The newly published 2021 NICE guideline on ME/CFS calls for a change in culture, from one of stigma and disbelief to one which listens to the patient. Doctors with M.E. starts by listening to one patient’s story.
Dr. Hng collapses at work and still doesn’t know she is ill. She doesn’t call for help. She thinks she will be up again in ten minutes…
Dr. Hng is a senior trainee in General Internal Medicine and Gastroenterology. She is a medical educator, Honorary Lecturer at the largest medical school in the country. Has she never heard of ME?
Dr. Hng’s tale…
“That’s just what doctors who were also mothers did.”
I wasn’t a lazy or slow person. I was an intelligent, hardworking, resourceful and responsible doctor and mother who had never done anything but my very best, all my life. And now being responsible meant I did what needed to be done. It didn’t matter how I felt. I got up, drove the long commute to work, saw all the patients I needed to see, fought all day to be efficient, stayed late if needed, and drove back again. Every day.
It didn’t matter that as hard as I fought it, I regularly nodded off on the road. It didn’t matter that I still needed to rock my little one to sleep (who later turned out to have ADHD which means she doesn’t sleep), and was also teaching my four-year-old to play the piano. That’s just what doctors who were also mothers did. I was determined that my children would not lose out to the demands of my career.
“Out of sheer determination, my work improved. I got through more patients and continued gaining knowledge.”
I started taking coffee. A LOT of coffee. I HAD to stop falling asleep in clinics. I HAD to stay awake on the road. I particularly struggled in the afternoons, and a strong coffee over lunch was essential. When on night shifts, I took sedatives in the day time to make me sleep, in the hopes I’d be able to function through the long night.
Out of sheer determination, my work improved. I got through more patients and continued gaining knowledge. Patients loved me and gave me good reviews. But in my appraisals, I was never judged good enough. I was getting sicker and no one saw it. Not me, not my supervising Consultant, not my dozens of other colleagues.
One night shift I couldn’t function at all. I could not get up off the chair. All night. A powerful, invisible magnet pulled me flat onto the desk, chair and floor. I could not overcome it.
I should have alerted the duty Consultant, who was now home in bed after a very long day herself, but what was I to say? That I was tired because I had young children at home? I didn’t think that would go down well – other doctors have children too. Besides, I wasn’t planning to stay in the office for so long. “Just ten more minutes,” I told myself. “I WILL get up.” So there I was, collapsed but still fighting to perform, not realising that I was seriously ill.
“I was terrified that I would be killed and my children orphaned.”
I was taken off night shifts temporarily (or so we thought). It didn’t make me feel any better but somehow I managed to limp along for another six months. Every minute I fought to be the smart, confident doctor, nearly ready to be a Consultant, that I was meant to be. Yet I didn’t even have the energy to smile at people, and was in constant pain. Every muscle ached and every movement was a test of will. By the end, I was walking into our busy office barely standing, hoping that by some miracle, I would be invisible to the secretaries who always had a stream of administrative tasks lined up for me.
I never did stop nodding off on the road. It only got harder. I was terrified that I would be killed and my children orphaned…
About Dr. Hng
Dr. Hng is a British physician who fell ill with Myalgic Encephalomyelitis. Having little prior knowledge of the condition before being struck down with it herself, and finding little help or understanding from the National Health Service, she soon realised the huge need for medical education on ME/CFS.
Being housebound, seriously ill and frequently bedbound made this a challenging task. Creative solutions were needed, and so her book was born. Battling daily symptoms, this teacher and medical educator now draws on her resilience and resourcefulness. On the fifth anniversary of the day she was forced to stop work – her “sickiversary”, Dr. Hng launched Doctors with M.E. (DwME), bringing together the experience of thousands of others like herself.
Together, doctors, scientists and health care professionals with lived experience of ME/CFS, and increasingly also Long Covid, are a voice that cannot be ignored. Just months from launch, Doctors with M.E. has already made significant impact and established itself on the world stage. Among these include contributions to professional and policy dialogues regarding the 2021 UK NICE guideline on ME/CFS and success securing annual influenza vaccinations for all ME/CFS patients in England’s largest primary care partnership, a half a million patient practice.