Still no treatment in Europe for the 14 million FMS patients trapped in pain!

From the FMS Global News Desk of Jeanne Hambleton (UK)

Press Release from ENFA – 29.04.2009

Brussels, (29.04.2009)

Last week was high on activities for the Fibromyalgia community, on one hand the European Network of Fibromyalgia Associations (ENFA) met with the European Health Commissioner Ms Androulla Vassiliou1. And on the other hand the European Medicines Agency (EMEA) gave another negative decision for a treatment for fibromyalgia in Europe2.

Ms. Pam Stewart, Vice-President of European Network of Fibromyalgia Associations (ENFA) and chairman of the trustees of Fibromyalgia Association UK, said one of the biggest challenges that the patients have been facing is the lack of officially recognised medical treatment options in the European Union.

By comparison there are three drugs in the United States of America approved by the Food and Drug Administration: Cymbalta from Eli Lilly, Lyrica from Pfizer and recently authorised Savella from Forest and Cypress (Pierre Fabre).

Last October, Cymbalta received a negative decision from the EMEA and last week was the turn of Lyrica said Ms Stewart. One dossier is still remaining to be evaluated by the EMEA: Savella. Each of these drugs has a limited success and judged alone leads to their failure to get approval.

However with a full range of treatment options, more people with fibromyalgia could have reduced levels of pain. This could enable them to embark on a management programme to significantly improve their quality of life said the Vice President.

“We are constantly hearing from people diagnosed with fibromyalgia that their doctor tells them there is no treatment because no approved guidelines or medications are available. Medical professionals that do not have time to research treatment options should have clearly signposted guidelines for effective treatment options. No one should be sentenced to a life of pain, she said.

“Patients across Europe are currently using these medicines off label. However, the European Medicines Agency told European Network of Fibromyalgia Associations that this is a common situation already faced in other disease areas such as cancer, and the situation with off label use cannot be taken into consideration in the assessment of medicines for which a marketing authorisation is sought.

“The difference with Fibromyalgia is that patients in the UK, for example, are unlikely to be prescribed any of these effective drugs because they have not been officially approved for Fibromyalgia. Patients are left with inadequate treatment options and although these drugs can be purchased over the Internet, this means their use is not monitored and people could be at the mercy of unscrupulous suppliers, which could put their lives at risk,” said Ms. Stewart.

Another example, coming from Germany, concerns the social status of patients since they are labeled as “depressive patient” for their life insurance or health insurance in order to have their drugs fully reimbursed by the National Health Insurance. In order to get any effective medicines, doctors should not diagnose fibromyalgia at all because the medicines are not indicated for fibromyalgia.

At the same time, an ENFA delegation was meeting with the European Health Commissioner Ms. Vassiliou. The meeting was only a natural step, concluding ENFA’s activities on the ‘European Institutions Fibromyalgia Awareness Campaign’ launched in 2008 on World Fibromyalgia Day.

Since the commencement of the campaign last May, with the support from 418 Members of the European Parliament, the Written Declaration on Fibromyalgia was adopted by the European Parliament in December 2008. The written declaration was necessary to raise awareness to all the European politicians from the 27 member states. It also helps create a mapping of the disease status disparity across Europe and increase awareness of better diagnosis and treatment.

“However, we realised that without any officially approved treatment options available, it was almost impossible to properly raise awareness of Fibromyalgia. The patient petition with over 27,000 signatures from all over Europe that MEP Adamou voluntarily hand delivered to the Health Commissioner, clearly demonstrates the frustration from the fibromyalgia community and strong and urgent needs to have treatment options to be officially available. The Fibromyalgia community is left with one hope to see maybe Savella drug approved before the summer. But unfortunately, the hope for a multiple choice of treatment in Europe seems to be lost.

“The European Network of Fibromyalgia Associations and all its associations have for years raised awareness on Fibromyalgia among national and European politicians, health professionals and the general public, and will keep on being active as long as it is necessary,” the Vice President.

About ENFA

ENFA is a network of patient association and support groups working in close consultation with the national association in the relevant country. Our joint missions are to conquer the myths and misunderstandings around Fibromyalgia. The network will help collectively push forward the boundaries which currently exist in understanding, experiencing and treatment of Fibromyalgia. Our main goal is to see Fibromyalgia receiving the recognition it deserves across Europe as an illness in its own right.

About Fibromyalgia

Fibromyalgia is a complex disease with chronic widespread pain as the defining symptom and various additional symptoms including fatigue, non-restorative sleep, morning stiffness, irritable bowel and bladder, restless legs, depression, anxiety and cognitive dysfunction often referred to as “fibro fog.” All of these symptoms cause serious limitations in patients’ ability to perform ordinary daily chores and work and severely affect their quality of life. Fibromyalgia imposes a large economic burden on society as well as on affected individuals. A study shows that an average patient in Europe consults up to 7 physicians and takes multiple medications over 5-7 years before receiving the correct diagnosis. The debilitating symptoms often result in lost work days, lost income and disability payments.

In fact, a Dutch study in 2005 estimated that the average annual cost of fibromyalgia was €980 million in the Netherlands. Research in the UK has shown that diagnosis and positive management of Fibromyalgia reduce healthcare cost by avoiding unnecessary investigations and consultations.

For more information on the European Network of Fibromyalgia Associations (ENFA) contact Ms. Pam Stewart Vice-President of ENFA Brussels@enfa-europe.eu; http://www.enfa-europe.eu.
1 On Wednesday 22 April in Strasbourg, for more information visit http://www.enfa-europe.eu; 2 On Thursday 23 April in London, for more information visit http://www.emea.europa.eu

Caffeine Myths and Facts

From the FMS Global News Desk of Jeanne Hambleton (UK)
Courtesy of WebMD

Caffeine myth or caffeine fact? It is not always easy to know. Chances are you have some real misperceptions about caffeine. For starters, do you know the most common sources of caffeine? Well, maybe two of the sources are not too hard to name — coffee and tea leaves. But did you know kola nuts and cocoa beans are also included among the most common caffeine sources? And do you know how much caffeine content can vary from food to food? Turns out it is quite a lot actually, depending on the type and serving size of a food or beverage and how it is prepared.

Caffeine content can range from as much as 160 milligrams in some energy drinks to as little as 4 milligrams in a 1-ounce serving of chocolate-flavored syrup. Even decaffeinated coffee is not completely free of caffeine. Caffeine is also present in some over-the-counter pain relievers, cold medications, and diet pills. These products can contain as little as 16 milligrams or as much as 200 milligrams of caffeine. In fact, caffeine itself is a mild painkiller and increases the effectiveness of other pain relievers.

Want to know more? Read on. WebMD has examined some of the most common myths about caffeine and gathered the facts to shed some light on those myths.

Caffeine Myth No. 1:

Caffeine Is Addictive

This one has some truth to it, depending on what you mean by “addictive.” Caffeine is a stimulant to the central nervous system, and regular use of caffeine does cause mild physical dependence. But caffeine does not threaten your physical, social, or economic health the way addictive drugs do. (Although after seeing your monthly spending at the coffee shop, you might disagree!)

If you stop taking caffeine abruptly, you may have symptoms for a day or more, especially if you consume two or more cups of coffee a day. Symptoms of withdrawal from caffeine include:

headache
fatigue
anxiety
irritability
depressed mood
difficulty concentrating

No doubt, caffeine withdrawal can make for a few bad days. However, caffeine does not cause the severity of withdrawal or harmful drug-seeking behaviors as street drugs or alcohol. For this reason, most experts do not consider caffeine dependence an addiction.

Caffeine Myth No. 2:

Caffeine Is Likely to Cause Insomnia

Your body quickly absorbs caffeine. But it also gets rid of it quickly. Processed mainly through the liver, caffeine has a relatively short half-life. This means it takes about four to five hours, on average, to eliminate half of it from your body. After eight to 10 hours, 75% of the caffeine is gone. For most people, a cup of coffee or two in the morning would not interfere with sleep at night.

Consuming caffeine later in the day, however, can interfere with sleep. If you are like most people, your sleep would not be affected if you do not consume caffeine at least six hours before going to bed. Your sensitivity may vary, though, depending on your metabolism and the amount of caffeine you regularly consume. People who are more sensitive may not only experience insomnia but also have caffeine side effects of nervousness and gastrointestinal upset.

Caffeine Myth No. 3:

Caffeine Increases Risk for Conditions Such as Osteoporosis, Heart Disease, and Cancer

Moderate amounts of caffeine — about 300 milligrams, or three cups of coffee — apparently cause no harm in most healthy adults. Some people are more vulnerable to its effects, however. That includes such people as those who have high blood pressure or are older. Here are the facts:

Osteoporosis and caffeine

At high levels (more than 744 milligrams/day), caffeine may increase calcium and magnesium loss in urine. But recent studies suggest it does not increase your risk for bone loss, especially if you get enough calcium. You can offset the calcium lost from drinking one cup of coffee by adding just two tablespoons of milk.

However, research does show some links between caffeine and hip fracture risk in older adults. Older adults may be more sensitive to the effects of caffeine on calcium metabolism. If you are an older woman, discuss with your doctor whether you should limit your daily caffeine intake to 300 milligrams or less.

Cardiovascular disease and caffeine

A slight, temporary rise in heart rate and blood pressure is common in those who are sensitive to caffeine. But several large studies do not link caffeine to higher cholesterol, irregular heartbeats, or an increased risk of cardiovascular disease.

If you already have high blood pressure, though, have a discussion with your doctor about your caffeine intake. You may be more sensitive to its effects. Also, more research is needed to tell whether caffeine increases the risk for stroke in people with high blood pressure.

Cancer and caffeine

Reviews of 13 studies involving 20,000 people revealed no relationship between cancer and caffeine. In fact, caffeine may even have a protective effect against certain cancers.

Caffeine Myth No. 4:

Caffeine Is Harmful for Women Trying to Get Pregnant

Many studies show no links between low amounts of caffeine (a cup of coffee per day) and any of the following:

trouble conceiving
miscarriage
birth defects
premature birth
low birth rate

At the same time, for pregnant women or those attempting pregnancy, the March of Dimes suggests fewer than 200 milligrams of caffeine per day. That is largely because in limited studies, women consuming higher amounts of caffeine had an increased risk for miscarriage.

Caffeine Myth No. 5:

Caffeine Has a Dehydrating Effect

Caffeine can make you need to urinate. However, the fluid you consume in caffeinated beverages tends to offset the effects of fluid loss when you urinate. The bottom line is that although caffeine does act as a mild diuretic, studies show drinking caffeinated drinks does not actually cause dehydration.

Caffeine Myth No. 6:

Caffeine Harms Children, Who, Today, Consume Even More Than Adults

As of 2004, children ages 6 to 9 consumed about 22 milligrams of caffeine per day. However, energy drinks that contain caffeine are becoming increasingly popular.

Studies suggest that up to 300 milligrams of caffeine daily is safe for kids. But is it smart? Many kids are sensitive to caffeine, developing temporary anxiety or irritability, with a “crash” afterwards. Also, most caffeine that kids drink is in sodas, energy drinks, or sweetened teas, all of which have high sugar content. These empty calories put kids at higher risk for obesity.

Even if the caffeine itself is not harmful, caffeinated drinks are generally not good for kids.

Caffeine Myth No. 7:

Caffeine Can Help You Sober Up

Actually, research suggests that people only think caffeine helps them sober up. For example, people who drink caffeine along with alcohol think they are OK behind the wheel. But the truth is reaction time and judgment are still impaired. College kids who drink both alcohol and caffeine are actually more likely to have car accidents.

Caffeine Myth No. 8:

Caffeine Has No Health Benefits

Caffeine has few proven health benefits. But the list of caffeine’s potential benefits is interesting. Any regular coffee drinker may tell you that caffeine improves alertness, concentration, energy, clear-headedness, and feelings of sociability. You might even be the type who needs that first cup o’ Joe each morning before you say a single word. Scientific studies support these subjective findings. One French study even showed a slower decline in cognitive ability among women who consumed caffeine.

Other possible benefits include improved immune function from caffeine’s anti-inflammatory effects and help with allergic reactions due to caffeine’s ability to reduce concentrations of histamines. Some people’s asthma also appears to benefit from caffeine. These research findings are intriguing, but still need to be proven.

Limited evidence suggests caffeine may also reduce the risk of the following:

Parkinson’s disease
liver disease
colorectal cancer
type 2 diabetes

Despite its potential benefits, do not forget that high levels of caffeine may have adverse effects. More studies are needed to confirm both its benefits and potential risks.

SOURCES: International Food Information Council Foundation: “Caffeine & Health: Clarifying the Controversies.” Nutrition Action Health Letter: “Caffeine: The Good, the Bad, and the Maybe.” European Food Information Council (EUFIC): “Myths and Facts about Caffeine.” Johns Hopkins University Bayview Medical Center: “Information About Caffeine Dependence.”

©2005-2009 WebMD, LLC. All rights reserved.
(http://www.webmd.com/balance/caffeine-myths-and-facts?ecd=wnl_day_042009)

SEE: http://jeannehambleton77.wordpress.com for health issue stories

Health Myths: Get the Facts

From the FMS Global News Desk of Jeanne Hambleton (UK)

Courtesy of US Department of Health and Human Services, Centers for Disease Control and Prevention, Office of Women’s Health

You may be making health decisions based on incorrect or outdated information. Make sure that your sources for health information are current and accurate. Also, check with your health care provider if you have any questions about living a healthier life.

You CAN take simple steps everyday to protect yourself against illness and disease. It is important to get appropriate health screenings to find potential problems early and get proper treatment to prevent more serious problems later. Know that the health choices you make can also impact the health of others.

Below are links to health-related myths and rumors you may have heard from others or the internet. Click on a health topic for related myths, facts, and links to more information.

Myth: Cancer cannot be prevented

Fact: Scientists estimate that as many as 50 percent or more of cancer deaths in the United States are caused by social and environmental conditions and unhealthy choices. These conditions and choices can result in an unhealthy diet, obesity, or unhealthy human behaviors such as smoking and physical inactivity. We now know more about how to prevent many cancers including cancers of the lung, cervix, colon, rectum, and skin.

In general, the factors that can help prevent cancer include:

not using cigarettes or other tobacco products

avoiding second-hand smoke

not drinking too much alcohol

avoiding weight gain and maintaining a healthy weight

eating five or more daily servings of fruits and vegetables and a low-fat diet

balancing calories with physical activity

being physically active

protecting skin from sunlight

supporting community efforts to develop a healthy social and physical environment

Breast Cancer

Researchers estimate that a fourth to a third of breast cancers in postmenopausal women may be due to physical inactivity and overweight/obesity.*

Mammography is the best available method to detect breast cancer in its earliest, most treatable stage— an average of 1 to 4 years before a woman can feel a lump. Women aged 40 years or older should have a screening mammogram every 1 to 2 years.

Maintain a healthy weight. Limiting weight gain during childhood and adulthood is likely to reduce the risk of breast cancer. Losing weight if overweight may also reduce risk.

Regular physical activity is likely to reduce the risk of breast cancer.

Community efforts to increase physical activity, such as school-based physical education programs and creation of walking trails, can contribute to increased physical activity in your community.

Cervical Cancer

Cervical cancer can usually be prevented if women are screened regularly at least every three years with a test called the Pap test. The Pap test can find abnormal cells in the cervix. These cells may, over time, turn into cancer, and could take many years to happen. If the results of a Pap test show there are abnormal cells that could become cancerous, a woman can be treated. In most cases, this treatment prevents cervical cancer from developing.

Pap tests can also find cervical cancer early. When it is found early, the chance of being cured is very high. When it is found early and treated, cervical cancer is highly curable. The most important thing you can do to avoid getting cervical cancer is to have regular Pap tests.

Abnormal cells in the cervix and cervical cancer do not always cause symptoms, especially at first. That is why getting tested for cervical cancer is important, even if there are no symptoms.

Community efforts to increase access to and use of cancer screening can lead to greater cancer screening in your community.

Colorectal Cancer

If you are 50 or older, getting a screening test for colorectal cancer could save your life.

Colorectal cancer usually starts from polyps in the colon or rectum. A polyp is a growth that shouldn’t be there. Over time, some polyps can turn into cancer.

Screening tests can find polyps, so they can be removed before they turn into cancer. Screening tests can also find colorectal cancer early. When it is found early, the chance of being cured is good.

Researchers estimate that a fourth to a third of colorectal cancer may be due to physical inactivity and overweight/obesity.*

Maintain a healthy weight. Limiting weight gain during childhood and adulthood is likely to reduce risk of colorectal cancer and losing weight if overweight may reduce risk.

Regular physical activity is likely to reduce the risk of colorectal cancer.

Community efforts to increase physical activity, such as school-based physical education programs and creation of walking trails, can contribute to increased activity in your community.

Community efforts to increase access to and use of cancer screening can lead to greater cancer screening in your community.

Lung Cancer

Avoiding tobacco use is the single most important step Americans can take to reduce the cancer burden in this country.

Secondhand smoke is associated with an increased risk for lung cancer and coronary heart disease in nonsmoking adults. Secondhand smoke is a known cancer-causing agent.

Quitting smoking has immediate as well as long-term benefits, reducing risks for diseases caused by smoking and improving health in general.

Community efforts to limit smoking, such as indoor smoking policies and cigarette taxes, can help reduce smoking and exposure to secondhand smoke.

Skin Cancer

Exposure to the sun’s ultraviolet rays appears to be the most important environmental factor involved in the development of skin cancer. When used consistently, sun-protective practices can prevent skin cancer.

Although anyone can develop skin cancer, some people are at particular risk, including those with light skin color, hair color, or eye color; family history of skin cancer; personal history of skin cancer; chronic exposure to the sun; history of sunburns early in life; certain types of moles or a large number of moles; and freckles, which indicate sun sensitivity and sun damage.

Protect your skin from the sun, by choosing five sun protection options: seek shade, cover up, get a hat, wear sunglasses, and rub on sunscreen.

Breast and Cervical Cancer Screening: Free or Low-Cost Mammogram and Pap Test Contacts

http://apps.nccd.cdc.gov/cancercontacts/nbccedp/contacts.asp

Cancer Prevention and Control

http://www.cdc.gov/cancer/

Cervical Cancer Screening

http://www.cdc.gov/cancer/cervical/basic_info/screening/

Colorectal Cancer: Basic Facts on Screening

http://www.cdc.gov/cancer/colorectal/basic_info/screening/

Lung Cancer

http://www.cdc.gov/cancer/lung/

Skin Cancer and Melanoma Awareness

http://www.cdc.gov/cancer/nscpep/awareness.htm

Skin Cancer: Preventing America’s Most Common Cancer

http://www.cdc.gov/cancer/nscpep/about2004.htm

Skin Cancer Primary Prevention and Education Initiative

http://www.cdc.gov/cancer/nscpep/

Smoking: The Health Consequences of Smoking: Surgeon General’s Report, 2004

http://www.cdc.gov/tobacco/sgr/sgr_2004/Factsheets.htm

Smoking: Secondhand Smoke

http://www.cdc.gov/tobacco/factsheets/secondhand_smoke_factsheet.htm

About the National Breast and Cervical Cancer Early Detection Program

http://www.cdc.gov/cancer/nbccedp/about.htm

Cancer Information Summaries: Prevention http://www.nci.nih.gov/cancertopics/pdq/prevention/ (Non-CDC site)

Steps to a Healthier You
http://www.mypyramid.gov/ (Non-CDC site)

*Weight Control and Physical Activity: International Agency for Research on Cancer- Handbooks of Cancer Prevention, 2002
http://www.iarc.fr/IARCPress/general/prev.pdf (Non-CDC site)

Diabetes

Myth: There’s nothing you can do to prevent type 2 diabetes.

Fact: Diabetes prevention is proven, possible, and powerful. Studies show that people at high risk for type 2 diabetes can prevent or delay the onset of the disease by losing 5 to 7 percent of their body weight. For example, if you weigh 200 pounds, losing only 10 pounds could make a difference. You can do it by eating healthier and getting 30 minutes of physical activity 5 days a week.

Type 2 diabetes, formerly called adult-onset or noninsulin-dependent diabetes, is the most common form of diabetes. People can develop type 2 diabetes at any age, even during childhood. This form of diabetes usually begins with insulin resistance, a condition in which fat, muscle, and liver cells do not use insulin properly.

More than 18 million Americans have diabetes, and 5.2 million cases are undiagnosed. An estimated 41 million U.S. adults aged 40–74 have prediabetes—that is, their blood sugar level is elevated but is not high enough to be classified as diabetes. People with prediabetes are at high risk for developing diabetes.

Diabetes can cause heart disease, stroke, blindness, kidney failure, pregnancy complications, lower-extremity amputations, and deaths related to flu and pneumonia. Heart disease is the leading cause of diabetes-related deaths, and death rates are about 2–4 times higher for adults with diabetes than for those without the disease.

Diabetes and Me: Prevent Diabetes

http://www.cdc.gov/diabetes/consumer/prevent.htm

Diabetes Prevention

http://www.ndep.nih.gov/diabetes/prev/prevention.htm

Am I At Risk for Type 2 Diabetes?
http://diabetes.niddk.nih.gov/dm/pubs/riskfortype2/ (Non-CDC site)

Environmental Health

Myth: You cannot prevent spreading illness on a cruise.

Fact: Each year millions of U.S. citizens enjoy cruise vacations. According to the Cruise Line International Association, in 2003, approximately 8.3 million passengers embarked from North American ports for their cruise vacation. Traveling on cruise ships exposes people to new environments and high volumes of people, including other travelers. Although an infrequent occurrence, this exposure creates the risk for illness, either from contaminated food, water, or – more commonly – through person to person contact. Follow these tips to help prevent the spread of illness:

Wash your hands before and after eating, after touching your face and going to the bathroom, and when your hands are dirty.

Leave the area if you see someone get sick (vomiting or diarrhea) and report it to the cruise staff. You could become sick if you ingest contaminated particles that travel through the air.

Take care of yourself. Get plenty of rest and drink lots of water. Resting helps rebuild your immune system. Drinking water helps prevent dehydration.

Be considerate of other people’s health. If you’re ill before taking a cruise, call the cruise line to determine if there are alternative cruising options.

Cruising Tips

http://www.cdc.gov/nceh/vsp/pub/CruisingTips/cruisingtips.htm

Handwashing Tips and Techniques

http://www.cdc.gov/nceh/vsp/pub/Handwashing/HandwashingTips.htm

Immunizations

Myth: Adults do not need immunizations unless they are traveling outside the country.

Fact: Vaccines aren’t just for travelers and kids. Far too many adults become ill, are disabled, and die each year from diseases that could easily have been prevented by vaccines. Thus, everyone from young adults to senior citizens can benefit from immunizations. Vaccines help prevent infectious diseases and save lives. Vaccines are responsible for the control of many infectious diseases that were once common in this country, including polio, measles, diphtheria, pertussis (whooping cough), rubella (German measles), mumps, tetanus, and Haemophilus influenzae type b (Hib).

Vaccines for adults include:

Tetanus-Diphtheria: all adults, every 10 years

Influenza (flu): adults at risk and all those 50 and older

Pneumococcal: adults at risk and all those 65 and older

Hepatitis A and B: adults at risk

Measles-Mumps-Rubella (MMR): susceptible adults

Varicella (chickenpox): susceptible adults

Vaccines for travelers

Adolescent and Adult Immunization Quiz

http://www2.cdc.gov/nip/adultImmSched/

Adult Immunization Schedule

http://www.cdc.gov/vaccines/recs/schedules/adult-schedule.htm

Vaccine-Preventable Adult Diseases

http://www.cdc.gov/vaccines/vpd-vac/adult-vpd.htm

Pregnancy and Reproductive Health

Myth: Birth defects cannot be prevented.

Fact: Approximately 3000 pregnancies per year in the United States are affected by serious birth defects of the brain (anencephaly) or spine (spina bifida). Up to 70% of these defects can be prevented if a woman consumes the B vitamin folic acid daily before pregnancy and through the first trimester. The U.S. Public Health Service recommends that all women who can become pregnant consume 400 micrograms of folic acid daily to help prevent these serious birth defects. Since half of all pregnancies are unplanned, it is important to take folic acid every day!

Folic Acid

http://www.cdc.gov/ncbddd/folicacid/

Sexually Transmitted Diseases (STDs and HIV/AIDS)

Myth: If you do not have any symptoms, you do not have a sexually transmitted disease/sexually transmitted infection (STD/STI).

Fact: Many STDs/STIs are asymptomatic- without signs or symptoms- while serious damage is being done to a woman’s reproductive organs. The only way to know for sure if you are or are not infected is to be tested. If you suspect you have a sexually transmitted infection or if your sexual partner has symptoms, you can go to your doctor or health department for testing. Talk with a knowledgeable health care provider or counselor both before and after you are tested.

The surest way to avoid transmission of sexually transmitted diseases is to abstain from sexual contact or to be in a long-term mutually monogamous relationship with a partner who has been tested and is known to be uninfected.

The following STDs may be asymptomatic:

Bacterial Vaginosis

http://www.cdc.gov/std/BV/STDFact-Bacterial-Vaginosis.htm

Chlamydia

http://www.cdc.gov/std/Chlamydia/STDFact-Chlamydia.htm

Gonorrhea

http://www.cdc.gov/std/Gonorrhea/STDFact-Gonorrhea.htm

Human Immunodeficiency Virus (HIV)

http://www.cdc.gov/std/hiv/STDFact-STD&HIV.htm

Human Papillomavirus (HPV)

http://www.cdc.gov/std/HPV/STDFact-HPV.htm

Pelvic Inflammatory Disease (PID)

http://www.cdc.gov/std/PID/STDFact-PID.htm

Syphilis

http://www.cdc.gov/std/Syphilis/STDFact-Syphilis.htm

Trichomoniasis

http://www.cdc.gov/std/Trichomonas/STDFact-Trichomoniasis.htm

Smoking and Tobacco

Myth: Low-tar or light cigarettes are not as harmful as regular cigarettes.

Fact: There is no safe tobacco product. The use of any tobacco product can cause cancer and other adverse health effects. This includes all forms of tobacco, including cigarettes, cigars, pipes, and spit tobacco; mentholated, “low-tar,” “naturally grown,” or “additive-free.” The poisonous ingredients in cigarettes aren’t just limited to tar and nicotine. A typical cigarette contains lead, ammonia (a household cleaner), arsenic (used in rat poison), benzene (used in making gas), butane gas, carbon monoxide (a poisonous gas), DDT (a banned insecticide), and polonium 210 (cancer-causing radioactive element). To reduce your risk for lung cancer, stroke, heart disease, and reproductive health problems, avoid all tobacco products and exposure to second-hand smoke.

Light Cigarettes Myth

http://www.cdc.gov/tobacco/christy/myth6.htm

Women and Smoking: A Report of the Surgeon General

http://www.cdc.gov/tobacco/sgr/sgr_forwomen/

Violence

Myth: Rape does not happen very often.

Fact: Rape and attempted rape happen more often than you may think. According to the National Violence against Women survey, 1 in 6 women and 1 in 33 men in the United States have experienced an attempted or completed rape at some time in their lives. In 8 out of 10 rape cases, the victim knew the perpetrator. The first step in preventing sexual violence is to identify and understand vulnerability factors. A vulnerability factor is anything that increases the likelihood that a person will suffer harm. Vulnerability factors for sexual violence include: young age, drug or alcohol use, prior history of sexual violence, multiple sex partners, and poverty.

Sexual Violence

http://www.cdc.gov/ncipc/dvp/SV/default.htm

Sexual Violence: Prevention Strategies and Links

http://www.cdc.gov/ncipc/factsheets/svprevention.htm

The Truth about Rape

http://www.cdc.gov/ncipc/dvp/The%20Truth%20About%20Rape%20Final.pdf

URL: http://www.cdc.gov/women/owh/myths/

Nuclear Medicine: New World of Diagnosing and Treating Illness

From the FMS Global News Desk of Jeanne Hambleton

Courtesy of the Society of Nuclear Medicine – Advancing Molecular Imaging and Therapy
(https://interactive.snm.org/)

IMAGES THE BODY’S BIOLOGICAL PROCESSES

Nuclear medicine is a medical specialty that uses very small amounts of radioactive materials (radiopharmaceuticals) to diagnose, guide management and treat disease. Most nuclear medicine procedures are molecular imaging procedures that use radioactive substances. Molecular imaging procedures are highly effective, safe and painless diagnostic imaging and treatment tools that present physicians with a detailed view of what is going on inside an individual’s body at the cellular level.

Molecular imaging/nuclear medicine specialists can safely, effectively and painlessly determine if certain organs, such as the heart, brain, kidneys, liver, thyroid and lungs, are working properly. A molecular imaging/nuclear medicine procedure commonly used in diagnosing and guiding treatment of cancer patients is PET/CT scanning (see also “PET/CT Scanning: Get the Facts” – see below).

When very small amounts of radioactive materials are introduced into the body by injection, swallowing or inhalation, specific body organs can be targeted. These trace radiopharmaceuticals are detected by special cameras that work with computers to provide pictures of an area of the body, offering information about an organ’s physiology or function. The presence of disease is determined based on biological or molecular changes, rather than changes in anatomy. Radiopharmaceuticals go directly to the organ being targeted and are also used as treatment for hyperthyroidism, certain types of cancer such as thyroid and lymphoma, blood imbalances and pain relief for certain types of bone cancer.

Improves Patient Care

Today, molecular imaging and nuclear medicine offer procedures that are essential in many medical specialties, from pediatrics to cardiology to neurology to oncology. Molecular imaging and nuclear medicine procedures are an invaluable way to gather medical information that would otherwise be unavailable, require surgery or necessitate more expensive diagnostic tests.

These commonly performed biological imaging procedures are an integral part of patient care, identifying abnormalities very early in the progression of a disease-often before medical problems are apparent with other diagnostic tests. Early detection allows a disease to be treated when there may be a more successful prognosis.

Helps in Diagnosis and Treatment

In 2007, an estimated 16 million patients received nuclear medicine procedures in over 7,300 hospital and non-hospital sites in the United States, or approximately 68,000 patients daily (http://www.imvinfo.com). Nearly all hospitals-in addition to many clinics and private doctors’ offices-perform nuclear medicine tests and scans. Safe, effective, painless and commonly performed procedures include positron emission tomography (PET) scans to diagnose and monitor treatment in cancer, cardiac stress tests to analyze heart function, bone scans for orthopedic injuries and lung scans for blood clots.

More than 100 different nuclear medicine imaging procedures are available, and every major organ system can be imaged. Nuclear medicine procedures are used in the diagnosis and evaluation of treatment of:

Neurological diseases
Alzheimer’s disease and dementias
Seizure disorders
Coronary artery disease
Many types of cancer
Endocrine diseases
Thyroid
Parathyroid
Adrenal
Gastrointestinal diseases
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SNM and Nuclear Medicine

SNM is an international scientific and medical organization dedicated to raising public awareness about what molecular imaging is and how it can help provide patients with the best health care possible. SNM members specialize in molecular imaging, a vital element of today’s medical practice that adds an additional dimension to diagnosis, changing the way common and devastating diseases are understood and treated.

SNM’s more than 17,000 members set the standard for molecular imaging and nuclear medicine practice by creating guidelines, sharing information through journals and meetings and leading advocacy on key issues that affect molecular imaging and therapy research and practice. For more information, visit http://www.snm.org.

WHAT IS NUCLEAR MEDICINE?

Nuclear medicine specialists use safe, painless, and cost-effective techniques to image the body and treat disease. Nuclear medicine imaging is unique, because it provides doctors with information about both structure and function. It is a way to gather medical information that would otherwise be unavailable, require surgery, or necessitate more expensive diagnostic tests. Nuclear medicine imaging procedures often identify abnormalities very early in the progress of a disease – long before many medical problems are apparent with other diagnostic tests.

Nuclear medicine uses very small amounts of radioactive materials (radiopharmaceuticals) to diagnose and treat disease. In imaging, the radiopharmaceuticals are detected by special types of cameras that work with computers to provide very precise pictures about the area of the body being imaged. In treatment, the radiopharmaceuticals go directly to the organ being treated. The amount of radiation in a typical nuclear imaging procedure is comparable with that received during a diagnostic x-ray, and the amount received in a typical treatment procedure is kept within safe limits.

Today, nuclear medicine offers procedures that are essential in many medical specialties, from pediatrics to cardiology to psychiatry. New and innovative nuclear medicine treatments that target and pinpoint molecular levels within the body are revolutionizing our understanding of and approach to a range of diseases and conditions.

Would you like to know more about Nuclear Medicine? The SNM has two versions of our What Is Nuclear Medicine brochure available for download and bulk purchase. One is for General Educational Purposes and the second brochure is geared for Patients.

To download the Patients Brochure log on to
http://interactive.snm.org/docs/whatisnucmed2.pdf

© 2009 SNM. All rights reserved
(http://interactive.snm.org/index.cfm?PageID=3106&RPID=#URL.PageID%23)

WHAT IS PET?

Positron Emission Tomography (PET) is a major diagnostic imaging modality used predominantly in determining the presence and severity of cancers, neurological conditions, and cardiovascular disease. It is currently the most effective way to check for cancer recurrences, and it offers significant advantages over other forms of imaging such as CT or MRI scans in detecting disease in many patients. In 2005, an estimated 1,129,900 clinical PET patient studies were performed at 1,725 sites around the country. If you’re interested in learning how a PET scan can benefit you and need additional information, talk with your local health care provider or referring physician. At the end of this page are links to other sites with PET information too.

PET images demonstrate the chemistry of organs and other tissues such as tumors. A radiopharmaceutical, such as FDG (fluorodeoxyglucose), which includes both sugar (glucose) and a radionuclide (a radioactive element) that gives off signals, is injected into the patient, and its emissions are measured by a PET scanner.

A PET scanner consists of an array of detectors that surround the patient. Using the gamma ray signals given off by the injected radionuclide, PET measures the amount of metabolic activity at a site in the body and a computer reassembles the signals into images. Cancer cells have higher metabolic rates than normal cells, so they show up as denser areas on a PET scan. PET is useful in diagnosing certain cardiovascular and neurological diseases because it highlights areas with increased, diminished or no metabolic activity, thereby pinpointing problems.

Cancer and PET

PET is considered particularly effective in identifying whether cancer is present or not, if it has spread, if it is responding to treatment, and if a person is cancer free after treatment. Cancers for which PET is considered particularly effective include lung, head and neck, colorectal, esophageal, lymphoma, melanoma, breast, thyroid, cervical, pancreatic, and brain as well as other less-frequently occurring cancers.

Early Detection:

Because PET images biochemical activity, it can accurately characterize a tumor as benign or malignant, thereby avoiding surgical biopsy when the PET scan is negative. Conversely, because a PET scan images the entire body, confirmation of distant metastasis can alter treatment plans in certain cases from surgical intervention to chemotherapy.

Staging of Cancer: PET is extremely sensitive in determining the full extent of disease, especially in lymphoma, malignant melanoma, breast, lung, colon and cervical cancers. Confirmation of metastatic disease allows the physician and patient to more accurately decide how to proceed with the patient’s management.

Checking for recurrences:

PET is currently considered to be the most accurate diagnostic procedure to differentiate tumor recurrences from radiation necrosis or post-surgical changes. Such an approach allows for the development of a more rational treatment plan for the patient.

Assessing the Effectiveness of Chemotherapy:

The level of tumor metabolism is compared on PET scans taken before and after a chemotherapy cycle. A successful response seen on a PET scan frequently precedes alterations in anatomy and would therefore be an earlier indicator of tumor response than that seen with other diagnostic modalities.

PET and CT or MRI

Because PET measures metabolism, as opposed to MRI or CT, which “see” structure, it can be superior to these modalities, particularly in separating tumor from benign lesions, and in differentiating malignant from non-malignant masses such as scar tissue formed from treatments like radiation therapy. PET is often used in conjunction with an MRI or CT scan through “fusion” to give a full three-dimensional view of an organ and the location of cancer within that organ. The newest PET scanners are a combination of PET and CT devices that provide the important metabolic information from PET superimposed on the high-quality anatomic information from CT.

Neurological Disease

PET’s ability to measure metabolism also has significant implications in diagnosing Alzheimer’s disease, Parkinson’s disease, epilepsy and other neurological conditions, because it can vividly illustrate areas where brain activity differs from the norm.

Alzheimer’s Diagnosis: Until recently, autopsy has been considered the only definitive test for Alzheimer’s disease (AD). Recent studies indicate that PET can supply important diagnostic information and confirm an Alzheimer’s diagnosis. When comparing a normal brain versus an AD-affected brain on a PET scan, a distinctive image appears in the area of the AD-affected brain. This pattern is seen very early in the AD course. Conventionally, the confirmation of AD is a long process of elimination that averages between two and three years of diagnostic and cognitive testing. Early diagnosis can provide the patient access to therapies, which are more effective earlier in the disease.

PET also is useful in differentiating Alzheimer’s disease from other forms of dementia disorders, such as vascular dementia, Parkinson’s disease, Huntington’s disease, etc.

Epilepsy:

PET is one of the most accurate methods available to localize areas of the brain causing epileptic seizures and to determine if surgery is a treatment option.

Cardiovascular Disease

By measuring both blood flow (perfusion) and metabolic rate within the heart, physicians using PET scans can pinpoint areas of decreased blood flow, such as those with blockages, and differentiate living muscle from damaged muscle, which has inadequate blood flow (myocardial viability). This information is particularly important in patients who have had previous myocardial infarction (heart attack) and who are being considered for a procedure such as angioplasty or coronary artery bypass surgery.

Cost & Reimbursement:

PET scan charges range from $850–$4,000, depending on the type of scan. American Insurance companies will cover the cost of many PET scans. Medicare reimburses for almost all cancers. Some indications have already been determined to be reimbursable, others are reimbursed as long as they are part of a qualified clinical trial or a clinical study to determine the effectiveness of PET in imaging specific cancers. Medicare is constantly updating reimbursements, so visit the SNM Web site to find the latest information.

History of PET

In the 1970s PET scanning was formally introduced to the medical community. At that time it was seen as an exciting new research modality that opened doors through which medical researchers could watch, study, and understand the biology of human disease.

In 1976, the radiopharmaceutical fluorine-18-2-fluoro-2-deoxyglucose (FDG), a marker of sugar metabolism with a half-life of 110 minutes, enabled tracer doses to be administered safely to the patient with low radiation exposure. The development of radiopharmaceuticals like FDG made it easier to study living beings, and set the groundwork for more in-depth research into using PET to diagnose and evaluate the effect of treatment on human disease.

To perform PET studies in the late 1970s, a large staff was needed: physicists to run the cyclotron that produces the fluorine-18 and to oversee the scanner, chemists to make the tracers such as FDG, and dedicated, specialist physicians.

During the 1980s the technology that underlies PET advanced greatly. Commercial PET scanners were developed with more precise resolution and images. As a result, many of the steps required for producing a PET scan became automated and could be performed by a trained technician and experienced physician, thereby reducing the cost and complexity of the procedure. Smaller, self-shielded cyclotrons were developed, making it possible to install cyclotrons at more locations.

Over the last several years, the major advance in this technology has been the combining of a CT scanner and a PET scanner in one device. The modern PET/CT scanner allows a study to be done in a shorter amount of time but still provides more diagnostic information.

PET Today

PET and PET/CT are widely available today. The technology is robust and provides high-quality images. Some of the earlier roadblocks to having or using a PET or PET/CT device—such as availability of particular radiopharmaceuticals—are no longer present.

Reviewed by R. Edward Coleman, MD

© 2009 SNM. All rights reserved.

Many Chronic Patients Cannot Afford Care

From the FMS Global News Desk of Jeanne Hambleton

By Kristina Fiore, Staff Writer, MedPage Today
Published: March 20, 2009

WASHINGTON, March 20 — One patient in four with a chronic condition has postponed healthcare or filling a prescription in the past year because he cannot afford it, researchers here said.

Latinos (43%) and middle-age women (39%) are among those more likely to report delaying care, according to a survey by the National Council on Aging.

Although the poor are more likely to report delaying care, 22% of patients with household incomes above $50,000 have done so, according to the survey.

Those who have put postponed treatment are also more likely to be in frequent physical pain (45% versus 28% of those who have not delayed care), to be fatigued (49% versus 28%), and to be stressed (40% versus 17%).

The survey — conducted between Jan. 5 and Jan. 30, 2009 among 1,109 adults ages 44 and up with at least one chronic condition — is a snapshot of patients living with chronic conditions such as heart disease, arthritis, hypertension, and diabetes.

The survey included an oversample of those 65 and older (n=594 total), as well as an oversample of Latinos (n=142 total). The margin of sampling error for the total results is +2.9 percentage points.

Many report dissatisfaction with the care they receive. Some 44% wish their physician had more time to spend talking to them about their condition, and 45% said they never get referrals to important chronic care resources such as counselors and health educators.

Nearly a third report leaving their physician’s office confused about what they should do regarding their care, and many say their providers aren’t doing anything to improve their care.

About 57% said their physicians have not asked whether they have help at home to manage their problems, and 45% said they rarely or never receive referrals to support services such as classes, counselors, or health educators.

Many patients are living with several chronic diseases: 68% report having two or more conditions and 20% have four or more.

Those with one chronic condition are healthier, have higher incomes, and have more support at home; while those with multiple conditions tend to have low incomes and less support.

Half of those with chronic conditions are unhappy or depressed at least occasionally because of their health problems, and 32% report having to cut back on social activities. A little more than a quarter report having to miss work.

Almost 40% of patients said they do not have the money to begin improving their health, a percentage that is particularly high among Latinos (63%), African Americans (58%), the poor (65%) and those with four or more chronic conditions (59%).

However, 70% said learning how to exercise or eat better in ways that work with their limitations would help them cope, and 68% say getting advice from others with similar conditions would help as well.

Fifty-six percent of Americans 44 and older with chronic conditions are Internet users — and of these, 63% say they would be interested in going to Web sites sponsored by health organizations to get information and support.

Even 27% of those who rarely or never use the Internet say they would be interested in going to Web sites for information and support.

Nancy Whitelaw, senior vice president of the Center for Health Aging at the National Council on Aging, said the report highlights the need to reform the healthcare system in order to support patients with chronic conditions.

“We encourage physicians not to take on the responsibility themselves, but to build a mechanism to refer patients to community-based health education programs that are effective,” Whitelaw said.

She added that physicians can help connect patients to such programs via a community agency that deals with the aging.

EDITOR’S NOTE: If it is happening in the USA, it must be happening here in the UK. This must also apply to visits to the opticians and the dentist. We can no longer afford luxuries, so health must be the next concern to be hit by the credit crunch. The offending financiers have a lot to answer for….Now is the time to make all prescriptions free before the UK falls apart at the seams. There is an old saying which tells us that health and happiness are more important than wealth. Are you listening Mr.B? You have helped everyone else – you can at least do this for the people Mr.B.! Write to your MP and put some pressure on the Government! JH

The survey was funded by the Atlantic Philanthropies and the California HealthCare Foundation.

Primary source: National Council on Aging
Source reference: “Reforming healthcare: American speak out about chronic conditions and the pursuit of healthier lives” NCOA 2009.

(http://www.medpagetoday.com/PublicHealthPolicy/PublicHealth/13358?utm_source=mSpoke&utm_medium=email&utm_campaign=DailyHeadlines&utm_content=GroupB&userid=206539&impressionId=1237776625926)

EUROPEAN NETWORK of FIBROMYALGIA ASSOCIATIONS

From the News Desk of Jeanne Hambleton

PRESS RELEASE -28.01.2009

 

The European Medicines Agency (EMEA) are to  have a consultation with a delegation from the European Network of Fibromyalgia Associations (ENFA) in an attempt to understand the need for medical treatments for fibromyalgia in Europe.

Brussels – Following an invitation by the EMEA, the European Network of Fibromyalgia Associations (ENFA) has agreed to attend a consultation meeting with EMEA, where ENFA representatives will share their knowledge and experiences related to the disease of Fibromyalgia that some 14 million Europeans are suffering from.  One of the biggest challenges that the patients have been facing is the lack of officially recognized medical treatment options in the European Union whereas there are three drugs in the United States of America approved by the Food and Drug Administration: Cymbalta from Eli Lilly, Lyrica from Pfizer and recently authorised Savella from Forest & Cypress.

 

The European Declaration 69/2008 on Fibromyalgia that has been recently adopted by the European Parliament, symbolizing the awareness raised around Fibromyalgia, calls for actions on specific issues from European Institutions to improve healthcare surrounding the disease, e.g. investment in research and provision of better diagnosis and treatment.  In addition, the European Health Commissioner Ms. Vassiliou’s remarks (E-6262/08EN) on the treatment of Fibromyalgia demonstrates encouraging willingness of the European Commission to address various concerns laid out in the Declaration on Fibromyalgia.

“We hope that this new drive on Fibromyalgia awareness will bring the end to the impasse of medical treatment for Fibromyalgia patients in the EU”, said Mr. Robert Boelhouwer, President of ENFA. 

Fibromyalgia is a complex disease with a variety of symptoms in addition to the defining symptom – chronic widespread pain. It is estimated that 14 million people in Europe suffer from fibromyalgia and the condition is more prevalent with women (87%).  Fibromyalgia imposes large economic burdens on society as well as on affected individuals. The debilitating symptoms often result in lost work days, lost income and disability payments. Due to lack of awareness, on average patients in Europe see 3-4 physicians and take multiple medications over the course of several years before they receive a diagnosis of Fibromyalgia.

Mr. Boelhouwer said, “Increasing awareness of Fibromyalgia among healthcare professionals and patients will bring enormous benefits to patients, healthcare providers and the society in general by managing the burden of the disease.” he continues, “Having this in mind, ENFA welcomes the proactive role that both the European Parliament and the European Commission have taken up in raising the awareness of Fibromyalgia.”

 

 

Contact:  European Network of Fibromyalgia Associations (ENFA)

Mr. Robert Boelhouwer President of ENFA

contact@enfa-europe.eu  - www.enfa-europe.eu

 About ENFA

ENFA is a network of patient association and support groups working in close consultation with the national association in the relevant country. Our joint missions are to conquer the myths and misunderstandings around Fibromyalgia. The network will help collectively push forward the boundaries which currently exist in understanding, experiencing and treatment of Fibromyalgia. Our main goal is to see fibromyalgia receiving the recognition it deserves across Europe as an illness in its own right.

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http://www.europarl.europa.eu/QP-WEB/application/home.do?language=EN

 

 

Exciting news for Fibromyalgia Research!

MAKING MUSIC THE FIBROMYALGIA WAY

By Jeanne Hambleton © 2008

They say fibromyalgia runs in families, but my latest news shows that in one family both music and fibromyalgia research are excited about ‘Hard Times’.
Spanning three generations, a granddad (a very young one), two of his grandchildren and a nephew, are all involved in writing, playing and selling their music for their first CD ‘Hard Times’ to raise funds for research. They hope to find a cure for fibromyalgia for granddad and millions of other fibromyalgia sufferers through research at the University of Michigan, in Ann Arbor. Michigan.
Richard Lee (aka Rick Usher of FMS Global News), Justin (16), Autumn (10) and nephew Tim (29) have been busy in the studio laying down some tracks for their first CD that is dedicated to fibromyalgia and Gulf War Syndrome veterans.
Richard told me, “I am a musician with fibromyalgia and fibromyalgia research is one of the most important things I can think of to use the gift of music for. Where it will go from here I have no idea, but I am ready for whatever develops. These songs are free to download ahead of the CD release that will be in the very near future.
Richard said he had written most of the songs with the exception of Summer Time (a George Gershwin Tribute) and Tobacco Road (a tribute to John Laudermilk the author of the song, and “Simple Man” which is Tim’s contribution as well as a song he wrote called “Believe”.) – both great favourites of his.
“However these are my renditions of these songs and they are different from the originals by a significant degree. The rest are songs I have written and these will be available for fibromyalgia research funding soon on CD or by download,” said Richard.
The band is set up with Rick (Richard Lee) Usher, Lead and Bass Guitar, Vocals, Harmonica, Keyboards: Justin Usher, Keyboards, Guitar: Tim Upton, Guitar, Vocals. The newest member of the group is Rick’s granddaughter, Autumn (10) who is playing piano/keyboards.
Rick said, “After only one lesson she can pick out the melody of all my songs. I am 52, so we have a broad age range (107 years) and we are all related.
“The youngsters are thrilled to be helping me with my fibromyalgia and the research. It gives me a big kick to watch their enthusiasm and their support. They are great kids and I love them to bits for helping me. Their grandmother and their mother, who has FMS, are pretty proud of them too.”

For more information log on to
http://www.myspace.com/richardleeandhardtimes

FM FRESEARCH ACROSS THE POND
Conscious that fibromyalgia is reported to be reaching world wide epidemic proportions, Richard, hopes to introduce the first UK Fibro What CD for downloading when his own Cd is launched. Written and played by Dom Collins, an award winning comedy singer. Dom donated the music with three very funny backing tracks, to help fund UK research. Now the Fibro What CD is being sold ‘across the pond’ to support research funding in the UK. Log on to http://www.domcollins.co.uk/MYSPACE for more details.

PERSONAL HARD TIMES
I asked Richard to tell me something about his fibromyalgia and his driving force.
He said, “My fibro first began to be a major problem when I was about 24, so I have had fibromyalgia most of my life. I was an electronics engineer and finally in my 30′s had to give up my career. I had just bought a home to raise my family and had a new mortgage and I suddenly could not work anymore.
“Somehow with my wife’s support we managed to survive. Staying together and being close as a family is very important when you have fibromyalgia. My oldest daughter also has fibromyalgia, and her son Justin is part of the band.

OUR MUSIC
“The music we play is a bit of everything. Some is blues and jazz and folk and some good old rock n’ roll. I write songs about real life – what I have lived and learned.
“One song that is about my experience with fibro is called “Learning to dance in the rain”. I encourage anyone that has fibro and a MY SPACE website, to add this song to their profile. I’ll have a better version of the song up soon.

RESEARCH SUFFERS IN HARD TIMES
“I truly believe that research into fibromyalgia is at a stage where new discoveries are within our grasp. Sadly with the economic troubles we are all facing today, research funding is not keeping pace with the science we badly need to develop.
“I have met Dr. Daniel Clauw at the University of Michigan and want to support his fibromyalgia research. You may recall that Dr. Clauw was the one that proved fibromyalgia is not “all in our head” and his contributions to fibromyalgia research are well known worldwide.
“We originally planned a benefit concert at Hill Auditorium for Sept 21 of this year but with the economy the way it is corporate sponsors are a bit more difficult to find so the date will most likely be moved back unless we get a miracle. In my world miracles happen often.
“We will soon be producing a CD which will further help raise funds for research and will have a dozen or so songs on iTunes soon that will also benefit research.”
Since another artist already used my last name I go by my first and middle name with the band. Hard Times is the name of the band because everybody knows hard times.”

Congratulations on your achievements Rick, given you have fibromyalgia and a passion to find a cure. Well done to you and your young team. I hope lots of people like your music and help you build up a good fund for research. .
The group hope’s to add other venues and will consider fund raising for cancer research funding in the future’

MAKING MEMORIES AND SOBERING THOUGHTS FOR FIBROMITES

by Jeanne Hambleton © 2007
NFA Leader Against Pain-Advocate
 
I well remember how much I enjoyed Gene Kelly’s performance in the film “Singing in the Rain”. It made me feel so good, in spite of the bad weather, and between us, I really felt like being silly, running outside in the rain and singing my head off. But as my dear late Dad would have said, “Here’s a penny. Go in the next street!” That does not say much for my voice but the thought was there.

It is odd but these days you seldom hear children singing while playing. Do they still teach singing in school – all those pomp and circumstance songs like ‘Jerusalem’, ‘Land of Hope and Glory’ to name but two? Most children seem to know, ‘You’ll never walk alone’, but I guess that is down to the football fans. I seem to think we were encouraged to sing to get some fresh air in our lungs. I even remember doing breathing exercises at school – that must have been when Adam was a lad!

It also seems as if most children do not want to play in the rain and hate to get wet. What happy childhood memories come back when you see a picture of a young child in a hooded raincoat with wellies splashing in big puddles and giggling? I would think Health & Safety and the PC (Politically Correct) Brigade would have something to say about that these days – too dangerous – the child will slip over and hurt itself.

All this talk about singing and dancing in the rain brings me nicely to a little story, which I hope you will enjoy. To be truthful I am hoping to start an epidemic of people singing and dancing in the rain and getting them washed while they are at it. We could change the words, “I’m singing and washing in the rain”. Read on and you will understand where I am coming from. Regrettably I cannot remember which fibromite sent it to me – fibro fog – but thanks.
 
IT’S RAINING

A little girl had been shopping with her Mom in Zellers. She must have been 6 years old, this beautiful red haired, freckle faced image of innocence. It was pouring with rain outside the store. It was the kind of rain that gushes over the top of rain gutters, so much in a hurry to hit the earth it has no time to flow down the spout. We all stood there under the awning and just outside the door of Zellers.

We waited, some patiently, others irritated because it messed up their hurried day.  I am always mesmerized by rainfall.  I got lost in the sound and sight of the heavens washing away the dirt and dust of the world. Memories of running, splashing so carefree as a child came pouring in as a welcome reprieve from the worries of my day.

The little voice was so sweet as it broke the hypnotic trance we were all caught in.
“Mom, let’s run through the rain,” she said.

 ”What?” Mom asked.

“Lets run through the rain!” she repeated.

“No, Honey. We’ll wait until it slows down a bit,” Mom replied.

This young child waited about another minute and repeated: “Mom, let’s run through the rain,”

“We’ll get soaked if we do,” Mom said.

“No, we won’t, Mom.  That’s not what you said this morning,” the young girl said as she tugged at her Mom’s arm.

“This morning?  When did I say we could run through the rain and not get wet?”

“Don’t you remember?  When you were talking to Daddy about his cancer, you said, ‘If God can get us through this, He can get us through anything!’”

The entire crowd stopped dead silent.  I swear you couldn’t hear anything but the rain.  We all stood silently.  No one came or left in the next few moments.

 Mom paused and thought for a moment about what she would say.  Now some would laugh it off and scold the child for being silly.  Some might even ignore what was said.  But this was a moment of affirmation in a young child’s life:  a time when innocent trust can be nurtured so that it will bloom into faith.

“Honey, you are absolutely right.  Let’s run through the rain.  If GOD lets us get wet, well maybe we just needed washing,” Mom said.

Then off they ran.  We all stood watching, smiling and laughing as they darted past the cars and, yes, through the puddles.  They held their shopping bags over their heads just in case.  They got soaked.  But they were followed by a few who screamed and laughed like children all the way to their cars.

And, yes, I did.  I ran.  I got wet.  I needed washing.

Circumstances or people can take away your material possessions.  They can take away your money, and they can also take away your health.  But no one can ever take away your precious memories.  So, don’t forget to make time and take the opportunities to make memories everyday.

“To everything there is a season, and a time to every purpose under the heaven.” Ecclesiastes 3:1

I hope you still take the time to run through the rain. They say it takes a minute to find a special person, an hour to appreciate them, a day to love them, but then an entire life to forget them. Share this story with the people you’ll never forget.  It’s a short message and it will let them know that you’ll never forget them.

If you don’t tell anyone, it means you’re in a hurry.  A pity! Take the time to live!!!

Keep in touch with your friends.  You never know when you’ll need each other or you no longer can keep in touch – and don’t forget to run in the rain!

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