Helen Baxter, Nigel Speight and William Weir
Very severe Myalgic Encephalomyelitis (ME) 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 (see the study itself). This case study aims to alert healthcare professionals to these realities.
Summary
The experiences of all five participants share some strikingly similar features.
* All were allowed to become severely malnourished and dehydrated to a life-threatening extent.
* The inability to swallow in all cases was believed to be psychological in origin and psychiatrists became involved in all cases.
* All five were considered to be suffering from anorexia nervosa; had this been the case it would have warranted tube feeding.
* Two were advised that their enteral nutrition would be stopped, despite a clinical need.
* Two were threatened that they would be sectioned under the Mental Health Act, if they did not eat and drink or if they lost weight again.
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.
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.
Clinical inertia was evident throughout. In respect of the repeated finding that patients were wrongly regarded as having an eating disorder as a cause for their nutritional problems, it is lacking in logic for the doctors concerned not to have treated this on its own merit. Tube feeding, with or without a court order, is frequently resorted to in cases of an eating disorder. Either the doctors were not serious in making this diagnosis or they were somehow generally prejudiced against the patients on account of their being cases of ME/CFS. In each case, the doctors resorted to making inappropriate psychological diagnoses without positive evidence of psychopathology.
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. 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 admission.
An early warning system needs to be put in place for patients with severe ME
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.
Conclusions
To remedy the problems identified in this survey, the most important first step remains to improve medical education for healthcare professionals regarding the fact that severe ME can cause nutritional problems, and that these may require early intervention with tube feeding.
Progress has been made in that a Continuing Professional Development (CPD) Module on ME has been developed and launched in May 2020. The uptake was very poor with fewer than two thousand clinicians taking the module to date. Medical education around ME needs to be made part of the core curriculum for undergraduate students and should also be included in postgraduate education.
It is necessary for the clinician to recognize ME/CFS as an organic illness. It can only be hoped that the new NICE Guidelines aid clinicians’ understanding and provide guidance on dealing with nutritional problems such as those described in this series.
Source: Healthcare
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