The ultimate poll about CFS/ME diet

[MeSci]

Yes, I felt hungry. Of course I did. I didn't expect to lose a pound or half a pound each week without feeling hungry. The appetite system is quite fussy about telling you you're not getting enough food. That's the most difficult part of weight loss. The next most difficult thing was not to go on a binge once I decided I had lost enough weight. I knew the only way I would lose weight was by eating less than my body required to maintain a steady weight. Seeing my blood sugar measurements improve was a great motivator and so was seeing that I was actually getting weight off.

That you managed to lose weight despite hunger is testament to your willpower! I used to get so hungry that I felt faint, or nauseous, if I didn't eat immediately.

But I eventually lost mine without the hunger. No blood-sugar peaks and troughs.

 

[CantThink]

Only thing that has benefitted me dietary-wise is an elimination diet, and then avoiding what I proved reactive to. This helped relieve unbearable reactions that I was having, but hasn't helped the M.E. overall.

 

[JohnCB]

That you managed to lose weight despite hunger is testament to your willpower! I used to get so hungry that I felt faint, or nauseous, if I didn't eat immediately.

My original message was not meant to be interpreted as "hey, I can do this, why can't you." We are all different and it's not my place to tell anyone else what they can and can't do. I just wrote the thoughts I had to the question of what diet(s) I had tried.

As to willpower, I don't see it as willpower. I don't have any kind of mind over matter. What I did have was motivation, including reasons that went beyond the level of detail I want to go into. I also had a belief that I could do it, a desire not to mess around, and a sense was now the time to do it and the latter meant that I wasn't going to experiment. I just went with my understanding that you gain or lose weight in a simple arithmetical relationship to how much you eat and how much you burn off. So I had desire and self-belief more than willpower. All I can say is it worked for me and I am glad that I did it.

I would like to lose a few more pounds especially the ones that have crept back since I last actively fought the battle (at one time I could claim that I was about 3 stone below my peak way). However my weight is currently stable: I have been about my present weight for several years. In addition I think it is too much of a burden to put on myself as my illness has progressively got worse or in other words I don't think I can manage to do it now. I think part of my present stability is due to have learnt some lessons in my previous efforts.

I did my diet management using a spreadsheet I put together and I used this to calculate my steady state calories: this gave a result of 2450 Calories a day. I did find after that that my weight was quite sensitive to quite small deviations above and below that figure when I was trying to actively manage myself to maintain the weight that I had achieved.

 

[Arius]

My experience didn't really fit into the poll either. (Though so far the poll is confirming my belief that vegan diets are dangerous and energetically draining. I was mostly vegan/freegan for a few years prior to becoming sick, and Dr. Myhill now considers it a risk factor for CFS. I'd bet the number of vegans / former vegans on this message board vastly outstrips the percentage of vegans in the general population.)

I did Dr. Myhill's Stoneage Diet for several months. No gluten, grains, sugars, starches, nuts, legumes, processed foods (obvs) etc.

Pros: In the first few weeks, it significantly reduced my brain fog, sore throats, and headache. I went from not being able to remember nouns to being able to do complex math in my head. I could read denser material for longer. My mood dramatically improved.

Cons: After the first few weeks, the benefits tapered off and I saw no further improvement. I haven't had pizza or cheesecake in over a year, and sometimes it makes me want to cry.

After several months, I modified the diet further to eliminate high-FODMAPs foods. For the last few months, I've basically been eating meats (unfortunately, after a year and a half of being too disabled to work, I can't afford the stuff that isn't laced with heavy metals, abx, and other toxins), salad greens, and a handful of other vegetables. Oh, and bananas.

Pros: The low-FODMAPs diet seems to be helping with what I suspect was an overgrowth of sulphate-reducing bacteria. I only get gassy if I cheat. Hopefully this means I'm no longer poisoning my mitochondria with H2S.

Cons: I've significantly reduced the already meagre variety in my diet, and other than not farting, I've seen absolutely no improvement.


I came into this thinking that diet was the end-all be-all. Now I'm realizing that gut health / proper nutrition is one tiny part of a larger picture involving sleep hygiene, environmental toxicity, stress management, rest, etc.

I think it is certainly helpful to get your gut functioning properly. If you want to give your immune system the best chance of defeating this thing, then in my opinion it's essential to eat the foods that are right for you. (Probably you're at least going to want to cut out sugar, gluten, processed foods, and foods that cause inflammation.) But don't fool yourself - this isn't a cure.

 

[Gondwanaland]

Back in 2009 I was overweight but didn't feel ill.

Then I started a whole grain diet without processed foods and lost weight without calorie counting (actually on a slightly hypercaloric diet eating every 3 hours, lots of home baked bread etc).

In 2011 this diet caused me such a vascular degeneration that I landed in the hospital taking heparin and then took warfarin for 1.5 years. The medication worsened my health quickly since it messes up the metabolism of vitamin K2 (and energy).

In 2013 I went gluten free and never looked back. It has been a huge improvement for me, but then eating high lectin foods in replacement to gluten put me back to where I was before.

Also in 2013 I went dairy free and it didn't help me at all, I think on the contrary. But I don't drink milk, and we found out that my husband doesn't tolerate milk, but is fine with cheese.

Eating a lot of vegetables didn't help because I was eating very low carb back in 2014 and a metabolic acidosis made me intolerant to salicylates, nitrates, oxalates, phenols. When I recovered from it then anemia (despite of eating a lot of meat daily) made me oxalate intolerant again in 2015.

Then I finally learned that I need a high carb, high protein, medium fat diet.

Right now I have been successfully juggling my lysine/arginine intake to deal with a virus problem and watching my lectin intake to avoid pain. Paying attention to Th1 / Th2 balance has been helping immensely as well.

Gluten is out forever I guess, and nuts and seeds are very limited in my diet for now. Funny thing though is that I tolerate legumes very well, but my husband (who is also ill but doesn't have autoimmunity AFAIK) doesn't. He can even eat gluten every now and then without pain, but the high molybdenum in legumes puts him down within just a couple of hours (sciatica mainly).

I found out that I can only sleep well if I eat some starch at dinner and have been rotating rice, potatoes, sweet potatoes and something baked with rice flour. Bananas are poison to my joints though . EDIT TO ADD (broccoli sprouts, i.e. natural glutathione, and melatonin helped to reverse the worse joint pain I ever had).

We haven't been tested for insulin resistance yet, but we both have many of its symptoms (mine are mostly gone after my low-carb phase).

So yes, diet plays a huge role for both DH and I, and it has been a very personal journey. Eating the right foods has been keeping us supplement- and medication-free most of the time.

 

[Thomas]

I have IBS. And had it way before ME struck. I've never really been able to find a diet that has helped. Sure some things are worse than others but the mere presence of food in my digestive tract causes symptoms.

Some days I want to go hardcore low FODMAP or something. Other days I'm just like screw it, I'll eat what I want. I should note though that I don't eat gluten dairy but just cuz.

 

[Gondwanaland]

Just as a side note, if THIS doesn't have an influence on our health, then what does?

Autoimmun Rev. 2015 Jun;14(6):479-89. doi: 10.1016/j.autrev.2015.01.009. Epub 2015 Feb 9.
Changes in intestinal tight junction permeability associated with industrial food additives explain the rising incidence of autoimmune disease.
Lerner A1, Matthias T2.
Author information

• 1Pediatric Gastroenterology and Nutrition Unit, Carmel Medical Center, B, Rappaport School of Medicine, Technion-Israel institute of Technology, Michal St, No. 7, Haifa 34362, Israel. Electronic address:aaronlerner1948@gmail.com.
• 2Aesku.Kipp Institute, Mikroforum Ring 2, Wendelsheim 55234, Germany. Electronic address: matthias@aesku.com.

Abstract
The incidence of autoimmune diseases is increasing along with the expansion of industrial food processing and food additive consumption. The intestinal epithelial barrier, with its intercellular tight junction, controls the equilibrium between tolerance and immunity to non-self-antigens. As a result, particular attention is being placed on the role of tight junction dysfunction in the pathogenesis of AD. Tight junction leakage is enhanced by many luminal components, commonly used industrial food additives being some of them. Glucose, salt, emulsifiers, organic solvents, gluten, microbial transglutaminase, and nanoparticles are extensively and increasingly used by the food industry, claim the manufacturers, to improve the qualities of food. However, all of the aforementioned additives increase intestinal permeability by breaching the integrity of tight junction paracellular transfer. In fact, tight junction dysfunction is common in multiple autoimmune diseases and the central part played by the tight junction in autoimmune diseases pathogenesis is extensively described. It is hypothesized that commonly used industrial food additives abrogate human epithelial barrier function, thus, increasing intestinal permeability through the opened tight junction, resulting in entry of foreign immunogenic antigens and activation of the autoimmune cascade. Future research on food additives exposure-intestinal permeability-autoimmunity interplay will enhance our knowledge of the common mechanisms associated with autoimmune progression.

 

[MeSci]

I have IBS. And had it way before ME struck.

Me too - and I was omnivorous then, as I was a child when IBS first appeared. I didn't get ME until about 31 years later, which was 19 years after I went vegetarian and 12 years after I went vegan. I don't think that the shortcomings of my diet were about them being vegan or veggie, but about the amount of processed food I ate, and the other unhealthy habits.

 

[MeSci]

My experience didn't really fit into the poll either. (Though so far the poll is confirming my belief that vegan diets are dangerous and energetically draining. I was mostly vegan/freegan for a few years prior to becoming sick, and Dr. Myhill now considers it a risk factor for CFS. I'd bet the number of vegans / former vegans on this message board vastly outstrips the percentage of vegans in the general population.)

Well, this is obviously not a rigorously-conducted poll, but it doesn't seem to support your theory.

 

[roller]

whats with the parasites on raw foods / veggies?

e.g. the helminth eggs etc etc

no risk?

a guy from the pest control was talking about his job: nobody needs the pest control more often than organic consumers.

 

[JaimeS]

Nothing recognizable as sugar, and nothing recognizable as carbs (no bread, potatoes, root veggies, honey, molasses...). Lots of fish and broths. So it's basically a low-carb (less than 25% of my daily calories) higher-fat, higher-protein diet that's probably most like paleo. I tried SCD (not in the poll) and it was awful because of all the honey. Simple sugars were NOT the way to go for me.

My 'encephalitic' pain disappeared within two or three days of no sugar, but if I have something I don't know is sugary, it swiftly returns. That includes an apple I later learn has 17-g of sugar (I aim for 25-g of sugar per day overall -- not added sugar, ANY sugar -- and I'm mostly successful.)

My carbs aren't low enough to go into ketosis, so it's not a ketogenic diet per se. It's "f$*(*$ sugar and the horse it rode in on" diet. In technical terms.

I'm noticing a real slump around 3pm... it makes me wonder. Without the sugar to keep them happy, is my lower cortisol making me fight infection harder around this time? However, my pain is reduced and my digestion is great. If I could now address the worsened energy issues, I'd be a happy camper.

I have definitely lost weight, despite the high fat and high protein, but I'm not underweight, so that's all right.

-J

 

[msf]

Honey is a FODMAP, as are apples. They both come under fructose-whatever, I believe.

I think I can tolerate sucrose in small amounts, but I think any kind of sugar is going to encourage the wrong kind of bugs.

 

[JaimeS]

Honey is a FODMAP, as are apples. They both come under fructose-whatever, I believe.

CONSTANTLY CLUELESS ABOUT DIET, TEACHES NUTRITION.

-J

....Goes to look up FODMAP diet

[Edit: okay, I can now say I could be doing loose paleo or a more rigid form of FODMAPS.]

 

[Justin30]

I tried SIBO diet which was good at first then the results tapered off. I even made my own SIBO goat milk yogurt. Felt good pushed to hard then crashed. Diet didnt do much after that.

I developed food intolerances right after getting ME it was one of the first things that changed. I started to get pains, changes in stool inconsistency, etc. So with me, diet matters.

Whats also strange prior to getting ME I have been lactose intolerant since birth. The allergy faded and from 8-29 yrs old I loved milk and whey protein cause I used to exercise lots. When I had a recent allergy test showed; havent had whey and milk for a while but I am super allergic to it. What does the impact of a food allergy that I have had for years and kept eating have on my current heath?

I eat clean foods now: no dairy, no wheat, no processed, more alkaline foods, cooked foods, reactive foods eliminated.

What I must say though is that modern food and the environment is part of major global changes that has brought on diseases like we have never seen before and health problems that rule the NIHs spending budgets such as Heart disease, Diabetes, Obesity and Cancer can all be attributed to diet among other things.

Western diets lack the nutrients we need for basic biological processes it is a proven fact. There is no way you can persuade me, the proof is in the pudding.
Most Western Diets Contain:

- chemicals, dys, preservatives
- nutrient depleted vegetables
- GMO foods that are banned in many countries
- pesticide, herbicide, insecticide residues on no organic vegetables
- Antibiotics in the meats, milk and water

Then you combine these with higher than normal daily life stressors, environmental contaminants, Atmospheric degredation, etc. And you have the perfect cocktail to mess the body up something good. But we all know uncle Joe that smoked till he was 95 yrs old and didnt ever get sick. These are exceptions.

Not to mention most of us have SIBO if you have true ME. Many will have issues will nutrient malabsorption from IBS, IBD, OI, etc.

So if you ask me diet is a controlable factor that must be addressed but is part of a bigger picture. You need the nutrients to repair your body...period...if you arent getting them through a healthy balanced diet than how do you know you are even getting them at all? If your not using supplements then where are nutrients going to pop out of?

My last point is many of us take medication. Its a fact that the meds we use deplete is of nutrients even further. Coq10, calcium, magnesium, vitamin k, are just a few.

Eating healthy nutrient dense foods protein, carbs, fats in smaller portions along with snacking is what works for me.

 

[rwac]

I started off trying a ketogenic diet. Got the ketones high, but couldn't tolerate it for very long. Insufficient food may have been part of it.

The PhD helped for a little bit, Carbs are super important.

That brings us to Ray Peat way of eating. Works great for me.

Highlights:
Lots of carbs including Orange Juice
80-100g of quality protein
Aspects of FODMAP type diets.
Diet is aimed at improving metabolism which is directly relevant to CFS.
Low stress.

 

[Gondwanaland]

I started off trying a ketogenic diet. Got the ketones high, but couldn't tolerate it for very long. Insufficient food may have been part of it.

The PhD helped for a little bit, Carbs are super important.

That brings us to Ray Peat way of eating. Works great for me.

Highlights:
Lots of carbs including Orange Juice
80-100g of quality protein
Aspects of FODMAP type diets.
Diet is aimed at improving metabolism which is directly relevant to CFS.
Low stress.

I suspect 33% of people do better with high carbs, another 33% with very low carbs, and the remaining 34% with something in between. I need my starch. Micronutrient balance is crucial though.

 

[Mij]

My "diet"- eating my largest meal for breakfast and then eating smaller lighter meals throughout the day. I stop eating after 6pm but if I'm a little hungry I'll snack on something light.

 

[rwac]

I suspect 33% of people do better with high carbs, another 33% with very low carbs, and the remaining 34% with something in between. I need my starch. Micronutrient balance is crucial though.

I have my doubts. Even the stalwart low-carbers gradually drift to higher carb over time. Just because someone can tolerate low carb in the short term doesn't mean they can keep going in the long term.

 

[Gondwanaland]

I have my doubts. Even the stalwart low-carbers gradually drift to higher carb over time. Just because someone can tolerate low carb in the short term doesn't mean they can keep going in the long term.

I see people juggling with carb content in the longer term, upping a little, lowering a little - navigationg according to inflammation levels. But not everyone will do well on very low carb even if in short term, while some respond like if they were rescued from the darkness (I read reports of pretty much the same reactions on forums of low carb diet, chelation and methylation - so I suspect the ones that are benefitting from these interventions are those with severe insulin resistance).

 

[Old Bones]

I responded to the questionnaire considering the effect of diet on ME symptoms/function only. Nothing helped. But, certain diets on the list were helpful for some problems, while hurting others. Herein lies the dilemma for me and diets -- it's a balancing act, deciding which symptoms I can best tolerate at any given time. There are always trade-offs. For example:

The Autoimmune Paleo diet was excellent for significantly reducing the joint pain and stiffness associated with rheumatoid arthritis; and, if strictly followed, it completely clears up my psoriasis. But, this diet is too low-carb for me long-term, as per @rwac 's and @Gondwanaland 's comments above. Cutting out the carbs makes my sleep quality much worse, and I "dry out" -- dry skin, eyes, mucous membranes. The allowed carbs (eg. sweet potatoes) feed my SIBO.

The GAPS introduction diet rapidly resolved my extreme bloating. And, I lost a lot of weight -- too much, in fact. I've been unable to gain back the weight, despite efforts to do so. In addition to all of the disadvantages of AIP, GAPS caused severe constipation. Without weekly enemas, I wouldn't have gotten "cleaned out" at all during my five months on strict GAPS intro. Going off strict GAPS has resulted in the return of most of my previous digestive problems, so it definitely was a management tool only. I couldn't stay on the diet long enough to achieve the expected "cure".

I believe in the resistant starch component of the Perfect Health Diet. Because, after the problems with AIP and GAPS, adding in cooled potatoes and rice improved my sleep, my eyes stopped drying shut at night, and I developed more normal bowel movements. But, my joint pain, swelling and psoriasis returned. And, eating these carbs (plus any grains, actually) causes my hands to go numb.

The Histamine elimination diet is helpful in reducing itching, burning, swelling, etc., but it does nothing for core ME symptoms. Nevertheless, this is the one dietary protocol I'm currently trying to be consistent with.

The FODMAPS diet was helpful for bloating and improving the consistency of my stools. But, it is not intended to be followed long-term. And, as soon as I started adding back FODMAPS, my near-diarrhea and bloating returned (again, probably SIBO).

If anyone has ideas about why my hands go numb if I eat even small portions of grains/starches, I'd love to hear them.