Life-threatening malnutrition in very severe ME/CFS, by Helen Baxter, Nigel Speight and William Weir in Healthcare 2021, 9(4), 459; [doi.org/10.3390/healthcare9040459] 14 April 2021 (This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected)
Case Reports 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.
Excerpt from Discussion:
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…
Case 2 highlights an important issue. If a patient is failing to respond to enteral feeding, the possibility of MCAD needs to be considered. This is a recognized complication of severe ME and effective treatment exists in the form of oral cromoglycate and antihistamines. It has probably contributed to several deaths of severe ME sufferers.
In every case, the most positive improvement in their management came about as the result of the allocation of a named HENS dietician whose advanced training in enteral nutrition enabled them to make changes to the patient’s diet. In one case it enabled the patient to get to a healthy weight using enteral nutrition whilst making changes to the oral nutrition such that enteral feeding is now no longer required. In another case, dietary changes ameliorated suffering. All patients felt supported by their HENS dietician.
For patients with very severe ME connecting with a knowledgeable healthcare professional who does domiciliary visits is very important. Such a policy would reduce the need for hospital admissions which would be to the benefit of all. All patients with very severe ME should be allocated a HENS dietician as soon as nutritional difficulties become apparent.
An early warning system needs to be put in place for patients with severe ME so that when they or their representatives become aware of the development of problems with oral intake prompt action is taken and tube feeding started thereby avoiding undernutrition in patients with very severe ME. Early intervention in the form of tube feeding has been shown to be beneficial in patients with severe ME .
Patients with very severe ME are bedridden and require around the clock care. They are best cared for at home where the environment can be adapted to best meet their needs. These patients will have extreme sensitivity to noise and light, such that they need to be cared for in a darkened room. People with very severe ME invariably report travel to hospital and the hospital environment significantly exacerbates their condition. If an admission to hospital is necessary, and this should only be done for emergency treatment, they will require admission directly into a side room and to be cared for by a small number of staff who understand ME as an organic illness.
For the patient with very severe ME, it appears to be common practice for Clinical Commissioning Groups (CCGs) to adopt a ‘re-site in hospital’ policy despite a large study showing that with protocols in place trained nurses in the community can identify the position of NGT’s correctly without the need for hospital attendance .
Nonetheless it is stated: ‘Local protocols should address the clinical criteria that permit enteral feeding .’
None of the participants were offered NGT re-sites at home, instead they went to significant lengths to avoid trips to hospital if at all possible; re-siting their own NGTs or opting to have NJTs or PEGs. A constructive change would an implementation of national guidelines allowing NGT re-sites to be carried out in the community by appropriately trained professionals. A community-based service could bring potential savings to the NHS and certainly benefit patients with very severe ME. The treatment of serious undernutrition issues in ME needs to be included in national and local guidelines for use by health care professionals.