Good nutrition when energy is very low

My emergency foods are dark chocolate - at least 70% - I always have a bar of it in my bedside drawer (not on top as it is extremely poisonous to dogs). Very high in nutrients even if I can only have a small amount at a time.

Dark choc digestives - combo of an instant boost from.the biscuit with the fat from chocolate slowing the sugar hit.

Bananas - if I have to go to an appointment or be in the car and start to feel funny then a banana does give a boost though I'm not that keen on them and can only bear them when they are just barely ripe.

I have to eat protein at least twice a day to avoid feeling ill. If I don't have protein I find myself craving carbs. However protein that is also fatty, like cheese which I adore, will cause my digestive system grief and trigger stomach pain, especially if I add carbs.

The sort of emergency, high nutrition bars that contain wholegrain, nuts and seeds will cause stomach pain that goes on for hours. Quite irritating as they'd be very handy.

Liquids -
Water - sips of plain water as my stomach simply cannot cope with carbonated stuff.

Milk is a problem for me. It seems bulkier in my stomach so I can have a little skim milk in my tea but milky drinks are a problem - even delicious ones like hot chocolate.

Liquid in any great volume causes my stomach to puff up and become painful - I mean the actual organ & not the abdomen. I can actually see it distend. So while Ensure or other liquid foods might be very helpful for some and should be available to them, it wouldn't be right for me.

I don't know whether my gastric issues are related to my ME or not. I had some gastric issues before I became ill with me but in the last 10 years or so developed new ones. I have a sneaking suspicion these new gastric issues are a symptom of how ME affects me.
 
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I've been off dairy, wheat and chocolate for years because of migraines and digestive issues well before ME.

So my emergency stash is plain rice cakes and individual cartons of strawberry flavoured soya milk. And water of course. I keep a litre of water by my bed to refill my 'granny mug' with a lid and straw.

If I can get out of bed, the next stage is bananas, vegetable soup, tahini on rice cakes, puffed rice cereal, soya yoghurt and raisins.
 
It is so frustrating that virtually no one is developing a cumulative expertise or examples of good practice, in relation to the various aspects of ME.

Food and diet are good examples of this failure.

Certainly in relation to nutrition and diet, no one here in the UK is systematically looking at what people find helpful and what they don’t or developing lists of potential food stuffs and commercial products that might be useful, etc.

The specialist ME/CFS services in the UK on average have been around for some twenty years but have completely failed us on so many issues, nutrition being a big one. I guess this is partly because they were established on the basis of ME being a psychological condition or at least a condition best treated with psychological and behavioural interventions and generally ignored severe ME, so they have ignored much of the reality of life as experienced by people with ME. However just think how much useful information could have been accumulated, codified and shared in those twenty years. This thread illustrates what potentially could be achieved.

Are we in a position to start collating our own experiences relating to food and nutritional issues in ME? Here is my first thoughts on how to start organising information:

  1. ongoing food intolerances/sensitivity issues
  2. dealing with food with little or no carer support
  3. getting sufficient/appropriate food/nutrition when any physical activity severely limited, including chewing and swallowing
  4. issues relating to the digestive process
 
Each section would then have sub sections

eg
3 getting sufficient/appropriate food/nutrition when any physical activity severely limited, including chewing and swallowing

(Note these are not meant to be fixed groupings as most people will be dealing with mixed needs depending on current energy levels and crashes. Appendices could be added to list food ideas and to list by country commercial products.)
  • able to prepare simple meals
  • able to open packaging/ microwave pre prepared food
  • no food preparation possible but can deal with opening packaging and plating
  • accessing food/drink lying down when minimal packaging
  • food requiring minimal chewing
  • entral feeding, ie food going through tube straight into stomach, etc. This does not mean no oral feeding, but oral feeding is not essential to maintain nutrition.
 
I don't have any problems with digesting food, however, I get terrible, terrible cravings for sugar when in PEM. The interesting thing is that I can eat much less in PEM, my appetite really drops. But I still crave something sweet, usually small biscuits/cookies and I can totally overdose on those.

Which is probably not that great for my overall health, so I'm trying to trick my body by drinking fruit-flavoured tea with artificial sweeteners as a "substitute". It often works but I have to admit I still give in from time to time, because the cravings can be so bad in PEM.
 
My daughter has constant nausea but does manage to eat .luckily she dosnt have to make food. Most days she would be limited to microwaving something / getting prepped salad combos out of fridge; but that trip from bedroom may only be viable once or maybe twice - no energy to actually cook stuff from scratch. Some days it just dosnt work out.

When PEM kicks in the protein shake ratio goes up but also being a chocoholic she finds she tolerates homemade " goop"
This is a ganache made with a mixture of coconut milk heated and infused with ginger and then poured onto dark chocolate to melt it. No sugar needed as coconut milk is sweet enough. 3 parts chocolate to 4 parts coconut milk gives a soft set.
Keep in fridge for a week .
We used to make vegan truffles with this but to be honest it's just as good on a spoon !

Recent trial run of home made reece' s cup equivalents got thumbs up.
Again dark chocolate melted and mixed with a wee bit of peanut butter .( 125g chocolate to 1.5 tablespoons nut butter) Spoon half into wee paper / silicon mini cupcake moulds and freeze 20 mins.
Add a wee bit of nut butter of choice and top with remaining melted chocolate mixture.
Freeze again then turn out of mould. Store in fridge for 4to5 days . Not tried but you could probably freeze and then suck them to death . They are quite dry though so make sure you have plenty to drink.on hand.

You don't need much of these to get some sustenance to keep going for a bit longer.

ETA for gloop . Proportions are 280g chocolate to a standard can of coconut milk .brain not up to arithmetic today.
 
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Wyva said:
I don't have any problems with digesting food, however, I get terrible, terrible cravings for sugar when in PEM. The interesting thing is that I can eat much less in PEM, my appetite really drops. But I still crave something sweet, usually small biscuits/cookies and I can totally overdose on those.

Which is probably not that great for my overall health, so I'm trying to trick my body by drinking fruit-flavoured tea with artificial sweeteners as a "substitute". It often works but I have to admit I still give in from time to time, because the cravings can be so bad in PEM.
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I do wonder about MAO and dopamine modulating sugar in crashes. Or just when tired.

Given that dopsmine modulators seem to help some people it may be worth looking into?
 
Midnattsol said:
As far as I know there's no evidence of increased blood glucose levels in pwME, so it doesn't seem like our cells does not take up glucose for glycolysis.
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Even diabetics take up lots of glucose. The glucose levels in diabetic muscle cells are redonkulous (technical word ;-)). What is taken up and what is used are two different things, though I expect at least a weak correlation. So has anyone checked glucose concentrations inside our muscle cells? I am not aware this has happened.

The escape valve for glucose in pwME is the lactate shunt. We push activity and we activate the shunt. However it is unknown what this does to the liver and other organs. I am also aware there is something we do not fully understand here or we would be regularly dying from lactic acidosis. We aren't. There are possibilities as to why, but that is for another thread.
 
alex3619 said:
Even diabetics take up lots of glucose. The glucose levels in diabetic muscle cells are redonkulous (technical word ;-)). What is taken up and what is used are two different things, though I expect at least a weak correlation. So has anyone checked glucose concentrations inside our muscle cells? I am not aware this has happened.

The escape valve for glucose in pwME is the lactate shunt. We push activity and we activate the shunt. However it is unknown what this does to the liver and other organs. I am also aware there is something we do not fully understand here or we would be regularly dying from lactic acidosis. We aren't. There are possibilities as to why, but that is for another thread.
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Has insulin resistance been looked at? Perhaps with something like a kraft assay as this takes measurements over time?

Insulin resistance seems to underlie quite a few things.
 
lunarainbows said:
It could do but is there research saying glucose is actually bad for patients with ME, or even could be harmful? All I remember is issues with pathways and some people then saying that means protein is better - but I’ve always struggled with eating protein, and I’ve seen accounts of Pw very severe ME who also have become very unwell when forcing themselves to eat protein rich / other foods. So it can’t be true for everyone. Something might also be better at a metabolic level - but then there’s the issue of digestion, nausea, it going directly into our stomach - so can we tolerate it as food? When I’m most ill, and I know this is true for other PwME who have relied on Ensure, Fortisip, other milk or water based drinks like this, that’s pretty much all they can cope with sometimes. For me, milk based drinks give me energy, and If I try to keep eating normal, or healthy/whole foods at those times, I lose weight far too quickly because I can eat so little.
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Different sources of proteins have different digestability though. Barring a problem with lactose or milk protein, milk should be easy enough to digest. With meat, fish and chicken are easier to digest than pork or other red meats. Lean cuts are easier to digest than fatty ones (at the expense of less energy), boiled or oven baked at low temperature is easier to digest than fried. Depending on why digestion doesn't work, there are certain aids that could be used, such as stomach acid capsules or digestive enzymes. So much I hope we will know about the best care for pwME in the future :)

Small meals are also generally better digested, and small but frequent meals are recommended both for bad digestion and for nausea.

General advice with digestion issues, in no particular order:
  • Eat small, but frequent meals
  • Lean proteins are easier to digest than protein with fat. Fish and chicken are more easy to digest than pork and other red meats.
  • Animal protein that is boiled or oven baked at low temperature is easier to digest than fried or otherwise treated at high temperature (avoid creating a crust)
  • Dairy is a good source of protein and other nutrients, but beware of lactose intolerance
  • Vegetables and fruits are easier to digest when they are cooked and pureed
  • Dry foods such as crisp bread is easier to digest than dinner-type foods
  • Avoid foods that are known to create bloating, such as beans and onions (this will for some mean to avoid many foods that contain fermentable sugars, read up on FODMAPs)
  • Medium-chain-triglycerides (MCT) is a source of fat that is easier to digest than others, it can be bought to be used as a supplement for extra energy, but it's also possible to find premade nutrient drinks with MCT
  • Avoid/reduce intake of strong spices, acidic foods, smoked/cured foods, very sweet foods, alcohol, some also struggle with non-sugar sweeteners
  • With nausea, cold meals can be easier than hot meals
Edit: Forgot to add that certain foods, such as onion, chocolate, fatty/spicy/acidic foods and peppermint can slow stomach emptying which is also a problem for some.
 
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alex3619 said:
Even diabetics take up lots of glucose. The glucose levels in diabetic muscle cells are redonkulous (technical word ;-)). What is taken up and what is used are two different things, though I expect at least a weak correlation. So has anyone checked glucose concentrations inside our muscle cells? I am not aware this has happened.

The escape valve for glucose in pwME is the lactate shunt. We push activity and we activate the shunt. However it is unknown what this does to the liver and other organs. I am also aware there is something we do not fully understand here or we would be regularly dying from lactic acidosis. We aren't. There are possibilities as to why, but that is for another thread.
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I'm not sure I'm understanding you. With diabetes we typically talk about either not having enough insulin to get glucose into the cells, or insulin resistance so that even when there is insulin present the cells still don't take in enough glucose. The problem in both cases is geting glucose out of the blood and into the cells, not using the glucose once it's inside the cell.

Checking concentration of anything inside cells is difficult (but I dream of the day we can do this in an efficient manner, it would be great for nutrition as a field).

We might be used to different terminology, "lactate shunt"? Are you referring to pyruvate being turned into lactate instead of acetyl-CoA and entering the krebs cycle?
 
Midnattsol said:
The problem in both cases is geting glucose out of the blood and into the cells, not using the glucose once it's inside the cell.
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I am talking type 2 diabetes. This does not apply to type 1 diabetes. I should have been more clear. Intracellular concentrations of glucose in muscle cells are typically 3x that of healthy people. Blood glucose can damage tissues vulnerable to it, and I suspect the most vulnerable are nerves and kidneys, but its a huge mistake to presume that intracellular glucose is safe. We might indeed have special intracelullar defences but I am very unsure about that.

Type 2 diabetics cannot properly use the glucose in muscle cells. I have not looked into other tissues. Once you start thinking about glucose gradients, then at least a part of insulin resistance is likely to be its hard to force glucose into cells in which the cell concentrations are super high. Now I have not seen an investigation of this issue, so there might be surprises for me there. Or it may have simply been ignored. I also think its likely that some cell types do not have high concentrations of glucose inside them.

I am a type 2 diabetic as well as having ME and I am too well aware that a lot of the research in this area is borderline or dodgy. We have had decades of research of optimizing certain types of treatment, with some results. For example, I have little doubt that for most people, most of the time, the current dietary advice is much better than ignoring it. I am also aware that things improve much more, and faster, with two other strategies, fasting and low carb diets. The information around both of these is largely being ignored, and its definitely not being backed by big Pharma. Both treatments are free. They can also be combined. Free. These are not the only two options, but the high carb with exogenous insulin as the last defence is clearly suboptimal.

This really belongs in a different thread. The issue in this thread is what is good to eat in ME when you are struggling, and how we have found our own solutions that might help others.
 
alex3619 said:
This really belongs in a different thread. The issue in this thread is what is good to eat in ME when you are struggling, and how we have found our own solutions that might help others.
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It is however in my case relevant - as my dietary 'preferences' switch to high simple carb foods when in PEM, with virtually all other foods tasting fowl and sometimes unswallowable, even if I can coordinate
choosing, organisation and preparation.

Soups/broths, salads, green veg (all veg but green veg is particularly vile), fruit and when it's bad bad even my own homemade bread - all do not get eaten if there is literally any other option. I would 'rather' shove something in the airfryer (which takes 30-40 minutes to cook) than make a sandwich (which doesn't) - which is 'odd' (for me).

So the whole issue of blood glucose and how it's affected by my 'choices' is directly relevant to me when I'm in PEM.

I need food which is simple, preferably instant (or at least no work), filling and sustaining, actually edible to me when in PEM (doesn't have to taste good, just not be 'rejected' when I take a bite) and.....not cause BG spikes.

As far as I can tell such a food does not exist - tried a lot lol.
 
Wonko said:
I need food which is simple, preferably instant (or at least no work), filling and sustaining, actually edible to me when in PEM (doesn't have to taste good, just not be 'rejected' when I take a bite) and.....not cause BG spikes.
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Many of us have issues with conflicting needs in diet. I love spices, sometimes I feel better eating them, and sometimes worse.

I suspect many of us have issues with digestion, even before the nutrients hit the blood stream, or even go through the liver. We seem to have altered gut biomes, and I have talked with many pwME who cannot tolerate a great many foods. Sometimes its a worry as I am concerned they may not be able to get enough useful nutrition. That is a real risk in my view.

High glycemic carbs have a huge advantage in that they are almost instantly digested, then absorbed. This raises blood glucose of course, and can raise it a lot. How long it remains raised is more complicated, and usually when raised for a long time is a result of insulin resitance.

If you look at traditional diets around the world and diabetes risk, and carbs, very unprocessed starches seem to have a very low risk. Fibre and other factors modify how they are used by the body.

Refined sugar and high fructose corn syrup are something else entirely. The long standing advice for diabetics is to go for low glycemic carbs. This can work, but my current view is its often a mistake. Fructose is an example of what I think should be called an essential carb, and is low glycemic. Its a pentose sugar with an absolute requirement for many roles, including DNA repair. However there is plenty of data, from studies to historical changes, that suggests is very bad news in quantity. Its the main carb I try to avoid, and one of the two basic carbohydrates in sucrose or table sugar. Traditional diets with starches deliver enormous amounts of glucose, with an exception for areas that eat a lot of grains like corn, yet do not have much of a diabetes risk. When sugar enters the diet the diabetes risk goes way up. Fructose is a known inducer of visceral fat. Glucose does not do this much if at all.

Visceral fat is an entirely different topic, and it releases inflammatory cytokines, so I think it should be investigated in ME just to be sure its not an issue. Most people seem to think that lots of visceral fat is in a large midsection, lots of central fat. I think this is most likely just an association, though a strong one. Huge numbers with almost no central adiposity, such as in Japan, have high visceral fat. Also in Japan you have Sumo wrestlers, who while technically obese do not have many diabetes related risk factors, though I am unaware of a study on visceral fat in them (but have not looked either).

The two things I primarily avoid are firstly fructose, and secondly trans fats. Trans fats are bad news. There is research going back decades on various things they do. These fats are usually made from high temperature processing of omega-6 fats, and why many are told they should be eating only cold processed omega-6 fats. I do not eat much omega-6 though because it can cause issues for me, but I always try to eat some.

All of this is in part why I eat simple unprocessed foods when in a crash, though again I fall prey to pizza at least once a year. Its delivered, I only need the energy to order and open the door. After a prolonged period without eating, the pizza starts to sound good again. Then I feel sick for at least a day. (sigh)

Many natural unprocessed foods are unpalatable though. They need cooking. So the energy requirement is high. Some of us have trouble digesting many foods, especially in a crash. While some foods may be less than ideal in a crash, sometimes we have to compromise. The real question is about whether or not lower quality food is better than not eating at all. For anyone very underweight, as many pwME are, not eating is much more likely to be the bigger problem.

The three things I go for in a crash are unprocessed carbs, protein, and fat. As a community I think we have a range of tolerances though, so I am not convinced there is one diet fits all. Heck, I don't think that for the general public or diabetics either.
 
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Midnattsol said:
We might be used to different terminology, "lactate shunt"? Are you referring to pyruvate being turned into lactate instead of acetyl-CoA and entering the krebs cycle?
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I answered this earlier but I had connection problems. Yes, and I know it has other names, but people focusing on the lactate often call it the lactate shunt.

If anyone knows what this is doing to the liver in pwME I would really like to hear about it.
 
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