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

Blog entry posted by Tom Kindlon, Jul 14, 2017.

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. Sidereal
    Well done Tom!
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  2. JaimeS
    Congratulations! I also lost weight with ME/CFS, but mostly it wasn't choice... cutting out gluten and dairy did a lot of my work for me, I reckon...
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  3. taniaaust1
    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.
  4. Daffodil
    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.
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  5. Woolie
    Congratulations, Dolphin! 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!
    Tom Kindlon likes this.
  6. Snowdrop
    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.
    Tom Kindlon likes this.
  7. lafarfelue
    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.
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  8. Tom Kindlon
    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.
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  9. Tom Kindlon
    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.
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  10. Tom Kindlon
    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.
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