Ahead of the May 2016 #MillionsMissing protests, members of the US protest steering committee drafted a set of demands to the US government relating to research and medical treatment for ME. After the protest, we solicited broader community feedback via an online survey, which was completed by 191 respondents.
The survey demonstrated overwhelming support for the demands, with the four high level demands each receiving at least 90% support. The supporting rationale and details each received more than 84% support. The detailed survey results are available here. After the September 27th protest, we plan to review suggestions to refine the demands to make them even stronger.
#MillionsMissing ME/CFS Protest Demands
On September 27, 2016, at the #MillionsMissing demonstrations, Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients and families, advocacy organizations and individual activists call for the US Department of Health and Human Services and its agencies — especially the NIH and CDC — to implement the following list of demands.
Our goal is to give the 1 to 2.5 million disabled American ME/CFS patients their lives back, and to prevent even more children, teens, young adults and adults from joining the ranks of the millions who are already missing — missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease. Millions of dollars are also missing from ME/CFS research, and millions of medical providers are missing out on proper clinical training to diagnose and help patients manage this devastating illness.
For ME/CFS patients and their families, we demand:
1) Increased Funding and Program Investments
250 million in funding and program investments, commensurate with the disease burden
2) Clinical Trials
Clinical trials to secure medical treatments for ME/CFS
3) Accurate Medical Education to Improve Quality of Clinical Care
Improve access to and quality of clinical care through appropriate medical education
4) A Serious and Urgently Executed Commitment
HHS leadership, oversight and a serious commitment to urgently address ME/CFS
These are identical to the demands assessed in the survey, with the exception of two changes:
- “to improve access to and quality of clinical care” has been added to the Medical Education bullet to reflect the broader intent of that section of the demands.
- “Urgently Executed” has been added to the Serious Commitment bullet to reflect the broader intent of that section of the demands.
Reviewing the demands after September 27th
Despite the very high level of support for the current draft, we view the demands as a living and evolving document. We hope to consider and incorporate some of the suggestions we received in the qualitative feedback sections. Examples of suggestions to refine the rationale and details include:
- Increase the funding for each year of the RFAs and clarify the basis and intended use of the $250M requested for NIH funding
- Call for the use of the Canadian Consensus Criteria for ME for all research, and potentially in clinical care, too. (Most called for CCC but a few called for the ME-ICC)
- Incorporate more specific demands about issues regarding access to and quality of clinical care, including issues around disability and insurance
- Reconsider the demand to house the disease in the neurological institute (NINDS), as that might not be the most appropriate institute, and support from multiple institutes will be needed
- Standardize the name used throughout the document. There were mixed views on ME versus ME/CFS that will need further discussion
- Edit the document for readability and grammar
Given our the very high support for the demands as-is, we have decided to defer the discussion to allow us to focus on planning a successful protest.
View the full USA Protest Demands here.