How I lost 48lb / 22kg / 3st 6lb while ill with (severe) ME/CFS

I am fortunate to have managed to get my BMI under 25 (24.7) by losing 48lb / 22kg / 3st 6lb while ill with severe ME/CFS. (I hope to lose more again).

It took me 2.5 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 9 points if others occur to me.

#1:
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 people say fasting like this can even be useful. Not for everyone, but helped me cut out calories.
#2:
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.
#3:
Reduce calories that are drunk.

I haven't drunk any calories during this period. 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.
#4:
Weighing a lot of the food.

Boring I know but allows me to have all sorts of food including some treats.

Related point: calorie counting (approximately)

This helps 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. A lot of my eating was out of habit rather than my needing the calories.
#5:
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. 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.
#6:
Allow myself one sweet treat per day (though occasionally I have more)

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. Maybe when I get to my main target weight I will cut this out for health reasons but at the moment I feel I'm earning it by losing weight. As with other things, I will try to weigh it or have an idea how many calories it has.

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.
#7:
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.
#8:
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. I have a weighing scales that gives weight broken down by 0.2lb (90g) so generally if I have stuck to my aim for the diet or something close to it, I will register a loss each week even if it is not huge. If I put on weight I can usually quickly work out why I did.
#9:
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.

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Part 1 of 2

Are symptoms of ‘hypoglycemia’ in Chronic Fatigue Syndrome (CFS) associated with hypoglycemia or orthostatic intolerance in young people?

Katherine Rowe, Rebecca Gebert, Susan Donath, Angas Hamer & Fergus Cameron

Background:

Symptoms of nausea, feeling faint, malaise and mild anxiety are common in young people with CFS and popularly attributed to ‘hypoglycemia’ resulting in various dietary interventions with little reported improvement.

Objectives:

To determine whether the symptoms are associated with measured hypoglycaemia using continuous tissue glucose monitoring or whether these symptoms are associated with documented orthostatic intolerance.

Methods:

Nine young people with CFS (mean age 20 years) and mean duration of 4.5 years with persistently troublesome symptoms were compared with 10 healthy adult controls without diabetes. Each subject agreed to 3 days Continuous Glucose Monitoring System (Medtronic CGMS). This is routinely used in adolescent diabetics to document food intake, tissue glucose levels and activity levels to monitor control.

Subsequently 8 of these had formal cardiac tilt table testing where heart rate and blood pressure are measured supine and during 70 degree head-up tilt for up to 10 minutes to assess the presence orthostatic intolerance (either postural orthostatic tachycardia (POTS) or neurocardiogenic hypotensive syndrome). If positive, appropriate medical management of increasing salt and fluids, gentle improvement of muscle tone and blood pressure support medications, was implemented.
 
Part 2 of 2

Results:

The tissue glucose was calibrated with the blood glucose and all fell within acceptable normal range. There was statistical (but not clinical) significance in average tissue glucose in CFS subjects. 6% of time in controls and 16.8% in CFS was spent in the range <4mmol/L glucose (95% CI -23% to +2%, p=0.1) suggesting weak evidence for a difference given the variability and small sample size. The reported presence of symptoms throughout the day was not associated with significant reduction in tissue glucose levels.

Six had confirmed evidence for POTS, one for neurocardiogenic syndrome and one for a combination of both. All 8 reported improvement in all symptoms especially nausea, dizziness and malaise with active treatment of their orthostatic intolerance.

Conclusion:

This study could not confirm a link between putative symptoms of ‘hypoglycemia’ and documented hypoglycemia. This suggests that symptoms frequently attributed to ‘hypoglycemia’ may be due to orthostatic intolerance and further investigation and management of this condition provides more reported relief for these troublesome symptoms.

Dr Kathy Rowe, Senior Consultant Paediatrician, Department of General Medicine, Royal Children’s Hospital, Melbourne, Victoria, Australia 3052
kathy.rowe@rch.org.au No conflicts of interest to declare. RCH internally funded.
 
Somebody mentioned that skipping meals might not be good in ME/CFS due to hypoglycaemia. This very well may be an issue for some people. But I thought I would highlight that there is a (small) research study that found symptoms could be attributed to hypoglycaemia when it was not the case.
 
Congratulations on the hard work and subsequent weight loss.

Thanks also for posting the hypoglycaemia vs POTS information. I need to look into this in greater detail.
 
I'm glad to hear that you lost some weight and in such a sensible way too. Thanks for sharing these tips. When I get bored-hungry it sometimes helps me if I chew some gum instead of raiding the fridge. Although this tip only goes so far it's not a complete weight loss plan obviously--just another thing to try.
 
Congratulations, Tom! This is truly an amazing accomplishment!

I have always fallen back on the excuse that I can't exercise, so can't lose weight, but your efforts make a liar out of me.

I'm gonna try some of your tricks!
 
i cant skip meals and in fact, since i became sick, had to add more meals. however, i lost 20 lbs after giving up gluten. then, lost more after antibiotic treatment.
 
skipping breakfast can slow ones body mechanism down, so that one isnt a good idea as then one has even more issues trying to loose weight. Just go for a low carb thing for breakfast. eg I'll at times have something like steak, egg and mushrooms.

ME people can also have glucose issues eg low glucose from overnight, so skipping breakfast not a good idea for that reason either.

edit, I just saw you put a reference to an 8 person study on glucose and ME/CFS. In my case I did have hypoglyemia and quite severely too, it showed up several times on my blood tests.
 
I have now posted an update:
How I lost 70 lb / 32 kg / 5 st while ill with (severe) ME/CFS
https://forums.phoenixrising.me/index.php?entries/how-i-lost-70-lb-32-kg-5-st-while-ill-with-severe-me-cfs.2492/
 

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