Update: as of March 1, Alice Barnett has had a feeding tube inserted and is receiving nutrition.
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.
Baxter H, Speight N, Weir W. Life-Threatening Malnutrition in Very Severe ME/CFS.
Studies show that, shockingly, most UK doctors have no training at all on ME/CFS. This can create a dangerous situation for patients, particularly those with the most severe form of the illness. People with severe ME/CFS sometimes become unable to swallow food, which puts them at risk of life-threatening malnutrition. They go hospital, with relatives warning that the patient hasn’t eaten properly in days or weeks – but tests show nothing wrong, and doctors don’t believe that the patient is as sick as the family says they are. Tube feeding is delayed or refused altogether, putting the patient in deadly danger.
This happens again and again. A 2021 paper provides five case studies which demonstrate this pattern. In each of the five cases a patient with severe ME/CFS who was unable to take in adequate nutrition orally was refused tube feeding by doctors who did not believe that the patient was as sick as they or their family said they were.
The pattern can be fatal. Maeve Boothby-O’Neill, a young woman who suffered from severe ME/CFS and became unable to swallow food, died in 2021 at age 27, after doctors at the Royal Devon and Exeter Hospital repeatedly refused to allow her to be tube fed, despite pleas from her family. An inquest, expected to last a full week, is planned to investigate the cause of Boothby-O’Neill’s death, and it’s expected that the inquest will find that malnutrition was a contributing factor. According to the Exeter Coroner’s Office the inquest has not yet been scheduled, although it was tentatively set to take place in March 2023.
The experiences of all five participants share some strikingly similar features. All had been allowed to become and remain severely malnourished and dehydrated. The experience was frightening and emotionally upsetting for the patients. The extent of the malnutrition could have further consequences, both short- and long-term.
Baxter H, Speight N, Weir W. Life-Threatening Malnutrition in Very Severe ME/CFS.
The NICE guidance on ME/CFS was updated just weeks after Maeve Boothby-O’Neill’s death. The new guidelines make clear that people with severe ME/CFS do sometimes become so debilitated that they are unable to take nutrition orally, and that in such cases tube feeding is appropriate (sections 1.17.1, 1.17.2, 1.17.11 and 1.17.12). But the NHS has made no effort to inform doctors of the new guidance, and it seems that, unfortunately, the new guidelines have had little effect on clinical practice.
Now, another young woman with ME/CFS faces life-threatening malnutrition. 25-year-old Alice Barrett is currently a patient at the Royal Devon and Exeter Hospital, the same one where Maeve Boothby-O’Neill was a patient, has been denied tube feeding despite her suffering from malnutrition arising from her severe ME/CFS.
A spokesperson for the Royal Devon University Healthcare NHS Foundation Trust said: “This is a deeply upsetting time for Alice and her family. The complete focus of Alice’s clinical team is to provide her with the safest possible care, and we are drawing on NICE guidance and the expertise of national specialists to do this.”
Yet, according to a message posted by the family on the petition website on 28 February, the hospital is still failing to provide Barnett with nutrition, and her family are more terrified and desperate than ever.
Campaigner Katie Johnstone of the ME/CFS Medical Education Campaign (https://mecfs-med-ed.org/) said: “It seems impossible to understand how doctors could behave so callously in cases such as this, but the simple fact is that the doctor involved might not know much about this illness, and therefore they might fail to recognize that this is a patient who is unable to take in nutrition, who is malnourished, and who may be in very real and imminent danger of death. Our position is that the NHS must urgently provide training on ME/CFS to medical staff. In the meantime, we urge doctors to take the danger of life-threatening malnutrition in a patient with severe ME/CFS very seriously, and to make every effort to provide nutrition.”
This series of cases demonstrate a common set of problems. The clinicians involved seemed unaware that severe ME can lead to serious problems maintaining adequate nutrition and hydration. Perhaps this is understandable, as many clinicians will only meet one or two cases of severe ME in their careers, and the subject is poorly taught at both undergraduate and postgraduate levels.
Baxter H, Speight N, Weir W. Life-Threatening Malnutrition in Very Severe ME/CFS.
The doctors failed to recognize the severity of the malnutrition or to provide appropriate nutritional support in a timely manner. Each case developed life-threatening problems as a result and were only saved by the late introduction of some form of nutritional support.
Further reading
Petition: Save Alice Barrett life, change.org.
ME patients ‘risk dying of starvation’ under NHS care, Kat Lay, The Times, February 27 2023 (paywall).
Exeter mum’s heartbreak as daughter, 27, loses severe ME battle, Anita Merritt, DevonLive, 28 September 2022.
Montoya JG, Dowell TG, Mooney AE, Dimmock ME, Chu L. Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. Healthcare (Basel). 2021 Oct 6;9(10):1331. doi: 10.3390/healthcare9101331. PMID: 34683011; PMCID: PMC8544443. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8544443/.
Baxter H, Speight N, Weir W. Life-Threatening Malnutrition in Very Severe ME/CFS. Healthcare (Basel). 2021 Apr 14;9(4):459. doi: 10.3390/healthcare9040459. PMID: 33919671; PMCID: PMC8070213. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8070213/.
Hng, K.N.; Geraghty, K.; Pheby, D.F.H. An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis. Medicina 2021, 57, 885. doi: 10.3390/medicina57090885. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8464998/.
ME/CFS Medical Education Campaign 