MESocofAmerica] New CDC prevalence numbers

[Guest guest]

New CDC prevalence numbers

 

by Mary Schweitzer

 

There are two ways to interpret the new CDC prevalence numbers.

 

We are looking at an official estimate that is SIX TO TEN TIMES the

result from the original Wichita survey. We are talking about doubling

the number of patients either every year or every other year. That's a

lot.

 

Either:

 

1. Their methology in Wichita was significantly flawed. Why then should we

trust the new Atlanta numbers?

 

2. We are in the midst of a frightening epidemic. Why wasn't this on the

evening news last night? Where is the Nightline story? CNN special report?

 

Personally, I suspect it is door number 1. The methodology was flawed then,

and the new methodology is flawed now.

 

This is what I have tried to warn about for the past year (again I refer

readers to my testimony to the CDC over the past year, which is available at:

 

http://www.cfids-me.org/cfscc/

 

Ultimately, if the methodology by which Dr. Reeves arrived at this

estimate is accepted, it means that " chronic fatigue syndrome " no

longer has ANY usable meaning whatsoever. Unfortunately, it will be

very difficult to get the public to understand that.

 

The key to understanding the deep flaws in this estimate is Reeves'

earlier conclusions that using the new CDC questionnaires, it was no

longer possible to distinguish between so-called " CFS " patients and

patients with " unexplained chronic fatigue " on the basis of cogntive

dysfunction or sleep disruption. That was the red flag that something

is seriously wrong with the new studies.

 

Folding all " medically unexplained fatiguing illnesses " into one big

confusing mishmash - especially for the sake of research - will have

disastrous results (as it has had in Britain).

 

Since my diagnosis in December 1994, I have had to spend far too much

time explaining to family, friends, employers, and doctors that

" chronic fatigue SYNDROME " is not just lots and lots of " chronic

FATIGUE. " In one fell swoop all that work is lost.

 

Those of who can use Myalgic Encephlamyelitis (because we fit the

description), must. Nor is it right, or wise, to change THAT name to

Myalgic Encephalopathy, because in the end that remains yet another

renaming process. For those who do not fit the definition(s) for M.E.,

we must fight hard to get appropriate diagoses (and perhaps names) for

their conditions. " CFS " is now totally meaningless.

 

Whether or not one can duck for cover under the M.E. label, I fear all

of us are going to feel the impact of CDC's latest folly. Do not

rejoice at this new estimate. Sometimes bigger is NOT better.

 

Mary Schweitzer