Unraveling the Fray

[Nielk]

New Blog Post by Anonymous

“ME/CFS” advocacy is fractured. I would prefer that was not so and that every advocate subscribed to the same advocacy philosophy of holding the government accountable.

For example, I strongly object to welcoming the CDC, with its atrocious “CFS” history and no genuine course change, to the fold. Until this day, the CFS Toolkit (touting GET and CBT) has not been recalled. Surely, this must be the lowest of bars. It shouldn’t be the only condition, but it seems like a “must have” condition for considering the possibility that the CDC has turned over a new leaf, let alone for promoting any CDC efforts. It makes my toes curl to see the intramural NIH study cheered on even though one of NIH’s ME somaticizers Dr. Brian Walitt is in charge of it. But what concerns me the most is SEID, the new definition for CFS and ME by the IOM (now called the National Academy of Medicine). The IOM delivered a criteria that captures a more heterogeneous patient group than the CDC’s Fukuda definition, with complex harmful consequences.

Read entire post here - - https://relatingtome.net/2018/06/15/unraveling-the-fray/