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

[Three Chord Monty]

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.

The potential adverse consequences for the patient of their problem not being promptly recognized and responded to are considerable. There is often a significant delay in implementing tube feeding in patients experiencing difficulties obtaining nutrition and hydration. Tube feeding is often not instigated until the malnutrition becomes life threatening. Healthcare professionals seem to fail to recognize that the inability to eat and drink is a direct consequence of the severity of the ME, instead preferring to postulate psychological theories.

Two of the patients’ ME was so severe that they were unable to read, write or type and in one case speak.

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.

 

[Midnattsol]

This makes me so mad! When we had about how neurological disease affects nutritional status, a number of potential problems were brought up:

• Inability to go shopping and/or prepare foods (Due to weakness, fatigue etc.)
• Inability to eat and/or digest food
• Nausea or lack of appetite

These problems are also present for pwME, but ME/CFS were not mentioned in any disease category when we had about clinical nutrition for adults. PwME were mentioned when we had about children, but only because of a very involved pediatrician at the local hospital.

I would like to do a survey of nutritional status in Norwegian pwME. Severe malnutrition in the severely affected is one thing, but mild/moderate cases could still become malnourished as foods that are easy to prepare and eat (chosen to save energy) may not provide one with the nutrients one needs.

Edit: Sadly, malnutrition is not uncommon. Many health care workers do not know much about nutrition.. There are some very sad numbers in Norway about the prevalence of malnutrition in hospitals and care homes for example.

 

[Adrian]

I would like to do a survey of nutritional status in Norwegian pwME. Severe malnutrition in the severely affected is one thing, but mild/moderate cases could still become malnourished as foods that are easy to prepare and eat may (chosen to save energy) may not provide one with the nutrients one needs.

I think even moderate cases can have issues due to nausia and lack of appetite. One thing I wonder is whether these symptoms increase/decrease along with severity (as with other symptoms).

 

[Midnattsol]

I think even moderate cases can have issues due to nausia and lack of appetite. One thing I wonder is whether these symptoms increase/decrease along with severity (as with other symptoms).

I'm mild/moderate (more on the moderate side the last year), and I struggle with this. It comes and goes, which it also did when I was mostly mild. It's worse when I've overdone it, and if I'm in PEM it's the worst.

With my height/weight and activity levels, I normally don't need a lot of energy - meeting the micronutrient requirements on a low amount of energy can be difficult even without problems to prepare foods/eat/digest/deal with nausea or no appetite. It makes me worried for micronutrient deficiencies in pwME even if the person is able to eat enough calories.

 

[Mij]

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.

 

[Invisible Woman]

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 think even moderate cases can have issues due to nausia and lack of appetite. One thing I wonder is whether these symptoms increase/decrease along with severity (as with other symptoms).

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

With my height/weight and activity levels, I normally don't need a lot of energy - meeting the micronutrient requirements on a low amount of energy can be difficult even without problems to prepare foods/eat/digest/deal with nausea or no appetite.

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.

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.

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

 

[DokaGirl]

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.

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.

 

[DokaGirl]

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

 

[DokaGirl]

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.

 

[Shinygleamy]

I think even moderate cases can have issues due to nausia and lack of appetite. One thing I wonder is whether these symptoms increase/decrease along with severity (as with other symptoms).

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

 

[Peter T]

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’]

 

[Midnattsol]

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.

The use of PEG over NG is already in general guidelines for nutritional support, if it is believed support is needed for more than 4-6 weeks PEG should be preferred over NG. Other patient groups certainly also have issues getting nutritional care, although that seems to be more about lack of understanding about nutrition needs in general, not about disbelief of the condition.