The need for an NHS protocol to combat medical neglect of patients with severe ME/CFS
This is based on a story pitch that didn’t get picked up - there’s nothing new here, but I put some effort into laying this out in a clear and understandable way, and I thought it was worth posting.
Currently in the UK, patients with severe ME who become unable to eat are routinely denied tube feeding and left to starve.
Patients may lose the ability to eat because they become too weak to chew and/or to swallow, or because they have very severe gastrointestinal problems. These problems are explored in detail in the report ‘Life-Threatening Malnutrition in Very Severe ME/CFS’.
There are no doctors with specialist knowledge of ME working in NHS hospitals.
In the UK all hospitals are run by the NHS. Some private treatment facilities exist, but they offer a limited service and are not suitable for seriously ill patients.
The UK does have a small number of knowledgeable and dedicated ME specialists who work heroically to help their patients. However most of them work privately (not within the NHS). When patients hire these knowledgeable consultants to advise hospital doctors, the consultants are ignored because they do not work within the NHS.
Hospital doctors who are faced with a patient with severe ME who is unable to eat typically make the incorrect assumption that the patient is choosing not to eat as a result of anorexia nervosa or some other mental health problem.
Even doctors who have good clinical knowledge of ME do not feel able to do the right thing for these patients. Providing tube feeding to patients with severe ME is considered to be an 'off-label' treatment. Doctors are afraid to provide this treatment because it could lead to them being disciplined by the hospital. They could even face losing their medical license. Therefore there is an urgent need for an NHS protocol laying out the proper clinical treatment of patients with severe ME who become malnourished.
Such a protocol could be based on the clinical guide ‘Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’.
There is an open letter calling for such a protocol here: Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.).
There is an ongoing inquest into the 2021 death of Maeve Boothby O'Neill, who was denied tube feeding three times on three separate hospital admissions and was left to starve. A senior NHS doctor who was involved in this case has said in a written statement to the inquest:
"For patients with severe [or] very severe ME there are no commissioned specialist inpatient services both regionally and nationally. This gap in service has also been confirmed by the local integrated care board [responsible for planning and funding most NHS services in an area]. In order to rectify this situation, action is required at the highest level."
Another doctor involved in the case said:
"Several doctors involved in her care stated they do not believe ME is a medical problem."
Both quotes are from Death prompts Devon hospital chief to speak out on 'ignored' illness.