THE DIET for ME/CFS?

[Cort]

It Appears that there seems to be something of a consensus about the right kind of diet for ME/CFS.

Check out Dr. Myhills low allergen, low glycemic index diet Stoneage Diet:

• Any meats: choose from chicken, beef, lamb, pork, turkey, duck, 'game' meats such as venison, pheasant, goose etc. Bacon and ham. Salami. Liver, kidney and offal are fine too.
• Eggs - an excellent source of lecithin (eat soft yolks), which reduces blood cholesterol levels.
• Any fish: salmon, mackerel, cod, haddock (care with smoked fish which often contains dyes). Tinned fish in brine or olive oil is fine. Tinned shrimps, prawns, mussels, cockles etc.
• Any green vegetables
• All salads: lettuce, tomato, cucumber, celery, peppers, onion, cress, bamboo shoots etc.
• French dressing: make your own from olive oil, lemon juice, garlic, mustard.
• Any low CHO fruit: apple, pear, orange, grapefruit (no sugar!). Berries are excellent. Seeds: sunflower, poppy, sesame.
• Nuts: peanut, brazil, hazel, cashew, pistachio, walnut etc.; nut butter spreads, tahini (sesame seed spread).
• Use cold pressed nut and seed oils liberally such as sunflower, olive, sesame, grapeseed, hemp. linseed, rape and so on.
• Soya products
• Spices and herbs: chilli, cumin, ginger, coriander, pepper, cloves etc
• Herbs, salt (ideally Solo - a sodium reduced sea salt), olives, pork scratchings
• Allowed drinks in the day Bottled or filtered water

In the evening you can eat all of the above, plus modest amounts of higher GI foods

• Rice and potato e.g. rice cakes or puffed rice from health food shops.
• Root vegetables - carrots, parsnip, turnip, celeriac
• Specific grains: millet, buckwheat, sago, quinoa.
• Some high carbohydrate fruit: banana, avocado, grapes, melon
• Dried fruit: sultana, apricot, prune, raisin, fig, date etc
• Pulses: lentil, butter beans, chick peas, flagolets etc
• Mixture of nuts, seeds, dried fruits
• Arrowroot flour: for thickening gravies
• Diluted fruit juice: Grape juice, pineapple juice, apple juice, tomato juice - best drunk diluted.

Here's Dr. Natelson's Even More Restrictive Diet

• No; alcohol, Rice, potatoes, corn, bread, cake, deserts, fruits, carrots, beets, tomatoes, beans
• Yes: meat, green leafy vegetables, eggs, low-fat dairy, soy products, eight glasses of water a day
  
  Then there's a kind of generic Leaky Gut Diet
  
  • Low carbs
  • Increased vegetables
  • Reduced or no fruit
  • High meat intake
  
  They're all low carb, high vegie, low fruit, high meat diets. Is this THE Basic Diet for ME/CFS?

 

[Jody]

Cort,

Can't speak for anyone else but it sure is the one that works best for me these past 7 years.

 

[Frank]

I think Myhills diet has a lot of good to it. But i personally think there to much emphasis on meat,eggs,fish. My references for thinking this is "The china study", Andreas Moritz, Vegetarians, ... We have an impaired digestive system and probably struggle to proces proteins. My take on it is:

• 
  Limit animal food intake
  Eat small portions
  Eat animal foods that are easier digested
  Eat a lot plant based foods

Another thing i'm doing is using coconut oil for almost all preparations. This is a predominant medium chained fat that is claimed to be more easily digested (altough it's not accepted as the rule), plus it has some anti-microbial and healing properties. for more info: http://www.coconutresearchcenter.org/
I'd use olive oil for things like salad and things that are cooked on low temperature (because unsatured fat turns into transfat on high temp)

Anyway in diet there's a balance to find..

Frank

 

[Jody]

S5,

I think the fact that a high protein diet works for some of us, and less protein works for other indicates that there are a number of metabolic types among us.

This is I think true of everyone, not just CFSers. Some people do well on high carb, others on low carb, and yet others on a balance of the two.

What works for you may be different for me. The key is to find what works best for us individually.

 

[Cort]

I agree: you start off on a more or less basic foundation that most can agree with: low carbs, low grains, high vegies, low fruit intakethus sufficient protein and then tweak it from there.

One aspect of Dr. Myhill's diet that I would never agree with is the high fish intake. Eating a lot of fish really effected me - I was having so many weird neurological symptoms that I thought I was doomed. This was also the time my MCS was heading through the roof. As soon as I stopped eating fish the neurological problems (mainly my limbs falling asleep at the top of a hat) started abating.

I'm really surprised that more of her patients don't have this problem with mercury and fish. I guess I must be something of an outlier in this area.

 

[Jody]

Cort,

That must have been really frightening.

It's a sad thing when the foods we eat because we think they are supposed to be healthy for us betray us in such a huge way.

Are you not finding this (possibly to a lesser degree) with whole grains as well? Am I remembering this right?

The so-called healthy fooes that poisons people ... it's shocking.

 

[mojoey]

Cort

I agree. Dr. Klinghardt said in his DVD about heavy metals that there is no longer such a thing as mercury-free fish. My most trusted doctor told me she doesn't believe fish is a significant source of heavy metals. Maybe that is the case for a healthy person, but there cannot be a quantitative comparison like that made when most ME/CFS patients simply cannot detoxify.

I myself am on the stone age diet, and find it to work best for me out of everything i've tried. My doctor told me the blood type diet (after studying it and shelling it to patients for 10+ years) is accurate only for type O's, in which case you do well with high protein. But either way, I think there are definitely different metabolic types. i know several chronic lyme patients that can't otherwise tolerate dairy now tolerate whole milk once it is incubated for a certain amount of time as part of Progurt--the probiotic I use. Whereas for me, even when this milk is completely and utterly denatured, I cannot tolerate it and the end product gives me insufferable constipation/bloating.

 

[Jody]

m0joey,

Which one is the stone age diet? There are so many these days I get them all mixed up. I might be on that one, not sure.

I think there are definitely different metabolic types. Don't know about the blood type thing, as I am type A and do best on the one they say is for Type O.

Just in my own family, most of my kids are carb freaks who don't eat much meat, and prefer chicken over red meat, husband Al does best on less meat than me and a few carbs. I'm the only real carnivore in the bunch.

I think we're pretty much a representation of the various types out there. And if any of us wander out of our individual "type", we feel it.

 

[InvertedTree]

I'm curious if anyone has heard anything about a raw food diet called the 80-10-10 Diet by Dr. Graham. It's a raw food diet consisting of 80% carbs, 10% protein, and 10% fat.

My ME/CFS doctor said this diet has put some people into remission.

I'm doubtful because I thought we needed more protein.

 

[Jody]

Terri,

Good question.

I think that one reason we keep running into brick walls in the search for the "right" diet, is that there is no one right diet for all of us.

I am convinced there are different metabolic types, whatever we want to call them probably doesn't matter. I'm not speaking from any particular theory offered up by this researcher or writer, or that one. My experience though has been that while I thrive (in a CFS kind of thriving way ) on a very high protein and high fat diet, a good friend of mine with FM, for instance, gets more joint and muscle pain from it. She does better with more carbs and less meat. Then you have people like Tony who needs to watch his fructooligosaccharides.

As far as I can see, the best way to determine for yourself which is the best diet for you, is to try some different diets and see how you feel.

 

[Cort]

If healthy pregnant women are supposed to limit their portions of fish because of possible mercury damage to the fetus why would we think any ME/CFS patient - with all their detox issues - should eat fish regularly? I just heard that dolphins - on top of the food chain - have so much mercury in their tissues that they're basically unsafe to eat (not that I would ever consider eating Flipper.) So long as we have power plants we're going to keep filling up the oceans with mercury.

I think Frank makes a good point - eating small meals should be an integral part of any ME/CFS diet plan. If you're trying to build your energy then lying around thunked out (is that a phrase?) for a hour or two trying to digest your food - can't help matters. (I'm not saying its easy to do!)

 

[LifeIsSweet]

Cort, Here we are in 2016. I have severe CFS (yet not the most severe). I think I'm ready to try a diet of some sort, and am trying to figure out which is the best. My friend INSISTS I do a low FODMAP diet, but I'm resistant. I have virtually no gastro, yet many serious neurological symptoms. I'm all but certain my illness was triggered by mercury. ANYWAY, might you have any new insights and be able to recommend a diet protocol I can follow, at least for a couple of months? Then I can go from there.

 

[Timaca]

Well, I'm not Cort but I'll give you my 2 cents worth. I did figure out via an elimination diet that food is really an issue for me. It seems I have a histamine intolerance, a probable benzoate intolerance and I'm allergic to wheat and oats (via percutaneous testing at the allergist's office). I suggest trying an elimination diet and one place to start is to eliminate the top 8 (or 10) food allergens. Here's a link to the top 8. I would also eliminate corn, seeds (eg sesame and sunflower) and yeast. Also get off all possible supplements. This book has been very helpful to me. Here is her website. Here is a post on my blog about food intolerances that you may find of interest. And here's a post about discovering my wheat allergy. There is no one size fits all diet. If you have food intolerances or allergies the foods that trouble you will be different from the ones that trouble me. And even if the same foods bother you and I, the symptoms may be different.

Give it a try! You may find that you feel better. I do! At least until I eat a food that doesn't work for me....... and then I can feel pretty awful again. But at least I'm beginning to understand what is going on!

All the best,

 

[MeSci]

Limiting sodium would appear to be a very bad idea for those of us prone to hyponatraemia, such as myself. The salt poll suggests that perhaps a lot of us have a high requirement for salt.

 

[Aerowallah]

I think Jody makes sensible points that can't be repeated enough. Of all the causes of AF/CFS etc. IMHO this whole low-carb (high protein / high fat) movement has been a last straw / stressor that tipped many into AF -- if the paleo survivor forums are to be believed.

Here we are, low in many adrenal hormones (especially adrenaline), and then we eat low / no carb for breakfast and lunch when the body, which should be at rest and repair, must dip into the adrenal well to make up the energy deficit. Even if you are wonderfully fat adapted it takes hours to derive energy from that source. I'm another who got much sicker faster by being stingy with carbs, when the first few months of healing went much easier with carb re-feeding so the metabolism could have an easy energy source and apply its limited energy stores to repair work and balancing elsewhere.

If epinephrine is something that you are not flatlining with, then low carbing adrenaline release gives temporary relief from fatigue, allergies etc. and can be quite addictive. Paleo and its variations seem to be more of a faith given how little we actually know about our stone age ancestors and how many calories were derived from different food groups at different times. I don't see contemporary primitive societies stinting on carbs when they are available.

But as Jody suggests, the individual should be encouraged to listen to her body and find a supportive balance among the food groups, without being fed a one-size carb calorie count as my naturopath tried to saddle me with in 2013.

Since most of this post dates from 2009, I wonder what the earlier posters would say today. I wonder if Myhills still recommends eating soy...

 

[Deltrus]

You have to be careful with high meats, because if you have a gut infection of ammonia creating bacteria, then you can really increase ammonia levels.

Last week I was taking a lot of magnesium, potassium, and it actually made my gut very alkaline, so I ended up having diarrhea and high ammonia levels.

Very important to:

1. Have a clear upper intestine (through coffee in mornings, greatly increases stomach acid and flushes out upper intestine)

2. Have a good gut microbiome with lactic acid producing bacteria from probiotics. And I've found that acetobacter from apple cider vinegar seems to keep lactic acid from getting too high.

So you need food that will slowly keep your gut microbiome activated, but you can't take food which ferments so fast that bacteria can reach up into the upper intestine to get to it. I like sources of resistant starch such as day old potatos / rice. Potato starch didn't work for me.

I also find milk is actually very good when I'm on a b12 methylation protocol, as it is super high in potassium and phosphorous which make up a large amount of ions in cells. Thus, they are very important for healing. Potassium in particular is very hard to supplement because it makes your gut alkaline and is also corrosive.

Spoiler: Cellular ion concentrations

 

[u&iraok]

Wow, this diet is EXACTLY what I do, that I feel best at! And I can only have the carbs at night just like it says. Here's a typical day for me:

BREAKFAST: nuts and an apple, sometimes protein powder
LUNCH: Soft-boiled eggs, vegetables or salad, orange or berries
DINNER: Chicken, beef, salmon or sardines, rice or other grain, vegetables, fruit
SNACK: Dried fruit, popcorn, a little dark chocolate or a sugar-free/white flour-free desert like homemade banana bread.

Good oils included. Eat a lot of avocados and olives too. Dressing is good oil, apple cider vinegar, black pepper, and either soy sauce and toasted sesame oil with ginger and garlic, or coriander and cumin and salt.

I often say, it's not that this diet helps me, it's that I NEED this diet to not be sicker. But I love that I love healthy food. Salads make me salivate, lol.

I used to have a need for red meat every day but now I don't anymore.

Limiting sodium would appear to be a very bad idea for those of us prone to hyponatraemia, such as myself. The salt poll suggests that perhaps a lot of us have a high requirement for salt.

Yes, I noticed that on this diet there is no added sodium and that sea salt and other healthy salts are lower in sodium than processed salt, so I drink salted water. If I get low in sodium I get a certain headache so I just take a teaspoon of salt and the headache goes away. I drink and drink and drink small amounts of water constantly all day. Works better for me than big glasses of water periodically.

 

[Aerowallah]

"I can only have the carbs at night just like it says."

You are eating carbs for breakfast, carbs for lunch, and snacking on carbs. That's good!

 

[Butydoc]

Hi Cort,

Most of the suggestions seen on this thread suggest a low glycemic diet with low or no gluten or dairy products. Before the Paleo and Atkins diet, Barry Sears published his zone diet which is the precursor to the above diets. A very interesting read. After two weeks on his diet, you loss your desire for sweets. Like most of the restrictive diets, easier to understand than to follow.

Best,
Gary

 

[Aerowallah]

Cort, I would be resistant, too. You have your own unique imbalances. Don't take on someone else's faddish protocol. Get some allergy tests, keep a food log, use a pulse meter for food reactions--but listen to your body. Anything "difficult to follow" translates into more stress when you want to be in a parasympathetic response mode. If you have symptoms then you might want to start by eliminating the usual suspect foods and food groups (many covered by the low FODMAP diet, some not) and slowly reintroduce them, keeping in mind it can take weeks for immune factors to form and sensitivities to manifest. Listening to your body and going low and slow is the very best advice I ever got. Sometimes deceptively easy advice like this can be difficult to follow, but can be the lessons of a lifetime. Lurching from one diet or pill protocol to the next just sets up more imbalances your metabolism must cope with. Stress responses from detox and poor liver clearance can also make temporary sensitivities of food groups high glutamates and histamines--neuros that are also produced by our stress response.

Even if you eat a 100% junk food diet--go off it slowly. Your body needs time to adjust its metabolic pathways.