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In this edition of Sunday Conversations with MassME, members of the association discussed how it has stayed strong and relevant throughout 40 years. An overview was given for each of the past four decades, each bringing important changes for this misunderstood and stigmatized disease. Learn about our unique patient-led organization that has influenced progress and now helps patients more than ever.
This presentation kicks off MassME's 40-year anniversary celebration. Stay tuned for more events to follow!
This program is part of "Sunday Conversations with MassME", a monthly speaker series with discussion on a wide variety of topics. For more information on this and future Sunday Conversations presentations, please check out www.massmecfs.org/sunday-conv...
Chapters
00:00 Introduction - Susan Buckley
03:42 Decade 1 - Charmian Proskauer
14:35 Decade 2 - Phil Chernin
23:56 Decade 3 - Hayla Sluss
37:30 Decade 4 - Helen McGunnigle
44:39 Interview - Ken Casanova and Jehan
58:01 Conclusion - Susan Buckley
Quiz for decade 1: Which of these terms has been used for ME/CFS?
- CEBV
- Yuppie flu
- CFIDS
- Icelandic disease
- Mass hysteria
- Systemic Exertion Intolerance Disease
Quiz for decade 2: What are some of the initiatives Mass ME/CFS & FM originated?
- Wrote a disability handbook for patients
- Wrote a handbook for support group leaders
- Wrote a primer for physicians and allied health professionals
- Initiated an ME/CFS educational program for school nurses
- Hosted the largest public viewing of Unrest
Quiz for decade 3: Which of the following agencies has been a target of Mass ME/CFS & FM advocacy?
- National Institutes of Health (NIH)
- Centers for Disease Control (CDC)
- Food and Drug Administration (FDA)
- Massachusetts Department of Public Health (MA DPH)
- Massachusetts Department of Rehabilitation Services (Mass Rehab)
Quiz for decade 4: Why is the 2022 addition of a specific ICD code for ME/CFS, G93.32, an important milestone?
- Enables documentation of ME/CFS in medical records
- Allows more precise tracking of ME/CFS and related healthcare
- Makes it easier for healthcare providers to get reimbursed for ME/CFS-related care
- Raises awareness of ME/CFS among providers
Quiz answers: All of the above!