• Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!
    Standby for updates from Cort. Discussion in this thread

Advocacy Feedback Inquiry


Moose Enthusiast
But the question is how there can be more success experiences, on an everyday basis.
I have never contacted an advocacy group because I don't see anyway they can help
Most people would advocate for better care and meaningful assistance for those suffering now.
I think this is where more local groups may have more success than national groups. National groups are focused on big picture things: research, advocacy, funding, etc. But I think that local organizations tend to focus more on the people and provide more services that patients in their area can take advantage of (ex: support groups, providing help with applying for services). So when you volunteer for a local group (if one exists in your area, that is), even if you might not necessarily make such a large difference in the big picture of funding or treatment for ME/CFS, you might make an enormous difference to an individual. And that is very rewarding.

I am thinking along the lines of using the successful strategies that the MassME group uses. I have been very impressed with their presentation yesterday, and their collaboration with the Dept of Health in Massachusetts for the presentation on invisible disabilities.
I volunteer with MassME, and even though I think we're a fairly successful organization overall, we still struggle with the same issue that @Dakota15 originally brought up here: recruiting and retaining volunteers.

  • How can we get advocates to staying involved and encourage action? How can we engage newcomers to get involved?

This is going to be hard, no matter what. I think most nonprofit organizations are struggling with this right now, but it's even harder for ME/CFS organizations. We're sick, so we're not in a position to give a lot of time and energy. But I think there are a couple of ways we can either work with that or work around that:
  • Instead of putting out a general call for volunteers, advertising specific volunteer tasks or positions can catch people's attention.
  • Break down volunteer jobs into small bites that people think are manageable, and they may be more likely to take them on. For example, create one social media post per week. Or spend 30 minutes per week updating a database.
  • Try to recruit family members of people with ME/CFS. Parents, children, spouses are all excellent potential volunteers who don't have the same limitations we do.
Another option, one nobody likes, is to do less until there are more people to spread the work around. If organizations bite off more than they can chew, then their volunteers will take on more than they can handle (because even experienced ME/CFS'ers suck at pacing at times), and then burn themselves out. It's a vicious cycle. And no one organization can do everything for everyone. For example, MassME decided to focus less on leading advocacy efforts, since that's something Solve ME and MEAction both do so well. Although we support these efforts and participate in them, teaming up with others allows us to put advocacy lower on our priority list, which takes off some pressure.

One other thing: I think it's helpful when organizations really form an intentional community of volunteers that interacts positively with each other. I've found that volunteering is a wonderful way to connect with other people who have ME/CFS--it's been such a positive experience for me socially. That also goes back to the question of what people are going to get out of volunteering.

I'm sure there are more things I wanted to say that I forgot as I was typing, but I'll come back if I remember them.

This is a good and important conversation to have @Dakota15 .