In defence of diet and lifestyle

[Murph]

Offering some examples where diets were effective treatments is not proof that diets will work for ME

That's not my claim. You know it's not my claim. My claims are: 1. they should be included in the possibility space. 2. PWME are opposed to that idea because of various ways of thinking about diet that aren't quite right.

I'll place magic healing diets in the same category as magic healing crystals.

This is exactly the sort of conclusion I'm seeking to change with this thread. You don't have to rate diet/lifestyle as equally likely to work as a tablet, surgery, dialysis, injection, etc. But diet is a genuine treatment for many diseases, including diseases with a metabolic aspect. And me/cfs is likely to have a metabolic aspect.

 

[GreenEdge]

@Wishful - How would a diet work for one individual and not another?

We are all the same species with almost identical genetics. There are some localized genetic adaptations; for example Asians are more adapted to eating mostly rice for substance. Europeans more adapted to diary. These local adaptations relate to carbohydrate metabolism. To date no variance has been found related to fat metabolism.

Have you ever seen a group of one species of animal eating something and near by another group of the same species eating something completely different? If that were to happen, they'd be different species.

 

[Wishful]

We are all the same species with almost identical genetics.

"Almost" is not "absolutely". Not only do we vary in the combinations of various sections of our DNA, we vary in how they get expressed as we develop, due to environmental and other factors. Otherwise we wouldn't vary in terms of allergies, physical attributes (strength, reflexes, etc), susceptibility to diseases, etc.

Some people live on a diet of bovine meat and blood, some live on a seafood diet, some on a vegetarian diet. These groups would not respond the same to some other particular diet. If we all respond the same to the same diet, why am I intolerant of fibre? For another example, are two people guaranteed to have beneficial effects from a diet mainly of wheat? I expect people with diabetes and gluten intolerance will not respond the same as someone without those disorders, despite their DNA being "almost identical".

 

[Wishful]

1. they should be included in the possibility space.

They are. People will make the same argument for homeopathy, GET/CBT, and Reiki. The question is where to place them in the possibility space. That's a matter of personal judgement. If there's strong evidence for a treatment to work on ME, it rates higher. If there's significant evidence that it doesn't work (lots of people have tried it without success), it rates lower. If the treatment works on one disease, that doesn't affect its potential for some other completely unrelated disease.

Is there any disease that doesn't have a metabolic aspect? Since all cells work via metabolism, anything that involves cells does too. That doesn't mean that all metabolic functions are affected by minor changes in diet. Major changes would be along the lines of complete elimination of carbs, or protein or other nutrients. A diet could prevent some aspect of ME's mechanism, but it's also fairly likely to also cause fatal harm (other cells can't function) rendering it useless as a treatment. Increasing a nutrient might not work either, due to various mechanisms that prevent it from increasing in the place where it would be needed to affect ME.

I definitely agree that foods and diets can affect ME. However, I disagree that it is a likely treatment for more than a few people, and even then it would probably be one specific diet for one specific individual, and unlikely to be found by theory. No: "You have these symptoms, so you need to eat 1.1 kg of kiwis, 600 gms of organic chicken feet (boiled, not fried), and 300 gms of crickets (rare Japanese subspecies)." If you somehow stumble upon that magic combination working for you (Why would you try that in the first case??? ), great, but I think it highly unlikely that it would work for anyone else.

I support the idea of trying different foods and diets and hoping to find something that reduces one or more symptoms, or at least finding things to avoid. I do think that the chances of finding something is high enough to be work trying. I feel the chance isn't high enough to justify trying to obtain new foods that are expensive or difficult to get, but that's personal judgement. I'm certainly glad that I tried a dinner with cumin in it, which led to curing my PEM. I don't support the belief that there's a magic diet out there that will cure ME for everyone, and that the search for it deserves a big share of the limited funding. If a significant number of PWME report that a <whatever diet> is an effective treatment for them, then it deserves more funding, but not before those reports come in.

 

[Wishful]

I think to properly evaluate any diet you should give it 90 days.

I'll wait until enough people report success. There are just too many possible treatments of the "it takes 90 days (or whatever)" to show results to give them all a try, especially when there's a lack of evidence to support it working. Are you ready to try a "eat nothing but live caterpillars" diet for 90 days? Can you prove that it won't work for you, without trying it? If it hasn't worked after 90 days, are you sure it won't work if you continue for another 10 days? 30 days? 3000 days? It all comes down to personal belief in the potential treatment. I don't have enough belief in any diet to try it for 90 days. FWIW, all the treatments that did work for my ME showed results within 24 hrs, except prednisone, which took 5 days before abruptly switching my ME off (temporarily).

 

[pamojja]

I definitely agree that foods and diets can affect ME. However, I disagree that it is a likely treatment for more than a few people,..,
.. great, but I think it highly unlikely that it would work for anyone else.

Diet most likely beats the poor success of the block-buster drug-class of statins against CVD, with only 1 in 83 lifes saved after 5 years, by far...

There are just too many possible treatments of the "it takes 90 days (or whatever)" to show results to give them all a try, especially when there's a lack of evidence to support it working.

An easy and sensible approach I find the one from the late pancreatic cancer doc Nickolas Gonzales. Differing diets are at the outset not single ingredients experiments. https://thegonzalezprotocol.com/heart-disease-fat-sugar/

..People often ask me, “well that sounds great, but how do I know what diet I need to follow?” I have diagnostics tests that give me that information, and frankly, after nearly 30 years of practice, I can often tell what diet a patient needs within a few minutes of meeting just from experience. But even people who never make their way into my office can to a large extent come to some sensible conclusion – if you find yourself craving fruits, vegetables, carbs, and are repulsed by the thought of fatty red meat, the chances are – in general of course- that you need a plant based diet for optimal health. If you crave bacon, and fat, etc, but have little interest in fruits and carbs, I often find your body needs meat. My tests confirm all this in my practice, but food cravings often tell us a lot (yes, I know we all crave chocolate, but I hope you understand the general idea).

I've been vegetarian for thirty years. With my diagnosis fourteen years ago I added daily eggs and weekly fish back in. Which assisted my remission. Only much later organic grown (also organ) meats. I'm still ashamed to admit, but it always gives me an endorphin-flash, eating occational meat.

Once I dotted down the three different types most likely from a interview with him:

Dominant sympathetic types: Typ ‘A’ personalities, disciplined; mostly solid cancers; do good on much plant based foods: fruits, vegies, seeds, grains, nuts, plant based oils: hemp, flax; Vitamin B1, B2, B3, 8:1 ratio magnesium to calcium, high vitamin C & D; but not on much meat protein, no b12, no choline, no B5, no zinc, no selenium, no fish oil. Yes to beta Carotene, chromium, folic acid, riboflavin, thiamin,& niacin

Parasympathetic: types are rather creative with unconventional ‘formal’ education; mostly blood-based cancers; do good on lots of meat and a ketogenic diet, saturated fats, fats from fish oils, Calcium 10-15 ratio to magnesium (high magnesium causes depression), Vitamin B12, B5, Choline; not as good on grains or seed. Need zinc & selenium, not good with other large Vitamin B doses.

Mixed or balanced types: suffer rather from allergies and fatigue.

By gut-feeling and my ancestors I'm a mixed type. But denied the obvious for thirty years. With many insensitivities, of course, it gets much more complicated, But its neverless the direction for finding a better diet.

However, overall I do agree, nutritional therapy is in most cases a multi-thronged approach in cases it worked. Beside a really clean diet, determination, intuition, supplementation, along with emotional and spiritual work, accorting to the severity of one's condition.

I'll wait until enough people report success.

Though I came accross the work of Kelly only after my remissions, I can agree with her findings in 'spontanious' remissons cancer patients, there being nine assisting factors present in allmost all of them: https://radicalremission.com/about/

The Radical Remission Project was born out of Kelly A. Turner, PhD’s dissertation research on Radical Remission (RR). As Dr. Turner began to research Radical Remission as part of her PhD from the University of California at Berkeley, she realized that the opinions of two groups of people were typically missing from the 1,000+ cases of Radical Remission published in medical journals – 1) the survivors themselves, and 2) alternative healers. Because conventional medical doctors do not currently have an explanation for why RR’s occur, Dr. Turner decided to ask these two ignored groups what they thought could lead to a Radical Remission. Her dissertation research involved a year-long trip around the world during which she traveled to 10 different countries in order to interview 20 Radical Remission survivors and 50 alternative healers about their techniques for healing cancer. Since then, her research has continued, and Dr. Turner has now analyzed over 1,500 cases of Radical Remission.

I have no doubt about the need for such a comprehensive approach from all directions, for successfuly fighting such serous diseases, at least in my case. Including diet.

 

[GreenEdge]

Dr. Weston A. Price

Dr. Weston A. Price (1870-1948), a Cleveland dentist, has been called the “Isaac Newton of Nutrition.” In his search for the causes of dental decay and physical degeneration that he observed in his dental practice, he turned from test tubes and microscopes to unstudied evidence among human beings. Dr. Price sought the factors responsible for fine teeth among the people who had them–isolated non-industrialized people.

The world became his laboratory. As he traveled, his findings led him to the belief that dental caries and deformed dental arches resulting in crowded, crooked teeth and unattractive appearance were merely a sign of physical degeneration, resulting from what he had suspected–nutritional deficiencies.

Price traveled the world over in order to study isolated human groups, including sequestered villages in Switzerland, Gaelic communities in the Outer Hebrides, Eskimos and Indians of North America, Melanesian and Polynesian South Sea Islanders, African tribes, Australian Aborigines, New Zealand Maori and the Indians of South America. Wherever he went, Dr. Price found that beautiful straight teeth, freedom from decay, stalwart bodies, resistance to disease and fine characters were typical of native people on their traditional diets, rich in essential food factors.

Please enjoy what he had to say. You can also read his biography.

 

[GreenEdge]

"Almost" is not "absolutely". Not only do we vary in the combinations of various sections of our DNA, we vary in how they get expressed as we develop, due to environmental and other factors. Otherwise we wouldn't vary in terms of allergies, physical attributes (strength, reflexes, etc), susceptibility to diseases, etc.

Processed foods are making us sick. . But lets ignore that and focus on each individual.

- that's how big pharma , makes enough money to fund research. ​

What is the best diet for humans?_
The diet that shaped our DNA, could have a miraculous ability to heal us?_

Due to commercial interests , the right diet for us is being kept hidden from you.
With an open mind , now seek the truth...

Some people live on a diet of bovine meat and blood, some live on a seafood diet, some on a vegetarian diet.

A Canadian dentist, Dr. Western A. Price who was vegetarian himself, noticed that man was degenerating.
On a quest to save man , he traveled the globe in search of traditional diets_, before data was lost forever.

He did not find one tribe living off a vegetarian diet.

These groups would not respond the same to some other particular diet.

Why not? Are we not all the same species?
Successfully adapting to any one diet , does not mean that diet is best for you.

Have you ever observed 2 groups of the same animal,
eating differently from one another, in the same environment?​

If we all respond the same to the same diet, why am I intolerant of fibre?

Fiber is bad for humans.
We can not ingest it , so how can it be good for you?

Fiber irritates the colon (it is non-essential because carbohydrate is non-essential)

For another example, "are two people guaranteed to have beneficial effects from a diet mainly of wheat?"

Wheat is bad for humans.
Were the ancient Egyptians the first unhealthy peoples on the planet? Notice the bellies of their statues.

I expect people with diabetes and gluten intolerance will not respond the same as someone without those disorders, despite their DNA being "almost identical".

Different disorders, different diseases.
Could it be the "phyto-nutrients?" - Dr. Anthony Chaffee - 'Plants are trying to kill you!'
Same metabolic mayhem.

Good food is medicine_, bad food requires medicine.

 

[GreenEdge]

But it did not work for you long term either, right?
I know you feel better with this kind of diet, congrats with that.
But you aren't cured, are you?

My activity level has improved from 2 to 3.
2— SEVERE: Leave house once a week, concentrate one hour a day.
3— MODERATE: Leave house several times a week, two hours work/activity at home a day.

 

[Wishful]

The diet that shaped our DNA, could have a miraculous ability to heal us?

We didn't evolve with one specific diet. Even if you ignore our pre-human ancestors, early humans spread to different regions, living on different diets, and any diet-specific genes would have traveled back and forth, mixing in with other diet-specific genes. Northern Europeans (and Asians?) evolved the genes that allowed lactose digestion past youth. Does that mean that a dairy diet is good for all humans? Nope. There is no one ideal diet for humans.

He did not find one tribe living off a vegetarian diet.

Animals tend to be a convenient source of protein and fats. Why wouldn't a primitive human not seek out the convenient--and delicious--dinners? That doesn't meant that they couldn't thrive on a vegetarian diet; it just means that in most situations, eating animals increased the chance of reproducing. Note that it doesn't guarantee prevention of post-reproductive period diseases. Evolution doesn't care about our health after that period.

Have you ever observed 2 groups of the same animal,
eating differently from one another, in the same environment?

I honestly can't tell one squirrel from another, so I don't know their eating habits. The ones that discover sunflower seeds beneath the birdfeeder certainly like those. Do any of the squirrels eat more mushrooms than their neighbours? I don't know. I don't even know if they do or don't eat insects or small animals. I do expect there's be some variations. Maybe one baby squirrel got traumatized by a scary looking dried mushroom falling on it, and avoided them ever after. Maybe one squirrel has taste buds wired up to make dandelion leaves irresistible.

Fiber is bad for humans.
We can not ingest it , so how can it be good for you?

We can ingest (swallow) it. AFAIK, the microbiome metabolites are quite important for intestinal health and probably other body functions. After dropping fibre from my diet, my tears changed, possibly due to a lack of propionic acid from fibre. There's also the benefits for avoiding constipation. The good and bad of fibre are debatable, not an absolute "fibre is completely bad for all humans".

Different disorders, different diseases.

Some people claim that the Mediterranean Diet is best for people with heart disease. The pasta and rice in that diet isn't going to be good for people with gluten intolerance or diabetes. If you change out the wheat and rice, it's not the same diet. If the benefit comes from one specific food or ingredient in that diet, whether it's alpha-linoleic acid or a phytochemical in bassicas, then it's not the diet that matters, it's those specific chemicals.

 

[GreenEdge]

Vegan diets don't work. Here's why

A Canadian dentist, Western A. Price who was vegetarian himself, noticed that man was degenerating.
On a quest to save man , he traveled the globe in search of traditional diets_, before data was lost forever.

 

[pamojja]

@GreenEdge , please don't go off-topic and turning it here again a sole meat vs. veggie argument. The original topic in the OP is just too important to discuss with all its rammifications for ME/CFS. And there are already too many meat vs. veggie threads.

Everyone is different, tolerates and needs different foods. Everyone is also adult enough to know from experience and decide responsibly oneself. Personally I hate when diet turn into religious discourse. Be it veggie or meat.

So let's peacefully agree to disagree, and leave this off-topic discussion where it already is.

 

[Wishful]

I expect that most of the "<whatever diet> is the one true diet!!!" claims involve cherrypicking a few people who did well on the diet, cherrypicking and otherwise misapplying some scientific facts or theories to support them, and attacking any evidence that don't support the claims. If you did a proper unbiased statistical study of diets, I expect you'd find that most non-extreme diets provide similar levels of health. There will, of course, be individuals who have different responses to specific diets or foods, but those will be statistical outliers.

 

[GreenEdge]

If you did a proper unbiased statistical study of diets, I expect you'd find that most non-extreme diets provide similar levels of health.

I agree, non-extreme diets provide similar levels of health.

Experts don't currently agree on what is the best diet for human?

What they agree is, the healthiest diets exclude processed foods; and the most extreme diets are the most healthy. Yes, that's right, the best diet is either vegan or carnivore.

 

[Wishful]

What they agree is

The problem is: who is agreeing that those experts really are experts? If they're doing cute youtubes, I'd guess that they're just self-proclaimed experts.

 

[GreenEdge]

Evidence from randomised controlled trials does not support current dietary fat guidelines: a systematic review and meta-analysis
​

Abstract

Objectives National dietary guidelines were introduced in 1977 and 1983, by the USA and UK governments, respectively, with the ambition of reducing coronary heart disease (CHD) mortality by reducing dietary fat intake. A recent systematic review and meta-analysis by the present authors, examining the randomised controlled trial (RCT) evidence available to the dietary committees during those time periods, found no support for the recommendations to restrict dietary fat. The present investigation extends our work by re-examining the totality of RCT evidence relating to the current dietary fat guidelines.

Methods A systematic review and meta-analysis of RCTs currently available, which examined the relationship between dietary fat, serum cholesterol and the development of CHD, was undertaken.

Results The systematic review included 62 421 participants in 10 dietary trials: 7 secondary prevention studies, 1 primary prevention and 2 combined. The death rates for all-cause mortality were 6.45% and 6.06% in the intervention and control groups, respectively. The risk ratio (RR) from meta-analysis was 0.991 (95% CI 0.935 to 1.051). The death rates for CHD mortality were 2.16% and 1.80% in the intervention and control groups, respectively. The RR was 0.976 (95% CI 0.878 to 1.084). Mean serum cholesterol levels decreased in all intervention groups and all but one control group. The reductions in mean serum cholesterol levels were significantly greater in the intervention groups; this did not result in significant differences in CHD or all-cause mortality.

Conclusions The current available evidence found no significant difference in all-cause mortality or CHD mortality, resulting from the dietary fat interventions. RCT evidence currently available does not support the current dietary fat guidelines. The evidence per se lacks generalisability for population-wide guidelines.

 

[Wishful]

I'm not surprised that the "fat is bad!!" claims were exaggerated. Various "powers that be" want easy answers, so if one study shows that fat is bad, people will jump on the bandwagon for their own benefits, leading to a big campaign ... even though the study actually only showed a teeny tiny reduction in deaths; a percentage lower than the margin of error for the testing. The same probably applies to most "reduces heart attack risk" supplements, practices, etc, that offer magic protection for little effort. Fish oil is just the most recent "magic preventative" that lacks actual clinical evidence.

Hmmm, what do you believe makes a big difference in heart attack risk? Obesity, lack of exercise, and excessive stress are what come to mind for me. That's aside from unpreventable factors, such as genetics.

 

[nolongerdiseased]

I can see why there is such a strong gut reaction against diet or lifestyle. If we as a cohort weren't so utterly medically neglected or were believed by society I think there would be less kick back regarding benefits individuals see with dietary changes. But instead we are told constantly that if we would just do yoga and eat healthier then we'd be better. Or that if you buy x magic herb you will be cured.

I personally did see a lot of benefits from a short term, very restrictive diet. And sorry to the carnivores in this thread, but it was vegan. I doubt it really targeted the source of my illness, but consuming a very anti-inflammatory and metabolism boosting diet that cut out all processed food and many sources of sensitivities/inflammation such as gluten and processed sugar, did show real benefits for me over the span of 3 months. But would eating only raw veg and 17 grams of omega 3 a day work for someone with ME who has sensitivities to raw veg, or even gastroparesis? I sure wouldn't think so.

I think it is important to have discussion regarding improvements with diet, like with any treatment, and mention those who have tried that and didn't improve or even got worse because of it. What I dislike more, and what I have been at the receiving end of on other forums, is those who completely discredit you for saying diet has improved your symptoms. I have been told I am full of shit and never had ME because I saw some improvements with quite an extreme diet. Nevermind that I also improved with Abilify and that catching a cold is what actually switched off my ME symptoms, not a diet .

Anyway, although I do see why diet is a sensitive topic I wish some people would hold more space for it and not discredit those who have found improvements from it.

 

[GreenEdge]

Dr. Zoë Harcombe has a PhD in public health nutrition.

In her thesis: 'Should dietary fat guidelines have been introduced?'

she struggles to find anything that is true or evidence based, being taught in the 'conventional' nutritional world.

 

[Murph]

What I dislike more, and what I have been at the receiving end of on other forums, is those who completely discredit you for saying diet has improved your symptoms. I have been told I am full of shit and never had ME ...

Diet discussion is a sort of taboo in ME/CFS. Every culture has its taboos. They have good origins in many cases: at one point the taboo was part of a good rule of thumb, for example. But often as not, taboos outlive their usefulness.