Life-Threatening Malnutrition in Very Severe ME/CFS, 2021, Baxter, Speight, Weir

Life-Threatening Malnutrition in Very Severe ME/CFS

Helen Baxter, Nigel Speight, William Weir

Healthcare (MDPI), Open access

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.


https://www.mdpi.com/2227-9032/9/4/459/htm

Case study covering five patients.

 

I was considered malnourished (proteins, fats essentially vitamins) when I was eating a well balanced nutritious diet. I can understand malabsorption, but something else is going on too.

 

Of course some ME patients gain weight and this is as much due to the inability to afford, acquire and prepare the food needed for a nutritious & balanced diet.
It is quite possible to also be overweight and malnourished.

I carb crave when in PEM while at the same time my appetite can decrease & nausea increases.

This is the same for me. Not everyone understands that or has the input to help them even if they had the capacity to do much about it.

Definitely. No matter how well I eat I am always, at best, at the very low end of normal for trace elements in particular.

 

I had a similar experience. Following testing I was told to eat more of certain foods, but I wasn't lacking regarding my intake of these. I agree, something else is going on.

 

Digestive issues are of course another area where tragically medicine, and the public in general quickly ascribe psychological causes. This nonsense knows no bounds.

 

And, pwME suffer a range of digestive issues, some of which are sort of helped by special diets, and even limiting food intake out of necessity, due to every blinking thing one eats causing pain.

 

They do. It's certainly been the case for me, my mum and my two brothers over the years

 

The Baxter et al research by it nature only dealt with patients who survived the ordeal of health service disbelief and inertia, how many people do not survive this, but die of malnutrition and dehydration?

PEG feeding ought to be considered after just a few weeks of NG tube feeding, not months or even years. Where tube feeding fails PNT is the only option to prevent death from malnutrition and/or dehydration. Do any other patient groups face such disbelief and total inertia? Other patient groups, for example MND (ALS), have largely won the battle to have their needs for ongoing alternative feeding techniques supported in the community.

Another potential theme here is the need to fight the ‘health care’ system in order to achieve any recognition of their obvious clinical needs. We see this in other cases that have come to light since this paper where the patient and their carers have had to resort to press campaigns and national petitions to try to force health care to take appropriate action. This happens not just in the UK but also in other countries. Is having a highly motivated patient with an articulate and pushy family also necessary for these patients to survive our health care system.

How many people unable to initiate such campaigns, perhaps even with their ME/CFS undiagnosed, simply just die with their malnutrition/dehydration unrecognised or untreated. Also do any/many individuals choose not to fight, choose suicide by medical neglect? Horrific as death from dehydration and malnutrition is, for some this may be preferable to the alternatives.

[edited - redrafted the final paragraph and corrected one use of ‘NG feeding’ replacing it with ‘tube feeding’]