-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
Wonko
Senior Member (Voting Rights)
Depends - but all of the above options have occurred at some point.
Sometimes food will 'perk' me up, sometimes alcohol will also do so.
Sometimes it will make me feel worse, and shut me down.
Sometimes it can make me feel better but then I find out I've been unconscious for a 'while'.
Sometimes it does nothing.
Chinese food, in fact most takeaways, but chinese's in particular, have made me feel much worse for many years - but for some reason I forget, and think I like them, only to find out that they don't like me.
Sometimes food will 'perk' me up, sometimes alcohol will also do so.
Sometimes it will make me feel worse, and shut me down.
Sometimes it can make me feel better but then I find out I've been unconscious for a 'while'.
Sometimes it does nothing.
Chinese food, in fact most takeaways, but chinese's in particular, have made me feel much worse for many years - but for some reason I forget, and think I like them, only to find out that they don't like me.
An interesting question, but I'm sorry, I can't answer it. I have no idea. Eating is necessary for life, so I do it, and sometimes even enjoy it, but I don't focus on the pattern in my symptoms over the day enough to notice whether eating improves or makes my symptoms worse.
Edit: And eating usually happens around the same time as some physical activity preparing food, sitting up to eat etc, so any worsening could be more related to that.
Edit: And eating usually happens around the same time as some physical activity preparing food, sitting up to eat etc, so any worsening could be more related to that.
I think it can depend on what you eat as well I get a boost off sugary food but feel rubbish later.
Peter T
Senior Member (Voting Rights)
The impact of my diet is not simple enough to adequately squash into a poll, though I chose the third option of eating making it worse, this may relate to inadequacies in support available in relation to food, rather than food in the abstract being a problem.
The impact of eating varies at least with quantity and type food. Large meals such as Christmas dinner, provoke immediate fatigue and further PEM the next day, but also a more ordinary generous sized portion immediately induces fatigue. Smaller meals are presumably better, but simply because of the effort in getting a meal I usually only have energy to eat once or twice a day so need bigger individual meals, which results in immediate fatigue.
At times just having soup or vegetable juice seems to help, but I don’t know if that relates to consuming less or to the fact that it is liquid or to the type of food. Obviously there is the broader issue of food intolerances, but beyond that what I eat has a differing effects. I use sugar rich food for a short term boost to exceed my normal available energy if something has to be done at that point in time, but then obviously experience payback.
This then also interacts with my being largely reliant on ready meals, and currently needing to have others doing my shopping in smaller local supermarkets that have very limited range with the exclusions dictated by my food intolerances. So at present I have no idea what it would be like if I had access to healthy home cooked in smaller portion sizes three or four times a day. So it could be the with the right support food might improve my fatigue etc, I just don’t know.
When the two of my godchildren who are food professionals, one a chef and the other food film producer, separately stay (pre lockdown) I cope better with having them as house guests than other people, so the right food more often may help balance the negative impact of increased activity level.
[added pre lock down]
The impact of eating varies at least with quantity and type food. Large meals such as Christmas dinner, provoke immediate fatigue and further PEM the next day, but also a more ordinary generous sized portion immediately induces fatigue. Smaller meals are presumably better, but simply because of the effort in getting a meal I usually only have energy to eat once or twice a day so need bigger individual meals, which results in immediate fatigue.
At times just having soup or vegetable juice seems to help, but I don’t know if that relates to consuming less or to the fact that it is liquid or to the type of food. Obviously there is the broader issue of food intolerances, but beyond that what I eat has a differing effects. I use sugar rich food for a short term boost to exceed my normal available energy if something has to be done at that point in time, but then obviously experience payback.
This then also interacts with my being largely reliant on ready meals, and currently needing to have others doing my shopping in smaller local supermarkets that have very limited range with the exclusions dictated by my food intolerances. So at present I have no idea what it would be like if I had access to healthy home cooked in smaller portion sizes three or four times a day. So it could be the with the right support food might improve my fatigue etc, I just don’t know.
When the two of my godchildren who are food professionals, one a chef and the other food film producer, separately stay (pre lockdown) I cope better with having them as house guests than other people, so the right food more often may help balance the negative impact of increased activity level.
[added pre lock down]
Last edited:
Peter T
Senior Member (Voting Rights)
In summary the factors I see as complicating responding to this poll include
- energy requirements of accessing food and/or support available to access food
- portion size, eating and digesting are physical activities which can trigger PEM
- food type issues that are ME specific, food sensitivities etc
- type of food, more general issues
- energy requirements of accessing food and/or support available to access food
- portion size, eating and digesting are physical activities which can trigger PEM
- food type issues that are ME specific, food sensitivities etc
- type of food, more general issues
Samuel
Senior Member (Voting Rights)
i did not answer the poll, because i am too conservative to claim significantly for some time consistently, but eating DEFINITELY frequently immediately improves malaise and most likely fatigue in my case.
random facts:
i eat frequently. [when executive dysfunction does not prevent that.]
blood sugar issues can cause worse overall health / pene. but they don't always cause malaise or fatigue at that time [perhaps this exception is related to adrenaline or sympathetic ns].
i have gastroparesis.
ETA: i have orthostatic intolerance. [reference to next post.]
when i was ambulatory, in college age, i had the [paradoxical] sensation of low blood sugar after eating.
due to executive dysfunciton, i would sometimes not be organized to eat for long periods of time.
Edited: i said for sure earlier instead of consistently.
random facts:
i eat frequently. [when executive dysfunction does not prevent that.]
blood sugar issues can cause worse overall health / pene. but they don't always cause malaise or fatigue at that time [perhaps this exception is related to adrenaline or sympathetic ns].
i have gastroparesis.
ETA: i have orthostatic intolerance. [reference to next post.]
when i was ambulatory, in college age, i had the [paradoxical] sensation of low blood sugar after eating.
due to executive dysfunciton, i would sometimes not be organized to eat for long periods of time.
Edited: i said for sure earlier instead of consistently.
Last edited:
ahimsa
Senior Member (Voting Rights)
I hope it's not pedantic to say that it is not "fatigue" per se that gets worse after I eat a meal. That is, I don't get sleepy or any kind of tired feeling.
I do have more trouble with standing still, as well as with any type of exertion, after eating.
I have read (eg, in this document - http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf ) that this problem is due to orthostatic intolerance. The theory is that more blood gets diverted to the stomach and abdomen (splanchnic pooling) after eating.
See also this document https://emedicine.medscape.com/article/902155-overview
However, this theory may be incorrect. I don't have the energy or brain power to defend this theory. So take this statement with a grain of salt (pun intended!).
Edited: Of course, I can't solve this by simplly not eating. What I do is to make sure I always rest after eating a full meal (in the recliner, with my legs up). And I try to eat a small meal if ever I go out to eat lunch with friends (back in the days when we could go to restaurants).
I also skip dinner/supper quite often. An empty stomach (eg, last meal was at lunch time) improves my sleep. I know, this seems to be the total opposite of what a lot of people report. Many folks say they sleep better if they eat a snack before bedtime.
I do have more trouble with standing still, as well as with any type of exertion, after eating.
I have read (eg, in this document - http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf ) that this problem is due to orthostatic intolerance. The theory is that more blood gets diverted to the stomach and abdomen (splanchnic pooling) after eating.
See also this document https://emedicine.medscape.com/article/902155-overview
However, this theory may be incorrect. I don't have the energy or brain power to defend this theory. So take this statement with a grain of salt (pun intended!).
Edited: Of course, I can't solve this by simplly not eating. What I do is to make sure I always rest after eating a full meal (in the recliner, with my legs up). And I try to eat a small meal if ever I go out to eat lunch with friends (back in the days when we could go to restaurants).
I also skip dinner/supper quite often. An empty stomach (eg, last meal was at lunch time) improves my sleep. I know, this seems to be the total opposite of what a lot of people report. Many folks say they sleep better if they eat a snack before bedtime.
Last edited:
James Morris-Lent
Senior Member (Voting Rights)
I answered yes. When I was very severe I had to eat something every 2.5-3 hours or I would start to get shaky. Eating would relieve the worst of the symptoms. I suppose that's not necessarily 'fatigue' per se.
On the other hand, as I started to get really significant symptoms I would feel ill and drowsy after most meals. Unfortunately I had (have) a lot of food sensitivities as part of this thing.
On the other hand, as I started to get really significant symptoms I would feel ill and drowsy after most meals. Unfortunately I had (have) a lot of food sensitivities as part of this thing.
Invisible Woman
Senior Member (Voting Rights)
I can't answer the poll. Sometimes yes, sometimes no.
The better I am generally, the more resources I can input into meal planning. Ready meals and processed food do me no favours. Fresh fruit and veg take some prep.
If I am well enough to manage what I eat and when I eat it then food doesn't make my malaise worse (I agree with @ahimsa here - it's not a feeling I could describe as fatigue). If I don't eat little and often then I will feel very unwell & shaky - there is almost no margin between I might be peckish to if I don't eat right now my legs are going to go from under me.
Large meals, carb rich meal meals combining carbs and fat or a lot of protein will make me feel absolutely awful. Worse still, the more I rely in carb heavy food, the more I will crave carbs.
Then you have the food sensitivities issues as well.
My pick me up food wise would be a glass of water and a piece of fruit or a cup of decaff tea and a piece of dark chocolate eaten when seated, with my feet up. Sit quietly for at least 10-15 mins.
The better I am generally, the more resources I can input into meal planning. Ready meals and processed food do me no favours. Fresh fruit and veg take some prep.
If I am well enough to manage what I eat and when I eat it then food doesn't make my malaise worse (I agree with @ahimsa here - it's not a feeling I could describe as fatigue). If I don't eat little and often then I will feel very unwell & shaky - there is almost no margin between I might be peckish to if I don't eat right now my legs are going to go from under me.
Large meals, carb rich meal meals combining carbs and fat or a lot of protein will make me feel absolutely awful. Worse still, the more I rely in carb heavy food, the more I will crave carbs.
Then you have the food sensitivities issues as well.
My pick me up food wise would be a glass of water and a piece of fruit or a cup of decaff tea and a piece of dark chocolate eaten when seated, with my feet up. Sit quietly for at least 10-15 mins.
Hoopoe
Senior Member (Voting Rights)
I would like to explain my interest in this question.
It could be useful to divide patients into subgroups according to characteristics like their response to nutrients. When someone improves with eating, this could indicate that in their individual illness, there is a problem with energy production or utilization.
For example, genetic diseases involving mutations in genes involved in gluconeogenesis and glycogen storage can cause a predisposition to easily experience hypoglycemia when in a fasting state (as well as increased lactic acid). That means if someone doesn't tolerate fasting well that could indicate a disruption of the same biological pathways.
Fluge etc al for exampe reported that ME/CFS patients had an aminoacid serum profile, as well as increased expression of regulatory proteins consistent with impaired pyruvate dehydrogenase. That seems to be an intentional response by cells to something, rather than a mutation in a key enzyme.
There might be several "energy impairment" phenotypes in ME/CFS, depending on what processes are impaired. I recall a recent study that said the difference between severe and other ME/CFS cases might be due to both groups having some altered energy metabolism but the severe patients having also impaired glycolysis (that's how I remember it anyway).
As we can see from this poll, patients have different responses to eating (the worsening some report might be due to blood redistribution to the digestive system similar to blood pooling in POTS, or immune response to food).
I'm also awaiting my genetic analysis results in September and there is a chance I might actually have a genetic disease due to family history of not tolerating fasting well and having episodes of hypoglycemia when fasting. It's not clear to me why my development was normal until adolescence when problems suddenly appeared. Maybe there's a double hit, a genetic predisposition that doesn't become apparent until there's a second problem like ME/CFS affecting the same processes.
It could be useful to divide patients into subgroups according to characteristics like their response to nutrients. When someone improves with eating, this could indicate that in their individual illness, there is a problem with energy production or utilization.
For example, genetic diseases involving mutations in genes involved in gluconeogenesis and glycogen storage can cause a predisposition to easily experience hypoglycemia when in a fasting state (as well as increased lactic acid). That means if someone doesn't tolerate fasting well that could indicate a disruption of the same biological pathways.
Fluge etc al for exampe reported that ME/CFS patients had an aminoacid serum profile, as well as increased expression of regulatory proteins consistent with impaired pyruvate dehydrogenase. That seems to be an intentional response by cells to something, rather than a mutation in a key enzyme.
There might be several "energy impairment" phenotypes in ME/CFS, depending on what processes are impaired. I recall a recent study that said the difference between severe and other ME/CFS cases might be due to both groups having some altered energy metabolism but the severe patients having also impaired glycolysis (that's how I remember it anyway).
As we can see from this poll, patients have different responses to eating (the worsening some report might be due to blood redistribution to the digestive system similar to blood pooling in POTS, or immune response to food).
I'm also awaiting my genetic analysis results in September and there is a chance I might actually have a genetic disease due to family history of not tolerating fasting well and having episodes of hypoglycemia when fasting. It's not clear to me why my development was normal until adolescence when problems suddenly appeared. Maybe there's a double hit, a genetic predisposition that doesn't become apparent until there's a second problem like ME/CFS affecting the same processes.
Last edited:
JemPD
Senior Member (Voting Rights)
@strategist Sorry I didnt feel comfortable answering the poll because none of the 3 answers fit. I think eating often improves things slightly for me, but it's short lived & doesnt last. I wouldnt say the improvement was 'significant & lasted for some time', that's not accurate for me.
But it does make a slight & short lived difference.
The only exception to that is if i've been very anxious/angry 'adrenalined-up' & over-doing it - i often forget to eat when i'm like that - & when i do eventually eat it calms me down & then i feel the effects of the over-doing it - but thats not feeling worse after eating, thats feeling worse after calming down because the adrenaline that was performing as a stimulant & an analgesic, has worn off.... it's just that eating was part of that process.
But it does make a slight & short lived difference.
The only exception to that is if i've been very anxious/angry 'adrenalined-up' & over-doing it - i often forget to eat when i'm like that - & when i do eventually eat it calms me down & then i feel the effects of the over-doing it - but thats not feeling worse after eating, thats feeling worse after calming down because the adrenaline that was performing as a stimulant & an analgesic, has worn off.... it's just that eating was part of that process.
While answering yes, the actual response should be depends. When unable to function /pem a bag of peanuts and coke is a reviver within 15 minutes. But an evening meal often causes prompt retirement to bed with fatigue which is not the same as pem.
Of note is when taking picolax for colonoscopy or fasting increases energy almost to hypo status.
Of note is when taking picolax for colonoscopy or fasting increases energy almost to hypo status.
Agapanthus
Senior Member (Voting Rights)
I have ticked the first one but as JemPD said above, it's not quite accurate for me.
It depends on what 'significant and lasted some time' means. I used to feel a lot better when I had eaten breakfast in particular. and could feel that it had given me energy that I needed. I do feel on the whole that I need 3 meals a day, though at present I am getting up so late, that I could probably manage on 2.
I have a history of a lot of gut problems, many of whom I have improved if I can keep onto a sensible diet. Sometimes I overdose on chocolate/sugar and then I don't feel good for obvious reasons. If my diet is OK then my overall condition is more stable, but sadly I have a tendency to eat more and more unsuitable foods the worse I feel. I definitely have a message in my brain that says 'Eat! Eat! You need the energy!' (carbs/sugar)if I am feeling especially bad (mental and physical). I try to ignore the message but it doesn't always work.
It depends on what 'significant and lasted some time' means. I used to feel a lot better when I had eaten breakfast in particular. and could feel that it had given me energy that I needed. I do feel on the whole that I need 3 meals a day, though at present I am getting up so late, that I could probably manage on 2.
I have a history of a lot of gut problems, many of whom I have improved if I can keep onto a sensible diet. Sometimes I overdose on chocolate/sugar and then I don't feel good for obvious reasons. If my diet is OK then my overall condition is more stable, but sadly I have a tendency to eat more and more unsuitable foods the worse I feel. I definitely have a message in my brain that says 'Eat! Eat! You need the energy!' (carbs/sugar)if I am feeling especially bad (mental and physical). I try to ignore the message but it doesn't always work.
Invisible Woman
Senior Member (Voting Rights)
When it comes to fasting & skipping meals - IBS issues aside
Pre ME I could easily skip meals here and there. It happened quite often and work when I became interested or engrossed in something I just didn't notice. Then I would just feel hungry & go and eat. After I'd eaten I felt fine and just carried on...well, I might have had a quick smoke back in the day.
In the early days of ME - different story. I had to stop and have something to eat very regularly. If i didn't then I would very quickly feel very unwell, get the shakes, become clumsy, light headed, very irritable, killer headache & unable to think straight. If I didn't eat something quickly enough the symptoms stuck around even after eating.
The snag was that when I got to that state I needed and wanted something fast - carbs and caffeine. Vicious circle because that set me up for another bout of going from I should eat soon to needing to eat right now.
I find I cope a lot better if I stay ahead of hunger and away from sugar and refined carbs - though these days I can get away with a treat. Not every day though.
Pre ME I could easily skip meals here and there. It happened quite often and work when I became interested or engrossed in something I just didn't notice. Then I would just feel hungry & go and eat. After I'd eaten I felt fine and just carried on...well, I might have had a quick smoke back in the day.
In the early days of ME - different story. I had to stop and have something to eat very regularly. If i didn't then I would very quickly feel very unwell, get the shakes, become clumsy, light headed, very irritable, killer headache & unable to think straight. If I didn't eat something quickly enough the symptoms stuck around even after eating.
The snag was that when I got to that state I needed and wanted something fast - carbs and caffeine. Vicious circle because that set me up for another bout of going from I should eat soon to needing to eat right now.
I find I cope a lot better if I stay ahead of hunger and away from sugar and refined carbs - though these days I can get away with a treat. Not every day though.
wdb
Senior Member (Voting Rights)
I'm another one in the depends on the food camp, a heavy meal like fish and chips would usually make me more prone to fatigue whilst it is digesting away whereas a light easy to digest meal like a bowl of breakfast cereal might perk me up a bit and make me less prone to fatigue for a while.
Samuel
Senior Member (Voting Rights)
the colonoscopy/gastroscopy prep i did in early 2000s made my bowels quiescent for the first time in 20-30 years. it also reduced mold [a bunch of symptoms] / allergy symptoms significantly. it also reduced fatigue significantly.
this lasted for a few days. the effect size was large. never had any fluctuation that was anywhere close.
this seems to me to be potentially diagnostic of something and/or a good vein of biomedical research.
Last edited:
ahimsa
Senior Member (Voting Rights)
I hope I did not overstate the effect of having a full stomach vs. so many of my other symptoms that are disabling!
I have found this one small pattern about eating. It's more difficult for me to do things on a full stomach vs. an empty stomach.
But it's only one of MANY variables.
Eating/not eating is a much smaller factor than having had a bad nights sleep, being in the middle of a PEM "crash" from overexertion, trying to do things when it's hot (for me "too hot" means more than 72-73 degrees Fahrenheit/22 degrees Celsius), forgetting to take my midodrine, etc, etc.
Knowing this pattern about eating is not a huge help, but at least now I know that I should rest after a meal.
I have found this one small pattern about eating. It's more difficult for me to do things on a full stomach vs. an empty stomach.
But it's only one of MANY variables.
Eating/not eating is a much smaller factor than having had a bad nights sleep, being in the middle of a PEM "crash" from overexertion, trying to do things when it's hot (for me "too hot" means more than 72-73 degrees Fahrenheit/22 degrees Celsius), forgetting to take my midodrine, etc, etc.
Knowing this pattern about eating is not a huge help, but at least now I know that I should rest after a meal.