The Israeli Perspective - What we've learned Over the Last 2 Decades

Sharon Gur
Asaf, Fibromyalgia and CFS Nonprofit Organization, Israel

ASAF association for fibromyalgia, (FM) and CFS, was founded 20 years ago by a small group of young women with common background - all had Fibromyalgia. Back then, there was no information, no known cure and no support. We felt lost, and seeking support, we decided to work together in order to raise awareness to FM among doctors, medical teams and patients alike. 
Only few rheumatologists knew about FM and recognized it as illness. Family physicians were not aware of FM, there was no medical treatment offered, no research. We felt that no one cared.
Our foremost task was and still is, getting appropriate recognition, acceptance from the medical,  state authorities and the society.  
From this modest start and with hard work ASAF became the voice of the patients  
It is a Sisyphean process we call: From transparency to Visibility.  Approaching rheumatologists, pain physicians and family physicians in various occasions, arranging dedicated meetings, joining medical professional conferences and adamantly lecturing in order to explain and convince. We approached medical teams, nurses, and alternative medicine practitioners etc. trying to educate and gain support.
The journey was, and still is, a long one. Although specific medicines were finally introduced worldwide, but, at the beginning, they were not approved in Israel as part of the national healthcare insurance funded drugs. Therefore, we advocated and eventually succeeded to make it possible for FM patients to purchase these medicines at a considerable discount. 
A decade ago we encouraged a research aimed to explore the benefits of Cannabis use for FM patients and later approached the Ministry of Health, appealing to include FM patients among those who are given prescription to legally use Cannabis for pain relief. 

We also realized that without recognition the patients had no rights under social security law. Insurance companies refused to cover claims of income protection insurance for FM patients.
10 years ago, ASAF approached the Social Security Institute in order to create a dedicated deficiency article in the disabilities list, so patients will get proper recognition and fair entitlement.
We had to appeal to the Supreme Court twice. Eventually it ruled in our favor. We are finally approaching an agreement with SSI. That will be a major change for the patients.
We approached the media numerous times, got articles in newspapers, interviews on the radio and on television shows and social media - Facebook etc.
ASAF is a safe haven for patients – our message to them is: "you are not alone; we understand your suffering and wishes, we want and can help". 
Our mission is to empower the patients and encourage them to take full responsibility on their life. Our support groups enable patients and their families to be part of a larger group of people that suffer similar symptoms. 
An important tool is our phone help line, open to all patients and their families even before they were diagnosed.
ASAF reaches out to reclusive populations in Israel, such the orthodox Jews, share knowledge and offer assistance and comfort.
We encourage patients to follow up with doctors’ recommendation on physical activity, which is most effective for FM patients. We suggest trying hydrotherapy, CBT and T'ai Chi. Part of our responsibility is to alert patients from treatments offered by charlatans.  
Our yearly conference is dedicated to familiarizing patients and families with the newest innovations and allowing them to meet people with similar interest and struggle. Membership is open to all.
ASAF cooperates with other patients’ organizations that complete our activities for the mutual benefit of all.
It is our life mission; all of us are volunteers and dedicate our time to our goals. 
In the past 20 years ASAF helped thousands of patients. Let’s do more, much more.