Julie Rehmeyer on Science and ME/CFS

Julie Rehmeyer on Science and ME/CFS

Julie Rehmeyer, an award-winning science and math writer, was recently interviewed about how her experience with ME/CFS has affected her perspective on science. The insightful piece ranges from a discussion of how the CDC’s treatment of ME/CFS has lessened her trust of institutions of science to how her experiences have changed her viewpoint on people with skeptical opinions on scientific issues. The interview has struck a chord with many on the #MEAction team since we have also changed our perspective on the scientific establishment after witnessing how poorly it has handled ME/CFS.
In reference to the CDC’s treatment of ME/CFS, Julie explains:

The CDC [Centers for Disease Control and Prevention], for example, has made some pretty big mistakes in handling CFS, mistakes that continue to hurt patients. For example, they created and pushed and continue to use a really broad definition of the disease that includes lots of patients whose primary problem is depression, or who may be just tired and stressed. Their definition doesn’t require the symptoms that are especially characteristic of the illness, particularly the way that too much exertion makes patients really, really sick (and for severely ill patients, by the way, “too much exertion” can mean brushing their teeth).

On how Julie’s perspective on science has changed after seeing how the science establishment and media has treated ME/CFS:

 

The whole thing has been really shocking for me. It’s had a huge impact on my perspective on science and the world as a whole, and there are a lot of controversial issues where my emotional stance has changed in a really big way.

Read the full interview
 
Update: Julie Rehmeyer’s piece has now been translated into multiple languages including French, Dutch, Norwegian, and Spanish.

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