Trial By Error: In England, Conflicts Between Families and Hospitals Threaten the Lives of Young Women with ME

By David Tuller, DrPH

ME patients and advocates in England have been alarmed by a series of ongoing cases in which the families of severely ill young women have struggled to convince hospitals to fit them with feeding tubes before they starve to death. I covered a similar situation last year in a piece about the life and death of Maeve Boothby O’Neill, who died at 27 in October, 2021, after failing to obtain the care she hoped for at her local hospital in Exeter.  

But recently other cases have gained attention. The most dire at the moment is that of Millie McAinsh, a young woman from Lancaster. Her situation was highlighted in a change.org petition, a fundraising appeal, and harrowing accounts in The Canary on March 8^th, Byline Times on March 19^th and The Mirror on April 4^th. The latter, by Mirror deputy online features editor Elle Fry, starts like this:

“A hospitalised teen who is unable to walk, talk or eat fears she is going to die because doctors don’t agree that she has ME.

“Millie McAinsh, 18, says she suffers from ME that is so acute that she can’t walk or sit up and struggles to speak or swallow. Even the smallest sensations like touch, noise and light unbearable, as her sensory hypersensitivity leaves her in agony.”

One sticking point is that hospital consultants often know very little about ME, believing that these young women are refusing to eat for psychological or psychiatric reasons—not that they are literally unable to get food down. As a result, they tend to insist that the only appropriate treatments are variations of the discredited interventions that were viewed for decades as the standard-of-care–cognitive behavior therapy and/or some sort of graded activity.

Some of the conflict is also due to standard tube-feeding protocols. These generally call for patients to be sitting at a 30-degree angle or higher under the assumption that being tube-fed while prone can lead to potentially fatal mishaps. ME specialists say that these concerns are greatly overstated and that the alternative—refusing to tube-feed them—is unacceptable and also potentially fatal. This conflict sometimes leads clinicians to blame the family for the severity of the child’s condition, triggering efforts to limit parental access and involvement.

In worst-case scenarios, as with Maeve Boothby O’Neill, this perilous impasse proves fatal. In Maeve’s case, she refused to go to back the hospital after three agonizing stays because she was convinced they would not provide her with the care she needed. She knew she was dying, and she wanted to die at home. An two-week inquest is scheduled to be held in Exeter in July in order to examine what led to Maeve’s death.

Prominent advocacy groups, including the ME Association and Action For ME, are pushing for changes in Millie’s care as well as major changes in how the National Health Service handles severe ME cases. As has become apparent, the NHS does not have a clue what to do in these circumstances, nor does it provide much or anything in the way of guidance. That leaves clinicians, hospitals, and desperate families in limbo.

Today, Action For ME issued the following statement:

“Action for M.E. is again saddened and concerned to see further reports relating to the concerning treatment of Millie and others with severe ME in hospitals and the lack of adherence to the NICE Guideline on ME/CFS.  

“We will continue to take action to ensure that people with severe ME receive the treatment and care that they require, including supporting individuals directly when requested, whilst reducing the stigma and misunderstanding that still surrounds the condition.

“We are doing this by working closely with our network of Parliamentary Champions to raise awareness of ME within Parliament, ensuring that needs of people with ME are not forgotten. This includes calling for the full implementation of the National Delivery Plan on ME/CFS, when it is released.

“In our position as Secretariat for the APPG [All-Party Parliamentary Group] on ME, we are also in collaboration with the ME Association and the 25% M.E. Group to support the work of the APPG and its upcoming focus on severe ME. The group will be reviewing the lack of specialist care available to people with severe ME and identifying opportunities to improve the availability of support.

“We are also currently working collaboratively with other ME organisations to develop a ‘hospital pack – a self-advocacy pack for people with ME who are admitted to hospital – enabling them to effectively communicate their needs and healthcare requirements. We look forward to sharing this with you soon.”

Millie’s family has been providing updates on social media. Apparently, she has now been fitted with a nasogastric tube and is tolerating it. (It’s not clear to me exactly when this happened.) Hopefully she will be allowed to return home soon to her family, where she belongs, and be able to receive the care she needs there.