. Businesses need only submit a project proposal describing what it is they wish to outsource. Contractors will then make bids available to the business at the JobSwarm site for review. All talented PWC/FMS’ers are encouraged to take advantage of JobSwarm. I think it can benefit us all. Please see what you think:

(An article about Lauri H. and her Chiari malformation/CFS/FMS surgery in the Baltimore Sun Nov 14.)

http://v4.youclick.net/GoNow/a10004a15898a4958 (How Vagus Nerve Stimulation (VNS), an electrical stimulation therapy currently used to combat epilepsy, is a promising new method for treating patients with severe treatment-resistant depression.

ME (myalgic encepalopathy), CFIDS (chronic fatigue and immune dysfunction syndrome), FMS (fibromyalgia), MCS/IE (multiple chemical sensitivities), GWI (gulf war illness), NMH or POTS (neurally mediated hypotension or postural orthostatic hypotension) PWC (person with CFIDS/ME/FMS/MCS,etc.)

Lots of folks caught up with back renewal dues last year, but now it’s time for a new year! Please send your subscription dues as soon as possible so that we may continue to publish and provide you the latest information through BRAINSTORMS. $15 yearly subscription (from Jan-Dec 2000) should be made payable to: Greensboro CFS/FMS Support Group and mailed to

There are lots of other great articles such as those listed below which you can give to your doctor/lawyer, etc. in our bi-monthly publication which reaches out to those suffering from sister illnesses such as MCS, FMS, CFIDS/ME, GWI, porphyria.

Five Crucial Steps to Winning Your Disability Case In Our World (Latest Breaking News) Etc.