Consequences of Stigma, Disease Definitions, and Sociological Impacts with ME/CFS

[Rowena Ilagan]

Emily Taylor, Advocacy and Engagement Manager of Solve ME/CFS Initiative (SMCI), was invited to be a guest lecturer on ME/CFS at the University of Southern California (USC). She spoke at a class on medical sociology examining how disease definitions impact different populations and processes. To watch a clip from Ms. Taylor's lecture,go here.

 

[Wolfiness]

This is great but we HAVE to stop saying "real" instead of "organic"/"non-psychiatric" or whatever.

 

[A.B.]

This is great but we HAVE to stop saying "real" instead of "organic"/"non-psychiatric" or whatever.

We say real because for a long time, there were efforts to make believe that it was a figment of the patient's imagination.

In a physicians booklet from the 2000's, that I have at home, it said that the outcome depended in good part on the belief of the patient. This is just an nicer way to say "all in the head". Or "mostly in the head" but let's not split hairs. The message has been for years that this is not a real condition.

 

[Wolfiness]

Yes I know that, I really don't need that kind of MEsplaining, and you know that when patients insist "my disease is real" it's a trap set by doctors who say "Hoho, so you're saying mental illness isn't real then?" and already we're on the back foot.

And you know very well that White et al have kept souping up their theories with more and more biological flim-flam to accommodate all the "but look at all the biological dysfunction!" arguments so that when patients say "my disease is real" they can say "Yah we know, check out all the cytokines" without having to change the substance of their approach.