Anything but "Malaise"!
Hey everybody!
There have been so many good suggestions here. I strongly urge you to just start using whatever term you like instead of 'malaise'! Disease exacerbation, morbidity, meltdown or whatever you like. CDC does not own the language and can not force you to use an inappropriate and medically incorrect term like 'malaise'.
Each time you refuse to use the term "malaise" and use another term this brings closer the day when the terminology will change and we will get treated like human beings.
If we refuse to use 'malaise' then slowly other patients won't use it. Then a few 'radical' doctors won't use it, then more and more and CDC and Wessely will be the only ones using it and this will show how obstructionist and anti-science they are. This will take a long time, but it will never happen if we don't start. So let's start now.
Terms or 'memes' spread like viruses. The more a term is used, the more it spreads and spreads and becomes entrenched. The only way to stop it is for us to stop using the term and substitute another that will catch on.
I like 'Morbidity' because it fits into PEM, sounds medical and thus it will cause the transition to be made much quicker, imo. It will be much easier to convince influential doctors to change to Morbidity than to another term and influential doctors adopting the terminology is the only way to get it into medically accepted use.
The fact that it sounds medical and doesn't have psychological connotations will also help to influence people to rightly think of our disease as medical instead of psychiatric.
Similarly, Jason has shown that the inappropriate term 'chronic fatigue syndrome' causes significant social and medical harm to patients. Please use a different term- whichever one you like! (As you may know I like ME/CFIDS). If noone but CDC and Wessely are using "CFS" they will have to stop calling it "CFS" or be exposed as fools.
If you do ever use the terms "CFS" or "malaise", please bracket them in quotes. This takes little effort and will go a long way toward establishing these terms as suspect and inappropriate. Imagine what the effect of the tiny step of just adding quotes to these terms would have if most patients did it. The term "CFS" would acquire an aura of being bogus.
Little actions of standing up for ourselves can have outsized effects. AIDS patients kept standing up for themselves and now they have $3B a year from NIH (of course the fact that AIDS was obviously fatal made this 'easier' for them to achieve) and their disease is largely manageable.
Rosa Parks did a little thing of refusing to go to the back of the bus. If she had a friend there, her friend probably said "what are you doing? it's easier just to go to the back of the bus, they might attack us and anyway refusing to go to the back of the bus is never in a million years going to do anything for blacks; we'll always be discriminated against. It's not worth trying." But Rosa Parks knew that putting her foot down and saying "No, I will not be treated like a second-class citizen!" would help everyone- black, white, our whole nation.
