Donna M. Pearson is a patient advocate from Holland, Massachusetts. She became ill with myalgic encephalomyelitis (ME) in 2003 following a flu, that in her words, "was far worse than anything I had ever experienced." Prior to becoming ill she worked as the Vice President for a real estate syndication firm, established her own management company, raised a family, and led a full and active life.
Massachusetts CFIDS/ME & FM Association[edit | edit source]
Chronic Fatigue Syndrome Advisory Committee[edit | edit source]
Questions to NIH during Advocacy Call[edit | edit source]
- 2 Nov 2016, NIH ME/CFS Advocacy Call - (Recorded call and Transcript) with Dr. Walter Koroshetz, Dr. Vicky Whittemore, Dr. Joseph Breen, and Dr. Avindra Nath - During the question and answer session, Pearson challenges Dr. Koroshetz's statements that the illness needed champions. She stated that we do have champions. And they’ve been working for years and that we needed the NIH to become our champion.
Talks and interviews[edit | edit source]
References[edit | edit source]
Myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.
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.