Tuesday, May 24, 2011
A voice for the most severe ME patients
It is always of interest to read about the ineptitudes of the functionaries who work for the United States Government. We must thank Dr. Joan Grobstein for her letter to Wanda Jones, outlining the abuse dished out to those ME patients who can actually move and attend a CFSAC. With these recent incongruities we are entering a zone of total absurdity and contempt. Something needs to change at the highest levels of the federal government in relation to this ME disease. They have gotten a free pass for too long and they take advantage of it with continued abuse toward these patients.
Consider for a moment the reality of this illness and of those who suffer at the very bottom. This is where the nuts and bolts of this illness presents itself and where research needs to be directed. Natalie Bouton has done a great service for the rest of us and for the uninitiated by giving us the InvestinME sponsored book "Lost Voices" which documents the most seriously ill ME patients. Soon we will be able to see an astonishingly powerful video produced by Natalie and her son Josh. It packs a wallop and presents this illness at its ground zero moment.
Another powerful articulate and sustained voice of the desperately ill has emerged recently and can be viewed here.