Nutrition Intake in Patient with ME/CFS Compared to Healthy Controls, 2024, Liljebo

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Nutrition Intake in Patient with ME/CFS Compared to Healthy Controls
Liljebo, Therese Maria
Andreasson, Anna
. 
Canadian Journal of Dietetic Practice and Research
; Markham Vol. 85, Iss. 3, (Sep 2024): 216.
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CS25.02 Nutrition Intake in Patient with ME/CFS Compared to Healthy Controls

Miss Therese Maria Liljebo1 , Associate professor Anna Andreasson2 1Department of Medicine, Solna, Karolinska Institutet, Stockholm, Sweden, 2Stress Research Institute, Stockholm University, Stockholm, Sweden

Background:

Myalgic Encephalomyelitis/ Chronic fatigue syndrome (ME/CFS) is a chronic disabling disease. The pathophysiology is still unknown but we hypothesized that poor dietary intake of energy and macro nutrients may contribute to the persistent fatigue in these patients.

Research Objective:

The objective of this study was to compare macro-and micronutrient intake from patients with ME/CFS and individuals from the general population in Sweden.

Methods:

We compared energy- and macronutrient intake from calculated 3-day food diaries from 18 patients with ME/CFS participating in a longitudinal study on persistent fatigue and 117 healthy individuals from the general Swedish population.

Results:

Patients with ME/CFS had a significantly lower energy intake (mean 1670 kcal/day) than healthy individuals (mean 1934 kcal/day), p=0.04 (one sided t-test) and eight patients with ME/CFS had an energy intake below their estimated basal metabolic rate (BMR). This was due to a lower intake in proteins (65 g and 76 g, respectively, p=0.03) and carbohydrates (180 g and 210 g, respectively, p=0.03) while no difference was seen in fat intake (70 g versus 75 g, p=0.24). Patients with ME/CFS had a significantly higher fluid intake (2280 ml versus 1640 ml p<0.001). No differences were seen in energy percent (E%) between patients with ME/CFS and controls: 16 versus 17 fat E% (p=0.8), 34 versus 36 protein E% (p=0.3) and 47 E% from carbohydrates in both groups (p=0.9).

Discussion:

The patients with ME/CFS reported a lower energy intake than healthy individuals from than the general Swedish population, and had a lower intake of proteins and carbohydrates. Further studies on a larger patient population is needed to further compare dietary patterns and micronutrient intake between patients with ME/CFS and healthy individuals.

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I wonder how much of this is due to GI issues. I can only eat small meals and not too often. Last year I dropped to a low weight, 132 lbs at 185 cm, and I managed to get back to about 150 lbs by eating a snack in the afternoon and more caloric food but I still couldn't handle a normal-sized meal. It took a lot of help to get me there and I often felt too stuffed even though it amounted to maybe 2500 calories per day.

1600 calories is probably about what I can handle. Doesn't 'help' that I barely eat deserts or sweets, and rarely eat fast food or drink colas or alcohol, although technically that would be a good thing. But if I eat any more than I can handle comfortably I get too much bloating and abdominal pain, terrible reflux, nausea, slow gastric emptying and so on.

The appetite is usually there, unless I eat too much and get nauseous and GERDy. I guess it could be framed as eating PEM, if I eat too much I get smacked in the face with a shovel, but that seem to fit the general idea of IBS just as well.
 
Sasha said:
Quite apart from GI issues, I wonder how much of it is down to simply not moving enough to need the normal amount of calories.
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There are a lot of conflating things here aren’t there - as well as questions like how ill were the pwme and were they in a crash on those 3days just affecting ability to do a diary because now each time you get food you also have to write it down which makes it a bigger energy barrier

from a simple point there is the fact lots of food people eat is socialising or snacks that we mighnt be as out and about to walk past that hot dog van or grab the hot chocolate or something from the buffet of pastries whilst in a work meeting

and if we are still able to work the number of days we are so ill by the time we get home it’s crash into bed in our work clothes nevermind what norms assume of ‘you can always just fit a little snack in before you sleep’

and yes as soon as someone finds something disagrees with them it might make easy choices less accessible- there’s no point eating something that goes straight through you even if it is what’s ’to hand’ and some haughty medic says ‘but it’s not officially an allergy is it’.

I think my point is that it might be a useful study in some ways but it needs to remember its measuring the situational we’ve been put in and NOT the pathology of the condition - most of us are out in situations where we have to do 200% of what we can and are expected to be grateful for ‘that adjustment’

until that situation is understood instead of us all being over threshold being seen as ill because we don’t do enough rather than this cumulative downhill deterioration due to the attitude of never giving us anywhere near enough of the break we need , and yeh at the same time prowling round us fir behavioural stuff they can predate on to claim as ‘cause’ well…


I think I’ll make this point here because it feels a timely reminder- when we need rest THAT is as vital as getting food. I don’t feel that’s been understood yet. That we’ve (just like the build ourselves up in other ways we attempted before we realised we had something weird) learned that when you do it in the wrong order that food isn’t processed and you go into ‘can’t rest’ stage where you al can’t do anything, aren’t recovering yet and your body goes into a weird state where it is using more energy it feels. NOONE will hear this. How important not being tipped into that over over threshold is vs eating 4hrs later once you’ve had a massive sleep.

it’s not ideal we knew , but we aren’t dumb and know that the only other option people want to nudge us to is even worse re downhill trajectory (we’ve almost certainly tried it)

the real options that would work are: decent medications that help our illness, PROPER adjustment so we stand a chance of not always being in PEM between commitments that can’t possibly bend that much for us because they don’t believe an appointment in person will mean two weeks literally flat on back, or a phone call many days.

I doubt this research covers the most severe but this is when things really start to hit the ‘no wins’ and even bigger ‘won’t understand’ issues. The sad thing from reading stories of it is that the pwme saw it coming in time or a lot ahead of the medics who didn’t understand the ‘ratchet’ concept of me/cfs meaning that delay, delay just makes that achieving balance of exertion etc vs intake even more of a fine needle to thread

I worry people see the solution here as ‘just eat’ (and all the behavioural non-negotiables that are implicit in that they don’t realise) whilst they are ill or being snide that they’d be less ill if they switched their priorities and ate more. Whilst carefully pretending they haven’t simplified the full problem WE have to deal with to an isolated bite size chunk that pretends the real issue doesn’t exist

the last thing we need is coaching from the very people who made the world this way for us and want to keep justifying it
 
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