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

Pyrrhus

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FINALLY, someone has addressed this very important issue in a publication:

Life-Threatening Malnutrition in Very Severe ME/CFS (Baxter, Speight, and Weir, 2021)
by Helen Baxter, Nigel Speight, and William Weir
https://www.mdpi.com/2227-9032/9/4/459/htm

Excerpt:
Baxter et al 2021 said:
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.
(spacing added for readability)

Problems with eating in severe ME include dysphagia (a neurological problem with swallowing), gastroparesis (a neurological problem with movement of the gastrointestinal tract), and uncontrolled vomiting (a potentially neurological problem of the brainstem).

Bravo!
 
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Pyrrhus

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I guess these cases just develop unrecognized Myasthenia.
Unlike in Myasthenia Gravis, in ME the term "paresis" is used more often than "myasthenia".

The International Consensus Criteria simply uses the term "muscle weakness":
https://me-pedia.org/wiki/International_Consensus_Criteria

Some people prefer to use the term "dysautonomia" when the muscle weakness affects involuntary muscle movement, such as in dysphagia and gastroparesis.

Hope this helps.
 

Countrygirl

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Pyrrhus

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Here is just one case report from the publication:

3.4. Case 4

This patient was diagnosed with ME as a child. Several years later the ME became very severe. She became virtually unable to eat and had severe nausea. An ME specialist recommended tube-feeding. The patient and her parents agreed to it. There was a lengthy delay because the local pediatricians refused it. Her inability to eat and the delay caused significant weight loss and the situation became life threatening. The patient was admitted to hospital where [Naso-Gastric Tube] (NGT) feeding commenced. The local pediatricians claimed that she had anorexia nervosa and [pervasive] refusal syndrome and threatened admission to a psychiatric unit. A psychiatrist found that she did not have any psychiatric disorders. She was NGT fed for nine months before a [Percutaneous Endoscopic Gastrostomy] (PEG) was sited.