Good nutrition when energy is very low

Thread split from NICE ME/CFS guideline - draft published for consultation - 10th November 2020

This is a really important subject, which isn't addressed nearly often enough. If you live on your own it's incredibly difficult, specially as you don't have the energy to socialise.

Diabetes obviously makes it complicated, but it's hard enough even when you haven't got that issue. I too love nuts, but could neither chew nor digest them when I'm really badly crashed.

Fortunately it hasn't happened for a long while, but I used to favour chocolate digestive biscuits and cold milk. Partly because they fill you up quite well, and partly because they can be bought almost anywhere, meaning it's easy to ask people to get supplies for you. At my worst I've even resorted to asking random children playing on the street, on the grounds that they're easy to bribe with a couple of quid for sweets, and unlike friends and colleagues, they don't insist on half an hour of chit-chat on delivery!

I couldn't even rely on this diet now, as I developed lactose intolerance a few years back...

 

I wonder if people with mild / moderate ME could also benefit from nutritional drinks like Ensure prescribed on the NHS (by a dietician?), not just those with severe or very severe ME? They have lactose free ones as well, as well as ones without as much sugar. I’ve always had to buy my own, and they can get expensive - I’ve never had them prescribed for me - but they could be helpful perhaps even for milder ME patients when in a crash.

 

I'm looking into Huel. Will let you know how i get on if i try it

 

Do they keep long, @lunarainbows? I hopefully won't need them so much now I'm not killing myself trying to work, but part of the problem was always that the crashes were often associated with viruses, so they were impossible to plan for. I might go a year or more without a really bad one, and then wallop! – all of a sudden I'd be on my knees. Unless foodstuffs have a very long expiry date on them or can go in the freezer, it's difficult to keep them in stock.

That's the beauty of the chocolate biccies and milk diet. You can get it anywhere, and you can choose a moment when you have the energy to ask a passing eight-year-old to fetch it for you...rather than having to wait for an internet delivery, which of course arrives on a day when you really, really can't get to the door to take delivery of it!

 

From what I remember there were 9-10 months till the expiry date when I last got some - probably not more than a year. I think that’s similar for other nutritional drinks too. I googled it & ensure can be kept in the freezer though - so that probably prolongs it’s life by quite a lot, although not sure how much exactly. I have to admit compared to drinking milk, which I find delicious, the nutritional drinks /ensure can taste quite strong. Because of all the vitamins and things they add to it - they then need to add flavourings to hide that taste. The chocolate one and vanilla one (and strawberry I think) is nice though.

 

My friend gets a prescription through a hospital dietician, I think, who is part of her gastro team. She doesn’t have ME though.

I’m still trying to find a good meal replacement / nutritional drink that I really like. There used to be a company called Bam, which had wonderful tasting milk drinks, with milk protein and honey and natural flavourings - nothing tasted too strong or artificial. I used to be able to drink them all day every day and wouldn’t feel sick of them. The vanilla one tasted like ice cream. Then they closed down earlier this year; and left a void.

I do have a stock of ensure but haven’t been able to have much of it recently due to its fat content making me unwell. It’s also too strong/rich/filling to have too often for me, so wouldn’t be able to have it 3 times a day. Similar issue with the other similar nutri drinks.

I tried Weetabix breakfast drinks - although they are filling, they don’t have a lot of nutrients and also the taste makes me feel sick after a while. They’re not really a proper meal replacement either. Ensure juice plus is like drinking sugar water.

Interested in huel too - the oats based one, once I can start having more fat again - but need to check it doesn’t have flaxseed. I can’t tolerate a lot of the “healthy” nutritional drinks as they tend to have flaxseed or nut based things in them, which my stomach can’t tolerate. We have milk protein and flavoured milk protein at hone which my mum sometimes makes up with milk. I’ve seen that Ensure have a powder that can also be mixed up with milk.

Im always on the lookout for milk based drinks that are nutritious and that aren’t too sweet / don’t make me feel nauseous.

in an effort to get a bit of fruit, if I’m too ill to eat properly, I have baby food out of sachets. The fruit ones. They don’t have a lot of calories though so can’t be relied upon.

 

At her worst, my caree was prescribed Fortisip - and now has a major problem with them because of the associations. They can be bought at a chemist's, but it can be difficult to get them prescribed, because apparently they can be exchanged for drugs on the black market. Can't remember the logic of that at the moment, but it does exist.

 

Ensure is sugary glop. That would be a way to insure sickness not health ;-).

A case of canned chicken and some dried spices to throw on it is a much better bet. Have some frozen vegetables around in addition, Unless you are actually a cat and can subsist on only the chicken.

That won’t be fine dining, but it won’t be awful after some spices, and it doesn’t taste so great that one will overeat. That’s my two cents, fwiw (Which may be more or less than two cents).

 

Unfortunately things like ensure may be the only thing that some severe ME patients can tolerate. I have lived for months at a time, or even possibly over a year, broken up by better days, just on those liquid milk foods plus fruit purées. Also some people with severe ME cannot digest / tolerate things like chicken, turkey etc - I can’t eat it. Ensure has sugar, because glucose gives a lot of energy and calories to patients who are very ill and cannot tolerate much or any solid or more substantial food.

 

Yes, and the same person can have different digestive abilities at different times. I know that when I get worse I start losing their ability to digest normal food. When that happens I’m too weak to go shopping and typically can’t think clearly enough to figure out that I should get some soup. I’m sort of surprised that very sick adults can digest milk, I thought the ability to handle it decreased after around age 21.

 

I go to basic whole foods when too sick, unless I get into a crazy mood and order home delivered pizza which I always regret. Cheese is my basic protein source. Slice, eat. I also eat raw (but rinsed) vegetables. I especially like my capsiapple. (That is a capsicum or bell pepper eaten like an apple.) Berries of all kinds, and I include grapes in that, are great for high nutrition for their relatively low sugar content. Canned or frozen food often needs a tiny amount of preparation and I am not always up to that. Some of it really needs to be heated, so even more preparation. I try to avoid instant packet soup as its basically just startch and flavouring with extremely low vitamin and mineral content. If I am a bit more capable I might try natural peanut butter (full ingredient list - peanuts, sometimes salt and water depending on the brand) on a couple of slices of gluten free bread. Being Australian I sometimes eat vegemite instead of peanut butter. While I rarely have any to hand, some rice crackers with cream cheese often work. Open and eat is the aim for me, and I try to make sure what I open and eat supplies needed nutrients.

Fortunately I have gone from needing more than 60 emergency meals a month to a handful a month over the last year and a bit. It still happens though.

 

Glucose gives energy but if there is a gylcoysis issue ,as seems to be indicated by some research, then glucose may cause other issues ?

 

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.

 

Regarding glucose, I find it interesting that oral rehydration solutions that contain glucose seem to help some of my symptoms a little bit (mainly OI), while those without glucose don't seem to work.

 

It's a great idea in theory, but I couldn't manage that when I was really ill. I was only mild/moderate, too.

I couldn't even sit up for more than a few seconds, only prop myself up on pillows, so food had to be prepared and eaten in bed. I used to chill milk and butter in a little beer fridge next to the bed, and biscuits and rice cakes were in plastic food bags to keep them clean and fresh. Fortunately, I usually got enough notice of a big relapse to ask for help to set up my collapse kit whilst I was still able to tolerate another person being in the house.

I also needed food I could digest. I like chicken and have no difficulty eating it normally, but meat or cheese would give me abdominal pain for eight to 12 hours when I was ill. High GI, easy-to-chew carbs were by far the easiest to digest. A small amount of milk helped fill me up a bit, but I needed to drink it along with a good dose of carbs, never on its own.

My relapses were measured in months, not years, so I didn't need to worry too much about nutrition – I could always compensate by eating better when I was starting to recover a bit. It must be an enormous problem for people who live like this all the time, though, and it makes me furious that they can't access help with it.

 

I'm fortunate in that I am usually well enough to cook a simple meal. But when I'm not I find the following useful (they're all things you can prepare/keep in stock for use in an emergency):

Frozen individual packs of slices of the bread I find most digestible. I take them out of the freezer the night before use.
Tinned sardines
Tinned fruit
Cheese (keeps quite a long time in fridge)
Small tins of beans that don't need cooking (there are various types you can get).