Chronic Fatigue Advisory Committee (CFSAC) 2018 Charter Dissolution

To Whom It May Concern:

Pursuant to the Freedom of Information Act, I hereby request the following records:

Any and all agency records (documents, memos, emails, deliberations) leading up to and related to the dissolution of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) charter in September 2018.

The requested documents will be made available to the general public, and this request is not being made for commercial purposes.

In the event that there are fees, I would be grateful if you would inform me of the total charges in advance of fulfilling my request. I would prefer the request filled electronically, by e-mail attachment if available or CD-ROM if not.

Thank you in advance for your anticipated cooperation in this matter. I look forward to receiving your response to this request within 20 business days, as the statute requires.

Sincerely,

Adrienne Murphy

February 15, 2024

Freedom of Information Act Appeal

William H. Holzerland
Deputy Agency Chief FOIA Officer
U.S. Department of Health and Human Services
Office of the Assistant Secretary for Public Affairs
HHS.ACFO@hhs.gov

Re: Appeal of Case No. 2023-01116-FOIA-PHS

Dear Mr. Holzerland:

I am writing to appeal the Department’s denial of the above referenced Freedom of Information Act request.

I submitted a request on August 17, 2023 to the Department of Health and Human Services through the MuckRock News Foundation portal for records related to the dissolution of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) charter in September of 2018.

On November 20, 2023, HHS FOI/Privacy Acts Division responded (from Arianne Perkins, attached) that The Office of the Assistant Secretary of Health (OASH)/Office on Women’s Health (OWH) had found 56 pages of responsive records but “…determined to withhold the information in its entirety, pursuant to Exemption (b)(5) of the FOIA (5 U.S.C. §552).”, specifically the deliberative privilege.

I believe that my request was improperly denied for the following reasons:
1) Public Interest – I filed this request to better understand the decision to allow the charter of the Chronic Fatigue Syndrome Advisory Committee/CFSAC to expire with no prior notice either to members of the committee with ongoing projects or the patient community with no opportunity for input. I also hoped to find out if the Department had responded to a congressional request for further information dated December 17th, 2018 (attached). Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a historically marginalized, stigmatized, underfunded, and poorly understood disease that is estimated to affect more than 3 million Americans according to the CDC’s most recent estimates (https://www.cdc.gov/nchs/products/databriefs/db488.htm) with these numbers expected to increase with the addition of patients with Long COVID meeting the diagnostic criteria for ME/CFS. In addition to the suffering of this massive patient community the financial impact to the U.S. economy is substantial and growing There is no cure for ME/CFS, there are no FDA-approved treatments, research is still significantly underfunded, medical education and informed care remain inadequate to the needs of this debilitating disease.

2) Many records are publicly available including a bicameral Congressional letter signed by 42 members of Congress dated December 17th, 2018, requesting a response by January 12, 2018, a community letter signed by both at the time current and past members of CFSAC, researchers, clinicians, and patient organizations (attached) and other patient organization requests for meetings.

3) More than 5 years have passed since the dissolution of the CFSAC charter and although a discretionary committee, members of the patient community if not owed an answer to what happened certainly deserve one. With the creation of the Long COVID Advisory Committee and the inclusion of ME/CFS as a related condition it is important to understand any mistakes of the past in order not to repeat them and impair the success of the new committee going forward.

Conclusion

For the reasons stated above I ask the Department to reconsider its determination to “withhold the information in its entirety” and release the responsive records or any segregable content to help the community better understand what changes it needs to make to successfully move forward.

Respectfully submitted,

Adrienne Murphy
12151 Woodin Rd.
Chardon, OH 44024
murphy.adriiennealan@gmail.com
1(216)509-5373
1(440)279-4171