A Conversation with Patient Advocate Adam “Beyonce Holes” Lowe

By David Tuller, DrPH

Adam Lowe, known in some incarnations as Beyonce Holes, is a longtime ME/CFS patient and advocate in Manchester, England, served as a lay member of the committee that produced the new clinical guidance published last October by the UK’s National Institute for Health and Care Excellence. (This conversation was a follow-up to one I previously posted about his experiences on the committee.)

We also discussed other recent developments. The first was the release in May of a report called Rethinking ME by the All-Party Parliamentary Group on ME. The same month, then-health minister Sajid Javid launched an effort to promote research into the illness, boost awareness, and improve services for patients. Javid indicated publicly that the plight of a close relative had heightened his awareness of the issue. (Javid resigned this month during the collapse of Boris Johnson’s leadership, so the exact future of this initiative is not clear.)

I was having some issues with Zoom, so Adam kindly recorded the conversation for me. I also forgot to turn on my video until half-way in, so for the first part I’m just a disembodied voice.