Re: CDC to Study Chronic Disease Syndrome

[Guest guest]

In the interests of accuracy, the CDC announcement for the Georgia

study needs to be amended:

" The CDC first started ignoring chronic disease syndrome two decades

ago after denying the existence of an outbreak of an unknown illness

characterized by debilitating fatigue among residents of Incline

Village, Nev. The agency has conducted a series of studies on CFS

since 1988 attempting unsuccessfully to prove psychological concepts

of etiology.. The cause of CFS remains unknown, the CDC said,

although we intend to ignore the postviral infections and concurrent

symptoms of Myalgic Encephalomyelitis which made the Incline Village

outbreak synonymous with Ramsay defined ME. "

-

Incline Village CFS survivor

----

> Margaret

> 25th April 2005

>

> It is noted that the Centres for Disease Control (CDC) Media

> Relations Office appears to have provided official confirmation

> that " CFS " (chronic fatigue syndrome) is not the same disorder as

> myalgic encephalomyelitis (ME) / ICD-classified chronic fatigue

> syndrome (CFS) --- " CFS " here being synonymous with " ME " as

> classified in the International Classification of Diseases at ICD-

10

> G93.3. This clarification has been reported via the US Newswire

(see

> Co-Cure, 26th April 2005).

>

> This confirmation would seem to be an important breakthrough in

the

> confusion that surrounds the heterogeneous label " CFS " .

>

> The CDC release states unequivocally: " First identified in the

> 1980s, CFS is characterized by a severe and debilitating fatigue

> that does not improve with rest. "

>

> If the disorder " CFS " was " first identified in the 1980s " (as

> opposed to being a new name given by Holmes et al of the CDC to

the

> existing disorder myalgic encephalomyelitis), then " CFS " cannot

> possibly be the same disorder as Ramsay-described ME, since the

> latter has been documented in the medical literature since at

least

> 1938 and was identified 50 years before " CFS " and was recognised

by

> The Royal Society of Medicine in 1978.

>

> This means that, as has been pointed out many times in the last

> fifteen years, the term " CFS " means different things to different

> people, and that the term " CFS/ME " that was constructed by the

> psychiatric lobby does not equate with " ME " , despite the two

> terms " ME " and " CFS " being synonymous in the ICD-10 that was

> published in 1992.

>

> Is this confirmation by the CDC that " CFS " was first identified

only

> in the 1980s a careless mistake, or is it the first step in

> overcoming the constructed confusion perpetrated by the

psychiatric

> lobby that is intent on claiming all " fatigue states " as

behavioural

> and on classifying " CFS " (into which it has assiduously subsumed

ME)

> as a somatisation disorder in the next revision of the ICD?

>

> If it is not a mistake by the CDC, then it means that the MRC PACE

> and FINE trials and the new UK Government-funded Centres cannot

> possibly be looking at Ramsay-described, ICD-classified ME (which

in

> any event is automatically excluded by virtue of using the Oxford

> case definition as the entry criteria, despite denial by the MRC),

> therefore when they appear, the results of the PACE and FINE

trials

> cannot credibly be taken to apply to those with ME even though the

> trial purports to be studying what it calls " CFS/ME " .

>

> Once the outcome of the UK General Election is determined, Members

> of Parliament are invited to take note and act accordingly in the

> best interests of their constituents with ME.

>

> - ends -

>

> ----------------------------------------------------------------

> This information is available on THE ONE CLICK GROUP website

> http://www.theoneclickgroup.co.uk

> ----------------------------------------------------------------

[Guest guest]

I thought you would be able to comment here, !

This is the number that our community has been searching for. 800,000

and growing is a force to be considered, and reckoned with. I would

like to know how this was determined.

In my opinion, this represents the CDC sticking a PR toe in the water

to introduce their acknowledgment of biotoxin associated disease. The

reference to minorities and low-income populations will legitimize the

social implications here.

This is a major development in our issue.

Lee

> In the interests of accuracy, the CDC announcement for the Georgia

> study needs to be amended:

>

> " The CDC first started ignoring chronic disease syndrome two decades

> ago after denying the existence of an outbreak of an unknown illness

> characterized by debilitating fatigue among residents of Incline

> Village, Nev. The agency has conducted a series of studies on CFS

> since 1988 attempting unsuccessfully to prove psychological concepts

> of etiology.. The cause of CFS remains unknown, the CDC said,

> although we intend to ignore the postviral infections and concurrent

> symptoms of Myalgic Encephalomyelitis which made the Incline Village

> outbreak synonymous with Ramsay defined ME. "

>

> -

> Incline Village CFS survivor

>

> ----

>

> > Margaret

> > 25th April 2005

> >

> > It is noted that the Centres for Disease Control (CDC) Media

> > Relations Office appears to have provided official confirmation

> > that " CFS " (chronic fatigue syndrome) is not the same disorder as

> > myalgic encephalomyelitis (ME) / ICD-classified chronic fatigue

> > syndrome (CFS) --- " CFS " here being synonymous with " ME " as

> > classified in the International Classification of Diseases at ICD-

> 10

> > G93.3. This clarification has been reported via the US Newswire

> (see

> > Co-Cure, 26th April 2005).

> >

> > This confirmation would seem to be an important breakthrough in

> the

> > confusion that surrounds the heterogeneous label " CFS " .

> >

> > The CDC release states unequivocally: " First identified in the

> > 1980s, CFS is characterized by a severe and debilitating fatigue

> > that does not improve with rest. "

> >

> > If the disorder " CFS " was " first identified in the 1980s " (as

> > opposed to being a new name given by Holmes et al of the CDC to

> the

> > existing disorder myalgic encephalomyelitis), then " CFS " cannot

> > possibly be the same disorder as Ramsay-described ME, since the

> > latter has been documented in the medical literature since at

> least

> > 1938 and was identified 50 years before " CFS " and was recognised

> by

> > The Royal Society of Medicine in 1978.

> >

> > This means that, as has been pointed out many times in the last

> > fifteen years, the term " CFS " means different things to different

> > people, and that the term " CFS/ME " that was constructed by the

> > psychiatric lobby does not equate with " ME " , despite the two

> > terms " ME " and " CFS " being synonymous in the ICD-10 that was

> > published in 1992.

> >

> > Is this confirmation by the CDC that " CFS " was first identified

> only

> > in the 1980s a careless mistake, or is it the first step in

> > overcoming the constructed confusion perpetrated by the

> psychiatric

> > lobby that is intent on claiming all " fatigue states " as

> behavioural

> > and on classifying " CFS " (into which it has assiduously subsumed

> ME)

> > as a somatisation disorder in the next revision of the ICD?

> >

> > If it is not a mistake by the CDC, then it means that the MRC PACE

> > and FINE trials and the new UK Government-funded Centres cannot

> > possibly be looking at Ramsay-described, ICD-classified ME (which

> in

> > any event is automatically excluded by virtue of using the Oxford

> > case definition as the entry criteria, despite denial by the MRC),

> > therefore when they appear, the results of the PACE and FINE

> trials

> > cannot credibly be taken to apply to those with ME even though the

> > trial purports to be studying what it calls " CFS/ME " .

> >

> > Once the outcome of the UK General Election is determined, Members

> > of Parliament are invited to take note and act accordingly in the

> > best interests of their constituents with ME.

> >

> > - ends -

> >

> > ----------------------------------------------------------------

> > This information is available on THE ONE CLICK GROUP website

> > http://www.theoneclickgroup.co.uk

> > ----------------------------------------------------------------

[Guest guest]

" moldincolo " wrote:

> This is the number that our community has been searching for.

800,000 and growing is a force to be considered, and reckoned with.

I would like to know how this was determined.

>

Hi .

It was done as a telephone survey in 1998.

http://www.geocities.com/cfsdays/cfs_com.htm

By the CDC, which is the very organization that has the most limited

understanding of the illness.

They brilliantly excluded anyone who was ever diagnosed

with " melancholic depression " from this survey.

The effects of that type of exclusion are self evident to anyone

EXCEPT the CDC.

Furthermore, CFS was thought to have been a peculiarity among only a

few dozen individuals in 1985.

The numbers have increased just a bit since then.

Any phenomeon whose prevalence shows the slightest indication of

increasing in such a manner is spreading at such a rate that ANY

prevalence data - no matter what the criteria or how it was

established - is unlikely to have remained exactly the same for

seven years.

And yet the CDC treats this number as though it were somehow based

upon reality and uses it regularly.

This alone should give you an insight into CDC methods and

perspectives on CFS.

-

[Guest guest]

CDC and NIH Discrepancies Continue.

- Schweitzer

http://www.cfids-me.org/marys/cdcprobs.html

[Guest guest]

My shortest, most polite response:

Oh brother. And what will they use? Fukuda? [hack, hack]

In all probability (statistician joke, there) they will just tack the questions

on to the Georgia part of the annual Behavioral Risk Factor Survey survey done

by the National Center for Chronic Disease. These are the same people who sold

her the fat numbers she had to retract. Twice.

When it comes to CFS, they couldn't find their own backsides with both hands in

a light windstorm. They aren't including my county. (I'm pretty sure they DON'T

want to hear from me about it! 8 P) They are STILL tryng to pay back the 12

million former Director Jeff Koplan ripped off from the program in the 90's.

This will cost a bundle. And trust me - the entire result will be majorly

skewed, because they will formulate the questions to suit their own desired

result. We should send a request for the questions they will be asking. I can

almost predict it all from here. They use a yes/no/multiple choice format, so

responses are limited to whatever they have already decided the answers can be.

And when they get done, they will correlate results to previous Fat Butt

results, and most likely conclude we have this because we eat wrong and don't

get enough exercise - because GA is touted by CDC as the fattest, laziest state

in the Union. Expect questions about the flu thing to continue. This is still

NCID's money. If it ain't infectious, they don't want to know. And the stuff

about poor people and minorities? Wellll, we already know the answers to that

one - public schools, older homes and apartments, more manual labor indoors and

out. Everything it takes to bump the toxin exposures per capita up. That'll

pretty much do it.

In about a year and a half from now, Dr. Gerberding'll go out there and tell us

all it's an epidemic, but they still don't know what causes it. Another round of

congressional funding will ensue, she will go to D.C. with new " data " and hat in

hand. The numbers will be large, so they will cough it up.

Your tax dollars at work again. Consider this - CDC does NOT get money for

knowing what causes CFS. They get money for NOT knowing, but promising to " work

on it " .

[EOR]

Serena

www.freeboards.net/index.php?mforum=sickgovernmentb

__________________________________________________

[Guest guest]

Hey, no disagreement that the CDC is not competent to address this.

Their sponsorship of the IoM study last year showed their underlying

(emphasis on " lying " ) agenda in terms of public messaging on this subject.

My point was more that this represents a tool that we can use to put

our issue in context. A major problem with the whole premise is that,

due to the efforts of " expert " defense witnesses and other propaganda,

the question of whether all these disorders even EXIST is the question

that is being addressed in the court of public opinion.

That the CDC made a press statement to this effect (as opposed to an

obscure, unpublicized phone study from some time ago), and assigned it

a named condition (that I had never heard before), is major leverage.

This needs to be front and center in our PR efforts.

Good job on tracking this, this shows the value of this forum -- the

overall advocacy and technical talent base in this group is one of the

major tools this movement has.

Lee

--- In , SERENA EDWARDS <pushcrash@y...>

wrote:

> My shortest, most polite response:

>

> Oh brother. And what will they use? Fukuda? [hack, hack]

>

> In all probability (statistician joke, there) they will just tack

the questions on to the Georgia part of the annual Behavioral Risk

Factor Survey survey done by the National Center for Chronic Disease.

These are the same people who sold her the fat numbers she had to

retract. Twice.

>

> When it comes to CFS, they couldn't find their own backsides with

both hands in a light windstorm. They aren't including my county. (I'm

pretty sure they DON'T want to hear from me about it! 8 P) They are

STILL tryng to pay back the 12 million former Director Jeff Koplan

ripped off from the program in the 90's. This will cost a bundle. And

trust me - the entire result will be majorly skewed, because they will

formulate the questions to suit their own desired result. We should

send a request for the questions they will be asking. I can almost

predict it all from here. They use a yes/no/multiple choice format, so

responses are limited to whatever they have already decided the

answers can be.

>

> And when they get done, they will correlate results to previous Fat

Butt results, and most likely conclude we have this because we eat

wrong and don't get enough exercise - because GA is touted by CDC as

the fattest, laziest state in the Union. Expect questions about the

flu thing to continue. This is still NCID's money. If it ain't

infectious, they don't want to know. And the stuff about poor people

and minorities? Wellll, we already know the answers to that one -

public schools, older homes and apartments, more manual labor indoors

and out. Everything it takes to bump the toxin exposures per capita

up. That'll pretty much do it.

>

> In about a year and a half from now, Dr. Gerberding'll go out there

and tell us all it's an epidemic, but they still don't know what

causes it. Another round of congressional funding will ensue, she will

go to D.C. with new " data " and hat in hand. The numbers will be large,

so they will cough it up.

>

> Your tax dollars at work again. Consider this - CDC does NOT get

money for knowing what causes CFS. They get money for NOT knowing, but

promising to " work on it " .

>

> [EOR]

>

>

>

>

> Serena

> www.freeboards.net/index.php?mforum=sickgovernmentb

>

> __________________________________________________

>

[Guest guest]

Ever since the moment that " CFS " was coined, activists have decried

the trivializing term and asked for recognition of Myalgic

Encephalomyelitis.

Now we see the results of all these pleas for a more respectable name:

CDS - Chronic Disease Syndrome.

Is that the their best shot?

I'll give them a better one:

Perpetual Illness Susceptibility Syndrome.

PISS

Because that is exactly what they are doing on sufferers!

Message to the CDC.

As president Bush might say,

" Bring it on " .

-

[Guest guest]

I just call it what it is - Mycotoxicosis. Unless I'm dealing with the

insurance people. For now, anyway.

The " Syndrome " thing may turn out a bit better than has been thought, thanks

(surpisingly) to the sloppy lumping together and constant misdiagnosis of

thousands of patients, and Shoemaker and Hudnall's work. The Gulf War Illness,

MCS, FM, and Lyme people are already with us. I'll lay odds right now we end up

including the MS community as well before this is all over. That's important for

us, politically. They have money, they have clout, credibility on the street,

the celebrity spokespeople, and everything else the rest of us have been

lacking. I don't wish them their illness, but I sure wish us all the answers and

treatment opportunities this could finally bring! I mean, I'm still mad as hell

about us all being sick, but at the same time, I know in my gut we're finally

watching the solutions unfold very slowly, right before our eyes. That part is

actually kinda cool.

Funny - the Syndrome thing is so lame, you 'd almost think somebody with a

horrible case of brain fog came up with that one. But I like yours! <G>

Serena

www.freeboards.net/index.php?mforum=sickgovernmentb

__________________________________________________

[Guest guest]

I'm going to propose an internal term for agency use -- CYA.

Chronic Yo-yo Assesments?

Craven Yesman Advancement?

> Ever since the moment that " CFS " was coined, activists have decried

> the trivializing term and asked for recognition of Myalgic

> Encephalomyelitis.

> Now we see the results of all these pleas for a more respectable name:

> CDS - Chronic Disease Syndrome.

>

> Is that the their best shot?

> I'll give them a better one:

> Perpetual Illness Susceptibility Syndrome.

> PISS

> Because that is exactly what they are doing on sufferers!

>

> Message to the CDC.

> As president Bush might say,

> " Bring it on " .

> -

[Guest guest]

" moldincolo " wrote:

> I'm going to propose an internal term for agency use -- CYA.<

" CYA " is military parlance for a posterior defensive strategy:

" Cover Your Ass " .

-

[Guest guest]

> > I'm going to propose an internal term for agency use -- CYA.<

>

>

> " CYA " is military parlance for a posterior defensive strategy:

>

> " Cover Your Ass " .

>

> -

This has trickled down to popular office parlance, a lot of company

politics I've been involved with in the past have made those

environments war zones as well.

In my estimation, the overall political dynamics of this issue are

FUBAR.

[Guest guest]

> In my estimation, the overall political dynamics of this issue are

> FUBAR.

>

Affirmative.

Over and out.

-