The role of patients association: Israel

Since its foundation 20 years ago, when FM was known only to a handful ofpeople, ASAF has been promoting the rights of patients, creating awarenessand assisting wherever needed in order to help FM patients. As a result ofour activities, awareness of the public and the medical community has beenvastly increased. We take pride in the fact that all of us are volunteers and allof our modest budget is dedicated to the benefit of the patients.Our yearly program includes initiating and participating in conferences andGrand Rounds, reaching out to rheumatologists, neurologists, general physicians, psychiatrists and pain management physicians, to social workers,nurses, psychologists and other specialists in integrative medicine. We aimto educate and promote the importance of finding a faster and more accuratediagnosis, encourage medical research, and introduce the patients' point ofview and their struggle in order to cultivate empathy and a wider understanding of the illness.Another effective tool we use to help connect and empower FM patients area variety of support groups that we have formed throughout Israel, including groups for special populations such as the Jewish orthodox communityor for teenagers, adjusting the content and information to suit their specificneeds. All groups share knowledge and offer support and comfort.Since 2000, in honor of the international awareness day on May 12th, weorganize a yearly conference, cooperating with leading hospitals and thebest specialists in Israel, where patients and their families are introduced to the newest innovations and various ways to cope with FM. In preparationfor this awareness day, we collaborate with active Facebook groups and volunteers, together organizing the awareness campaign. Our activities encouraged HMOs, hospitals and private practice providers to open complementary medical centers throughout Israel, providing a variety of treatments.ASAF has been actively promoting patients' rights for 15 years, and havebeen instrumental in the fight to have the Social Security Institute recognizeFM as a disability, enabling patients to receive fair entitlements and properpension payments. We appealed to the Supreme Court three times, and theyeventually ruled in our favor.This past year the Covid-19 pandemic created a unique challenge and weadjusted our activities accordingly. Among chronic patients, especially FMpatients, the unknown is problematic and very difficult, as even in normaltimes they feel that their body has betrayed them and they can't keep a normal routine. Staying at home for a long and unknown period of time addedmore stress. It exposed their condition, which they had often concealed, tofamily members. Our support line became crucial for the patients and family members, contacting us as they longed for a sympathetic ear. We werethere for them.Cancellations of events, support groups and conferences occurred and weadapted by moving the lectures from the halls to zoom sessions, lectures onFacebook and webinars. We offered patients knowledge in diverse areas ofinterest.When the vaccines finally arrived to Israel, a new concern arose. Is the vaccine safe for Fibromyalgia and CFS patients? What are the side effects?We have published clarifications and guidelines to ease the concerns of thepatients, and indeed many of the patients in the appropriate age group havebeen vaccinated, with no significant side effects thus far.In addition, we are receiving inquiries from Covid 19 recoverees describingsymptoms very similar to FM, and some actually been positively diagnosed.We are studying the findings, and are looking for answers.We are always pleased to be a source of comfort when needed, and a reliablesource for information-especially in times of crisis like this.