How I lost 70 lb / 32 kg / 5 st while ill with (severe) ME/CFS

(This is an updated version of something I wrote in July 2017)

I am fortunate to have managed to get my BMI down to a healthy 21.7 by losing 70 lb / 32kg / 5 stone while ill with severe ME/CFS. (I hope to lose a bit more again: I feel I have the habits now to be able to do that slowly, without it being too demanding).

It took me nearly 4 years so I didn't break any records.

I thought I would share some techniques I used to lose the weight as a few people did ask me.
Note that I am not qualified to give medical or health advice. Also there are lots of other ways to lose weight.

I'm not saying that this will work for everyone as people can be in different circumstances to me. Also it probably takes a certain frame of mind to lose weight so I'm not going to tell everyone to lose weight. I was overweight for around a decade before I set my mind to it. (I gradually put up weight over a decade without trying to lose it during that period). Being ill, particularly severely ill, with this illness is tough.

Anyway here's what I did, for what it is worth. I might add to these points if others occur to me.

[Like most people in Ireland, I use "calorie" when I really mean kilocalorie. So when I say 1 calorie, I mean 4.184 kilojoule]
Use time restricted eating (e.g. skip breakfast)

I find I can survive for a few hours after getting up without eating. I tend to eat late at night as that's when I feel my worst in terms of pain, malaise, etc. Some experts say fasting like this/time restricted eating can even be useful/healthy. For a lot of the time, I used (most days) the 16/8 approach (i.e. just eat within a window of 8 hours and fast for 16 hours) but I have relaxed that recently i.e. I eat for more than 8 hours.

Not for everyone, but helped me cut out calories.
Carry round a flask of herbal/fruit-flavoured tea, as well as water.

Drinking helps distract me from eating. Also I try to drink while eating to make the food/eating last longer.
Reduce calories that are drunk.

I haven't drunk any calories during this period, except for the small amount that is in herbal/fruit-flavoured tea. Your body supposedly doesn't recognise calories that have been drunk. So if you eat calories, later in the day you will feel more full but if you drink calories, you will eat as much later as if you never consumed the calories.

You wouldn't have to do this completely to use the principle i.e. just drink fewer calories.
Weighing a lot of the food/counting calories

Weighing food and counting calories are boring I know but allow me to have all sorts of food including some treats.

These help give me a good idea how many calories I have consumed. If I know I'm not starving myself, I then can feel confident that I don't need to eat and ignore the feeling. A lot of my eating was out of habit rather than my needing the calories. I feel ill in various ways and in pain a lot of the time so find it difficult to judge when I am hungry. I'm also on a drug that can cause increased appetite and weight gain.

My guess is some people are too strict with themselves when they count calories. You don't need to have a very low calorie count to lose weight and you probably shouldn't be too hard on yourself if you don't reach low calorie targets. If one cut out 100 calories and did it for 300 days that will be 30,000 calories, which would result in a bit of weight loss. 300 calories a day for 300 days a year would be 90,000 calories, which would be a significant weight loss.

[Aside: it is only recently that I have started counting calories. Previously I had my own units system, where I broke things down to 50-60 calorie units and counted in my head how many of them I ate a day, except for foods I ate every day which were not counted (similarly I didn't count calories/units from my dinner even though in reality it would fluctuate)
Reducing portion sizes.

This is related to weighing food and calorie counting (i.e. 4) but involves another point also. For example initially I weighed out 25 g portions of nuts. Then over time I wanted to lose weight quicker so I decreased the portion sizes to 20 g and now 18g. Another item I reduced the quantity of was the number of grapes I have.

If you get to eat the food rather than remove it completely it doesn't seem so bad and you can get used to smaller portion sizes, I find. One person I talked to recently found cake was her weakness so she allows herself some cake if out at a party (say) just not a full portion.
Allow myself sweet treats most days

For years I had a sugar-free diet. But I feel I may have been too strict on myself and lost motivation. So now I allow myself a sweet treat every day or virtually every day at the end of the day.

I generally keep sweet treats to the end of the day. So if somebody brought in something nice to the house, I would keep it till the end of the day.

I try to savour it as much as possible by cutting it up into pretty much the smallest pieces I can cut it into.

My treats have got a bit healthier. I used to eat some ice cream and/or some milk chocolate, but I have changed that recently to yoghurts with a little sugar or sweetener and dark chocolate (85%/78%/70%). Previously, I found 20 g bars of flake (those are in the multipack; individually bought ones are 30g) great as a way to slowly eat something sweet: I would stand on the unopened packet to squash them and then pour out small amounts and pick them up with my fingers.
Have lots of smaller meals and snacks.

I reduced the size of my main meal. This freed me up to have more calories across the rest of the day. Also generally I try to have relatively small portions so that I can have more snacks.

If I want to lose weight a bit quicker, I have no full dinner, just lots of small meals.
Weighing myself regularly.

I think not weighing myself was a big reason I put up so much weight. Weighing yourself gives feedback whether you are doing something right or wrong. It's a bit easier for men I think as our weight doesn't fluctuate across the month so women may have to keep a longer track to see patterns. I have a weighing scales that gives weight broken down by 0.2lb (90g) so generally (when I had a lot of weight to lose) if I have stuck to my aim for the diet or something close to it, I registered a loss most weeks even if it was not huge [in more recent times the weight loss has been slower but now that I am down at a healthy weight. I don't get too frustrated]. If I put on weight I can usually quickly work out why I did.

By weighing myself, I can celebrate even small weight losses. Waiting for clothes to fit differently would take much longer and I feel it might be easier to lose motivation.
I try not to eat in some rooms/places.

One of the reasons I think I eat is because I am bored. So I allow myself to eat in places where I can get bored. So when I am on the computer I don't get bored so I don't let myself eat there. I also like being outside so try to avoid eating outside. Clocking up hours when I am not eating means I am less likely to eat too much in total.
Break habits slowly/don't try to make all the changes in one go:

I think it may have helped me that I didn't try to have a near perfect diet straightaway. Indeed I only lost 8lb/3.5 kg in the first 8 or 9 months even though I was quite overweight and had plenty of weight to lose. I did break some habits in that time, which stood to me, e.g. I used to eat a lot of (generally savoury) leftovers.

When I wasn't losing weight as quickly as I wanted I then made other changes. I probably would have found it quite hard to break all the habits in one go. After you break a habit and stick to it for a period, it doesn't take much willpower to maintain the habit.

I was worried that I might reach a "weight loss plateau" where I didn't lose weight. However, I haven't reached any such plateau; I have lost weight consistently, even if it has generally been relatively slowly. I have read conflicting information on whether such a weight loss plateau exists in the average person. It does seem to affect people who've had bariatric surgery most of whom don't get back to a normal weight but they are an extreme example. Perhaps losing weight slowly reduces the chances of having to deal with a weight loss plateau.
Cutting out some items altogether:

I don't know how relevant or necessary this is but I did do it previously: I put on a lot of weight previously despite being on a sugar-free diet. I realised that muesli with milk was my weakness (I sometimes had 3 bowls in a day) so I cut that out and have now stayed off it for more than 20 years. I have also cut out milk chocolate and ice cream for the last 5 months, but that might not be permanent.
Avoiding calorie-dense food:

I like to distract myself by eating. You can do more eating if the food doesn't have many calories. So I have ended up eating quite a lot of foods (e.g. vegetables) partly for this reason, and partly because they are healthy. I don't think you have to do this to lose weight, but I'm just listing what I did.
What I eat now (*optional* reading)

My diet has gradually become healthier. For example, I have reduced my intake of red meat quite a lot. This wasn't the priority for me in the earlier days, but I have now been able to do it I think partly because I didn't try to make too many changes in one go (I also became more knowledgeable about the problems red meat can cause on average which increased my motivation).

These are the sorts of food I eat now on a daily basis. They have changed a bit over the years. I hope people don't just read this section as the specifics of the food I eat I don't think are as important as the general principles I mention above.

A lot of these are 50-60 calories or 100-120 calories because as I mentioned above I had my own calorie system, where 50-60 calories was one of my units: I think it is useful to be careful about portion sizes, but they don't have to be the same size as the ones I use.

- 3 or 4 items of fruit (incl. generally small- or medium-sized apples as they have fewer calories than larger ones)

- (x2) 100g of 0% fat yoghurt (unsweetened) or 80g of 2% fat yoghurt (unsweetened)

- (x2) 90g of 0% fat yoghurt (sweetened with sweetener or a little sugar); (or some other brands of yoghurt)

- 18g of nuts (some are directly from packs and some I mix together and weigh out)

- 2 rice cakes or 2 rice-based crispbread crackers or 1 slice of gluten-free bread with soft cheese (the laughing cow/la vache qui rit)

- 2 rice cakes or 2 rice-based crispbread crackers or 1 slice of gluten-free bread with peanut butter or almond butter (with no additives) or occasionally paté

- 2 rice cakes or 2 rice-based crispbread crackers or 1 slice of gluten-free bread with no added sugar jam

- 20g of seeds (e.g. pumpkin seeds, sunflower seeds, linseeds, chia, sesame) (I generally mix these together myself)

- 66g cooked legumes/pulses

- 5 portions of raw and cooked vegetables (including low-fat Philadelphia cheese on 3 celery sticks and 5cm/2inches of cucumber)

- 1 x small boiled potato (occasionally fried) or, occasionally, boiled brown rice

- 10g of 85% dark chocolate

- 10 g of 78% dark chocolate

- (occasionally) 10 g of 70% dark chocolate

- fluids: herbal tea (kept in a flask) and plain water

- supplements: I estimate that my supplements such as fish oils and evening primrose oil may contribute 100 calories per day, which is frustrating as you don't get to enjoy any taste from the calories.

- Around 100 g of grilled/oven-cooked/tinned or occasionally fried fish/chicken/2 fish fingers; or beef lasanga or shepherd's pie. Occasionally: A vegetarian option; Roast lamb or pork or a joint of ham/bacon. [I have cut out pork chops, lamb chops and various types of steak to reduce the amount of red meat I eat; I might be able to reduce it more eventually]. My dinner is influenced by what my mother likes to cook.

- 200 g of refrigerated shop-bought soup

- Occasionally (generally small portions): treats such as my mother's Pavlova; gluten-free cake or biscuits.

I'm eating around 1650-1700 calories a day, though the odd day (e.g., a family occasion), I eat a lot more.

I am trying to eat a balanced and varied diet, now. However, it wasn't always as varied. I wasn't, for example, reaching the daily target for dairy products, so took calcium supplements. I have heard dieticians say that trying for too varied diet often causes people to eat more calories than is ideal. So perhaps supplements are the/a way to go, particularly during a weight loss period.


Edited to add:
You don't need to aim for the same figure as me. Different total calorie intakes would work for different people. A woman asked me how would it work for a woman who would require a lower intake of calories. My response for what it is worth:

I'm not trying to sell anything so don't have any definitive answers. I imagine women would just need to eat slightly smaller portions; or alternatively eat fewer items.

I have severe ME so use very few calories physically while most women, even those with ME, would be more active than me.

I would just aim for what works and what you can manage. For example, I imagine most women would lose weight on (say) 1500 calories a day, which wouldn't take too much adjustment from what I mention.

People would not need to eat the items I mention to lose weight; some of the general tips might lead to some reduced calories while eating a completely different diet.

Edited to add:
Somebody elsewhere said that I should point out that having a calorie deficit of 3500 calories below your "breakeven point" will result in a loss of 1 lb (454g). I previously looked at this a bit and some people think that the actual deficit required may be more, possibly as much as 7000 calories. Anyway, I think the general principle is reasonable that if you cumulatively create a big enough cumulative deficit of calories your weight will go down.

Edited to add:
Basal metabolic rate calculators:
Here are some calculators to enable you calculate how many kilojoules or calories are required on a daily basis to maintain your weight based on your lifestyle.

Then aim for a lower amount and you will lose weight. Sample quote: "This figure is useful to know if you wish to lose or gain weight. For weight loss or gain you should aim to consume 250-500 calories or 1000-2000 kilojoules above or below your BMR."

Unfortunately, as many of you will know, as you age, you can eat less. Also, if you are female you can eat less than a male.




That's pretty good, sounds like all you need to do now is maintain! I've done a lot of the tricks you have also. Healthy maintainable habit's over time beat all the diet fads every time.
By the way word count isn't limited to 2000, I tried to post a paragraph just under 500 and it was rejected. That might be a good thing though.
Thanks for posting this Tom. I have to begin this battle which I m dreading. But reading this has given me a sense of possibility. Thank you for going into the minute details about the issues and what you did to solve them. These are the parts which I find motivational and which I can identify with. I'm going to print this off and start looki g in a more detailed way,, at where I could make some changes. And then actually follow through with them. I know that I would be healthier if I lost weight and I would feel better about it. Have you felt any improvement in your ME as a result of the weight loss?. I think that your article wold be really appreciated by anyone trying to lose weight. Your honesty makes it powerful and I can identify with all of it. Thanks
Thanks for sharing. I have been struggling, going off and on and it just reinforces what I know works for me. Although I have to be around 1200-1500 cal a day to lose. I use MyFitnessPal which helps me a lot. I just have not been consistent.
There are many ways to lose weight! Although all of them are paths to eating less calories than you use, some are easier paths than others. I recently lost a few kg by cutting out sugar. I found that very easy - I felt less hungry not more. Other ways I've lost weight have involved a lot more hunger pangs!
I just saw this article and thought it contained some useful tips (though i can't do any of the exercise ones): "40 Best Weight Loss Tricks for People Over 40"
"Skipping Breakfast Might Not Be So Bad After All"
"They found that after a mean follow-up of 7 weeks, participants assigned to eat breakfast weighed, on average, 0.44 kg more than those who skipped breakfast. Additionally, after 2 weeks, those who ate breakfast consumed roughly 260 more calories daily than those who skipped it"
Edited to add: Warning: some people might find the first suggestion a bit gross

Just a few additions/updates that have come to mind recently:

(i) I lick my plate/bowl quite a lot

I generally eat either alone or in front of my family, so this is more acceptable than in many situations!

I find it a way to continue eating and getting the taste while consuming minimal calories.

(ii) I have managed to stay off most sugar.

I have eaten any milk chocolate in around a year except for a couple of presents I got.

And I haven't eaten any ice cream in around a year except for a little bit at a few dinner parties.

At the end of the day, I tend to have a little yoghurt sweetened with sweetener or a little sugar. So that and some dark chocolate (I can go weeks without eating the latter now) are the main things with added sugar that I now eat. Again, it took me a while to get here. I probably wouldn't have been able to switch to my current diet quickly; it took gradual changes over time.

(iii) I am now sometimes having low-calorie days

With all the talk that a very low-calorie diet (of around 850 calories) could be good to reverse diabetes and the 5:2 diet, where people fast for 2 days a week, it seems low-calorie days may not be that harmful, so if the circumstances allow, in the last year or so, I have been occasionally eating lower amounts e.g. 1200-1500 calories in a day. Previously I had considered it might be bad to do this. This of course helps faster weight loss.
Last edited:
Just a few additions/updates that have come to mind recently:

(i) I lick my plate/bowl quite a lot

I generally eat either alone or in front of my family, so this is more acceptable than in many situations!

I find it a way to continue eating and getting the taste while consuming minimal calories.
Looks like I can't edit this comment. I just googled it and it seems some people find the idea disgusting. So apologies to anyone grossed out by it, I was just being honest and trying to be helpful. Certainly if somebody asked me not to do it, I wouldn't do it.
Thank you for sharing your story, very inspiring ! I am struggling with my weight at the moment as I have a very unhealthy relation with food. Like you, I eat when I’m bored but my biggest problem is that it has to last a long time. A small portion will not satisfy me psychologically, I need to eat « the whole bag », which of course is very problematic.

I need to eat around 1250 calories per day. Eating a whole bag of chips is 1200...

I’m still trying but it’s very hard as I have no power control at all. If it’s in the house and I like it, I will eat it, probably in one shot or the same day.

Anyhow, congratulations to you !
Weighing myself regularly.

By weighing myself, I can celebrate even small weight losses.
This was key for me, I lost 30kg in a year while 99% bedbound, c. 850kcal/day. I set myself gazillions of mini targets - 5kg lost, 1 stone lost, 1 BMI unit lost etc etc so every few hundred grams was a Signpost Achievement. (A couple of years and maybe 5kg heavier a psychiatrist decided I was anorexic because I told him I was eating 1000kcal/day. Idiot.)
Pleased to get down to my target weight from last year (10 st 6 lbs/66 KG/146 lbs; BMI: 19.8) after putting on some weight over the winter 😊

I found 3762 calories = 1 lb; 8295 calories/34,725 kJ = 1 kg.

Blog entry information

Tom Kindlon
Last update

More entries in User Blogs

More entries from Tom Kindlon