• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

ME, diet, supplements, obesity, muscles and activity

This is a just a very brief summary of what I have found since getting ME with regard to the relationships between diet, supplements, exertion and being 'in shape' - or not!

During a period of increased stress (and maybe exertion?) I put on a LOT of weight and became borderline-obese. As the weight/fat gain included the chest area, I also started getting a considerable amount of pain in the chest area and also my back, neck and shoulders, which adversely affected sleep.

I was in VERY bad shape, and hated how I looked.

I eventually managed to shed quite a lot of the weight after the stress (and exertion?) decreased and I reduced my carb intake a bit. But I had a lot of difficulty keeping the weight down, as I got so hungry so often.

But the real breakthrough came in 2012 when I cut out gluten. First my gut function became more normal. I think that this was crucial. The weight started melting away effortlessly. A few months later I went further, and reduced grains and sugar. I was also adding supplements. The weight continued to melt away, and one day I realised that I was regaining access to my muscles too. I don't know if this was due to the diet, the supplements or both, but some of the supplements are said to have this effect. I was also no longer hungry all the time!

I reached my ideal weight and have stayed there. My muscles continued to redevelop and are now as good as when I was in my 20s (I am now in my 60s) - apart from the continuing inability to produce enough energy aerobically. I don't believe that this energy defect can be corrected through exercise if you have ME.

My weight only goes up a little if I over-exert myself or make a dietary error, or take a supplement that has adverse effects (especially on my gut) or my gut gets upset by an unknown cause. It soon goes back down again when my gut normalises again.

I am therefore taking more care to pace and rest and not exceed my anaerobic threshold although, as we all know, it takes almost superhuman self-discipline, and few (if any) of us succeed all the time.

My weight is still staying normal, and my muscles are not getting deconditioned. I just go about my essential daily activities plus some quite strenuous activity like gardening when I am able to do so without overdoing it, so have to stop when I still have stuff to finish. It just has to wait. I love the feel of using my muscles again, but sometimes I know I just have to settle for having a few nice stretches, bending from side to side, forward and backward, etc., using the muscles more in everyday activity, and not going in for any full-blown exertion, as I need to save my 'energy credits' for something more essential later or the next day.

I'm sure those of us who are au fait with post-exertional malaise (most of us 'old hands' and a few savvy younger ones) are horribly familiar with that feeling of "Aaargh - I feel terrible - was it worth it?"

I think that over-exertion may delay progress towards improvement, so we pay for it not just with the obvious PEM. So usually it really isn't worth it, at least for me. I guess it's always a matter of weighing up pros and cons.

But the summary message I am trying to get across in this blogpost is:
  • I got back in shape through diet and supplements (see my profile for details) - not exercise.
  • My body tells me when and how I can use it. I can't push it too far without adverse consequences, which sometimes - counter-intuitively - can even include fat gain and muscle loss.


It's great you were able to lose so much weight and get healthier through lifestyle and supplements. You must have been so relieved to get down to your normal, desired weight.

Stress can have such bad consequences for us. Around 2002, I did a total career change and went to culinary school so I could become a personal chef. At that time, I didn't know that culinary school is a bit like the military.

Our head chef was very stern and yelled at us a lot. Of course, we did screw up a lot because we were learning, after all, but it really got to me. My hair started falling out from stress, and the stress did terrible things to my sleep, which was already poor.

I lost way too much weight and looked and felt just godawful. I ended up asking my doctor for beta blockers for the short time I had left in school. Now I know good supplements to take, which would have been better, but I didn't know about them then.

You are fortunate you can relate improvements in your health to avoiding gluten. So many people have trouble with it.

Some people with narcolepsy become symptom free once they get rid of gluten in their diets.

I do a low-carb diet and, like you, try to avoid grains as much as possible. I do miss bread, though. Why must Paleo-like bread taste so godawful? I'd rather do without.

It's best to focus on what we can have in a low-carb diet. Good fats are so flavorful, and it's nice to have them again after decades of baseless nutritional advice saying we should eat high carb, low fat
Similar story! I cut out fake sugars, gluten and dairy and have lost nearly twenty pounds.

The other thing that really made the weight loss seem so much easier than it had ever been was Vitamin D. My D was quite low, and once I got on a high D supplement, my weight dropped. I use an app on my phone to keep track, and you can see a drop of about five pounds each time I've given up aspartame, gluten, dairy, and another five when I started taking Vitamin D.

I went to a yoga class for the first time today. It was a private class that went at my pace, but this is in contrast to me biking on my little stationary bike at home and it landing me in bed for two days!

Right now there is a bread baking in my oven that contains NO flours of any kind: just nuts and seeds. I hope it's okay if I post a link here... it smells amazing and is compatible with our multiple intolerance issues:


Cooking is a good 'light' activity (for me, on good days). There's a lot of motion but also a lot of waiting/pausing/resting, and the outcome is always lovely, especially if I've made something healthful and delicious. <3
Just a couple of comments on the comments!

I have found quite a nice gluten-freen bread - it's called BFree and is made in Ireland and sold in some UK supermarkets, e.g. Tesco and Asda, and you can also get it direct from Bfree.

Stress may well have contributed to my weight gain - it was a very stressful time.

I tried high-dose Vitamin D3 and seem to be one of those who can't tolerate it - see this thread:


Blog entry information

Read time
3 min read
Last update

More entries in User Blogs

More entries from MeSci