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DAYTIME SUPPORT GROUP DAYTIME GROUP Jamestown United Methodist Church Jamestown UMC
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| A CHAT ROOM founded by committee member, Mary Pretlow, is located at URL http:/www.ncchem.com/safe-arbor Her focus is to support the Christian community in prayer for CFS/FMS/MCS sufferers and related issues, however all interested are invited to log on! Our Support Group is also on the Web, courtesy of Earle Phillips at the NC Chemical Sensitivity Website http://www.ncchem.com/ And member, Christine Hagar’s great new CFS/FMS/MCS Forum may be found at: http://www.delphi.com/udontlooksick 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 . . . . . . . Contact Number: Myra Jackson (336) 229-7818 Lexington Group. . . Contact Person: Donna Hall, RN (336) 224-0156 -------- 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 meetings, as many members are very sensitive to odors and chemicals. Thank you for your consideration. |
NEWS, NOTES AND QUOTES
NEW YEAR’S RESOLUTION: UNDERSTANDING
Think about what you’d like to do to help make our community more "aware" of the scope of this illness on upcoming May 12th CFIDS Awareness Day and all year long. Contact a committee member with your solution/ideas!
NEW COLUMNS IN THE NEW YEAR
KNOW OUR MEMBERS . . . SPOTLIGHT ON OUR
VOLUNTEERS . . . FYI: FOR YOUR DOCTOR
Even though many of us are homebound, or cyclical attenders of our support group because of health issues, we want you to know each other’s stories. Each of us as a member has a special story and role in the support of our other members, even in illness.
We would like to begin this column in the next newsletter, as well as a SPOTLIGHT ON OUR VOLUNTEERS. If you would like to be one, meet us at our next committee meeting on the last Monday of February at Golden Corral, Oak Hollow Mall, High Point! Please let us know your previous careers, so we can help establish a connection with a volunteer need. Thank you for your integral part in these efforts.
FYI ... We’ll include an article/handout for you to "take along" on your next doctor visit to aid your physician in "understanding" our illness and treating our patients.
CFS CHUCKLES
A blonde went to the doctor and told him she knew she had FMS because she had pain whenever she touched any of the 18 trigger points. The doctor asked if she were a true blonde.
She asked, "Why?" He replied, "You have a broken finger." -
Tiff Pretlow
I can see clearly now the brain is gone (to be sung to the tune of "I can see clearly now, the rain has gone!"
Margaret Smithey, PWFMS
Great Idea! A calendar for those with CFS/MCS: Monday
Monday Monday - Rev. Kent Sealey, PWFMS
FOR SALE
Hardback copy of Osler’s Web" at half-price. Contact Margaret Smithey (282-7830).
VALENTINE’S DAY GIFTS
WEB TV - GREAT VALENTINE’S DAY GIFT for patient/sweetheart without computer. You can get free E-mail to/from CFIDS friends; info on your disease and non-isolation while lying down. Approximately $160 for purchase, $20 a month. Heard Big Lots has $49 unit. Call Mary Pretlow for more information.
Many people with CFIDS seem to be unable to protect self because they are so giving to others. Help your PWC adapt patterns/instincts/behavior necessary to protect their recovery.
Give your PWC jewelry - a Medic ID necklace/bracelet for emergency purposes- 1-800-439-8899 $14.95+S&H!
Contact your local school of massage therapy for reduced fees, and pay for or give your PWC a therapeutic massage..
Send a "Valentine" to someone else with CFS/FMS/MCS.
| CFS COOKS? Great sweet recipe for disabled cooks! (Pleeze limit intake?) Place peanut butter between two Ritz crackers. Melt almond bark or Eagle Brand vanilla coating in glass bowl in microwave for 90 seconds, then stir and "mike" at 15-second intervals, stirring until coating is melted. Using fork, dip crackers in coating, tapping fork on edge of bowl to minimize excess. Place cookies on waxed paper on cookie sheet, place pecan on top of each, and store in refrigerator to give your Valentine! Maximum time: 15 minutes. |
CARING - A GIFT OF LOVE
Since many PWC’s experience "reactive" depression - a normal response to chronic, life-altering illness - we hope this will be helpful in "informal counseling" of PWC friends going through a "rough patch," and for your own information. Professional assistance may be found at local crisis counseling centers (listed in your phone book) or by consulting a PWC-friendly therapist from our Health Professionals List. If you need assistance, please call our physician liaison. "Thank you" to PWC Tom Castle for the following research notes compiled for Brainstorms. FROM THE BOOK, Feeling Good, The New Mood Therapy by David D. Burns, M. D.
5% of depressed people "do" die. That is 25 times that of the general population.
No age group, race or social class is exempt.
Suicide is an unnecessary impulse, easily overcome and eliminated with cognitive therapy.
Why do depressed individuals so frequently think of suicide, and what can they do to prevent such thoughts?
- 1) When depressed, you distort memories of the past (and only remember negatives).
- 2) Death wish - (depressed people tend to have this) an active
Death wish is more dangerous (This is talk is about a method of death, make plans, etc. As a general rule, the more well-Formulated plans, the closer they are to carrying out.)
The worst mistake is not talking to a professional - They are trained to detect seriousness and react.
A dangerous myth is that attempts are just "attention-getters."
All thoughts are to be taken seriously.
If an individual has "deterrents," they have much better chance or reason to not carry through.
Deterrents: family, friends, religious beliefs, etc.
If one has no deterrents, obviously possibility is greater, and possibility is greater if individual is:
- 1) severely depressed to state of hopelessness
- 2) has past history of attempts
- 3) has made concrete plans, methods
- 4) has no deterrents.
- Does a person have the right to take own life?
- Do you have a right to intervene? Yes
It would be naive to say depressed people don’t have a real problem. Each of us has problems to a degree; finances, interpersonal relationships, health, etc. However, when depressed, it is easy to confuse a legitimate illness, for example, with being lazy, worthless, etc.
Easy to confuse feelings with facts.
Such difficulties can nearly always be coped with in a reasonable manner without suicide. In fact, meeting "challenges" can be a source of mood elevation and personal growth.
Dr. Burns promotes use of anti-depressants if depressed people can overcome the myths of drugs, which are: If I take drugs, I won’t be myself. Drugs are dangerous. Side effects. Means I’m "crazy" if I take drugs. Others look down on you for taking anti-depressants.
There are many clinically proven methods for "drug-free" treatment of depression:
- 1) Build self-esteem (discuss ways)
- 2) Be around people, especially positive people.
- 3) Learn to "talk back" when under fire of criticism.
- 4) Record negative thoughts; write why and how they are distorted, and then write rational responses
Ex: Negative Thoughts Distortions Rational Responses
- Shattered shells discarded
- No one treasures
- A beach not desired for
- Obvious pleasure seeking
- Except the rare fisherman
- The offshore boats circle
- Around their quarry
- Hunter and the hunted
- Alone
- On the beach of life
- Isolated by a disease
- Plucked from a happy life
- Tossed mercilessly out of ocean beauty
- Onto the pounding surf
- What remains
- Of life lies
- Like crushed shells no one wants
- Do we lie abandoned, but for God?
- Trodden carelessly underfoot without cause
- Beaten and broken
- That cry comes forth
- Years of cries from torturous cavalier treatment
- Of passers-by.
- But we forget
- We are not one alone
- He is here ... Emmanuel
- God with us.
- M.H.Auten 1998
"Anyone who dares to be, can never be weak."
INVICTUS: a Latin word meaning unconquered
AN ACT OF LOVE AND TRIUMPH
England’s Derek Redwood was poetry in motion as he sprinted out in front of the other competitors in the Olympics track and field competition. As his amazing lead swiftly stretched out, he stopped suddenly and collapsed on the track - a hamstring injury incapacitating him abruptly in the middle of his swift, winning race. He shocked observers again as he attempted to get up from the track and limp to the finish line. His dad came out of the stands, pushing past security guards to come to the aid of his son. With his arm around his weeping son, he said, "Come on, son, you don’t have to do this." His son kept struggling toward the finish line with tears streaming down his face. He knew he couldn’t win the dream in the way he had trained for years, but he was determined to finish - a noble act of a man who would not quit the race. His dad walked beside him, supporting him in his quest to finish, and to cheers of applause, they limped over the finish line. I salute each of you, my noble friends, for not quitting the race, and send you our love and support as we begin "the race" for this NEW YEAR.
All of heaven is cheering us on - let us finish the race that is set before us. - Editors
CHRONIC FATIGUE IS REAL ILLNESS by Dr. Paul Donohue,
High Point Enterprise, November 15, 1998.
Dear Dr. Donohue: I am tired all day long, from the moment of waking, until I go to bed. I have consulted two doctors. One said I had chronic fatigue syndrome. The other said there is no such thing. Whom do I believe? - M.M.
Even though there are no lab tests, no X-rays, no scans for chronic fatigue syndrome, experts with impeccable credentials say there is such a thing. I, too, am a believer. Some of the criteria that define this syndrome are memory impairment. recurring sore throats and tender lymph nodes. Muscle and joint pain are common. So are headaches. A night of sleep fails to refresh a patient who experiences overwhelming fatigue, which usually persists for six months.
The biological basis for chronic fatigue rests on several facts. It is found in people with diverse backgrounds, occupations, and ethnic heritages. Often it’s ushered in by a viral illness. Both observations argue against chronic fatigue syndrome being a hypochrondriacal illness. Its cause is puzzling. Perhaps that’s why some doctors doubt it’s a bona fide illness. Researchers have looked for a viral cause. Some implicate a persistent and abnormally low blood pressure. No one has offered conclusive evidence for a cause.
If your blood pressure is on the low side and if it dips when you stand up, ask the doctor if it’s OK to add more salt to your food. (Ask the believing doctor.) A nutritious, high-fiber diet and eight glasses of water a day often have a beneficial effect. Exercise might free a person from the grip of chronic fatigue. Start out modestly with five minutes of walking. Every week add one or two more minutes until 30 minutes of continuous walking have been reached.
PATIENT ADVOCACY -- Melinda Vadas, PhD
Be sure and Call Duke Power to have your name placed on their Permanent Disability List (1-800-669-3766 Tammy Jones). Doctor must certify relocation in case of power outage is not recommended because of environmental sensitivities, etc.
Because of medical need you will be on their priority list on restoring power. IN OUR WORLD
| CAUTIONS The following are anecdotal notes not confirmed by double-blind studies, but are presented for your information: After several reports of Tasmar-related liver problems and three deaths nationally, Dr. Jay Goldstein will only use this medication currently in conjunction with intensive liver profile monitoring (2 times week.) We have received a Greensboro PWC report of kidney failure with sudden withdrawal of high dosage neurontin (1200 mg per day.) Extended use of cordless phones and residence proximity to high tension power towers seems to be severely worsening some group patients’ cognitive problems with close extended exposure. Two serious BP-drop reactions during minor surgeries were remediated because copies of Dr. Lapp’s anesthesia protocol was shared beforehand with their doctors. Two patients had rare internal resorption dental condition related to autoimmune or early childhood injuries of tooth. Anyone who has had a similar experience since onset of CFIDS, or has had personal experience using Mannatech glyconutrients, please share your results with Dr. Mitch Bloom or MelindaVadas. If taking IV saline for NMH per Dr. David Bell/Streeten protocol; have BP cuff handy for home monitoring; and Gail Kansky reports her daughter found it helpful to have diuretic from the doctor on hand in case BP gets too high. Insurance might pay for this treatment if physician-coded under "hypovolemia."
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PRESS RELEASE EXCERPTS
CFIDS Association of America: CFIDS is far more common than AIDS, HIV infection or lung cancer. CDC researchers have found CFS is a far greater health problem than previously known with an extensive study estimating overall prevalence of CFS at 183 cases per 100,000. In women overall, 303 per 100,000; among Caucasian women the prevalence nearly doubled to 340 per 100,000; men overall 53 per 100,000. They concluded that CFS is a serious public health concern in women: 3 times more common than HIV in women, 25 times rate of AIDS in women, according to Dr. William Reeves, chief of CDC branch handling the study.
SURFING THE NET
Excerpts from lecture notes by Dr. Paul Cheney, MD, PhD
Charlotte, NC CFIDS Support Group, May 7, 1998
Source: www.cfidsfoundation.org/lecture/CheneyLecture.htm
TREATMENT PROTOCOLS
LEVEL ONE
Lifestyle adjustments - find your limits
Modified elimination diet - determine foods which make you sick
Activity limits - types of exercise
Aerobic is BAD. It actually kills mitochondria causing permanent damage
Anaerobic is GOOD. You can lift weights, stretch, isometrics, anything you can do in 10 sec. Aerobic muscles are used for posture. Anaerobic muscles are used to lift. This is why CFIDS patients can lift weights while they cannot walk around a mall and shop without getting exhausted. Rebounding or bouncing is BEST - use trampoline or bouncing chair, most efficient exercise and increases lymphatic flow, is healing to the immune system.
Beliefs and attitudes - change ones that make you sick; example, your value is not measured by your work.
LEVEL TWO
Neuroprotection - It fries at lower threshold levels. Therefore, information density will confuse, sensitivity to light, pain intensified, cannot sleep, hearing is amplified. Drugs which treat this are: magnesium, klonopin, neurontin, doxapin, nicotine and narcotics. These need to be titrated at small optimum doses different for each patient. These drugs preserve the brain from damage.
Excerpts from CFS International Research Meeting, Sydney,
Australia Conference
Review by Dr. Charles Lapp
Courtesy of: www.cfidsfoundation.org//appreview.htm
Dr. Bjorn Regland of Sweden recommended a trial of B12 in all PWCs and suggested that supplementing with folate could saturate even poorly-active reductase and make the B12 work better.
Dr. Peter Rowe, John Hopkins, describing therapies for neurally-mediated hypotension: 10 grams salt, 2 liters water ingested daily, the limitation of cow’s milk, possibly using dexedrine spansules, avoidance of sunlight and heat, avoidance of standing in place and sitting with the knees above the hips, potassium supplementation...ritalin. Dr. Kenny DeMeir Leir confirmed previous findings of decreased work ability, decreased oxygen consumption, and early onset of anaerobic threshold in PWCs compared to controls.
Study in collaboration with Dr. Peter Behan, Scotland, demonstrated cardiac perfusion defects in 7 out of 10 PWCs ... similar to one seen in syndrome X, which is due to a cellular membrane defect.
Excerpts from Dr. Hugh Calkins’ (Johns Hopkins cardiologist) Lecture
MASS.CFIDS June 6, 1998. Notes taken by Diane Rose.
Courtesy of: http://wwwcais.net/cfs-news/calkins.htm
All doctors should test BP laying down and standing up; take it laying down, then standing for 5 minutes.
A free Physician info packet and Patient info packet on NMH is available from Johns Hopkins University (1-800-624-4562). In the cardiology community, CFS (and NMH link) is getting more legitimacy.
Many people with NMH learn to sit down before they faint. Dr. Calkins was struck by the cognitive symptoms of CFS; this is a problem linked to lack of blood flow to brain. Abdominal symptoms: when there are blood pressure problems, irritable bowel, pain, etc., lack of blood flow to stomach (body trying to redirect blood flow to brain); pain: blood flow to skin level problems.
Part of brain that controls heat/cold intolerance is right next to part of brain that controls BP.
Membership Greensboro CFIDS/FMS/MCS Support group:
| Disclaimer: This newsletter serves as a clearing house for information concerning CFIDS and/or FMS. Some of the information contained herein is intended to help patients and their physicians to make informed decisions about their health. However, the Greensboro CFS/FMS Support group does not dispense medical advice or endorse any specific medical hypothesis or product. |
