[CO-CURE] More medical 'firsts' from the CDC

[Guest guest]

This is the first in a series of two; the next post on this subject

is (in my opinion) wonderful and a very good idea. But this one is necessary

for background as to what the next one is about. I hope I am making sense here.

blessings

Shan

*Permission to repost*

The CDC states in this press relase:

'First of all, this is very exciting research in the field of chronic

fatigue syndrome. It really is the first credible evidence of a biological

basis for chronic fatigue syndrome'

The first evidence??

Well, yes it is, but only if you ignore the more than a THOUSAND studies

which have already done so - which of course they do.

Despite all this talk of a biological basis for 'CFS' the CDC are also still

recommending almost no other treatments for the illness other than

psychiatric based treatments such as cognitive behavioural therapy and

graded exercise therapy. They also continue to define 'CFS' purely in terms

of the presence or absence of fatigue. When the CDC say CFS they are not

talking about ME, or even Fukada CFS but merely fatigue sufferers, and so

anything they come up with is IRRELEVANT to MEers anyway. This is so clear

if you just read anything they've put out lately (or ever.)

Talk of biological findings is meaningless anyway if made by vested interest

groups like this. Depression has biological findings too!

Some MEers however have bizarrely responded to this damaging nonsense as if

it were a great step forward for our cause...

How is is that so many MEers still dont get that the CDC are NOT in any way

interested in helping ME patinets or in furthering any type of legitimate

research and indeed that what they do best is ignore or bury legitimate

research or anything that might actually help us... Their goals are the

direct opposite of ours - by supporting the CDC you're actually working

directly againt the best interests of ME sufferers; that is just a fact.

As Hillary , author of Osler's Web, (an activist many of us admire

and who I hope wont mind if I quote her), wrote about Straus from the CDC a

while back:

'Now, why is M.E.  considered so widely to be " poorly understood " and

" controversial " ? Because Straus has engineered this very propaganda. Because

he says so, again and again, ad nauseum.  Any study that advances

understanding of the disease, like the comprehensive 1992 ls study I

mentioned a while back, Straus has either blithely ignored or publicly

undercut, along with the CDC. It is he who turned a simple infectious

disease into a " controversial " one by suggesting it is not a bona fide

disease at all, but a state of, yes, FATIGUE powered by maladaptive

thoughts.'

and:

'Reeves should have been sent to jail in the mid-1990s.  The CDC shouldn't

even be involved in ME; after the profoundly botched (nefarious?) Tahoe

" investigation " of 1986-87, the Secretary of Health should have banned the

agency from further activity in the field and fired the scientists involved.

(In a rational world.)  I'm tired of saying this.  I really am.  PWMEs who

think it's reasonable, at this late date, to try to neotiate for help with

this agency or any other agency or person employed in the DHHS are complicit

in their own demise and threaten every other PWME, as well, by propping up

the status quo.'

The CDC are who we need to be fighting AGAINST, not for. Read Osler's Web!

Read anything the CDC have said about ME over the last 20 years...  it's all

there...

The CDC are the reason why we need any activism in the first place... for

MEers to actually be supporting them in this... it is just pure madness.

Jodi

------

http://www.cdc.gov/od/oc/media/transcripts/t060420.htm

Press Briefing on Chronic Fatigue Syndrome

Date Thursday, April 20, 2006

MR. SKINNER: Thank you for joining us today for this conference call where

we're going to be updating you all on some important research that we're

publishing in a journal on chronic fatigue syndrome.

With us today is the director of the CDC, Dr. Gerberding, and two of

our principle chronic fatigue syndrome researchers here at CDC, Dr.

Reeves and Dr. Suzanne Vernon.

To start the call, I'd like for the director of the CDC, Dr.

Gerberding, to talk a little bit about CDC's work around genomics, why it's

important, and what we're doing here at CDC with genomics.

You'll find later, in talking with Dr. Reeves and Dr. Vernon, that genomics

played a pretty important role in this particular study that they're going

to be talking about, and this is just one of a number of examples of

important research going on at CDC around genomics and the role that it has

in health.

And so Dr. Gerberding is going to spend a few moments, right now, just

speaking about the big picture here, when it comes to CDC's work and

genomics, and how important it is.

So Dr. Gerberding, I'll turn it over to you.

DR. GERBERDING: Thank you. Can you hear me okay?  Tom?

MR. SKINNER: Yes.

DR. GERBERDING: Thank you. I'm delighted to have a chance to introduce to

you Dr. Reeves and Dr. Vernon, who will be presenting the details of their

work that's just been published.

But I wanted to frame this in three ways. First of all, this is very

exciting research in the field of chronic fatigue syndrome. It really is the

first credible evidence of a biological basis for chronic fatigue syndrome,

that's come out in 14 articles, simultaneously, in the journal

Pharmacogenomics. And I think it really reflects a remarkable confluence of

a number of scientific advances really coming to bear on a problem of great

importance to many people around the United States and one that's had

controversies in the past.

[continues...]

[Guest guest]

I love this because this person has used imagination and the elements

of surprise and good old-fashioned 'moxy' to achieve what could not be done

by following the rules. Whose rules? The rules the CDS expects us to use. This

is something that many of us could do though. I wonder who else has 'moxy'

and imagination?

blessings

Shan

[Moderator's Note: Co-Cure is not a discussion list.

We are permitting this message as an exception.  It

will be the last message we will publish regarding

the issue of " More medical 'firsts' from the CDC. " ]

Regarding Jodi and others' comments on the great points we know re: the

shameful history of CDC as revealed in Osler's Web, biological base for

depression, etc.

As it relates to my letter to the NYTimes; please understand the

strategy.  Using the CDC at their own game, not applauding them.  This is a

disability rights issue, the CDC has some credibility (however wrongly)

with the mainstream media, and a miniscule couple of valid points we can

use to make the patients' point and do damage control in the national press.

Make no mistake - the NY Times article is a major hit without damage

control.  None of our other tactics have succeeded in winning in that arena

yet, so perhaps it is time to try something different.  Silence doesn't

work.  Screaming doesn't work, although I did feel like doing so when I

called the NY Times number to complain about their discriminatory

article.  Anyone who has been through the suffering we have would.

An approach we tried regionally several years back did work, based on this

same premise.

BACKGROUND: 

Seven years ago when I was given the position in an area

support group of Publicity Chair, we had received no positive media

coverage of CFIDS (then called CFS) due to patient abuse by this government

organization, and Mr. Straus.  The approach which gained us multiple

positive articles in large area newspapers, multiple positive television

time and talk show coverage, in addition to planting seeds for subsequent

positive articles in Reader's Digest, a CBN spot and others was as follows:

To compile a press packet with a list of true experts willing to speak to

the media including Dr. Cheney, local clinicians, patients with lived

experiences; and to provide a " Debunking the CFS Myths " Fact Sheet using

the CDC's own revised statistics, their placement of CFIDS on the #1

Emerging and Infectious Disease List to make the case that we had a valid

illness, then describe the sequelae of what patients suffer - things that

the CDC hadn't gotten anywhere near, ie. the neurological, immunological,

multi-system suffering in the framework of " debunking myths. "   It was

compelling enough, with much prayer, to give us totally positive

coverage.  We used the CDC and their credibility for the one or two

grudging points they had given us, then built on that platform the multiple

additional true facts that let people see our patient population.  It

affected quality of life for patients, gave us additional health professionals

to

help treat patients' compassionately, empowered and validated patients - WHY? 

Because the CDC is good?  No - we all know that they have not been the heroes

or authors of " medical firsts " - to the contrary - patients and their advocates

have done more of that while the CDC has perpetuated the suffering.  No,

because we USED THEM and DEFINED the debate ourselves - free of charge in the

media.  So who is using who?  And who is breaking out of the cage they have had

us

in?

We began calling CFS, CFIDS without their permission and using it in our

articles and explaining it - because it was truth.  And we began calling it

ME the same way.  No asking permission, but using them a little and running

with the truth on top of it. Let them follow us, for we will lead the way,

because we have truth on our side.  There is nothing bizarre about it.  Take the

couple of crumbs of truth they have let fall and use it to our advantage. 

Patients are still the bottom line, and I for one won't wait another day to let

my

voice be heard in opposition to this continued oppression.

Let each of us do what we can in our own way without crucifying and

criticizing one another to death.  Non-PWCs do that enough already.  It is

time to stop reacting to one another and just do it.  I would suggest

writing your own articles to the Times with additional facts to spin the

" disaster " into something positive - you don't have to go to Washington to do

this.

Margaret Holt Baird (PWC since 1990, losses: spouse, job, home, savings,

enough)