Dec. 2018 FFAME Minutes: Advocating for ME while Maintaining Privacy

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MINUTES: Friends, Family and Allies for ME (FFAME) meeting: Saturday, December 1

Primary Discussion Topic: Advocating for ME while maintaining privacy for ourselves or loved ones
  • For some of us, privacy isn’t an issue, as the pwME (person with myalgic encephalomyelitis) may be happy with any advocacy we can do.
  • Some pwME do not want to be public about their illness, or they may wish to have control over how public their illness is. Reasons could include fear of losing jobs (or being unemployable in the future if it is widely known they are ill), not wanting to be defined by their illness, and concerns about losing friends or being treated differently.
  • If the pwME in our life has expressed a desire for privacy, it is important to respect their wishes, even if this frustrates us as advocates, or seems to limit what we can do.
  • Even if the pwME in our life is fully public about their illness, it is important to recognize that we won’t always know what’s best for them.
  • Communication with the pwME in our life is important. They may want to know a lot about the work we do, or only a little. Or they may wish to know about it but be too fatigued to take it all in. It is good to establish how much the pwME in our life wants to know, and to let them decide how involved and informed they wish to be about our advocacy work.
Ways to Advocate while Respecting Privacy 
  • Do our own research to learn about various actions and ME resources.
  • Create anonymous or semi-anonymous e-mail addresses and/or social media accounts so as to participate in the online ME community. Multiple people indicated they have already done this. Consider using the words “ME,” “CFS” or similar in the e-mail address or social media name.
  • If the pwME does not wish us to talk about their illness or our advocacy with their family or friends, we can still contact local government representatives, sign petitions, attend protests, etc., without involving members of the pwME’s social circle.
Other Discussion 
  1. Jane K. is an experienced psychotherapist who is offering free, one-on-one phone consultations for caregivers and allies of people with ME. This is not ongoing therapy, but rather an opportunity to talk once or a few times with a therapist who understands the many challenges of ME.  You can reach her by email: [email protected]
  1. Given that ME disproportionately affects women, and that diseases that affect women more than men have long been underfunded, it was suggested that we could reach out to various women’s organizations, to see if they would be interested in championing ME research/funding as an issue.  We might be able to see if charities dedicated to other female-dominant illnesses (such as Multiple Sclerosis) specifically do this.
  2. Following the November meeting, several members have been making/sharing business cards and/or ME information cards reflecting their ME advocacy.  In addition to contact information, these often include some facts and statistics about ME.
  3. A reminder that there are some good documents on the #MEAction Network website, under Tools, which can be used as advocacy handouts.

LET US EXPAND
We would like to grow our group.  Please make an effort to invite a friend or fellow ME ally to our January meeting.
NEXT MEETING:  
January 5, 1 p.m. California, 4 p.m. New York, 9 p.m. London
RSVP here.
Join the online discussion – join our Facebook group.

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