WHAT TO LOOK OUT FOR AT THE CDC’S SEP. 2020 ME/CFS MEETING

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Mark your calendars! The CDC will hold its next ME/CFS Stakeholder Engagement and Communication (SEC) conference call on Wednesday, Sept. 23 at 3 pm Eastern Time. Find information on how to call into the meeting here. The CDC program staff only hold SEC meetings a couple of times a year so now is your chance to participate! 

These federal agency meetings are an opportunity to make our voices heard. All of us that live with ME, or care for someone with ME, are STAKEHOLDERS in this fight against a disease that has taken so much from us all. We need to know what our federal agencies are doing to address the ME/CFS crisis and hold them accountable with our questions and our input.

The Centers for Disease Control and Prevention (CDC) is a U.S. federal agency that provides critical functions at a widespread scale, such as disease surveillance, epidemiologic research and educating healthcare providers and the general public.

If you are able, please join us at this meeting and together let’s make our voices heard! #MEAction is here to help you advocate:

  • Is this your first time at these meetings, or do you just need a refresher? Check out our tips on how to participate and our simple questions suggestions
  • Are you an experienced advocate? Skip to our official letter with a detailed list of questions that highlight the critical issues to ask about at the meeting.
  • Does your health prevent you from participating? #MEAction advocates and activists have your back. We’ll be there advocating for you and we’ll let you know of any developments after the meeting. Our official letter to the CDC can be viewed here.

Federal agencies often work at an incremental pace, and their bureaucratic intransigence to a community in crisis is rightly frustrating. That is why showing up together as a community, over and over again, is essential to this fight. We demonstrate our solidarity and strength in numbers and we advocate forcefully for real change now for people with ME.

How to participate in CDC’s SEC call:

Your involvement in the CDC’s ME/CFS Stakeholder Engagement and Communication (SEC) call is vital! We need your voice to help advocate for people with ME! If this will be your first time participating, or you just need a refresher, read on for what you need to know. Still have questions about how to advocate? You can email us at [email protected]

The CDC program staff typically hold SEC meetings a couple of times a year. The last SEC meeting was held on February 13, 2020 (transcript & call audio here).  The CDC also presented at the Interagency ME/CFS Working Group Meeting on August 11, 2020 (the CDC update starts at 25:30).

Call Format:

  1. Program updates
  2. Featured guest speaker (typically an ME/CFS clinician or researcher)
  3. Community Q&A

#MEAction previously requested that CDC make changes to its SEC call format. These have now been implemented, and they ensure that every stakeholder call includes both a CDC progress update and an opportunity for live Q&A with the community.

Call notices, reminders and RSVP:

  1. The call notice with complete join instructions can be found on #MEAction’s event page or at the CDC’s website
  2. You can email [email protected] to request to be added to their email list and notified whenever the next call is announced. #MEAction will also notify those who have signed up to receive emails or follow us on social media (facebooktwitterinstagram).
  3. You can use our event page to add the call time to your calendar and RSVP to let us know you plan on attending.

How to Join the call & Ask Questions:

  1. The call can be dialed into by phone (dial 1 888-391-6584, participant code: 2051049) or streamed live as an Adobe Connect webinar (test your connection).
  2. In order to ask a question you MUST dial in by phone. The Adobe Connect webinar is only for viewing/listening to the presentation.
  3. The operator will explain how to unmute and ask your question before they start the Q&A portion of the call. 

Privacy & Accessibility:

  1. The content of calls is directed to patients, caregivers, health care professionals, and other interested parties, but CDC has no control over who participates, and transcripts of the call are publicly available on the CDC website.
  2. If for privacy reasons you don’t wish to disclose your real name, use a pseudonym. 
  3. CDC recommends exercising discretion on disclosing any sensitive content as confidentiality during these calls cannot be guaranteed.
  4. CDC supports participation in all events by persons with disabilities.  If you require a reasonable accommodation for a disability, please contact [email protected]  as soon as possible with details of your request.

Closed captioning for the call is available here (Event ID: 4537697).

Tips for Preparing a Comment or Question:

  1. Thank you for participating! We need your voice to help advocate for people with ME! Have a question for us? Email [email protected]
  2. Time for Q&A is limited so try to be as succinct in your questions or comments as possible. We recommend writing out what you want to say in advance.
  3. Briefly introduce yourself and your relation to ME (e.g. “Hi I’m John and I’ve been living with ME for 14 years…”)
  4. We are stronger together! While you can’t show off your #MillionsMissing t-shirt on a call, you can reference your solidarity with the rest of the #MEAction community and demonstrate our strength in numbers. You might say:
    • “…I’m part of the #MEAction network…” 
    • “…I’m an advocate with #MEAction Georgia…” 
    • “…I support #MEAction…”
    • “…I share #MEAction’s concern about XYZ…”
  5. Be as specific and direct in your question as possible. This will make it more difficult for the agency to evade an answer.
  6. Not sure what to ask about? Check out our published list of questions to see what we think are the pressing issues.  Or choose from one of these simple suggested questions.
  7. Make it personal. Why does this issue matter to you? Sharing a brief anecdote can be really powerful. For example see Liz Burlingame’s public comments where she relates a recent visit to her doctor and then links it to a specific request of the CDC.
  8. As you won’t know what will be covered during the meeting or what questions will be asked ahead of yours, it is a good idea to have a couple of questions prepared.

Things to look out for at this meeting: 

#MEAction has sent a letter to the CDC laying out what our questions are going into this call. These are areas we hope the agency will address in their program updates, and we encourage you to address these issues on the call and press for more details. The question topics include:

  1. Proactive Outreach to the Medical Community
  2. Comprehensive, Equitable Epidemiological Strategy
  3. Widespread Public Education 
  4. Meaningful Community Engagement

For details, please read our letter to CDC.

Simple suggested questions to ask at meeting:

Don’t have the capacity to read through the entire list of questions we’ve included in our official letter? That’s ok! Here are a few simple suggested questions we’ve formulated for you. If a caller has already asked one of these questions you can simply restate how important this issue is to you as well:

  1. “The US ME/CFS Clinician Coalition website, mecfscliniciancoalition.org, is an invaluable new resource to provide clinicians with expert information on the diagnosis and treatment of ME/CFS. Will the CDC place a link to it on their website, actively promote it to national medical associations and medical schools, and incorporate it in their ME/CFS clinical education campaign?”
  2. Both Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) are still recommended by some healthcare providers. We need the CDC to clearly and strongly disavow any supposed “treatments” that attempt to convince patients they are not sick, just deconditioned. Will the CDC issue and proactively circulate a firm statement refuting GET and CBT treatments that are based on flawed, psychogenic disease theory?
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