Why are people not affected by MECFS interested in our illness?

[MeSci]

I think that the reason most people make negative comments is that we are portrayed in the media as not-really ill, lazy, attention-seekers, easily cured with a bit of psychoquackery and exercise.

The media exert a huge influence - probably on doctors too. And doctors also have little education in ME, and what education they get tends to be wrong.

Most people will believe the loudest voices and the majority of coverage.

The extreme fluctuations in the illness from feeling well to feeling terrible are also enough to bewilder anyone, including sufferers.

 

[Dr.Patient]

@MeSci The extreme fluctuations in the illness from feeling well to feeling terrible are also enough to bewilder anyone, including sufferers.

Totally agree! This illness is hard to explain to normal people.

 

[worldbackwards]

This illness is hard to explain to normal people.

And yet people with MS, RA, etc, manage to do so just fine, because the names carry weight. Whilst ME is used as a byword in hypochondria, attention seeking, "it's just depression", etc.

It's quite amusing seeing people on the other thread arguing for the "privilege" of using the term ME - we won't be free of it's stigma until we understand the illness better and can name it accordingly.

I think MeSci's first point was far more on the mark.