"The Why: The Historic ME/CFS Call To Arms": new book by Hillary J Johnson

[chrisb]

they kept stating that people misunderstood what they meant by CBT and GET,

If, as you say, they kept quoting PACE it must be assumed that what they meant was CBT and GET as defined within the PACE protocols. If they meant something other than that they should have defined their terms, and stated the evidence upon which they relied. That could clearly not have been PACE if their definition was changed.

 

[Charles B.]

It might coincide or overlap--but Kennedy is an anti-vaxxer from the left, not the right. that's a big difference. I don't know that your assumption about his audience is warranted. You're right about attitudes toward long Covid online, but I don't share your belief that these are Kennedy's audience. His audience would perhaps more likely believe long covid exists and is being caused mainly by vaccines.

Even if the audience is more favorably predisposed to left wing policies, contempt for ME/CFS is a longstanding point of bipartisan consensus. Again, I don’t see anyone listening in sprinting to the vanguard of ME advocacy. Nor do I see their views permeating any discussions on disease processes or treatment possibilities. Even if they did, they wouldn’t be any more pseudoscientific than some of the myriad theories surrounding ME over the years, and some of those aforementioned theories have been championed by folks involved with ME awareness/advocacy.

Just to be unequivocal on this, I don’t endorse any of the Kennedy positions in this space beyond his admission that patients in our community are routinely dismissed and excoriated by physicians. Hardly a heterodox stance.

 

[Sly Saint]