Independent Advisory Group (IAG): biographies and declarations of interest (June 2021)

Biographies

Hilda Bastian (lead)

I have been a freelance writer and meta-scientist since early 2018. I was a health care consumer for many years in Australia and internationally, including chairing the Consumers’ Health Forum of Australia. In the early 1990s, I helped develop the Cochrane Collaboration and participated in various roles, although I have not been a member of the organization since around 2012. Analyses of various methodological issues affecting Cochrane reviews were central to my doctoral dissertation on factors affecting the reliability of shifting evidence in health care.

I worked in the area of assessing and communicating evidence about the effects of health care for about 20 years, including developing the plain language summary system for Cochrane reviews and evidence-based patient information services in Germany (for IQWiG, the Institute for Quality and Efficiency in Healthcare) and the US (at the National Library of Medicine in the National Institutes of Health). I became involved with issues around evidence and participation in ME/CFS when I wrote a blog post critical of the Cochrane review on exercise and CFS in early 2019.

Lily Chu

Dr. Lily Chu has a background in biology, internal/geriatric medicine, and public health. She graduated from the University of Washington (Seattle, WA, USA; BS, molecular and cellular biology; MD), trained in internal medicine at the University of Rochester (Rochester, NY) and in geriatric medicine at the University of California, Los Angeles (UCLA), and obtained an MS in health services research also from UCLA. In 2006, her life took a detour due to ME/CFS. Recognizing the many challenges the global ME/CFS community faced, she decided to shift the focus of her career. She currently serves as a community advisory board member at the Stanford University ME/CFS Initiative and as Vice President of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME). US federal agencies (NIH, CDC, FDA) value Dr. Chu’s expertise and she also co-authored the 2015 US National Academy of Medicine report, "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness." She hopes to bring her multiple perspectives - as patient, scientist, clinician, and public health advocate - to this project.

Mike Clarke

I have more than 30 years’ experience in rigorous assessments of the effects of interventions and actions, inside and outside health care; and in conducting and teaching about research methodology. I have worked on some of the world’s largest randomised trials in areas as varied as maternity care, breast cancer, poisoning and stroke; as well as dozens of systematic reviews. I am Chair of Research Methodology and Director of the Northern Ireland Methodology Hub based at Queen’s University Belfast; Director of the Northern Ireland Clinical Trials Unit; and Co-ordinating Editor of the Cochrane Methodology Review Group and of the James Lind Library. I was chair of the Cochrane Collaboration Steering Group from 2000 to 2004 and Chair of the MRC Network of Hubs for Trials Methodology Research from 2011 to 2014. I teach widely about trials and reviews, seeking to increase capacity for the conduct and use of research. I am a founder, Chair of the Board of Trustees and Research Director of Evidence Aid, improving access to research that is relevant to disasters and humanitarian emergencies.

George Faulkner

I am a Fellow at the Centre for Welfare Reform, where I have written about the ways that misleading claims in medical research can relate to social and political problems. Since the Lancet published claims about a "strict criterion for recovery" for the PACE trial I have become increasingly interested in the cultures of those institutions that many of us trust to provide accurate medical information. I first raised concerns with Cochrane about their CFS work in 2013. I have also done small pieces of patient engagement over the last decade, some of which were more than box ticking exercises.

Peter Gladwell

Pete is a Clinical Specialist Physiotherapist in the Bristol Chronic Fatigue Syndrome/ME Service and team lead. He also works in the North Bristol NHS Trust Pain Management Service. Pete’s clinical roles have included Pain Management Programmes and co-delivery with lay tutors. He has been involved with individual rehabilitation and group treatment in the Bristol CFS/ME Service since 2004. Pete also has a longstanding involvement with the Physiotherapy Pain Association, in the Chartered Society of Physiotherapy, collaborated extensively with Action for ME, and has co-authored a report on the Action for ME 2010 rehabilitation survey. Pete’s PhD investigated the use of TENS devices by people with chronic musculoskeletal pain. He supports undergraduate physiotherapy education about CFS/ME, and is also involved in the delivery of the Masters level fatigue course at the University of the West of England.

Jaime Seltzer

Jaime Seltzer is the Director of Scientific and Medical Outreach for the neurological illness, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), at the nonprofit healthcare advocacy organization #MEAction. She is responsible for fostering communication between research scientists, clinicians, and people with myalgic encephalomyelitis.

She has represented #MEAction at Centers for Disease Control and Prevention (CDC), National Institutes of Health (NIH), Capitol Hill, Columbia University (Collaborative Research Centers), and Stanford University; and she has been the invited author and/or committee member for national healthcare organizations Canadian Institutes of Health Research (CIHR), Office of Health Protection (Australia), National Institutes for Health Care (UK) and NIH. She works as a research consultant to Stanford University's Stanford Genome Technology Center on ME/CFS-related projects.

Penelope McMillan

ME/CFS Australia nominated Board member, Penelope McMillan. Penelope McMillan’s relevant background includes pre-ME employment in psychology, education and economics. She is trained in health consumer advocacy, including training in public participation through IAP2 (International Association for Public Participation). Her health consumer advocacy experience covers research, ageing, carers, disability, chronic illness, and specifically ME/CFS.

She will be supported by her long-term colleague, Penelope Del Fante; with Chair of the Board, Geoffrey Hallmann, as proxy. All three have had ME for more than twenty years, including periods of severe ME; and they each have significant advocacy experience, separately and as a team.

Samuli Tani

I’ve been disabled by ME/CFS since June 2016 when I had an enteroviral infection. It took 10 weeks of steady linear worsening until I had to quit my job. Post exertional malaise was easily observed in my case and I was given the diagnosis of G93.3 (postviral fatigue syndrome) five months into my illness. Lack of knowledge and lack of interest in ME/CFS among health care professionals bothered me greatly. Our young association (Suomen lääketieteellinen ME/CFS-yhdistysry, https://slme.fi) was established in 2017 and it became a member of EMEA (European ME Alliance) in May 2019 and the secretary of Finnish parliamentary network on ME/CFS in June 2019.

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