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

Discussion in 'ME/CFS research' started by Three Chord Monty, Apr 14, 2021.

  1. Three Chord Monty

    Three Chord Monty Senior Member (Voting Rights)

    Life-Threatening Malnutrition in Very Severe ME/CFS

    Helen Baxter, Nigel Speight, William Weir

    Healthcare (MDPI), Open access

    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.


    Case study covering five patients.

    Yvonne, Hutan, Shinygleamy and 32 others like this.
  2. Midnattsol

    Midnattsol Moderator Staff Member

    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.
    Last edited: Apr 16, 2021
  3. Adrian

    Adrian Administrator Staff Member

    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).
    Yvonne, Hutan, Shinygleamy and 11 others like this.
  4. Midnattsol

    Midnattsol Moderator Staff Member

    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.
  5. Mij

    Mij Senior Member (Voting Rights)

    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.
    Yvonne, Shinygleamy, Sarah94 and 7 others like this.
  6. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    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.
    Yvonne, Mithriel, Shinygleamy and 8 others like this.
  7. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    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.
  8. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Digestive issues are of course another area where tragically medicine, and the public in general quickly ascribe psychological causes. This nonsense knows no bounds.
    Yvonne, Shinygleamy, Sarah94 and 9 others like this.
  9. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    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.
    Yvonne, EzzieD, Midnattsol and 3 others like this.
  10. Shinygleamy

    Shinygleamy Senior Member (Voting Rights)

    They do. It's certainly been the case for me, my mum and my two brothers over the years
    DokaGirl, Yvonne, Amw66 and 3 others like this.

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