By David Tuller, DrPH
I recently wrote an article for Codastory.com about Maeve Boothby O’Neill, who died from complications of severe ME in October, 2021, after three separate admissions to her local National Health Service hospital in Exeter, England. During her hospital stays, she and her family fought with the hospital over the need for tube-feeding or an alternate approach called total parenteral nutrition that bypasses the digestive system altogether.
Conflicts involving malnutrition are also at the crux of a dispute involving Alice Barrett, a current patient in the same facility, the Royal Devon and Exeter Hospital. The issue is the hospital’s tube-feeding policy, which requires patients to be able to sit up at an incline of at least 30% in order to minimize the risk of complications like aspiration pneumonia. This policy conforms to standard medical practice.
Addressing malnutrition in severe ME is a challenging domain of medical practice. At some point, it can become difficult or impossible for some patients to chew and swallow enough food to ingest sufficient nutrients and enough water to prevent dehydration. If that happens, it becomes necessary to find another way to keep patients alive—either tube-feeding or TPN, an intravenous approach that can be used when tube-feeding fails or is not possible.
But by the time ME patients deteriorate to that point, sitting up at even a 30% incline can be intolerable to them, because of postural orthostatic tachycardia syndrome (POTS), or other factors like post-exertional malaise (PEM).
“In severe cases a 30 degree raise of the upper body is enough to reduce brain blood flow causing light headedness, nausea, vertigo, sometimes even loss of consciousness,” said William Weir, an infectious disease physician who specializes in ME and has been involved as an outside consultant in both Maeve’s and Alice’s cases. Dr Weir said he has had severe ME patients who have been tube-fed at much lower angles and has advised the hospital that he believes it can be done safely.
My UC Berkeley friend and colleague John Swartzberg, an infectious disease physician, said that 30% “is a common target” for tube-feeding but should not be treated as absolute. “You have to weigh risks and benefits,” he said, noting that in this case, from what he could tell from the petition, the benefits certainly seemed to outweigh the risks.
Alice was diagnosed with ME in 2020 after graduating from Newcastle University with a history degree. By last spring, her health had deteriorated to the point where she was bedbound.
To raise awareness of the case and generate public pressure on the hospital, Barrett’s family last week started circulating a petition, which so far has received more than 10,000 signatures. “We need a suitable feeding option offered as soon as possible...Alice is running out of options and time,” declares the petition.
The family met with hospital staff today but so far no resolution to the impasse has been found, Debbie Barrett, Alice’s mother, told me.
“The frustrating thing is just a lack of understanding and ignoring our advice,” she wrote in an e-mail. “From the very beginning we said that 30 degrees incline would be problematic. Instead they pushed and pushed it without thinking of ME and POTS or the effects of PEM.”
Yesterday, The Times published a piece about the Barrett case and a second one elsewhere in England. The second case involves Sami Berry, 43, another severely ill ME patient suffering from nutrition issues and facing challenges at the Royal Berkshire Hospital, an NHS facility in Reading. The group #MEAction issued a press release about the case last week.
The Times article contained responses from both spokespeople for both hospitals:
“A spokesman for Royal Berkshire Hospital said: ‘Our clinical teams are in ongoing talks with Ms Berry and her family about her condition and most appropriate treatment. We cannot comment on the specifics to preserve patient confidentiality. However, as a trust, our highest priority is ‘always providing safe, appropriate and high-quality care to Ms Berry.‘
“Professor Adrian Harris, chief medical officer at Royal Devon University Healthcare NHS Foundation Trust, said: ‘ME is an incredibly complex and poorly understood disease. It is recognised that there is a global lack of evidence for the safe treatment and maintenance of people living with ME.’“
There is very little medical literature on the issue of addressing severe malnutrition in ME. One of the few, co-written by Dr Weir, is a 2021 report of five cases. Here’s the abstract:
“Very severe Myalgic Encephalomyelitis (ME), (also known as Chronic Fatigue Syndrome) can lead to problems with nutrition and hydration. The reasons can be an inability to swallow, severe gastrointestinal problems tolerating food or the patient being too debilitated to eat and drink. Some patients with very severe ME will require tube feeding, either enterally or parenterally. There can often be a significant delay in implementing this, due to professional opinion, allowing the patient to become severely malnourished. Healthcare professionals may fail to recognize that the problems are a direct consequence of very severe ME, preferring to postulate psychological theories rather than addressing the primary clinical need. We present five case reports in which delay in instigating tube feeding led to severe malnutrition of a life-threatening degree. This case study aims to alert healthcare professionals to these realities.”