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A comment by anonymous for the New Year

Responsible evidence-based decision-making acknowledges the possibility that it is sometimes the evidence, and not always the subject, that is lacking. Even the most conclusive studies are still statistical arguments – concluding what is *likely* to be repeated in *most* cases, not what is unequivocally true. When you base your decisions on a lack of evidence, you are in even deeper theoretical territory. I'm sure you are familiar with the adage that "absence of evidence is not evidence of absence." Unfortunately, while you have the luxury of arguing these finer points of scientific epistemology, sufferers of this disease live very real, very empirically awful lives. And yet you are withholding their *only* treatment option? Can you find the humility to consider that inconclusive research is not the same as an identified threat, and give the sick the option to find out for themselves if they can be helped by this drug? Sufferers of this disease are already in a statistical minority; please don't marginalize them any further.

  1. # Bob Miller on 3 January 2013 at 2:45:

    Thank you Anonymous, this is the point some tried to present at the meeting.

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ME/CFS Facts

Center for Disease Control on CFS

Wikipedia on Rintatolimod

A patient who was at the 20 dec FDA Arthritis Advisory Committee meeting about the approval of Ampligen

Audio recording of above meeting

Alternative names for CFS

FDA on postmarket REMS programs



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