Challenge the CDC Campaign

[Guest guest]

Reference:

*CDC/CFS Program Leadership Criticized

-Testimony to CFS Advisory Committee*

Help ME Circle, 24 November 2010

Co-Cure: http://bit.ly/htfhwT

~jan van roijen

``````

Challenge the

CDC Campaign

[Moderator's Note: This message is being

sent on behalf of a subscriber who wishes

to remain anonymous.]

As Jill McLaughlin posted earlier today,

many of us remain concerned about

leadership at the CDC. Our posts

apparently crossed in the (e)mail.

At the risk of seeming repetitive, the

Challenge the CDC Campaign wants to

make available a cut and paste message to

send for those who don't have the energy

to compose an email.

Our hope is that this repetition will

emphasize the importance of expressing

our opinions about this important position.

This is the original post from Challenge the

CDC Campaign

We have heard nothing from the CDC about

who will be appointed Chief, Chronic Viral

Diseases Branch. The person in that

position will be supervising the Chronic

Fatigue Syndrome Translational Research

Program at the CDC.

Many emails were sent three to four weeks

ago to Dr. Monroe expressing opposition to

the appointment of Dr. Unger,

who is the current Acting Chief.

Dr. Monroe is making the decision about

who will be appointed Chief.

We pointed out that Dr. Unger has not

communicated well with ME/CFS

researchers and clinicians outside of the

CDC.

At the Chronic Fatigue Syndrome Advisory

Committee (CFSAC, an advisory committee

to the Secretary, Health and Human

Services) she defended CDC research done

using the " empirical " definition of CFS

(Reeves, 2005).

This definition has been shown to be too

broad, including many people with other

diagnoses.

The CFSAC itself rejected the use of this

definition at its meeting in October, 2009.

Conclusions from research using this

definition in the past year include:

XMRV is not found in any " CFS " patients

and " CFS " patients have a high incidence

of personality disorders.

In addition, during her term as Acting

Chief, Dr. Unger has not improved the CDC

website, which continues to have

significant inaccuracies and omissions.

She has not shown any willingness to alter

the established policies that the CDC has

followed for years in regard to ME/CFS. If

she is appointed Chief, we can expect more

of the same.

The decision about who fills this position is

likely to occur soon, perhaps within the

next few days. It's time to restate our

opposition to Dr. Unger.

Please send a new email

to Dr. Monroe, Dr. Frieden,

Dr. Koh and Secretary

Sebelius.

A suggested text and all the contact

information is listed below. If you want to

reword it, add to it, send it to other

people, please do.

This is planned as a one-time email

(again), but if you want to send several

emails please do. If we hear nothing back

again, we may send another email (or two)

in December.

If possible, please also send a copy to:

challengeCDCcampaign@...

- so we have some idea how many emails

are sent.

It doesn't matter if you've already sent one

or if you haven't. We need to emphasize

how we feel about Dr. Unger and the past

actions of the CDC.

This is important.

Thanks for

helping all of us.

Suggested text:

Dear Dr. Monroe, Dr. Frieden, Dr. Koh and

Secretary Sebelius,

I am writing to express my opposition to

the appointment of Dr. Unger as

Chief, Viral Diseases Branch at the Centers

for Disease Control.

In this position, Dr. Unger will be

supervising the Chronic Fatigue Syndrome

Translational Research Program at the CDC.

Dr. Unger has served as Acting Chief, Viral

Diseases Branch for several months. During

that time she has shown no understanding

of the importance of improving the accuracy

of the CDC's CFS website, which is

referenced by physicians and patients all

over the world.

She has continued to allow research to be

published using a definition of Chronic

Fatigue Syndrome that was rejected by the

Department of Health and Human Services'

own Chronic Fatigue Syndrome Advisory

Committee (CFSAC) in October, 2009.

She has failed to communicate or

collaborate with CFS experts outside of the

CDC. She has not established *progressive

leadership at the CDC that can achieve

efficient, meaningful progress in CFS

research, clinical care, and education*,

another CFSAC recommendation from

October, 2009.

She has not shown that she is qualified to

be permanent Chief. I urge you to select

another candidate to fill this important

position.

Sincerely,

Name

Patient for years

City or Town,

State or Country

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Suggested recipient email addresses:

stephan.monroe@...

txf2@...

howard.koh@...

kathleen.sebelius@...

Please send a copy to:

challengecdccampaign@...

Here is additional contact information if

you want to call, fax or snail mail:

Stephan S. Monroe, Dir. DVRD

Room NCEZID CLFT

Atlanta, GA 30329-4018

tel:

fax:

email: stephan.monroe@...

Frieden, Director, CDC

CLFT Building

Room OCOO

Atlanta, Ga 30329-4018

tel:

fax.

email: txf2@...

Koh

Asst. Secretary for Health (ASH)

Room 7-716G

200 Independence Ave., SW HHH B

Washington, DC

tel:

email: howard.koh@...

Kathleen Sebelius

Secretary, HHS

Room 120F

Washington D.C.

200 Independence Ave. SW

tel: 1-

email: kathleen.sebelius@...