Dr. Yes
Shame on You
- Messages
- 868
Cort, I will, in future, try to remember that you are speaking your truth, even as you speak as if it were the truth. If I haven't already made it clear, when I post I am speaking my truth.
Hi Oerganix.. great posts as usual; I know by 'truth' above you meant 'opinion'...
The problem of course is when one person's opinion becomes policy for everybody ( i.e. prevailing medical attitudes toward exercise and behavioral modification in ME/CFS) or an instrument that reinforces that policy (i.e. the CAA and some of its supporters' positions on same). And of course, if one person's therapy is another's poison, yet the former is the one setting or reinforcing the policy. Then we have a problem, and the illusion of a democracy or community of opinion breaks down. This is unfortunately the situation with the CAA and the ME/CFS community especially over the issues of exercise/activity and CBT.
If the CAA will not listen to the many voices that have been raised to it over the years on these issues, then it fails at least in large part as an advocacy group. If its positions - no matter how nuanced - are ultimately potentially harmful to many of its constituency (like those of us who have posted here over the months) then how can it call itself 'our' advocacy group with a straight face? And how can those who support it say they are really on 'our' side? We should strive to ACTUALLY be on the same side, to agree that no members of our community are mistreated or left out by our common positions, instead of blindly supporting the positions of a handful of individuals who happen to hold the reins of an organization.
The current positions of the CAA on exercise/activity and behavioral modification are ignorant of political and physiological reality and dangerously neglectful of many PWC, including the most vulnerable (and therefore most in need of advocacy). The fact that these positions are promoted, for example, in the CME, which is intended to educate physicians about how to treat us, further makes this not a matter of opinion vs. opinion, but of some quality of life vs. terrible suffering, of livelihood vs. poverty for so many of us.
The CAA is used to heavy criticism, apparently.. do its members REALLY think that all those who criticize it are just naive or unrealistic? (Or even 'kinesiophobes'?)
The CAA will grow in strength when it includes all of our needs in its positions. Divisions only grow because it ignores these needs. If it continues to do so, it is time for the top of the organization to go - that is the only way it can save itself.
As for supporters of the CAA who would argue even the points raised in the last several posts, and ignore the personal stories told, I can only say that you are apparently more interested in the abstract concepts of an organization and of 'advocacy' than in the human beings that are ALL supposed to be advocated for.
I am sick of seeing us being "handled" by the CAA in familiar politico-bureaucratic fashion, or of being challenged incessantly by the repetitive and self-contradicting arguments of at least one of its supporters, without ever having real policy changed to meet my needs and those of many others who desperately, desperately need it.
Please stop ignoring us -- and don't try to tell us you are 'not ignoring' us until you have changed your official and unoffical positions such that they meet our needs.