Thanks to Earle Phillips, who contacted the powers that be this year: May 2003, MCS Awareness Month and May 12, 2003 International Awareness Day 

May 2003, CFIDS Awareness Month and May 12, 2003 International Awareness Day Feel free to use the full-page announcements in this month's Brainstorms to let others know about the month-long observance for MCS/CFIDS. 

Relating to CFIDS/FMS/MCS/GWS/MS 
1) Find out all you can about their illness so you can be aware of what they are experiencing. 
2) Try to keep things in regular places the PWC uses, so when they do things, they won't have to waste strength looking, adding to confusion they're dealing with already, especially remembering cognitive difficulties putting things together at times. 
3) Allow PWCs to set their own priorities, make decisions, learn what is best for them. 
4) Blame is not the issue, guilt is not the issue… meaningful survival is. 
5) Realistic reassurance, self-value is not based on what you DO. 
6) Discuss one thing at a time, and perhaps none when they are in a time of relapse. 
7) Tune in to their level of strength, etc. Build up your awareness of any physical signs, although this may be difficult. Notice eyes, gait, pallor and speech. Accept where they are at a given time, not striving always to be like used to be. 
8) Avoid telling them how they should FEEL vs. thought. Don't deny feelings…they are feelings… not question of right or wrong. 
9) Walk with them and be their friend. 
10) Genuine laughter with them…some actions are funny (not odd)…not attacking person, but actions provoked by illness sometimes strike both of your funny bones (words come out backwards, for ex)… 
(sometimes it won't seem funny anymore). 
11) Look after your own self, and others in family/group do the same as much as possible, and allow PWCs to look after themselves as much as they can. This is big change for the PWC, many of whom have joy in helping others to look out for themselves. 
12) When you assume a task, do it all, cleaning up after. It's not helping if leaves another job to be done where there isn't ability. 
13) Avoid advice unless requested. 
14) Help to keep right foods on hand, and help with preparation as needed, or bring in a meal. Become aware of any measures that need to be taken to fill in where PWC cannot. Help plan and carry out, making PWC aware that some of load is willingly shared, and concessions will be made for the home life/wonderful friendship. 
15) Active listening, not trying to read/watch TV at same time when they need to talk. 
16) Live in NOW, working within framework which you have, not "used to." Pattern of life is changing. 
17) Remember, when the PWC pushes the illness to go beyond what they can at the moment, the illness pushes back. Aim at keeping money (strength) in the bank, not using it down to last penny 
(ounce). 
18) Be alert to anything that "pushes," add this to your memory bank and possible remedies in dealing with/avoiding penalties in future. 
19) Give the PWC your permission to look after themselves. Many PWCs have been caretakers and feel "guilty" if they have to take time out for themselves. - collected from myriad sources; if you have any to add, share with us! 

Is Your Doctor's Office Accessible? If not, the Disability Rights Division of the U. S. Department of Justice wants to know. The Justice Department is collecting statistics in preparation for issuing new guidelines on accessibility for hospitals and physicians' offices. The Department would like to hear from people with disabilities - especially women using wheelchairs - who have been unable to enter a doctor's office because of steps; unable to have examinations because they could not safely get onto examination tables; or unable to use mammography or X-ray machines because of their wheelchairs or small stature. Persons who would like to contribute their personal stories may send them via e-mail to Disability Rights Division lawyer Maisels at Amanda.Maisels@USDOJ.gov . 

Want To Know What You CAN Eat? Check out the new revised edition of America Exhausted by Dr. Edward J. Conley, founder and medical director of the Fatigue and Fibromyalgia Clinic of Michigan, one of the nation's leading centers for the treatment of Chronic Fatigue Syndrome and Fibromyalgia. www.cfids.com 

AP - Pigeons Help Detect Gas in Attack LIVING SUPPORT AREA 7, Kuwait - Nearly a month ago, the Marines of the 7th Regiment were given 43 chickens to raise and nurture, chickens that were to repay them by helping detect a possible Iraqi chemical or biological attack. Within a week and a half, 42 were dead, although no one suspects foul play. On Friday, the Marines got a new avian force - a company of pigeons. The birds are meant to be the military equivalent of a canary in a coal mine. during a possible invasion of Iraq, they are to ride with a caretaker in armored vehicles. If they start to get sick, it could indicate a chemical attack and give the Marines a chance to put in their gas masks. The United States says Iraqi President Saddam Hussein has several chemical and biological weapons at his disposal for use against U. S. Troops. President bush has threatened to invade Iraq to force it to give up those weapons. U. S. troops have prepared for the worst. They have been vaccinated against anthrax and smallpox. They have gas masks belted to their hips at all times and have been trained to put them on in nine seconds with their eyes closed and while holding their breath. They have been issued special camouflage suits with charcoal linings, rubber boots and gloves, atropine to counteract nerve gas, and packets of charcoal to deactivate any chemicals that may land on them. To detect an attack, the Marines have special chemical sensitive tape and paper, a chemical agent monitoring machine, a packet filled with detection ampules and a vehicle, the Fox, designed to take test samples while moving. - Burlington, N.C. Times-News, Saturday, March 15, 2003 
(Ed's Note: This sounds like treatment based on Duke's Dr. Abdou-Donai's work and MCS treatment protocols.) 

From Brainstorms archives: Center for Occupational & Environmental Medicine, Allan D. Lieberman, MD, Medical Director, shares these and other toxic-free cleaning solutions at website http://www.coem.com/household.htm : A good general rule is: IF YOU CAN'T EAT IT, DON'T INHALE IT. Whether a chemical is ingested, inhaled, or absorbed through the skin, it enters the bloodstream with the same adverse results. The following are some safer alternatives for household cleaning and they really work; however, when choosing any cleaning agent, test it to determine whether it is safe for you. Laundry Detergent - Commercial detergents free of perfumes and fragrances, such as ALL Free & Clear, Cheer-Free, Tide Free, etc. Laundry Whitener - 20-MULE TEAM BORAX. Fabric Softeners - ½ cup vinegar added to rinse water. Chemical Neutralizers - ½ to 1 cup baking soda added to wash load (products will remove scents and help break down chemical build-up in fabrics). Stain Remover - Hydrogen Peroxide. Sea Salt. Scouring Powder - Baking soda on a sponge. Furniture Polish - Olive oil. Window Cleaner - Vinegar (1 tablespoon to 1 quart water). Disinfectant - BORAX (1-1/2 cup to 1 gallon hot water). Room Deodorizers - BORAX - sprinkle around room. A natural deodorant and anti-mold agent (Avoid scented deodorizers. They just mask odors and confuse your sense of smell.) This might not be good idea for those who have pets who have their paws on the carpets. 

Crimson Crescents Facilitate CFS Diagnosis by Robert B. Marchesani, Infectious Disease News, November 1992. MINEOLA, NY- 

A new physical finding in chronic fatigue syndrome patients may finally give clinicians what they have only dreamed about, a clinical way to diagnose the disease. Burke A. Cunha, MD, discovered what he called crimson crescents in the mouths of 80% of his CFS patients. 

After the word got out, Cunha received calls from other parts of the country. Physicians began telling him that they also were finding the crimson crescents in their patients once they looked for them. "When we look inside somebody's mouth, infectious disease doctors and internists instinctively go right to the back and look at the pharynx. When they do that, they miss these crimson crescents because they are on the side. People have missed them for years," said Cunha, MD, chief, infectious disease division, Winthrop-University Hospital, Mineola, NY. 

For the first time physicians may have a specific indicator to look for on physical examination of chronic fatigue syndrome patients, not unlike the bull's eye of erythema chronicum migrans in Lyme disease patients. 

"If your patient has crimson crescents, you now can say it is probably chronic fatigue syndrome," Cunha said. Cunha's crimson crescents are located on both sides adjacent to the back molars. … They are present as a crescentic membrance of tissue that points toward the uvula. During a tonsillectomy that membrane is removed, which is the anterior pharyngealpillar. This area is crimson and looks like a crescent moon chopped in half because the base goes into the tongue. The top of the crescent bows in toward the middle such that each side mirrors the other. Cunha explained margins are not as sharp. They are located posteriorly where the tonsil would have been before it was taken out. 

So even patients who had their tonsils removed still present with the crescents but the location and appearance are modified, according to Cunha. They are always bilateral, and they can be very bright, which is why he called them crimson instead of purple. These crescents last for months and gradually fade as the disease goes into remission. When the patient gets sick again, the crescents usually get redder. In chronic fatigue you always find the crescents alone. The rest of the pharynx is uninvolved," he said. There is a small portion of the normal population that may also present with these crescents. "If you get a patient with a sore throat in the office, he or she can have crimson crescents, and the back of the throat is red," Cunha said. 

Cunha found crimson crescents in 3% to 5% of non-chronic fatigue patients who presented with non-specific sore throats. Patients who present with mononucleosis or Group A strep do not have the crescents, nor do those with cytomegalovirus pharyngitis or the common viral pharyngitis, according to Cunha. 

After seeing many patients in a chronic fatigue study center at Winthrop Hospital, Cunha has his own beliefs about the etiology of CFS. "I believe that the virus that causes chronic fatigue comes from young adults or children who give it to adults. The young child recovers from the illness but the young adult gets a sore throat and some go on to develop the chronic fatigue in adults. I do not know why, but that intrigues me," said Cunha who is also professor of medicine at the State University of New York at Stony Brook Health Sciences Center School of Medicine. 

Cunha is trying to grow virus out of these crescents in an attempt to discover their cause. "The problem is when anyone does antiviral throat cultures, clinical labs are not equipped to grow HHV-6. In addition, with viruses you have to go deeper than just the surface because they live within cells. So my next step is to biopsy the crescents," Cunha said. Since there is no test for CFS, the physician must infer the disease from other sources. "But the most consistent lab evidence that we look for are elevations of coxsackie B-titers and elevations of HHV-6 titers in combination with the decrease in the percentage of natural killer T cells," Cunha explained. "If the patient has two or three of these abnormalities in our study center, then he or she fits the laboratory criteria for chronic fatigue. 

Nearly all patients with crimson crescents have two out of three of these laboratory abnormalities," he said. Cunha's finding is especially promising for physicians who practice too far from a lab to get such evidence. "If you are a physician out in the middle of nowhere and you can't get HHV-6 titers and you can't get the natural killer-cell percentage, then the crimson crescents may be the only way besides history that can suggest the diagnosis," Cunha told Infectious Disease News. 

This article was reprinted by the CFIDS Association of America, Inc. publisher of the CFIDS Chronicle 800/44-CFIDS by permission of Infectious Disease News. Volume 5, Number 22, Nov. 1992. http://www.immunesupport.com/93sum007.htm . 

Subchemical Hypothyroidism and ME/CFS There is a further interesting contribution to the on-going debate as to whether some people with ME/CFS might have defective thyroid gland function (ie hypothyroidism) despite having normal thyroid function (blood) tests and so could benefit from treatment with thyroxine.

 Last year there was a report in The Lancet (ref: 2002, 360, 2081-2082) which concluded that the presence of thyroid peroxidase autoantibodies is a strong predictor of hypothyroidism in patients with levels of TSH (one of the standard blood tests for measuring thyroid function) conventionally regarded as normal. The authors of today's report (Wikland et al from Sweden) agree that the issue of autoimmunity (where the body's immune system starts to produce harmful antibodies against its own tissues) should be seriously addressed in chronic fatigue patients. They have already reported that fine-needle aspiration cytology (ie taking a minute sample of thyroid tissue) provided unequivocal evidence of chronic autoimmune thyroiditis in around 40% of the chronic fatigue patients they examined (ref. Lancet, 2001, 357, 956-957). And although the levels of TSH were scattered in this group, there was a favourable response to thyroxine regardless of the baseline TSH concentration. 

Wikland et al conclude that fine-needle aspiration cytology has a higher diagnostic sensitivity than antibody assay in showing thyroid auto-immune activity and they propose that patients with signs of hypothyroidism not meeting conventional biochemical (ie blood test) criteria, but showing definite evidence of thyroid autoimmunity, should be labeled as having 'subchemical hypothyroidism'. These observations add further support to carrying out research into the possible role of autoimmune thyroid dysfunction in ME/CFS. - Charles Shepherd, Co-Cure. 

Gulf War Syndrome, The Sequel Excerpts from article by Steven Rosenfeld, 4/8/03 Commentary Ed/Audio Producer, TomPaine.com "People are sick over there already," said Dr. Doug Rokke, former director of the Army's depleted uranium (DU) project. "It's not just uranium. You've got all the complex organics and inorganics (compounds) that are released in those fires and detonations. And they're sucking this in…You've got the whole toxic wasteland. When Rokke sees images of soldiers and civilians driving past burning Iraqi trucks that have been destroyed by tank fire, or soldiers or civilians inspecting buildings destroyed by missiles, and these people are not wearing respirators, he says they all risk radiation poisoning, which can have lifelong consequences. "He's going to be sick,"Rokke said, "He's supposed to have full respiratory protection on. That's required by his Common Task (training manual). And when he comes by and he's downwind, he's supposed to have a radio-bio-assay. That's urine, feces and nasal swabs within 24 hours." Veterans…say the military has known about low-level radiation poisoning since the development of atomic weapons in the 1940s. They say the military will not disclose the DU test results and that it's almost impossible to do medical research while combat rages. (Eds note: DU degrades into lead.) 

A Delicate Balance, Living Successfully with Chronic Illness, by Susan Milstrey Wells, Insight Books, NY, NY. "There is a long road between becoming sick and accepting life with a chronic disease. Susan Milstrey Wells, a journalist who has lived with chronic illness for half of her life, ushers readers through the steps that every person with chronic illness treads. A Delicate Balance follows 21 individuals, including the author herself, in the quest to: · find a comprehensive diagnosis; · locate a capable and caring health care provider; · research and try traditional or alternative treatments; · make sense of their powerful emotions; · strengthen relationships with family and friends; · make significant career decisions; and · reflect on how illness changes their overall lives. A Delicate Balance is a must read if you have a chronic illness, love someone who does, or care for these patients in your medical, social work, or therapeutic practice. You will be amazed at how difficult life with chronic illness can be, and how healthy individuals can become when they find a delicate balance in their lives." 
(Eds. note: maybe the library or a friend has a copy of this book you can borrow.) 

"Chemical injury can cause severe, often disabling multi-system complaints, which may persist for months and at times years after chemical exposure has ceased. Physicians who see chemically injured patients are frequently baffled when they face a patient with multiple complaints, which do not fit into a known diagnostic disease category. Furthermore, regular laboratory tests (e.g. CBC, liver function tests, sedimentation rate, urinalysis) are often normal as is a cursory physical examination. "The diagnostic exploration of a chemically injured patient is a new field, which is difficult for the inexperienced physician. Chemically injured patients often complain of impaired cognitive and memory functions, intermittent confusion and disorientation, changes in behavior and mood, word-finding problems, sleep disorders, decreased libido and potency. At times they complain of seizure-like events. They also often report recurrent flu-like symptoms, fatigue and exhaustion, malaise, headaches, and chronic pain. Skin rashes, gastrointestinal complains, and other health effects may also be present. Different patients may react differently to a given chemical or group of chemicals." - G. Heuser, M.D., Ph.D., P. Axelrod, and S. Heuser, M.A. -  www.iicph.org/docs/ipph_Defining Chemical_Injury.htm   

Why Women Cry…A little boy asked his mother, "Why are you crying?" "Because I'm a woman," she told him. "I don't understand," he said. His mom just hugged him and said, "And you never will." Later the little boy asked his father, "Why does mother seem to cry for no reason? "All women cry for no reason," was all his dad could say. The little boy grew up and became a man, still wondering why women cry. Finally he put in a call to God. When God got on the phone, he asked, "God, why do women cry so easily?" God said, "When I made woman she had to be special. I made her shoulders strong enough to carry the weight of the world, yet gentle enough to give comfort. I gave her an inner strength to endure childbirth and the rejection that many times comes from her children. I gave her a hardness that allows her to keep going when everyone else gives up, and take care of her family through sickness and fatigue without complaining. I gave her the sensitivity to love her children under any and all circumstances, even when her child has hurt her very badly. I gave her strength to carry her husband through his faults and fashioned her from his rib to protect his heart. I gave her wisdom to know that a good husband never hurts his wife, but sometimes tests her strengths and her resolve to stand beside him unfalteringly. And finally, I gave her a tear to shed. This is hers exclusively to use whenever it is needed." "You see my son," said God, "the beauty of a woman is not in the clothes she wears, the figure that she carries, or the way she combs her hair. The beauty of a woman must be seen in her eyes, because that is the doorway to her heart - the place where love resides. - Sent in by sandyandmrt2@webtv.net