Malnutrition and ME/CFS: the NHS is still getting it wrong.

This article was updated 13 February 2024.

It’s happening again.

The young woman was so weak she could barely tap out a few words from her hospital bed, but she wanted to let the outside world know what was happening to her. The doctors had decided to take away her NG tube. They’d decided her problems were psychological and she “needed to try eating a little food”.

This young woman does not suffer from anorexia nervosa. She has ME, a serious neuro-immune condition which has left her profoundly ill. She desperately wants to eat but she is too ill to hold down food; all she can manage is to swallow a bit of water each day. Without the NG tube she will starve.

This happens every few months or so. Last year it was 25-year-old Alice Barrett; Barrett’s severe ME left her able to swallow only a small amount of liquid food each day, so she became malnourished and needed tube feeding. Her family did everything they could to convince the hospital to provide the life-saving treatment, but their arguments fell on deaf ears. Undeterred, the family set up a petition which received over 10,000 signatures. There was a social media campaign and articles in the local press. This story has a happy ending: the publicity worked, and Alice was given a life-saving NG tube. But families shouldn’t have to campaign for their loved ones to receive medical treatment.

Medical knowledge of ME has increased by leaps and bounds in recent years. While the condition used to be dismissively called ‘chronic fatigue syndrome’, we now know that ME is a complex multi-system disease which brings profound neurological, immune and cardiovascular dysfunction. The profound lack of energy reported by patients corresponds to objective findings that the mitochondria do not produce sufficient ATP to meet the cells’ metabolic demands. There is a range of severities, and people with mild ME are able to live somewhat normal lives and participate in society to some extent. On the other hand those with the severest form of ME are so weak they cannot leave their beds, they have such severe sensory sensitivities that ordinary light or sound could provoke a devastating relapse, and they may be too weak to chew or swallow food.

Clinicians who wish to provide the best possible medical care to patients with very severe ME can turn to a fantastic clinical guide written by world-renowned experts: ‘Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome‘. Also recommended is a paper examining issues surrounding malnutrition and severe ME/CFS in the UK context: ‘Life-Threatening Malnutrition in Very Severe ME/CFS‘.

However it’s safe to say that very few UK doctors have read these clinical guides. It is unofficial NHS policy to provide no medical care at all to patients with ME. As far as the NHS is concerned, the condition does not exist. Most patients with the condition are simply ignored, or are fobbed off on occupational therapists who can provide some help adapting to life with the illness – but no medical treatment. Those patients whose illness is so severe that it cannot be ignored are misconstrued as having a psychiatric condition. Misdiagnosis leads to incorrect decisions about treatment, such as the decision to remove the feeding tube of the young woman with ME.

Tomorrow I will remotely attend a pre-inquest hearing into the death of Maeve Boothby-O’Neill, who died of ME in 2021. She was starving when she died. In the months leading up to her death she had three hospital admissions, and with every admission Maeve and her family asked for tube feeding. They were refused.

When I first heard what happened to Maeve I assumed the doctors involved were ignorant. It’s actually worse than that. What I’ve learned is that the NHS operates according to protocols: there’s a protocol that says a doctor can provide tube feeding to a patient recovering from GI surgery, or to a patient undergoing aggressive cancer treatment, or to a patient who’s had a stroke. But there’s no protocol that says a doctor can tube feed a patient with severe ME who’s too weak to swallow food. It would be an off-label treatment, and the doctor who provided it could face disciplinary action. Doctors aren’t allowed to do the right thing for patients with severe ME even if they want to.

The full inquest is expected to take place in July. Its purpose is to determine what caused Maeve’s death. I have no doubt the inquest will uncover a multitude of failings. However I hope the coroner will look beyond the failings of one hospital, and shed light on the profound neglect of ME which pervades the entire NHS. I hope new protocols will be created so that patients with ME finally receive proper medical care.

Most of all, though, I just hope this stops happening.