CFIDS Assoc. of Am.-LONG

[Guest guest]

Have others noticed a serious change in the direction the CFIDS Assoc. seems

to be headed? It seems to me that for at least the past year, maybe a bit

longer, the Assoc. has become hung up on the word " fatigue " . This is such a

serious problem that I did not renew my subscription to the Chronicle. And my

supportive family has followed suit.

During a meeting in DC last spring which focused on a name change, Kim Kenny of

the Assoc. agreed with the CFSCC that before a name change could even be

addressed research must be done into " the DEGREE of fatigue with CFIDS " . I was

appalled. How do you measure something so subjective? Its like asking " How high

is up? " Worse yet, what disease ever required a measurement of the degree of

fatigue? Are there any fatigue causing diseases that do this? Heart disease,

AIDS whatever. I've never heard of much-needed research to measure the degree of

fatigue!

This is exactly the mind set that the CFIDS Assoc. has been fighting for over a

decade. Now these people are speaking FOR us in government meetings and getting

drawn into the same trap...its about the stupid name. I am NOT fatigued, I am

NOT tired or weary or pooped! Crushing exhaustion barely suggests what I feel.

We are SICK. This is what sick feels like, not what fatigued feels like.

Sadly, the Assoc. has done it again. I received a new publication which gives

small bios of 10 PWCs. Again there is an emphasis on the word fatigue. Esp the

info on the back of the publication. And the bios themselves are less than

honest as though the Assoc is afraid of offending a reader. There is no mention

of any of the severe symptoms: no falling down, throwing up, wasting away,

seizures, encephalitis, arrhythmias, heart attacks, liver damage, spleen damage,

no mention of serious infections such as invasive dental abbsesses, ear

infections that rupture eardrums, eye infections that damage eye sight or any of

the other horrible things that happen to our bodies. I know there are alot more.

These are just the ones I or someone I know has experienced.

This new publication makes CFIDS sound like a sad " gentlemen's illness " like

some tragic case of horrible tiredness and confusion. I can see that they tried,

they do mention the mental fog and memory problems. But as I say, it is mostly

about being tired.

Has anyone else noticed this problem with the Assoc? Sorry for the length here.

I hoped to communicate what I perceive as a real problem. I have of course

emailed the Assoc. but received no reply. My money, what there is of it, goes

elsewhere now but they are still out there presenting themselves to the

government as our representative. I'd appreciate opinions. Thanks!

Judy R.