Major Update: The #PwME4ICC Petition to HHS Has Been Delivered!
Jul 14, 2019 —
On July 8, 2019, I, along with activist Eileen Holderman, met in Washington with a Senior Advisor of the Office of Intergovernmental and External Affairs of the Department of Health and Human Services (HHS) to deliver the petition and discuss the concerns and requests of #PwME4ICC.
Along with the petition binder, we delivered hard copies of the International Consensus Criteria (ICC) and the International Consensus Primer (IC Primer), and the Open Letter to Secretary Azar.
The major points stressed at the meeting were; the history of neglect, the human and financial costs, the scientific evidence, the institutional malfeasance towards myalgic encephalomyelitis.
#PwME4ICC demands to HHS:
-use ICC for all research, programs and medical education
-use IC Primer for all medical education and CMEs
use the proper name - myalgic encephalomyelitis
stop using SEID (name and definition) in research, diagnosis, medical education, and coding
We were promised that HHS will look into these matters and we should expect a reply from them.
You can read all the correspondence we had with HHS here
Please read the Calls to Action for #pwME4ICC here
In the meantime, we are still running the petition until we receive an acceptable resolution.
Thank you for your ongoing support,
Keep fighting for people power!
Politicians and rich CEOs shouldn't make all the decisions. Today we ask you to help keep Change.org free and independent. Our job as a public benefit company is to help petitions like this one fight back and get heard. If everyone who saw this chipped in monthly we'd secure Change.org's future today. Help us hold the powerful to account. Can you spare a minute to become a member today?I'll power Change with $5 monthly