A support group member in another state, herself a long-time ME/CFS advocate, recently remarked that no one in her support group seemed interested to hear about advocacy activities. Their concerns were with sharing their symptoms and getting ideas from others on how to treat them, where to find knowledgeable doctors, and finding support in the group – all legitimate and powerful concerns, totally appropriate for members of a support group. Still, she wondered, why aren’t more ME/CFS patients interested in what other patients and family members (advocates) are doing to bring more public and government awareness and funding to their disease?
If you are a patient, doing your best to get through each day, maybe not wanting to “go public” about your illness, why should you care about advocacy?
What are some concerns of patients with ME/CFS?
You may have others to add to this list!
What are the goals of advocacy?
So what patients need, and what advocacy hopes to deliver, match up pretty well!
For more than a year now, the Solve ME/CFS Initiative has had an experienced advocate on staff (Emily Taylor). Emily’s experience in working with Congress and federal agencies and developing great written materials for distribution has both supplemented and guided the efforts of our long-time and newer volunteer advocates, nearly all of whom are patients or family members. Some represent ME/CFS organizations, but many are just concerned individuals, often risking their health to do this work. We are increasing our effectiveness by working together in the U.S. Action Working Group, coordinating and focusing our joint efforts on the most important opportunities as they arise. We have become powerful and respected voices.
So even if you, as a patient, do not or cannot participate in these advocacy efforts, know that those who are able are “out there” trying to make things better for all of us. You are not forgotten or alone. The work is slow and frustrating, but progress is being made. Reach out when you can and let us know how you see advocacy helping you!
Here are some websites you can check out:
President, Massachusetts CFIDS/ME & FM Association
Chair, U.S. Action Working Group
ME/CFS family member
August 29, 2017