"Gastrointestinal symptoms, diet and health-related quality of life in ME/CFS" 17-minute recording of Breanna Weigel presentation

@Hutan and other aussie members: it is mentioned in this video that a number of pwME in Australia report an intolerance to meat. Meat allergy is a vector induced allergy, which can be spread by certain tick species. You wouldn't know if this is something that occur in Australia and could perhaps explain part of this finding?
 
It's a nice presentation.

I think the suggestions that Breanna makes at the end are important i.e.
  • need a study with healthy controls. The way they have defined GI problems, I think most healthy women might experience GI problems, e.g. bloating, even if at just a low level. Also, I think they might be surprised at how many healthy controls do report a food intolerance. For example, prior to ME/CFS and now, I would have said that I have an intolerance to sulphites in preserved foods (I get asthma), and intolerance of/avoidance of preserved foods was the highest category reported in this ME/CFS sample.
  • need a study with ill controls. IBS is mentioned. I think people with chronic health conditions, especially ones where the pathology is not well understood, might be avoiding certain foods just in the hope that it makes things better.
  • need a longitudinal study to track changes in GI symptoms over time. There have been times in my illness (probably for the first few years) when GI symptoms were important, particularly diarrhoea, and post-prandial discomfort. But, they aren't now.
I didn't really recognise my illness now in the description given. GI symptoms are not really a notable feature for me now, I don't avoid any food groups (I have tried some elimination diets, like gluten, but haven't found anything that makes a difference. Perhaps I haven't tried hard enough on that.).

I don't think alcohol particularly affects me, and Breanna suggests that it does affect many people with ME/CFS. I avoided it early on as it seemed like an imposition on my body to add a toxin that needed processing when it was struggling to cope. But I don't think it causes me any particular problems other than the normal concern about weight gain.

By coincidence, I happen to be filling out the NCNED survey at the moment. I do wonder how accurate these surveys are. they go on for a long time, and it gets tedious trying to decide how much impact each possible symptom has. I also don't know what to answer with the question about whether rest relieves my fatigue. I know the correct answer in order to meet the ME/CFS criteria is 'no', rest doesn't relieve my fatigue. But, in fact, it does. And I think it must for nearly everyone who isn't very severe. I mean, when we crash and have very bad fatigue, if we don't rest, the crash doesn't go away. If we do rest, the terrible fatigue that makes it hard to do anything eventually goes away.
 
Last edited:
But do you have non-PEM fatigue (as defined as a lack of energy compared to the average healthy person) and if so is that relieved by rest? That is what I would imagine you are being asked about, but it probably isn't clear because the questionnaire creators wouldn't have considered how a variety of PwME might understand the question in different ways.
 
Andy said:
But do you have non-PEM fatigue (as defined as a lack of energy compared to the average healthy person) and if so is that relieved by rest? That is what I would imagine you are being asked about, but it probably isn't clear because the questionnaire creators wouldn't have considered how a variety of PwME might understand the question in different ways.
Click to expand...
Well, I'm easily fatigued I guess, in that it's hard to walk and especially hard to walk up hills if I walk for any length of time. But, rest fixes the difficulty walking.

Most mornings I wake up feeling a bit ill and exhausted. A bad day is when I have to retire to my bed for the afternoon (even though I wouldn't call that PEM), a very bad day is when I have to stay in bed. But, if I do rest, I do get back to my baseline. Sometimes if I have an afternoon sleep, I will feel ok in the evening. I have times where I'm not conscious of feeling fatigued.

The question seems wrong. Yes, normal levels of rest don't eliminate the fatigue and low threshold for fatiguability, but rest does relieve feelings of fatigue and fatigued muscles.

If I answer the question truthfully, that my fatigue is relieved by rest then I assume I will have wasted my time filling out the survey and won't get to contribute blood for the study, because I won't qualify as having ME/CFS.
 
Hutan said:
Well, I'm easily fatigued I guess, in that it's hard to walk and especially hard to walk up hills if I walk for any length of time. But, rest fixes the difficulty walking.

Most mornings I wake up feeling a bit ill and exhausted. A bad day is when I have to retire to my bed for the afternoon (even though I wouldn't call that PEM), a very bad day is when I have to stay in bed. But, if I do rest, I do get back to my baseline. Sometimes if I have an afternoon sleep, I will feel ok in the evening. I have times where I'm not conscious of feeling fatigued.

The question seems wrong. Yes, normal levels of rest don't eliminate the fatigue and low threshold for fatiguability, but rest does relieve feelings of fatigue and fatigued muscles.

If I answer the question truthfully, that my fatigue is relieved by rest then I assume I will have wasted my time filling out the survey and won't get to contribute blood for the study, because I won't qualify as having ME/CFS.
Click to expand...
The original wording in the Fukuda criteria was *substantially* relieve i.e. "is not substantially alleviated by rest".
But I noticed that word gets dropped quite a lot when those criteria are listed.
 
Still, my fatigue is substantially relieved by rest. I can be incapable of functioning, I have an afternoon sleep and then I can make a meal. I think it is a problem in the criteria.
 
I didn't
Hutan said:
Yes, this does seem to be a well recognised thing. I recall cases particularly around Sydney, people develop an intolerance to meat due to tick bites.
https://www.abc.net.au/news/2019-01-18/how-ticks-can-cause-mammalian-meat-allergy/10719136
Click to expand...
To be pedantic, with tick bites it is actually an allergy that develops against a glycoprotein found in many mammals (but not humans and some other apes) :p For some it gets really bad while for others it is only mildly irritating. It is also an allergy that can disappear over time, though I'm not sure how many it happens to, I don't think it's a high number.
Hutan said:
  • need a study with healthy controls. The way they have defined GI problems, I think most healthy women might experience GI problems, e.g. bloating, even if at just a low level. Also, I think they might be surprised at how many healthy controls do report a food intolerance. For example, prior to ME/CFS and now, I would have said that I have an intolerance to sulphites in preserved foods (I get asthma), and intolerance of/avoidance of preserved foods was the highest category reported in this ME/CFS sample.
  • need a study with ill controls. IBS is mentioned. I think people with chronic health conditions, especially ones where the pathology is not well understood, might be avoiding certain foods just in the hope that it makes things better.
  • need a longitudinal study to track changes in GI symptoms over time. There have been times in my illness (probably for the first few years) when GI symptoms were important, particularly diarrhoea, and post-prandial discomfort. But, they aren't now.
Click to expand...
We'd also need some knowledge on if people get the nutrients they need if they remove certain food items from their diet. I'm not familiar with typical Australian diets, but in Norway if you drop dairy products you almost certainly will need supplements, and not everyone is aware of this or think they will be fine if they switch to plant-based milks (which do not contains the same nutrients naturally, but a handful is fortified).

And are they avoiding foods due to an intolerance or because of a belief (be it animal/planet welfare, health, religion...)

I'm not sure IBS would be a good control since it can co-occur with many other illnesses (though co-occuring IBS might be explaining the problems of some pwME and then comaring with other patient groups with co occuring IBS might be good). Fibro patients are known to try different diets, see also other painful conditions like RA.
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom