Charmian Proskauer is the President of the Massachusetts CFIDS/ME & FM Association, one of the oldest and most active ME/CFS patient organizations. Previous to her term as president, she served as Website Manager for the association. She was a consultant for the CFSAC Workgroup on the Institute of Medicine report and Pathways to prevention report and frequently gives testimony to the CFSAC committee. She is the Chair of the US Action Working Group, a group of American organizations and activists involve in advocacy. In March 2016, Proskauer, along with other activists, visited Congressional staff members to increase awareness of the illness and the need for increased funding.
Initially, Proskauer was against the Pathways to prevention report (P2P) process, stating in June 2014: "This appears to be a closed process within NIH, which over many years has given little serious attention to this very serious illness...I therefore urge that the P2P process be suspended." After the P2P report was released, she advised the CFSAC committee as a Workgroup Member of the IOM/P2P Workgroup for CFSAC in 2015, where she "supported the recommendations of the CFSAC P2P and IOM workgroups" and "expressed hope that the workgroup process can be a model for working together in the future to achieve earlier diagnosis and better treatment for patients."
One of the areas in which she advocates increased resources and research is in the newly ill, maintaining that since it can take years before a patient is correctly diagnosed, little research is done on how the disease progresses in the initial stage of onset.
HHS/CFSAC meetings[edit | edit source]
- Jun 16,17, 2014 Proskauer's Public Comments for the June 16-17, 2014 meeting
- Jan 2015 Comments from CFSAC on the Draft Report to Pathways to Prevention: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome to which Proskauer provided contributions to the document
- Aug 19, 2015 CFSAC 8/19 Meeting Minutes including discussion from IOM/P2P Workgroup Report and Recommendations as well as public comment from Proskauer
Talks and interviews[edit | edit source]
- Jan 2014, Presentation to the Institute of Medicine Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome regarding children and adolescent patients Text for video
- Mar 29, 2017, ME/CFS Alert Episode 86 - The work of the Massachusetts CFIDS/ME & FM Association with Charmian Proskauer
Research studies[edit | edit source]
- 2019, Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning(Full text)
References[edit | edit source]
- Proskauer, Charmian; Rowe, Peter C.; Lapp, Charles W.; DeMaria, Alfred Jr; Bateman, Lucinda; Attewell, John R.; Proskauer, Daniel; Kiernicki, David J.; Adebayo, Seyi (2019). "Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning". Frontiers in Pediatrics. 6. doi:10.3389/fped.2018.00412. ISSN 2296-2360. PMID 30671425.
Chronic fatigue syndrome advisory committee (CFSAC) - (sometimes pronounced SIF-SACK) A US government advisory council that met twice per year, covering current topics related to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Meetings usually lasted for two days and the results were presented to the Secretary of Health and Human Services (HHS). After 15 years, on September 5, 2018, CFSAC's charter was not renewed by the Department of HHS, effectively dissolving the committee without notice or warning.