Webinar Q&A for “ME/CFS Advocacy Week Training: Best Practices for a Successful Advocacy Meeting”March 13, 2019

ME/CFS Advocacy Week Online Training Part 1: Best Practices for a Successful Advocacy Meeting 
Wednesday, March 13, 2019
1:00 PM – 2:00 PM EDT//10:00 AM – 11:00 AM PDT

Solve ME/CFS Initiative and #MEAction present an online workshop to help you host a successful meeting as part of ME/CFS Advocacy week.


Q: Will you give us the Asks?

A: Absolutely! That information will be part of the trainings in Washington DC and our next webinar training on Wednesday March 20th. You can register at: “Welcome to DC: #CongressFight4ME


Q: Will these slides be made available afterwards? Thanks!

A: Absolutely! We will post them on the website. You can view them at: https://solvecfs.org/wp-content/uploads/2019/03/Advocacy-Week-Training-1-Best-Practices-Meetings-SLIDES.pdf


Q: Will we get contact info for the other people in a meeting so we can touch base before the 3rd?

A: Unfortunately, we cannot share people’s contact information without their permission – due to privacy policies. But we will be organizing our in-person training in Washington DC by state groups and the Facebook group is also available for coordination among participants. We encourage participants to arrive at their meetings a few minutes early to have time to meet one another first.


Q: Will we have name badges to make it easier to find the others in our group?

A: Great suggestion! We will definitely have name tags available


Q: I’m sorry, print out what?

A: Congressional Packets. This is a collection of information that we print out into a small packet for members of congress and their staff to review after the meeting. You can see items from last year’s ME/CFS Advocacy Day packet at: https://solvecfs.org/2nd-annual-cfs-advocacy-week/ (scroll down to “ME/CFS Advocacy Week Materials and Information”)


Q: Thanks! An issue we ran into last year were buying objections. For example, differentiating our illness from others. They don’t support a single illness.

A: Remember, you don’t have to be a policy or science expert. That’s why our team is here to help! Please don’t feel pressured to know the answer to every question on the spot. If the person you are meeting with object for some reason (like in your example) – you can respond by saying “That’s an interesting point. I’ll write that down for our team to follow-up with you on that further.” Please take note of any parts of the conversation that stand out (like an objection!) and include that in your meeting report form.


Q: what organization can we be aware of or utilize (ie the Facebook group) to find out our lobbying partners with as much preparation time – so that we don’t end up meeting in the hallway last minute?

A: There will be several opportunities to meet with your team. You will receive your personalized schedule with your group and meeting times no later than April 1st. You can then use the ME/CFS Advocacy Week 2019 Facebook Group to connect. On Tuesday morning April 2nd, during the EmPOWER M.E. Roundtable event, there will be a networking breakfast with signs for each state in order for participants to meet one another. Also, the In-Person Washington DC Advocacy Training will allow groups the opportunity to meet one another and plan together. There is also a networking reception that same evening from 6pm – 8pm for the same reason. Everyone in attendance will be asked to wear name tags. Finally, for folks who are joining us the morning before their meetings on April 3, there’s a breakfast beginning at 8:30am allowing for groups to meet together and coordinate.


Q: Are groups clustered by States? If not, how are groups established?

Generally, advocacy groups for the day are grouped by states. Sometimes, smaller states will be grouped together and attend one another’s meetings. Individuals who are representing others in different districts will often float between groups on behalf of their proxy and also for themselves. Groups are also coordinated by expertise, ability, partner requests, distance, schedule requests, and personal connection. As you can imagine, there’s a *lot* of careful thought and consideration that goes into planning and coordinating the groups and schedules.

Q: I likely won’t be able to get to the training on the 2nd. How can I get the info I need about the “asks,” etc.?

A: The In-Person Training on April 2nd will also be webcast live for folks who cannot attend in person. Also, that information will be addressed in our next webinar:

ME/CFS Advocacy Week Online Training Part 2: Welcome to DC: #CongressFight4ME

Wednesday, March 27, 2019
1:00 PM – 2:00 PM EDT//10:00 AM – 11:00 AM PDT

Solve ME/CFS Initiative and #MEAction present an online workshop to walk you through joining us in Washington DC for ME/CFS Advocacy Week & Lobby Day, step-by-step.



Q: where can I find the letter from Dec? to read?

A: We will have that on the website www.MEAdvocacyWeek.com in the “Information and Materials” section.

Q: Will people not representing ME be in the room?

A: Meetings will be comprised of 1) ME/CFS Advocacy Day participants and 2) Congressional Members and their staff. That is all. Our meetings will be “ours” and ours alone. However, depending on the location of the meeting (and the congressional business of the day) – your meeting location may vary. Most congressional offices have a private meeting space and, as we schedule early, we expect that the majority of your meetings will have a suitable meeting space reserved. Sometimes, groups are running late or there are unexpected scheduling problems, and your meeting may be forced to take place in a less private setting (like a hallway, shared office space, or waiting area). In these cases, you may have other business of the office going on around you – but those individuals will not be part of your meeting.


Q: Will we have a way to submit feedback on the meetings? Summary of discussion, any questions staff had?

A: There is an online meeting report form for everyone to use. For folks who are more severely impacted, identify a member of your group with the capacity/energy to complete this action. Also, the form will be mobile accessible so you can fill the form out on your phone or tablet in-between meetings. This form will include space for meeting notes, names of staff, contact information, questions asked, support for each ask, and any other items you want to include.


Q: I live locally and anticipate a large number, especially at the Senators office, I would be happy to go to the more distant state where I have a vacation home, can I do that?

A: Your best power and impact is in your home district which is associated at the address where you are registered to vote. You can request meetings in other districts where you own property, work, or go to school – you are part of those congressional districts as well. But, you are considered to be represented and a constituent of your voting address.


Q: Am walking so shortest path would help. Is there an app to navigate in real-time?

A: Our team will provide you with maps, specifically identifying handicapped accessible pathways throughout the Capitol grounds. There’s also a fun interactive map offered by the Architect of the Capitol available at: https://www.visitthecapitol.gov/apps


Q: Are hallway yoga mat breaks ok?

A: Absolutely! Remember, these office buildings are yours and the members of congress work for you.