Re: the 1994 CFS definition & recommendations

[Guest guest]

I guess I'm going to ask a stupid question, please forgive me,

BUT............how is it they guesstimate 4 million people have CFS? I mean,

you read over and over that 1 million Americans have it, yet that is only the

portion who have been diagnosed???? If you haven't been diagnosed, why do they

say up to 4 million have it? Where does that figure come from?

Maybe it's just my brain fog - lol!

STL Jane

Jan van Roijen wrote:

ESI Special Topics, November 2006

Citing URL:

http://www.esi-topics.com/fmf/2006/november06-CReeves.html

From •>>November 2006

C. Reeves answers a few questions about this month's

fast moving front in the field of Pharmacology & Toxicology.

Field: Pharmacology & Toxicology

Article:

Identification of ambiguities in the 1994 chronic fatigue

syndrome research case definition and recommendations for

resolution

[Guest guest]

" CFS is defined by symptoms and disability, has no diagnostic physical signs

or laboratory abnormalities, and its causes and pathology remain unknown "

Reeves, from the article cited below

Liar liar pants on fire ! (OK feeling a tetch childlike today LOL) WHAT a

pile of crap. And this is the great leader in the CDC who is going to manage

care for all you poor Americans and influence the international

understanding of this disease?!? Faugh.

My answer to you Jane, is that the definition that he describes, is of a

disease that doesn't exist. Don't everyone get all riled up here! I just

know that there is ME, and then disorders that have fatigue as a component.

IMHO and that of many REAL experts. NO offense to all those out there with

the Dx " CFS " . It's the CDC's fault, not yours.

Therefore, a comforting as those high estimates appear (maybe now there will

be funding etc) they are based on false premises, so your estimate, or mine,

would be as good as his. And if there are really 4 million people in the US

with ME, they should be scared.very, very scared. When we all start dropping

like flies from tertiary ME, they will have a lot of explaining to do.

Aylwin xox

[Guest guest]

I believe it is done as per person , per capita as used in statistics to get

an estimate.

The CDC and Dr. Reeves in my personal pet peeve and has been for over 24

years and he should be removed and the CDC over hauled

If I am not mistake the survey was done by phone.

Hello, does anyone in your home suffer from fatigue , why yes my whole

family and how about sore throat and painful gland, why yes how did you know?

Sheer bunk,

At least folks know where I stand.

[Guest guest]

Many clear thinking brains, in addition to impaired PWCs brains ask how did this

number go suddenly from 1 million to 4 million?

{Of course, I recall, early 90s, when it escalated by about 50 times, when the

CDC finally acknowledged the true prevalence which they had been denying}

But, this is different. Upon closer scrutiny, the study which apparently swelled

the millions was based on the Wichita study, done on a group of people who were

selected by phone interviews, using a questionaire by Reeves, with input from

Psych. (ME is hysteria) Simon Wessely...which asked, not even if they were a

certain level of " fatigued " ...but experiencing feelings of " unwellness " .

None had a diagnosis of CFS, or knew they were ill " with anything " . One group

were menopausal women.

So, when you read about the CDC's groundbreaking discoveries, the genes, stress,

allostatic load theories-as-cause, the 4 million cases, the new, improved CDC

definition, and Reeves paper, now the model for all researchers to use...

think of this group of " unwell " people, who didn't know they had " anything " .

Katrina

... ESI

Special Topics, November 2006

> Citing URL:

> http://www.esi-topics.com/fmf/2006/november06-CReeves.html

>

> From •>>November 2006

>

> C. Reeves answers a few questions about this month's

> fast moving front in the field of Pharmacology & Toxicology.

>

> Field: Pharmacology & Toxicology

>

> Article:

>

> Identification of ambiguities in the 1994 chronic fatigue

> syndrome research case definition and recommendations for

> resolution

>

[Guest guest]

Thanks Katrina,

I do remember (now that you mention it! LOL) the whole Wichita

study...........Gee,and so ACCURATE too!

Thank you for refreshing my memory!

STL Jane

kattemayo wrote:

Many clear thinking brains, in addition to impaired PWCs brains ask how did

this number go suddenly from 1 million to 4 million?

{Of course, I recall, early 90s, when it escalated by about 50 times, when the

CDC finally acknowledged the true prevalence which they had been denying}

But, this is different. Upon closer scrutiny, the study which apparently

swelled the millions was based on the Wichita study, done on a group of people

who were selected by phone interviews, using a questionaire by Reeves, with

input from Psych.

[Guest guest]

LMAO!!! Yeah.............no shit! TOO MUCH !

It's all coming back to me now!

STL Jane

[Guest guest]

In the begining of the " numbers " game, it was figured to be over 4

million (how they came about that figure I do not know) but then when

CDS finally relented in stating that the disease exists, they said

only 1 million. I considered that while many of use were sick and

screaming about this illness, CDS said it did not exist so I figgered

it as an attempt not to look too stupid to say 1 million instead of

the fact that over 4 million where effected. BTW, nobody asked me

about my illness so I'm sure I am one of many that have not been

counted. It would be nice to see some factual counts done on this

subject. Internet is a very good tool for this if they really wanted

to know. I was curious just how many have written in to even this

site that are ill....but no response was given.

>

>

> Many clear thinking brains, in addition to impaired PWCs brains ask

how did this number go suddenly from 1 million to 4 million?

>

> {Of course, I recall, early 90s, when it escalated by about 50

times, when the CDC finally acknowledged the true prevalence which

they had been denying}

[Guest guest]

I scan through reams and reams of CDC and psych study shenagans, our own

websites and lists, plus latest legitimate ME/CFS research and treatments, my

own protocols and Life...AND the increasingly mixed populations we're

intertwined with, AND various opinions on ME, CFS, so begin to mix some details

up at times. Tho, really try not to.

I do want to correct something I said here. I think it's the more recent

Georgia study that used the word " unwell " in their phone survey.

And that the Wichita study used the word " fatigue " . It's all pretty much the

same thing as can be discerned in much of the psych leaning " CFS " reports. What

began as a complicated and devastating neurological disease with post exertion

collapse, bone crushing exhaustion, muscle weakness, bordering on paralysis and

near faint....has gradually morphed...through the clever (diabolical) use of

language and wider selection of persons for study. First it was focus on severe

fatigue, (the NIH spent years studying post EBV, then depression and

malingering) then we had generally " fatiguing illnesses " , tired people, people

who feel " unwell " . How pitiful, vague and all encompassing can it become?

By the way, the latest prevalence survey was only on a certain age group. so,

translating that into all age groups would actually swell the numbers to over

SEVEN Million.

Psychiatrist White wrote an article something like " How prevalant is CFS?

How long is a piece of string? "

As Patient Herd wrote, rather than improve the CDC CFS definition which was

comparing apples and oranges before to now comparing apples with apples (this is

the CDC's proud contention)...more accurately, they now are including " the

entire food group " .

I will post what Pat Fero of Wisconsin has to say about the new prevalance

figures.

TC,

Katrina

>

>

> Many clear thinking brains, in addition to impaired PWCs brains ask how did

this number go suddenly from 1 million to 4 million?

>

> {Of course, I recall, early 90s, when it escalated by about 50 times, when the

CDC finally acknowledged the true prevalence which they had been denying}