The “crime” we are faced with is that
HHS has ignored us,
HHS has ignored CFSAC,
HHS has refused to develop a strategic plan for ME(cfs),
HHS has refused to openly and honestly engage with us and
HHS has secretly developed and made arrangements for the IOM study.
The common thread here is HHS.
And yet, it feels as though ME(cfs) advocates and patients are accusing each other of being the “criminals” rather than focusing on HHS.
If we let HHS divide us into tiny factions pitted against each other, HHS will definitely “get away with” their crimes against us.
It is important to remember who the “criminal” is here.
We should choose instead to focus our grievances, energy and actions on addressing HHS’ “crimes” and doing everything we can to achieve justice for everyone affected by ME(cfs).
Had HHS had an engaged, and open relationship with us before now, the news on Sept 23rd 2013 from the CFSAC ListServ about the IOM study (“We are pleased to announce that the Institute of Medicine (IOM) will begin conducting a study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome this month…..”) might have been a nice surprise present.
Instead, coming on the heels of so many recent instances that have added to the ME community’s distrust of HHS, it is difficult to have trust and confidence that HHS has our interests at heart. (https://speakupaboutme.wordpress.com/2013/09/27/hhs-strategic-plan-goal-number-4-not-implemented/ )