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?

• Finding a primary care provider who understands the illness and who is willing to help
• Finding specialists who are willing to consider the “whole picture” when treating one symptom
• Finding treatments that work for the symptoms I have
• Finding a cure
• Help getting disability benefits if needed
• Figuring out how to best manage from day to day
• Finding other patients to talk to, especially patients like me
• Keeping my spirits up and hope alive
• Dealing with the depression and anxiety produced by ME/CFS
• Getting my family and friends to understand my condition
• Finding local resources to help me survive (help at home, transportation, getting groceries, etc.)
• Getting a diagnosis
• Developing an overall treatment plan that makes sense for me

You may have others to add to this list!

What are the goals of advocacy?

• Increasing (and even preserving) funding for ME/CFS research from both private and government sources (basic science of the disease, finding a biomarker, clinical/drug trials)
• Promoting and carrying out medical education about ME/CFS so that primary care providers, all specialties, and school nurses can recognize ME/CFS in both adults and children and provide appropriate treatment
• Increasing public awareness of ME/CFS so that family members, friends, and employers can be more understanding and supportive to patients
• Ensuring that “official” information about ME/CFS (government, medical education content and websites) accurately reflects the experience of patients;
• Evaluating and verifying published research (e.g. pushing for retraction of the flawed British “PACE” study which recommends treatments that are known to harm patients); pushing for removal of outdated or misleading information (Graded Exercise Therapy, Cognitive Behavioral Therapy as recommended treatments)
• Working with government agencies at all levels (federal, state, even local) and representing the patient’s voice on the above

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:

• Massachusetts CFIDS/ME & FM Association
• Solve ME/CFS Initiative
• #MEAction
• U.S. Action Working Group
  

Charmian Proskauer
President, Massachusetts CFIDS/ME & FM Association
Chair, U.S. Action Working Group
ME/CFS family member
August 29, 2017