Vasha
Senior Member
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Hi @harveythecat
I think one important challenge with PACE is that the BPS crowd has been very successful in portraying objections as an outsider or minority opinion - they love to compare any objections to climate-change denial etc.
So I think it would be very useful to really stress that the bulk of research and expert opinion is actually on our side at this point, for example could reference the letter from 40 experts challenging the PACE trial.
Perhaps a quote or two from a doctor or respected researcher on what is wrong with PACE and/or the challenges of pervasive misperceptions of the illness - maybe @Jonathan Edwards would be willing?
Thanks for doing this @harveythecat , I look forward to reading whatever you end up writing !
Hi @harveythecat -
I very much agree with @Kyla and @A.B. on general approach: positive discussion of the seriousness of the disease (per the IOM report etc), the promising direction new research is going, a call to address the woeful underfunding and neglect of the disease.
For my two cents, I'd avoid playing up PACE or controversy about what the disease is in favor of describing what the disease is, how serious it is, and what we need to do next. Some issues with highlighting PACE or a controversy in general (not that that is the plan! but if it were the effect) are:
-it gives the psych lobby's argument for them, even if described in negative terms. This is a classic advocacy mistake. The reader may never have been thinking it--but now is.
-It plays up uncertainty rather than progress and what is left to be done--no one likes to support something that is too uncertain
-it plays into the many, many "controversy" focused press pieces over the years that promulgate myths about difficult patients etc etc.
Again, that's two pennies only. Looking forward to see the piece!
Vasha