Life-threatening Malnutrition InSevere ME : Why It Happens & How To Help
Causes and Treatments of Malnutrition in Severe Myalgic Encephalomyelitis
Potential Causes
Mast Cell Activation Neuroinflammation
Gastroparesis
Dysphagia
Inability To Access Nutrition
Treatments
Assisted Cooking & Feeding
Liquid Diet
Feeding Tubes
TPN
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ME Malnutrition Myths
Patients who can eat never require supplemental nutrition.
Many patients with very severe ME can only eat on their best days. This is not enough food to sustain them and thus intervention is required even if they can occasionally eat.
Patients who are young women must be anorexic.
While anorexia can occur in patients with ME as a form of trying to exert control over incontrollable suffering, this does not negate the myriad of reasons why young women with ME may be malnourished such as mast cell disorders, gastroparesis, and swallowing problems. Furthermore, tube feeding has been denied to young women with ME on the basis of anorexia when had they been anorexic it still would have been indicated. Emergency rooms must treat life-threatening malnutrition even if the cause is indeterminate or thought to be anorexia.
Patients must sit up to be tube fed.
Patients can successfully be tube fed at below the recommended incline angle. For patients with very severe ME tube feeding at a low angle minimizes orthostatic intolerance and cardiac stress which improves chances of recovery.
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Mast Cell Activation & Severe ME
Mast cell activation syndrome is extremely common in severe ME compared with the general population. It causes symptoms of up to full anaphylaxis including hives, shortness of breath, migraine, gastrointestinal distress, tachycardia and low blood pressure or fainting in reaction to eating foods, exposure to allergens, fragrances or chemicals.
Mast cell activation can lead to malnourishment because of the extreme restrictions of a low histamine diet. Furthermore, no diet is actually free of histamine and so some extremely reactive or untreated MCAS patients can react even to very low histamine foods.
Because mast cell reactions are utterly miserable and can be life-threatening, food restriction is a common coping mechanism for controlling symptoms.
It is essential that doctors both treat malnutrition as it occurs AND treat mast cell activation adequately to allow patients the best possible chance of eating normally.
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Gastroparesis & Dysphagia
Gastroparesis is a condition where the gut and stomach do not move food through the body at a normal or adequate speed.
Symptoms include: Bloating, Constipation, Low appetite or feeling full after eating only a small amount of food, weight loss and more
Gastroparesis can be diagnosed via gastric emptying studies if the patient can consume orally. It can also be diagnosed via symptoms. Medications can assist with improving the activity of gut muscles which can alleviate some symptoms but severe cases can require feeding tubes or TPN (IV nutrition)
Dysphagia is the inability to swallow. It can occur permanently or often occurs temporarily after overexertion. Patients with dysphagia may use feeding tubes or a diet of thick pudding-like foods that are safer for swallowing. Dysphagia can be diagnosed using a swallow study or by symptoms.
Both gastroparesis and dysphagia in ME are worsened by overexertion including being sat up, forced to consume oral nutrition, or extended hospital stays. Therefore, prompt initiation of home tube feeding for dysphagia or TPN for severe gastroparesis to allow the gut to rest is lifesaving.
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Neuroinflammation Reaction To Food & Water
Some patients with very severe ME experience neuroinflammation in response to food or even drinking water. This manifests as severe headaches and mental symptoms such as anxiety, depression, and akathisia or extreme restlessness. It may be described as feeling the brain is on fire.
This reaction may be caused by mast cell activation or by the energy drain caused by swallowing and digesting.
While not documented in literature, it has been reported by Sophia Mirza and by Judith @judyintheskynet as well as others in severe patient forums. It is most likely to occur in severe energy crisis such as that leading up to death.
Because this symptom can be so debilitating it can cause anorexic-like behavior in patients who seek to avoid this reaction. This may mimic an eating disorder but it is psychologically very different. Eating low histamine, plain, and easy-to-digest foods like rice and eating food in the middle of the night or between sleep / active rest can help to lessen the symptoms and increase calorie intake.
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Inability To Access Nutrition
In addition to the minority of ME patients who are physically unable to tolerate most nutrition, there is a much larger set of patients who struggle to access nutrition for primarily societal reasons. For example:
Needing to eat a specific diet but only having access to processed foods that do not fit the diet prescribed.
Not being able to afford food that does not worsen symptoms or that causes anaphylaxis.
Not having the physical energy to access a kitchen or cook.
Not having the energy to cut up and eat food independently.
Not being able to afford food.
These are all problems that can best be solved not with doctors' orders and feeding tubes but with access to regular caregiving and assistance cooking and feeding. Follow @mutualaidforme to help patients afford these basic needs.
The mental toll it takes on patients who cannot access nutrition for any reason to know they have been abandoned to starve to death is also unbearably high. Food is a human right and one ME patients are often denied.
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Assisted Cooking And Feeding
Feeding a severe ME patient can often be one of the most time-consuming and difficult parts of caregiving. There are a number of challenges caregivers aiming to assist severe ME patients in eating face including:
-Numerous food allergies / intolerances
-Need to minimize energy spent sitting up enough to eat and chewing
-Patience with spoon or syringe feeding to minimize energy expenditure and prevent choking.
Some creative solutions for helping severe patients access nutrition include:
-Keeping a cart with a microwave, kettle etc and various shelf-stable products near the bed
-Batch cooking and freezing large amounts of food (works well for low histamine diet)
-Using a steam in microwave cooker to cook whole foods like salmon, chicken, broccoli, carrots etc.
-Using a rice cooker, insta pot, air fryer, or slow cooker for low energy cooking
-Liquid diets and commercial or prescription (can then be govt subsidized) meal replacement drinks kept near the bed
-Drinking soup through a straw
-Syringe feeding instead of spoon-feeding
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Feeding Tubes
For severe patients at risk of malnutrition a feeding tube may be required. Before using a feeding tube options like syringe feeding and liquid diet / meal replacement shakes should be tried to avoid risk of intestinal perferation or surgical infection.
Feeding tubes can be used with many liquids. For patients with mast cell activation, whole food blends or high concentration hypoallergenic baby formula may be better tolerated. For POTS patients electrolyte hydration can be administered.
A NJ tube (nasal feeding tube) is usually the first option for a feeding tube. However, for longer-term use or depending on gut function some patients surgically place G or J tubes. The actual procedure of placing a feeding tube can be a large stress on people with extremely severe ME, hospital stay length should be minimized and NJ tube replacement done at home when possible.
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TPN
TPN aka IV nutrition despite risk of infection is very useful in patients with severe gastroparesis or whose energy limits cause issues with digestion. TPN allows the gut to rest possibly allowing for improvement in gut dysfunction. TPN can be safely administered at home via PICC line or Hickman line and this is prefered unless a very low stress low sensory environment is possible in hospital.
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Key Management Advice For Doctors
If nutritional deficits occur in ME patients intervene early with the assistance of a dietician if possible. If lack of caregiving leads to nutritional deficits work to help patients access social services.
Be aware of mast cell activation as cause for severe symptoms after eating and modify diet accordingly.
Be aware of the potential for eating and drinking to cause post-exertional neuroimmune exhaustion in very severe patients. Consider a liquid diet.
If tube feeding or TPN is necessary intervene before nutritional deficits become life-threatening. Carefully consider minimizing exertion and length of hospital stay when inserting a feeding tube. Remember that tube feeding is possible without sitting up. Remember that TPN minimizes not just swallowing effort but also allows digestive track rest, possibly allowing recovery to tube feeding or liquid diet.
Suggestions can be given to doctors with the paper "Life-Threatening Malnutrition in Very Severe ME/CFS" by Baxter et all 2021.
www.ncbi.nlm.nih.gov/pmc/articles/PMC8070213/
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