The Best Diet for a Severe Case of ME/CFS?

Cort

Founder of Health Rising and Phoenix Rising
Staff member
John Falk, a former author - who has had severe ME/CFS for years now - asked this question on the blog. I wanted to put it on the Forums as well.

I was counseled by Dr. Craig a year ago. At the time I was on a Ketogenic diet. After reviewing some labs and medical history, and especially my difficulty sleeping, she told me that it was not a good idea to be on keto diet ‘long term’ as it starved gut bacteria, among other drawbacks. She suggested a diet with more safe starches which I then tried but it only led to carb cravings and then binges. Now she is a proponent of ketogenic diets (my case is pretty severe, as I’m housebound). So m question is, what diet is best for CFS? Perfect Health Diet? Keto? Paleo? I’m ver4y confused (and a little desperate.
 

Merida

Well-Known Member
I consulted with a doctor who was board- certified in both family medicine and Physician Nutrition. He seemed to know a lot about occult thyroid issues/ complex hormone issues, and such. He told me to go on a high protein/high fat diet - eliminate ( or severely limit) carbs and sugar.
My son, who had severe ME at age 5, following an EBV infection, started craving large amounts of milk - like 1/2 gallon every 2 days. He told me, " Mommy, I am so glad I finally found something that helps me feel better. "
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I consulted with a doctor who was board- certified in both family medicine and Physician Nutrition. He seemed to know a lot about occult thyroid issues/ complex hormone issues, and such. He told me to go on a high protein/high fat diet - eliminate ( or severely limit) carbs and sugar.
My son, who had severe ME at age 5, following an EBV infection, started craving large amounts of milk - like 1/2 gallon every 2 days. He told me, " Mommy, I am so glad I finally found something that helps me feel better. "
It sounds like a modified ketogenic diet. I recognize John's carb craving and binge problems. Once I start eating carbs it;s hard to stop. Did you have that problem and if you did it go away on this diet?
 

tara

Member
I have been on a very low fat high carbohydrate diet mainly veggie with fish and chicken most of my life. This was due to being obese as a child and seeing a nutritionist when I was ten years old.

I always found the more red meat I ate (after I lost the weight by age 12) the more weight I put on. I was also taught about how much additional fat was striated through red meat as opposed to white meat.by the time I was 16 I stopped eating red meat all together.

In more recent years have stopped eating most animal products altogether because of the factory farming issues, animal cruelty etc.

I've had ME/Cfs for almost 4 yrs. My gut was terrible at the start however I was a regular alcohol drinker. I stopped drinking eating rye bread sourdough stopped all whole grain products. I've never eaten processed food sweets junk food or desserts since I was obese as a child.

Recently I read Dr Terry Wahls book but also read a book called 15000 canaries( discusses food toxins from factory farming and most meat and dairy). I stopped all dairy including yoghurt and kefir which Iloved! Also added nuts coconut oil and milk. First time having so much fat in my diet for many years. Boy what a challenge! Mentally and physically.
I call my diet high carbohydrate as all vegetables are carbohydrates and these are 80% of my diet. I think people forget fruit and veggies are almost 100% carbohydrates it's just that the majority of the are low G.i. The jury is out on whether to throw out a balance of high G.i carbs. Many studies have shown the importance of fibre in the lowering of heart disease cholestoral cancer and stroke risk.

I'm trying to cut back on brown rice to about 1 cup per week and minimise the high G.I carb veggies as according to Wahls. However I wonder if I'm doing the right thing. I think I'm better without the small amount of gluten from whole grain products and better without yoghurt but I don't really know.

I know my skin is much better after consuming coconut oil and milk. But do I feel good after consuming all this saturated fat! No! I feel bloated.
Would I rather eat a bowl of fruit salad or a peace of rye bread with tomato and cheese? Yes!

Could I become a carnivore again to return to full health? Never. Last time I was forced to eat roast lamb (20 years ago) I couldn't go to the bathroom for 3 days I was so constipated. I also had nightmares that I was eating the blood and flesh of a newly killed dead animal.

We are all guinea pigs with diets. And who knows how long these diets take to take effect. Real effect at a cellular level. I believe it could be up to 7 years until some cells fully regenerate.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I have been on a very low fat high carbohydrate diet mainly veggie with fish and chicken most of my life. This was due to being obese as a child and seeing a nutritionist when I was ten years old.

I always found the more red meat I ate (after I lost the weight by age 12) the more weight I put on. I was also taught about how much additional fat was striated through red meat as opposed to white meat.by the time I was 16 I stopped eating red meat all together.

In more recent years have stopped eating most animal products altogether because of the factory farming issues, animal cruelty etc.

I've had ME/Cfs for almost 4 yrs. My gut was terrible at the start however I was a regular alcohol drinker. I stopped drinking eating rye bread sourdough stopped all whole grain products. I've never eaten processed food sweets junk food or desserts since I was obese as a child.

Recently I read Dr Terry Wahls book but also read a book called 15000 canaries( discusses food toxins from factory farming and most meat and dairy). I stopped all dairy including yoghurt and kefir which Iloved! Also added nuts coconut oil and milk. First time having so much fat in my diet for many years. Boy what a challenge! Mentally and physically.
I call my diet high carbohydrate as all vegetables are carbohydrates and these are 80% of my diet. I think people forget fruit and veggies are almost 100% carbohydrates it's just that the majority of the are low G.i. The jury is out on whether to throw out a balance of high G.i carbs. Many studies have shown the importance of fibre in the lowering of heart disease cholestoral cancer and stroke risk.

I'm trying to cut back on brown rice to about 1 cup per week and minimise the high G.I carb veggies as according to Wahls. However I wonder if I'm doing the right thing. I think I'm better without the small amount of gluten from whole grain products and better without yoghurt but I don't really know.

I know my skin is much better after consuming coconut oil and milk. But do I feel good after consuming all this saturated fat! No! I feel bloated.
Would I rather eat a bowl of fruit salad or a peace of rye bread with tomato and cheese? Yes!

Could I become a carnivore again to return to full health? Never. Last time I was forced to eat roast lamb (20 years ago) I couldn't go to the bathroom for 3 days I was so constipated. I also had nightmares that I was eating the blood and flesh of a newly killed dead animal.

We are all guinea pigs with diets. And who knows how long these diets take to take effect. Real effect at a cellular level. I believe it could be up to 7 years until some cells fully regenerate.
Interesting about protein and constipation and gut problems. I do wonder about that....
Different strokes for different folks!
Issie has done very well on a low fat low protein diet I believe it is....very well - you never hear about that kind of diet.
 

Merida

Well-Known Member
This is a valuable discussion, but so hard to get to any generalizations. Tara thank you for the great details. Yes, FM people are reported to be 'constipation predominant.' I am betting this is due to neurology and possibly a long, redundant colon. So, plenty of soluable, non-irritating fiber might be good - like rice bran.

I participated as a control person in a study on ovarian cancer years ago - prior to CFS. There were detailed diet questions - how much meat, veggies, etc. was in your diet 2 years ago - study from USC -showing pictures of different serving sizes. Well, I am a conscientious person, but I had real trouble with that section of research. So, I don't put much stock in these diet research projects - except for caffeine and alcohol intake.
 

Paw

Well-Known Member
When I'm pessimistic, this question feels kind of like contemplating whether its better to use soft or hard water on your house that's burning down. I've done a lot of experimenting with different diets, and it only maybe affects my well-being a little at the margins. It doesn't touch the raging fire. I'm still looking for that magic pill.

(Of course I do always feel better when I don't stuff my face or eat a bunch of junk.)

But when I'm feeling a little less cynical I can acknowledge that every little bit adds up (lifestyle, sleep, supplements, exercise, etc). After much testing I find I do better without gluten, so I stay clear of that. I've been a vegetarian for more than 30 years, and I can't even begin to imagine eating meat again, even though it's not uncommon for people to tell me -- people who only have a vague conception of CFS -- that I just need to eat more red meat! Who knows, maybe there's some truth to it, but it's not going to happen (except that I did this year start supplementing with fish oil; somehow a capsule doesn't feel the same as a chunk of flesh on my plate!).

In the end, I'm with Cort: there's surely no formula that works for everyone.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
When I'm pessimistic, this question feels kind of like contemplating whether its better to use soft or hard water on your house that's burning down. I've done a lot of experimenting with different diets, and it only maybe affects my well-being a little at the margins. It doesn't touch the raging fire. I'm still looking for that magic pill.

(Of course I do always feel better when I don't stuff my face or eat a bunch of junk.)

But when I'm feeling a little less cynical I can acknowledge that every little bit adds up (lifestyle, sleep, supplements, exercise, etc). After much testing I find I do better without gluten, so I stay clear of that. I've been a vegetarian for more than 30 years, and I can't even begin to imagine eating meat again, even though it's not uncommon for people to tell me -- people who only have a vague conception of CFS -- that I just need to eat more red meat! Who knows, maybe there's some truth to it, but it's not going to happen (except that I did this year start supplementing with fish oil; somehow a capsule doesn't feel the same as a chunk of flesh on my plate!).

In the end, I'm with Cort: there's surely no formula that works for everyone.
No it's very individual - for a few people they get almost magical results; for everyone else I think it's helpful in reducing the load. I've cut out gluten, dairy, eggs, tomatoes, soy and I do low glycemic -- it helps but man do I have a long way to go!
 

VJ Knutson

Active Member
Dr. Allison Bested (the leading Canadian doc for all things CFS/ME/FM) has co-authored a book entitiled "The Fibromyalgia Diet". It is offers a month of menus, along with shopping lists and prepare ahead tips, etc.
 

Kate

Member
I've been on a low carb Specific Carbohydrate Diet for 18 months for salicylate sensitivity, attempting to heal my gut. It worked. That SCD yogurt is magic though it was a year before I could tolerate it. During this time I began losing my hair and it recently proved to be symptoms of hypothyroidism.

So I went on liothyronine (for high RT3). Felt awful, sluggish. Then another doctor (I have 5) came up with an article that said hypothyroid can develop through starvation. I am eating more foods now thanks to SCD diet and can safely begin to eat more carbs. I was gluten deprived and am feeling much better adding sweet potatoes and such.

First I had to heal my food intolerances then add forbidden foods to heal my thyroid. The body shuts down the thyroid when in starvation mode.

I was also doing the ketogentic fast ala Dr Courtney Craig and loved it a few times. But there is indeed a possibility of getting too few carbs. We need them!

Two more notes: the SCD yogurt recipe was magic for me. I love Terry Wahl's ideas as well. Both are deeply researched diets. I am well enough to tolerate Gaps diet (a more liberal SCD type) and even Terry Wahl's now only recently can I tolerate bone broth).
 

Remy

Administrator
The body shuts down the thyroid when in starvation mode
My understanding is that conversion of the active thyroid hormone, T3, from the storage hormone, T4, is reduced when insulin gets too low. This results in hypothyroid symptoms.

However, many of us don't need to worry about this because we have too high insulin and insulin resistance that we are trying to correct using a low carb diet. Therefore, eating low carb is not as likely to send our insulin plummeting below levels required for proper thyroid hormone conversion. Especially because most of us will move into "maintenance phase" eating, incorporating more healthy carbs as we reach our health goals.

So, my two cents is that we really don't need *any* carbs if we have high insulin levels and they will likely sabotage our efforts. And with optimal insulin levels, you can really eat just about as many (healthy, non processed) carby calories as you can stomach and still be pleased with yourself.
 

Kate

Member
Remy,
You likely understand all this better than I. I have eaten a severely restricted diet, ten foods, for 4 years. Three doctors were worried I was starving. It turns out I actually was.
But here is my source and the thrust is a bit different from what you post. http://paleoleap.com/thyroid-a-paleo-introduction/

They acknowledge what you describe and add this:

Thus, metabolic dysregulation caused by insulin resistance can produce thyroid symptoms and contribute to other causes of thyroid disorders. However, it’s also important to note that a diet completely lacking in carbohydrates, especially for an active person, can also cause problems. Although an excess of carbohydrates is by far more common in modern society, the dangers of a zero carbohydrate diet make it important for anyone – but especially people with thyroid problems – to avoid going to the other extreme to compensate.

This unfortunate side effect of a very low carbohydrate intake is especially intriguing to anyone following a Paleo diet, since Paleo meals tend to be much lower in carbohydrates than the standard American diet. Essentially, if you eat a diet low in glucose, your body thinks that you’re experiencing food scarcity (famine). Responding to the threat of starvation, it slows your metabolism and does everything possible to conserve precious glucose for your brain: reproductive function and athletic performance are nice, but if your brain isn’t getting the nourishment it needs, they won’t do you any good.

Since the thyroid is responsible for the rate of your metabolism, it is obviously a very important part of this response. But the hormonal changes involved also affect thyroid function because the liver needs glucose to convert T4 to T3. When all available glucose is being conserved for your brain, this process must be temporarily put on hold. Moreover, one of the essential functions of T3 is to transport glucose into other cells: this also has to stop to save glucose. Thus, in a period of glucose deficiency, T4 is instead converted into the inactive form reverse T3 (rT3), which does not transport glucose into cells.

Thus, a low carbohydrate diet (or a starvation diet of any kind, including an eating disorder) can cause something called Non-Thyroidal Illness Syndrome or Euthyroid Sick Syndrome (a name that literally means “healthy thyroid sick syndrome”), a problem where your thyroid gland is functioning normally, but your thyroid hormones are not produced in the proper proportions. This causes all the symptoms of hypothyroidism even with a healthy thyroid – clearly an outcome most of us want to avoid.
 

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