By David Tuller, DrPH
Times coverage of another severe patient
On February 15th, The Times covered the case of yet another patient with severe illness. The article, by health editor Eleanor Hayward, bore the headline “My body can take no more, says ME patient starving in hospital.” The subhead: “Campaigners say the suffering of Savannah Victora-May, 23, highlights NHS inaction over recommendations that it set up specialist services for severe cases.”
Victoria-May has been at Queen Elizabeth Hospital in southeast London for close to a year. The case has drawn the attention of Action for ME and other patient advocates. In December of 2024, a coroner in Exeter published what is called a “report to prevent future deaths” after an inquest into the case of Maeve Boothby O’Neill, a severe ME patient.
Boothby O’Neill, 27, died in 2021 of malnutrition after three hospital stays failed to halt her deterioration. The report to prevent future deaths included an appeal for specialist ME/CFS services.
Per The Times: “Victora-May is unable to eat or drink and is in severe pain, drifting in and out of consciousness. She has lost 30kg since her admission in March and has eaten nothing since January 18…Speaking from hospital via a friend, Victora-May described the pain as ‘like being lowered into a bath of acid and the acid rating gets turned up more and more every half hour.’”
The Canary, a scrappy muckraking publication, has also covered the situation. A petition has been posted on change.org. According to the UK’s ME Association, Tessa Hunt, a member of parliament, mentioned the case in recent public comments regarding the lack of specialist services.
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Non-triumphalist story about “brain retraining” for ME/CFS in Guardian
Stories about so-called “brain retraining” programs for chronic illness are often triumphalist narratives about full recovery after a few sessions of whatever—the Lightning Process or the Gupta Program or this or that. This week, The Guardian published something a bit different on ME/CFS and these mind-body approaches. The author, Hermione Hoby, is a British journalist who now lives in Boulder, Colorado, and she paints a more nuanced, thought-provoking account of her experience.
The headline: “My maddening battle with chronic fatigue syndrome: ‘On my worst days, it feels almost demonic.’” Subhead: “I suffered with my mystery illness for decades before gaining a diagnosis. Could retraining my brain be the answer?” (In the end, the answer was no, although it appeared to Hopy to have helped for a while.)
The writing is lovely—wry and elegant, moving but not maudlin, ironic and self-aware. Hoby keenly describes her discontent with clinical encounters:
“The experience went like this: a doctor would glance at the blood test results in his or her (but usually his) hands and tell me I was fine. They’d tend to avoid my eyes as they said this. My test results were indeed fine, and so were my vitals, more or less (lowish blood pressure), but the situation clearly was not. One doctor told me to eat vegetables. When I managed to mumble that I did eat vegetables, this doctor slightly smirked as she said: “Yeah, but do you really?””
After many years, Hoby received an ME/CFS diagnosis. Her illness followed a fluctuating pattern—long periods of apparently full recovery followed by serious relapses lasting weeks or months, for no discernible reason. Boulder is a leading center of “woo-woo”—Hoby’s word, although I concur about Boulder—and she ended up seeing a brain-retraining practitioner.
His strategy included watching “messianically positive video testimonials” in which “men and women avowed the miraculous effects of brain retraining”–and it seemed to work. Hoby improved dramatically. As she writes:
“There followed a period of quasi-religious mania. I was cured! (!!!) I began referring to my ME/CFS in the past tense and applying the principles of brain retraining to other areas of my life. Finding myself running further and faster, and writing with more ease, I felt superheroic. My husband, delighted to see me well, also became a little wary around me, as if I might take the mind-over-matter credo to the point of attempting to walk through walls.”
Then she crashed again—forcing her to reassess her views and navigate complicated feelings about the whole matter. Definitely worth a read.
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Boston Globe offers in-depth look at life with Long COVID
The Boston Globe has published a detailed and heartbreaking story a detailed and heartbreaking account about Samantha Crausman, a young Massachusetts woman who has suffered with prolonged symptoms since a 2022 bout of COVID-19. The headline: “A doctor watches his 28-year-old daughter suffer from long COVID. He clings fiercely to hope.”
The article, by long-time health reporter Felice Freyer, doesn’t break a lot of new ground. However, it offers an in-depth look at multiple aspects of living with Long COVID, especially the ME/CFS subtype. Freyer covers the skepticism of medical professionals toward patients, the extreme measures families pursue to protect loved ones from further infection, the desperate search for any and every possible treatment, the sense of living in perpetual limbo.
Rob Crausman, Samantha’s father, is a lung specialist and has practiced medicine for decades. He has been dismayed at how the medical field has mishandled the illness that has so disrupted his daughter’s life. Per the Globe:
“He never imagined his profession could so completely fail his own child at her time of greatest need.
“‘I’m profoundly disappointed,’ he said.
“To this day, he gets well-meaning advice from physician friends who show surprising ignorance about his daughter’s condition.
“‘If I have one more person tell me that she just needs to do yoga, I will lose my mind,’ he said.”