Ember
Senior Member
- Messages
- 2,115
By the CFS Patient Advocate
Thursday, May 30, 2013
Thursday, May 30, 2013
More: http://cfspatientadvocate.blogspot.ca/2013/05/moving-severe-me-patient.htmlI was at the recent FDA meeting. Whether it is this meeting or any other government meetings, no mention is ever made of severely ill ME/CFS patients. No depiction of the real severity of the illness is recorded or given. There seems to be a constitutional allergy to depicting "the core of this illness".
This is true of government bureaucrats as well as patients, advocates, physicians, and clinicians – everyone. Many "half-sick", ambulatory patients give eloquent and heartfelt testimonies at government grieving altars. Regardless of the sacrifice on the part of patients, this information does not seem to impress anyone. Nothing happens. This is a longstanding reality.
It is a structural problem – not embracing the deep seriousness of the illness. No one wants to go there.
ME is a dangerous, debilitating, life-destroying illness of a frightening dimension. The government’s half-baked response to this illness shows great disregard - and manifests incredible cruelty towards patients with this serious illness.
Until those at the center of this illness - those in darkened rooms - are depicted and embraced and understood, nothing will happen at the government level.
In order to set the tone, videos of severely ill patients should be presented at the beginning of any government or private conference on ME/CFS. Voices from the Shadows, Josh Biggs' and Natalie Boulton's very fine film (or similar videos ), should be mandatory - to set the stage and to get the participants in the right frame of mind.
There is clear evidence that the government has no interest in this. Multiple times they have been given the opportunity to present visual evidence of the severity of the illness, and they have said – no. The government is content to give a grieving altar to the moderately ill and leave it at that.
The very, very ill have big problems. Everything around them represents a threat to their health. They need to be protected at every level – protected from doctors, from realtors, from neighbors, from movement, from noise and vibration, from friends, from family, from hospitals, from water, air, chemicals, mold – from everything....