I've been thinking about #longCOVID and #MEcfs communities and there's only one thing that I feel hasn't been articulated: the recovery/improvement narrative and how carefully-crafted it is by those who are in the community space. #NEISvoid (1/7)

When first ill, I was enthused by any progress I made. I was eager to report what helped me to improve and I did so, with confidence. So I was surprised when veteran members replied: "that might work for YOU & that's good", "you don't know that will work for others". (2/7)

I changed my mind so quickly in part because what I said was constructively criticized and because I was there, listening & learning, to those w/more experience than me... The same way not every cancer drug is right for everyone with cancer, so it goes for ME. (3/7)

However, people in a position of power may not receive the same criticisms. They may come in certain that they are too smart to be disabled, and leave thinking the same, provided they don't engage constructively with the disabled community. (4/7) #NEISvoid

Blaming people for not recovering through the interventions that helped you is unethical and illogical. It also has a flip side: saying that because an intervention did NOT work for you, it can't help anybody. This is equally demeaning to those w/small successes. (5/7)

This comes down to recognizing that different people's bodies respond differently to different interventions -- even when they have the same diagnostic label. (6/7)

It can be tempting to believe one has some secret key to wellbeing, unlocked by superior intellect and hard work. But ethical folk emphasize that improvement isn't a gift given to the deserving, but all too often, the luck of the draw. (7/7)