Lily Chu

Source: iacfsme.org

Lily Chu, MD, MSHS, is board certified in both internal medicine and geriatric medicine. In 2006, she developed myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Education

As per LinkedIn bio:

• Geriatric Medicine Fellowship, University of California, Los Angeles
• MSHS, Public Health, University of California, Los Angeles
• Internal Medicine Residency, University of Rochester
• MD, University of Washington
• BS, Biology, University of Washington

Boards and Committees

• Community Advisory Board Member at Stanford University Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome Initiative

• Co-Vice president of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

• Panel member of the 2015 Institute of Medicine report: Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness

April 2013 FDA Workshop Survey

• Preliminary Results – April 2013 FDA Workshop Survey, By Lily Chu, Leonard Jason, Madison Sunnquist, Suzanna So

Open Letter to The Lancet

Two open letters to the editor of The Lancet urged the editor to commission a fully independent review of the PACE trial, which the journal had published in 2011. In 2016, Dr. Chu, along with 41 colleagues in the ME/CFS field, signed the second letter.

• 10 February 2016, An open letter to The Lancet, again - Virology blog

Quotes

• 2016 - "Ultimately the best way to prevent suicide in ME/CFS will be to find effective disease-modifying treatments or cures for it."

Publications

• May 2016, Suicide and ME/CFS -- Lily Chu, MD, MSHS
• 2012, "Exercise and chronic fatigue syndrome: maximize function, minimize post-exertional malaise," Letter to the Editor, European Journal of Clinical Investigation

Notable Studies

• 2017, Patients diagnosed with Myalgic encephalomyelitis/chronic fatigue syndrome also fit systemic exertion intolerance disease criteria

  Abstract - Background: Myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) remains undiagnosed in up to 91% of patients. Recently, the United States-based Institute of Medicine (IOM) developed new diagnostic criteria, naming it systemic exertion intolerance disease (SEID). Purpose: We examined how subjects fit SEID criteria and existing ME/CFS case definitions early in their illness. Methods: A total of 131 subjects fitting 1994 Fukuda CFS criteria at the time of study recruitment completed a survey of symptoms they experienced during their first 6 months of illness. Symptoms were drawn from SEID and existing criteria (1994 Fukuda, 2003 Canadian Consensus Criteria (CCC), and 2011 Myalgic Encephalomyelitis-International Consensus Criteria (ME-ICC)). We calculated and compared the number/percentage of subjects fitting single or combinations of case definitions and the number/percentage of subjects with SEID experiencing orthostatic intolerance (OI) and/or cognitive impairment. Results: At 6 months of illness, SEID criteria identified 72% of all subjects, similar to when Fukuda criteria (79%) or the CCC (71%) were used, whereas the ME-ICC selected for a significantly lower percentage (61%, p < .001). When severity/frequency thresholds were added to the Fukuda criteria, CCC and ME-ICC, the percentage of these subjects also fitting SEID criteria increased to 93%, 97%, and 95%. Eighty-seven percent of SEID subjects endorsed cognitive impairment and 92%, OI; 79% experienced both symptoms. Conclusions: SEID criteria categorize a similar percentage of subjects as Fukuda criteria early in the course of ME/CFS and contain the majority of subjects identified using other criteria while requiring fewer symptoms. The advantage of SEID may be in its ease of use.

Talks and Interviews

• 2015, Solve CFS Webinar - Post-Exertional Malaise: History, Characteristics, Evidence

Written questions and answers to Dr. Chu's webinar

Questions to NIH during Advocacy Call

• 2 Nov 2016, NIH ME/CFS Advocacy Call with Dr. Walter Koroshetz, Dr. Vicky Whittemore, Dr. Joseph Breen, and Dr. Avindra Nath - (Recorded call and Transcript) - During the question and answer session, Dr Chu asked if the ME/CFS interest group seminars would be online and open to extramural investigators but was told by Dr. Avindra Nath that the seminars were set up to be one-on-one interactions.

HHS/CFSAC Testimony

• CFSAC Public Testimony December 2014
• Written Testimony for June 2012 meeting
• Written Testimony for Nov 2011 meeting
• Written Testimony for May 2011 meeting
• Written Testimony for October 2009 meeting

Online Presence

• LinkedIn

myalgic encephalomyelitis (M.E.) - 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.

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

myalgic encephalomyelitis (M.E.) - 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.

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.

Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

International Consensus Criteria (ICC) - A set of diagnostic criteria, based on the Canadian Consensus Criteria, that argued for the abandonment of the term "chronic fatigue syndrome" and encouraged the sole use of the term "myalgic encephalomyelitis".

orthostatic intolerance (OI) - The development of symptoms when standing upright, where symptoms are relieved upon reclining. Patients with orthostatic intolerance have trouble remaining upright for more than a few seconds or a few minutes, depending upon severity. In severe orthostatic intolerance, patients may not be able to sit upright in bed. Orthostatic intolerance is often a sign of dysautonomia. There are different types of orthostatic intolerance, including postural orthostatic tachycardia syndrome (POTS).

cognition Thought processes, including attention, reasoning, and memory.

National Institutes of Health (NIH) - A set of biomedical research institutes operated by the U.S. government, under the auspices of the Department of Health and Human Services.

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.