ME/CFS Israel, a pioneering organisation dedicated to raising awareness and providing accurate information on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), has achieved remarkable milestones within just a year since its foundation. As the newest member of the World ME Alliance, ME/CFS Israel has made significant strides in combatting misinformation, fostering relationships with health officials, and empowering individuals affected by ME/CFS. Their accomplishments have transformed the landscape of ME/CFS awareness in Israel, ensuring that accurate information is now readily accessible to those who need it most.
Spearheading Change in Awareness and Information
Recognizing the urgent need for accessible and reliable information, ME/CFS Israel has developed a comprehensive website offering the latest insights into ME in Hebrew. This platform serves as a valuable resource, providing educational materials, research updates on ME. By consolidating reputable sources, ME/CFS Israel ensures that individuals, caregivers, and healthcare professionals can access accurate information that empowers and informs.
One of ME/CFS Israel’s notable achievements has been the complete overhaul of Google search results for ME in Hebrew. Previously, stigmatizing and incorrect information prevailed, further perpetuating misconceptions about this debilitating illness. By diligently reaching out to health bodies they have succeeded in either getting out-dated information removed, or in some cases replaced with better information. Individuals searching for ME/CFS-related terms in Hebrew can now find accurate resources and support, breaking the cycle of misinformation and providing a vital lifeline to those affected.
ME/CFS Israel understands the importance of collaboration with health officials in effecting lasting change. The organisation has actively engaged with government representatives and health authorities to raise awareness of ME and advocate for improved care and support. For instance, ME/CFS Israel made concerted efforts to reach out to over 100 rheumatologists in the country for World ME Day 2023, helped organise a lecture about Long Covid and ME/CFS at an official Health Ministry conference, and joined health officials at GP conferences to share personal stories. These initiatives are vital in bridging the knowledge gap within the medical community and establishing a network of knowledgeable professionals.
They also participated in the World ME Day initiative in other ways, creating an informative explainer video focusing on post-exertional malaise (PEM), a hallmark symptom of ME, and organising a community lecture specifically exploring PEM.
ME/CFS Israel understands the power of media in shaping public opinion and knowledge. One of their members had the opportunity to be interviewed for a radio segment for World ME Day, allowing them to share personal experiences and accurate information about ME with a wide audience. They also published an op-ed in a leading news portal for doctors about gender discrimination in health care and the relationship to the underinvestment in ME, drawing the attention of dozens of doctors.
This organisation has quickly emerged as a leading force in transforming the landscape of ME/CFS awareness and information in Israel. ME/CFS Israel’s remarkable achievements within a year of its establishment serve as an inspiration to the international ME/CFS community, demonstrating the power of advocacy, education, and collaboration in effecting positive change.
We continue to look for more national ME organisations to join the World ME Alliance – if you are interested in finding out more look here.