I have followed the diet you describe for a couple of years and while I did see a modest benefit initially, over time this disappeared. Eventually I realised that such a diet starves the gut microbiota and can't be recommended in the long term.
Prior to starting the diet, I was essentially bed-bound (only able to get up for showers and meals) but was able to return to work part-time on a very limited basis at first.
Ketogenic diet makes me feel significantly worse in the short term. It felt like inadequate blood sugar levels. I don't know about the long term because I don't have the discipline to endure it long enough. Also ketosis causes a bad taste in the mouth.
In ME/CFS terms, that is a very good improvement in health: the bed-bound state is severe ME/CFS, and being able to work part or full time is mild ME/CFS.
So it appears that the ketogenic diet shifted you from severe ME/CFS to mild ME/CFS. That is a two-category improvement. Good by anybody's standards.
Are you still following this ketogenic diet after 16 years? Have you ever taken a break from it, going back to a normal diet for a while? If so, did your more severe ME/CFS symptoms begin to return during this break?
@Hip I'm still on the diet. Initially I was diagnosed with insulin resistance, so a low carb diet was sold to me as a way of stabilising my blood glucose levels. I found quite early on that restricting carbs beyond what was recommended made me feel even better. In fact, any hint of a carb except for green vegetables would see my old symptoms return pretty quickly so I have had few incentives to change the diet too much.
Also, my blood glucose and insulin levels were still unsatisfactory, so I ended taking metformin (which has allowed me to relax the diet a little without many consequences).
Although the overall effect is a little hard to quantify because I'm suffering some substantial side-effects from using the Marshall Protocol for suspected Lyme.
Very interesting re coconut oil. I've just put it back into my diet, substituting for some of my beef fat intake.I also read that by consuming a medium-chain triglycerides (MCT) oil such as coconut oil in place of some of the long-chain triglycerides (LCT) that most dietary fats are made of, you can also relax the strictness of your ketogenic diet a bit, because MCTs more readily converted to ketones than LCTs.
I wonder whether eating desiccated coconut might be a good way to get MCT oil, since desiccated coconut is rich in coconut oil (but also a small amount of carbohydrates).
Re coconut, beware that dried fruits tend to be treated with sulfites.
So do you think it would be correct to say that the significant improvements in your health may have come from treating two underlying conditions that you have, ME/CFS and also insulin resistance, using the ketogenic diet?
That is to say, you may have killed two birds with one stone, and this could explain why you had such large leap in health from a ketogenic diet.
I came across a study (can't find it now) in which I think either caloric restriction or restricted carbohydrates in conjunction with metformin was used to create a ketogenic effect. Apparently metformin stimulates the production of ketones.
I also read that by consuming a medium-chain triglycerides (MCT) oil such as coconut oil in place of some of the long-chain triglycerides (LCT) that most dietary fats are made of, you can also relax the strictness of your ketogenic diet a bit, because MCTs more readily converted to ketones than LCTs.
I wonder whether eating desiccated coconut might be a good way to get MCT oil, since desiccated coconut is rich in coconut oil (but also a small amount of carbohydrates). I believe 90% of the calories in desiccated coconut come from its fat content, and only 10% from the carbohydrate content.
I tried the MP for a couple of months, several years ago, to see what effects it might have on my ME/CFS. After a month on the MP, I started to get the light sensitivity reaction, and had to wear sunglasses on sunny days, but that was no big deal. Unfortunately I just stopped the MP after two months, so I don't know what would have happened if I stuck to it for a longer time. I think you have be on it for a few years for to see benefits.
How long have you being on the Marshall Protocol?
This issue might easily be mitigated by taking prebiotics (food for friendly bacteria) with your ketogenic diet. A prebiotic like inulin is low calorie: inulin contains around 1.2 kilocalories per gram, which is pretty low, since ordinary carbs contain around 4 kilocalories per gram
Then for some people it must not be necessary to have the gut flora that thrives on carbohydrates. A lot of people do well on ketogenic diet without the need for probiotics or vitamins. (Ketonic foods don't require additional vitamins for digestion, in contrast to foods like vegetables, fruits and starches)a ketogenic diet omits some very important categories of flora food.
Lots of people come to ketonic diet after years of healthy dieting. The gain in energy is still enormous and the levelling of brain chemistry proven.Setting that aside, I wonder how much of the benefit is simply due to improved diet - ie removing processed food, concentrated sugars, damaged fats etc and eating real food, including more vegetables.
Here we are talking about both, indeed. A true ketonic diet makes the body cells switch onto ketones for energy instead of carbs. It's the mitochondria that change modus.Finally are we really talking about ketogenic diets here (which as I understand are really high in fat to induce ketosis) or low carb paleo which may or may not induce some ketosis.
I am unsure of the mechanism, but I am sure that my insulin resistance is related to or somehow caused by my ME/CFS. I wasn't insulin resistant until after I caught EBV and came down with ME/CFS and, indeed, the doctor that diagnosed me with insulin resistance said it was a very common condition among his ME/CFS patients.
Oral glucose tolerance test (OGTT)
The OGTT measures first and second stage insulin response to glucose. Here’s how it works. You fast and then you’re given 75 grams of glucose dissolved in water. Then they test your blood sugar one and two hours after. If your blood sugar is >140 mg/dL two hours later, you have pre-diabetes. If it’s >199 mg/dL two hours later, you’ve got full-blown diabetes.
As you say, they are finding that many patients need to be on the MP for a long time. The length of time it takes seems to depend upon how long you've been ill, gender (men seem to improve quicker than woman) and age (younger people recover more quickly). I've now been on it (with a few breaks) for around 7 years and have seen pretty significant, but slow, improvement. It is definitely not a quick fix: I spoke to a guy who had CFS/Lyme who is now completely recovered after 11 years on the MP.
If only it were that easy! As many of us found on the Resistant Starch thread, concentrated prebiotic sources are just not tolerable in anything but tiny amounts. I can eat any amount of inulin rich vegetables (and I do) but 1/4 tsp of inulin/FOS causes problems.
Top Foods Containing Prebiotics
Raw Chicory root: 64.6% prebiotic fiber by weight
Raw Jerusalem artichoke: 31.5% prebiotics by weightchicory-2-high1
(NOTE: Jerusalem artichoke is NOT the green globe artichoke you see at the store. It’s a totally different plant.)
Raw Dandelion greens: 24.3% prebiotic fiber by weight
Raw Garlic: 17.5% prebiotics by weight
Raw Leek: 11.7% prebiotic fiber by weight
Raw Onion: 8.6% prebiotics by weight
Cooked Onion: 5% prebiotic fiber by weight
Raw Asparagus: 5% prebiotics by weight
Raw Wheat bran: 5% prebiotic fiber by weight
Wheat flour, baked: 4.8% prebiotics by weight
Raw Banana: 1% prebiotic fiber by weight.
In any case and despite what the manufacturers of inulin supplements would like to convince us, inulin feeds just some of the gut flora. To have a healthy gut a wide range of prebiotics are needed and a ketogenic diet omits some very important categories of flora food.
I wonder if ME/CFS patients should be routinely checked for insulin resistance, especially those with abdominal obesity (like myself). Though when I last checked with a home blood glucose meter, my morning fasting levels were well below 100 mg/dL, usually around 80 to 90 mg/dL when I first get out of bed.
I came across this article on how one might use a blood glucose meter in a simple home test to check for insulin resistance (though it's author Chris Kresser is a bit of an alternative health apologist). He explains the oral glucose tolerance test here:
I am presuming you may be able to do this test yourself at home, simply with 75 grams of glucose and a blood sugar meter.
I would like to try the MP again for longer periods, but I find it hard to motivate myself (and pay for the drugs) if I have to think in terms of say 5 years before I reach significant improvements (which may or may not manifest). And even if you do get better over such a long period, there is always the issue of wondering whether you may just have got better naturally.
If you take a medication that leads to improvements in your ME/CFS symptoms quite quickly (say over weeks or months), and if those improvements also disappear again within weeks or months of stopping that medication, then you can feel quite confident it was the medication that was responsible for the improvements. But when the improvements take place over half a decade, unfortunately it can be harder to link the improvements to the medication.
Another discouraging factor is that I have not seen that many reports of improvements in ME/CFS using the MP. Although I did come across two ME/CFS recovery stories on the inflammation therapy website (inflammation therapy appears to be an offshoot of the Marshall Protocol, but is basically pretty much the same thing).
I did get the impression that even after just two months on the MP, my anhedonia symptoms appeared to improve. So that is motivation to try it again.
Both these doctors agree that the current method of testing for insulin resistance and, indeed, diabetes is flawed because it doesn't take insulin levels into account. For example, my blood glucose results during the glucose tolerance test would be categorised as 'normal'. However, my corresponding insulin levels were many orders of magnitude higher than normal. As they explained it, my body was having to produce enormous amounts of insulin just to keep my glucose levels 'normal'. This is an early warning sign of insulin resistance and diabetes but is not even considered or tested by almost all medical professionals.
I always do insulin levels with my glucose tolerance tests, and frequently discover derangement of inulin response in some of my ME/CFS patients.
Apart from chicory root, which I never see in the market, and Jerusalem artichokes, the only vegetable with a taste I really dislike, I can eat all of the listed foods with impunity.Are you sensitive to any of these foods?
Do you have any good references for the inability of inulin to feed all the friendly bacteria in the gut?
In any case, I don't see why in a ketogenic diet you can't eat a wide range of prebiotics, such as some of the foods listed above that don't have a high carbohydrate content.
Then for some people it must not be necessary to have the gut flora that thrives on carbohydrates.
I've got no explanation but some people do thrive on ketonic diets (which is not a no-carb diet btw). Scientific knowledge about the gut (flora) is still sparce, who knows in which quantity it needs what.Since that almost all of the gut flora this is a bit like saying that it is ok to replace a rainforest with a few monocultures. Personally I'm trying to encourage as much diversity as possible.