CDC Chief Unger Pledges to 'Restore Trust'

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- Agrees to Meet with ME/CFS Reps by Cort on Phoenix Rising

by Cort Published on February 17th, 2011 09:19 AM

Attachment 5044In an abrupt break with past history, the new Chief of the CDC's

CFS research program, Dr. Unger agreed to meet with ME/CFS reps to discuss

concerns about the CDC's CFS program. Her predecessor Dr. Reeves had refused

several efforts by patient reps to meet. The meeting was prompted by a

collective effort by 11 patient advocacy organizations - lead by PANDORA - to

marshall their forces to produce change at the CDC.

The meeting, therefore, is notable for two reasons;

a) this is the first time in memory that a large group of patient advocacy

organizations have worked together to maximize their voice and it worked; Dr.

Unger surely would not have responded to one or two organizations individual

requests. This suggests this type of activity is effective and should continue.

early in her term Dr. Unger responded to the patient community in a way that

no CDC chief has in memory.

Dr. Unger will be putting her stamp on a CDC program that has in the past

eschewed collaboration with the patients and many researchers and is regarded

poorly by both. Whether this step presages significant changes in the

organization remains to be seen. The opportunity for dialogue suggests, however,

that at the very least, a more open environment is present at the CDC - a

welcome change.

According to the announcement:

" Dr. Unger with the CDC [has] contacted PANDORA asking for a meeting

to discuss how to develop future dialogue with patient organizations. She said

she wants to establish venues to restore trust and will discuss the 9 action

points listed in the letter and petition.

" She also agreed to a phone conference including representatives from other

patient organizations that joined in this effort. This is expected to be in

March, but we do not yet know exactly when.

" Thank you for participating. This is a first step. "

Vote for Your Concerns - Make Your Voice Known

PANDORA has created a online survey you can use to vote on which of the nine

points in the letter to the CDC you feel are most important to the ME/CFS

Community. (Click on the title to go to the survey).

* * * *

THE NINE CHANGES PROPOSED TO DR. ELIZABETH UNGER AND THE CDC

1. Accept the invitation from patient organizations to an open dialogue through

quarterly meetings, where they can inform you of how CDC policies affect

patients and their quality of life, and where you can educate the patient

community on the reasons for decisions made by the CDC in relation to this

disease. PANDORA's 2009 response to the CDC's request for input to the 5-year

Strategic Plan, as shown on their website, is a good starting point for

discussions.

2. Establish monthly conference calls with a panel of other ME/CFS researchers,

such as those who are members of the International Association for CFS/ME, for

the purpose of creating collaborations.

Attachment 50453. Change the diagnostic criteria for ME/CFS so they more

accurately reflect the NeuroEndocrineImmune disorder discovered in the Incline

Village and Lyndonville outbreaks. Study that illness. The CDC should use the

increasingly more popular and scientifically well-received Canadian Case

Definition for its current and planned 5-year strategy.

4. For cohorts, use patients from well-known physicians who specialize in caring

for ME/CFS patients and have done so for decades. As research history shows,

finding the common denominator of an emerging illness requires the cohort

criteria be narrow. AIDS is a great example of this. In-hospital studies are

best conducted in facilities trained and dedicated to the treatment of ME/CFS

patients.

5. Use your influence and resources to support the Chronic Fatigue Syndrome

Advisory Committee recommendation that the federal government establish and

coordinate a network of specialized care / research centers. This is the

principle behind the NeuroEndocrineImmune Center promoted by PANDORA and

recommended by the New Jersey Legislature.

6. Change the name of the illness to one that reflects the serious and

debilitating reality that many patients experience. Correcting the

misconceptions caused by the trivializing name, " chronic fatigue syndrome, "

rests with the CDC because that is where the current name originated. Invite

input from patient organizations, leading ME/CFS researchers, and recognized

ME/CFS clinicians in choosing a new name that reflects the pathology and not

just one symptom.

7. Establish a proactive physician education program through seminars and

curriculum in medical schools, showing the biological findings in the majority

of patients with this illness. Provide current evidence-based information on

diagnosis and management of ME/CFS to health care providers, persons with

ME/CFS, caregivers, and evaluate associated outcomes.

8. Request that Congress allocate more research funding for ME/CFS to bring it

in line with funding levels of other disabling diseases.

9. Abandon the psychological research (such as the childhood trauma study) and,

instead, study the possible connections to infections in ME/CFS. This is

certainly much more appropriate for your branch, the Chronic Viral Diseases

Branch.

Signatories: PANDORA, Vermont CFIDS Association, CFS Knowledge Center, Rocky

Mountain CFS/ME & FM Association, Mass CFIDS/ME & FM Association, Mothers

Against Myalgic Encephalomyelitis, CFS/FMS Organization of Georgia, CFS

Solutions of West Michigan, Wisconsin ME/CFS Association, Inc., Medical

Professionals with ME, Connecticut CFIDS & FM Association, and a group of

leading individual patient advocates.