In defence of diet and lifestyle

Wishful

Senior Member
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Alberta
Diet discussion is a sort of taboo in ME/CFS.

Is it? I haven't noticed that. Claims that "diet x will work for everyone!!!" aren't appreciated, since we haven't seen any evidence supporting such a thing. However if someone says that grapeseed oil gave them a benefit, or that avoiding <whatever food> helped, I generally accept that. I generally don't give the same diet a try, since the likelihood of it working the same way for anyone else is fairly small.

Claiming that "diet is the one true answer" is no different than claims for a drug or technique. It's not "the one true answer" until it's proven in large numbers of people.
 

L'engle

moogle
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Canada
Even a healthy person is going to feel better on an optimal diet. Healthy people can often afford to feel less than their best by eating terrible food. For a sick person however, dietary habits that make even a mild improvement are likely to be worthwhile. And some people are healed immensely by diet, especially in the digestion symptoms subset. It makes sense to try out different diets if one can afford to and can manage it energy-wise.
 

Wishful

Senior Member
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Alberta
Even a healthy person is going to feel better on an optimal diet.

What is an optimal diet? Is that whatever the government agency recommends, with x servings of fruit, vegetables, etc? What about people with allergies or intolerances?

My present diet is far from optimal, due to all the foods and food groups that I've learned to avoid. Switching to whatever the experts feel is optimal for normal humans would make me feel worse.
 

Hip

Senior Member
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18,133
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.

Yes but if I remember correctly, you have the COPD lung condition, which can produce fatigue and exercise intolerance similar to ME/CFS.

I believe your remission was from COPD, not ME/CFS.

Therapies which benefit COPD may not benefit people who have ME/CFS.

So on a forum intended for ME/CFS patients, it would be a good idea to make clear that the illness you gained remission from was COPD.
 

pamojja

Senior Member
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Austria
So on a forum intended for ME/CFS patients, it would be a good idea to make clear that the illness you gained remission from was COPD.

I always made it clear, that my remission from symptoms of ME/CFS - in particular constant PEMs due to still working part-time - where most likely secondary to my PAD walking-disability. Even from my introduction thread years ago onward. Just as other members here, who can trace their symptoms, for example to cancer.

From COPD stage1 I got a diagnosis only - no symptoms beyond a 1-year lasting 'chronic' bronchitis.

So properly dated without the artifact of diagnosis:

Start of walking disabilty - 2009
- Remission from bronchitis - 2013,
- remission from walking-disability - 2016,
- finally from constant PEMs - 2019

So COPD remission, if it was not a bronchitis only, with already 6 years in between remissions, is the most unlikely.

Of course, I prefer to see the body as a whole of interactive systems, my lung-health was as important as my even worse liver, kidneys, thyroid, endocrine metabolism, inflammation, deficiencies and etc. markers and symptoms.

All of that in much better shape, what immetiately occured before PEMs remission was:
- Only root-canal treated tooth extracted,
- nightly LDN more consistent above two milligrams,
- regular Mg-sulfate infusions against my Mg-deficiency.

So clearly nothing effective against COPD stage1, which labeling I still carry after a pulmological check last year, alledgedly improved and again worsened over the years. But symptoms-free for ten years now.

Since especially the metabolic side of my cardiovascular, lungs, kidneys, endocrine system where so fundamental to my worst disabilty of not being able to walk at all, it is of course most likely that diet indeed played a very important supporting factor for all three remissions. One after the other gradually occuring, including setbacks, in the couse of many years.

Yes but if I remember correctly,..
I believe your remission was from COPD, not ME/CFS.

Even in this thread at the very first I said:

So I made my bet on survival only. However, it actually did work unexpectedly much much better, with years of efforts in life-style changes and comprehensive supplementation alone, to experience remission from the walking disabilty (and later secondary PEMs). With a condition considered mercylessly progressing and non-reversible by standart of care.
(emphasis added now)

PEMs remission would be the icing of the cake, if I would eat such. COPD was and still is on paper only, except the a decade ago passed one-year bronchitis.

In my case many more body systems were involved with my symptoms and disabilties than only one, beside being the least plausible one.

COPD lung condition, which can produce fatigue and exercise intolerance similar to ME/CFS

I disagree that fatigue and exercise intolerance would be the same as postexcertional fatigue.
 
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L'engle

moogle
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Canada
What is an optimal diet? Is that whatever the government agency recommends, with x servings of fruit, vegetables, etc? What about people with allergies or intolerances?

My present diet is far from optimal, due to all the foods and food groups that I've learned to avoid. Switching to whatever the experts feel is optimal for normal humans would make me feel worse.

The optimal diet is going to vary by individual, some times being opposites for one person or another. But I think we can all agree that sub-optimal diets exist. Drinking a liter of pop and eating cookies for dinner everyday is, sooner or later, going to make a person feel worse than if they took the time to learn which foods make them feel best.
 
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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.
Discussion of exercise as a therapy for ME/CFS is even more taboo than discussion of diet, I've found. The paradox is that although exercise is extremely beneficial for people without ME/CFS, for people with ME/CFS it is damaging. That makes it very hard for most people to understand even what ME/CFS is: the disease defies what is regarded as a basic and unquestionable tenet of health science. But the fact that exertion is overwhelmingly damaging for people with ME/CFS doesn't mean that specific kinds and volumes of exercise would not be therapeutic for people with ME/CFS. There is a problematic absolutism on both the side for and against exercise in cases of ME/CFS.

I have found very small amounts of HIIT to lessen symptoms. But that is a very specific form of activity and I need to do it at very specific volumes adjusted to my condition at the time. If I do slightly too much, or I need to something later that day I had not budgeted for, I end up damaging myself. Also, if a person with ME/CFS has sufficient energy for some exercise, then doing whatever they can would presumably improve their overall health (even if it does not directly affect the ME/CFS).

As for diets: I've tried loads of them for long periods and found that there are things that make me worse (high glycaemic loads is the main thing), so I do better avoiding those things. I suspect people with ME/CFS are, on average, much less tolerant of high glycaemic loads than the rest of the population. But beyond avoiding the stuff that causes damage, I doubt there is a specific plan of nutrition that would generally improve ME/CFS.
 
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YippeeKi YOW !!

Senior Member
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Second star to the right ...
In conclusion, when answers start to come, they might be a format some sufferers don't find appealling. It might not be an experimental injection, or a tablet, or a surgery. Most importantly, research into solutions that don't take those forms is valid for a disease with the characteristics ours has.
Your whole post is thoughtful, smart, well-thought-out, concise, and instinct tells me that it's a lot closer to right than anything else Ive read lately.

Thank you for it !!!! I'll be taking it in small bites because .... the brain thing, y'know :xeyes::xeyes::xeyes: .
 

Wishful

Senior Member
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6,063
Location
Alberta
The paradox is that although exercise is extremely beneficial for people without ME/CFS, for people with ME/CFS it is damaging.

One way to explain that to other people is the analogy of a shattered leg bone. Going jogging with a shattered bone would cause more harm than benefit. I suppose the problem then becomes convincing people that ME really is analogous. "But you look healthy." You could explain about PEM probably involving cytokines, which result in that 'flu-like feeling' that also has physical effects.

But the fact that exertion is overwhelmingly damaging for people with ME/CFS doesn't mean that specific kinds and volumes of exercise would not be therapeutic for person with ME/CFS.

In my 20+ years of ME, I've gone through periods of less activity and also more activity. I've done 2.5 km walks three or more times a day for months, with additional arm exercises while I walked ... and it didn't seem to make any significant difference in how healthy I felt. I still do my walks, because I believe that it does reduce risk of future health problems, but my experience is that daily exercise doesn't make a significant difference in energy levels or other aspects of "feeling healthier".

I suppose my daily walks, or periods of significant exertion such as digging soil or handsawing firewood, does maintain my endurance, and without it, I'd have trouble if I had to do such activities in an emergency.
 

GreenEdge

Senior Member
Messages
679
Location
Brisbane, Australia
Behavioral Characteristics and Self-Reported Health Status among 2029 Adults Consuming a “Carnivore Diet”

Background
The “carnivore diet,” based on animal foods and excluding most or all plant foods, has attracted recent popular attention. However, little is known about the health effects and tolerability of this diet, and concerns for nutrient deficiencies and cardiovascular disease risk have been raised.

Objectives
We obtained descriptive data on the nutritional practices and health status of a large group of carnivore diet consumers.

Methods
A social media survey was conducted 30 March–24 June, 2020 among adults self-identifying as consuming a carnivore diet for ≥6 mo. Survey questions interrogated motivation, dietary intake patterns, symptoms suggestive of nutritional deficiencies or other adverse effects, satisfaction, prior and current health conditions, anthropometrics, and laboratory data.

Results
A total of 2029 respondents (median age: 44 y, 67% male) reported consuming a carnivore diet for 14 mo (IQR: 9–20 mo), motivated primarily by health reasons (93%). Red meat consumption was reported as daily or more often by 85%. Under 10% reported consuming vegetables, fruits, or grains more often than monthly, and 37% denied vitamin supplement use. Prevalence of adverse symptoms was low (<1% to 5.5%). Symptoms included gastrointestinal (3.1%–5.5%), muscular (0.3%–4.0%), and dermatologic (0.1%–1.9%). Participants reported high levels of satisfaction and improvements in overall health (95%), well-being (66%–91%), various medical conditions (48%–98%), and median [IQR] BMI (in kg/m2) (from 27.2 [23.5–31.9] to 24.3 [22.1–27.0]). Among a subset reporting current lipids, LDL-cholesterol was markedly elevated (172 mg/dL), whereas HDL-cholesterol (68 mg/dL) and triglycerides (68 mg/dL) were optimal. Participants with diabetes reported benefits including reductions in median [IQR] BMI (4.3 [1.4–7.2]), glycated hemoglobin (0.4% [0%–1.7%]), and diabetes medication use (84%–100%).

Conclusions
Contrary to common expectations, adults consuming a carnivore diet experienced few adverse effects and instead reported health benefits and high satisfaction. Cardiovascular disease risk factors were variably affected. The generalizability of these findings and the long-term effects of this dietary pattern require further study.
 

Andryr

Senior Member
Messages
140
Location
Ukraine
A total of 2029 respondents (median age: 44 y, 67% male) reported consuming a carnivore diet for 14 mo
adults consuming a carnivore diet experienced few adverse effects and instead reported health benefits and high satisfaction
So those who felt badly on carnivore diet did not participate the study:rofl:
 

GreenEdge

Senior Member
Messages
679
Location
Brisbane, Australia
So those who felt badly on carnivore diet did not participate the study:rofl:
Yes, exclude the newbies that have no proven track record. The requirement was that you had to be carnivore for at least 6 months. What can we learn from those who have been successful? What do they have in common?

To find out, click on the title link of the my previous post and read into the detail yourself.
 

GreenEdge

Senior Member
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679
Location
Brisbane, Australia
The Sydney Morning Herald said:
How the Sugar Industry Shifted Blame to Fat

The sugar industry paid scientists in the 1960s to play down the link between sugar and heart disease and promote saturated fat as the culprit instead, newly released historical documents show.

The internal sugar industry documents, recently discovered by a researcher at the University of California, San Francisco, and published Monday in JAMA Internal Medicine, suggest that five decades of research into the role of nutrition and heart disease, including many of today’s dietary recommendations, may have been largely shaped by the sugar industry.

"They were able to derail the discussion about sugar for decades," said Stanton Glantz, a professor of medicine at UCSF and an author of the new JAMA paper.

The documents show that a trade group called the Sugar Research Foundation, known today as the Sugar Association, paid three Harvard scientists the equivalent of about US$50,000 ($66,000) in today's dollars to publish a 1967 review of sugar, fat and heart research. The studies used in the review were hand-picked by the sugar group, and the article, which was published in the prestigious New England Journal of Medicine, minimised the link between sugar and heart health and cast aspersions on the role of saturated fat.

The Harvard scientists and the sugar executives with whom they collaborated are no longer alive. One of the scientists who was paid by the sugar industry was D. Mark Hegsted, who went on to become head of nutrition at the US Department of Agriculture, where in 1977 he helped draft the forerunner to the federal government's dietary guidelines. Another scientist was Fredrick J. Stare, chairman of Harvard's nutrition department.

In a statement responding to the JAMA report, the Sugar Association said the 1967 review was published at a time when medical journals did not typically require researchers to disclose funding sources or potential financial conflicts of interest. The New England Journal of Medicine did not begin to require financial disclosures until 1984.

The industry "should have exercised greater transparency in all of its research activities," the Sugar Association statement said. Even so, it defended industry-funded research as playing an important and informative role in scientific debate. It said that several decades of research had concluded that sugar "does not have a unique role in heart disease."

The association also questioned the motives behind the new paper.

"Most concerning is the growing use of headline-baiting articles to trump quality scientific research," the organisation said. "We're disappointed to see a journal of JAMA's stature being drawn into this trend."

But even though the influence-peddling revealed in the documents dates back nearly 50 years, the revelations are important because the debate about the relative harms of sugar and saturated fat continues today, Glantz said. For many decades health authorities encouraged Americans to improve their health by reducing their fat intake, which led many people to consume low-fat, high-sugar foods that some experts now blame for fuelling the obesity crisis.

"It was a very smart thing the sugar industry did because review papers, especially if you get them published in a very prominent journal, tend to shape the overall scientific discussion," he said.

Hegsted used his research to influence the government's dietary recommendations, which emphasised saturated fat as a driver of heart disease while largely characterising sugar as empty calories linked to tooth decay. Today, the saturated fat warnings remain a cornerstone of the government's dietary guidelines, though in recent years the American Heart Association, the World Health Organization and other health authorities have also begun to warn that too much added sugar could increase cardiovascular disease risk.

Marion Nestle, a professor of nutrition, food studies and public health at New York University, wrote an editorial accompanying the new paper that said the documents provided "compelling evidence" that the sugar industry initiated research "expressly to exonerate sugar as a major risk factor for coronary heart disease."

"I think it's appalling," she said. "You just never see examples that are this blatant. The amount of money they were paid to do this is staggering."

Nestle noted that efforts by the food industry to shape nutrition science continue today.

Last year, an article in The New York Times revealed that Coca-Cola, the world's largest producer of sugary beverages, had provided millions of dollars in funding to researchers who sought to downplay the link between sugary drinks and obesity. In June, The Associated Press reported that candy-makers were funding studies that claimed that children who eat candy tend to weigh less than those who do not.

The JAMA paper relied on thousands of pages of correspondence and other documents that Cristin E. Kearns, a postdoctoral fellow at UCSF, discovered in archives at Harvard, the University of Illinois and other libraries.

The documents show that in 1964, John Hickson, a top sugar industry executive, discussed a plan with others in the industry to shift public opinion "through our research and information and legislative programs."

At the time, studies had begun pointing to a relationship between high-sugar diets and the country's high rates of heart disease. At the same time, other scientists, including the prominent Minnesota physiologist Ancel Keys, were investigating a competing theory that it was saturated fat and dietary cholesterol that posed the biggest risk for heart disease.

Hickson proposed countering the alarming findings on sugar with industry-funded research. "Then we can publish the data and refute our detractors," he wrote.

In 1965, Hickson enlisted the Harvard researchers to write a review that would debunk the anti-sugar studies. He paid them a total of $6500 - the equivalent of $49,000 today. Hickson selected the papers for them to review and made it clear he wanted the result to favour sugar.

Harvard's Hegsted reassured the sugar executives. "We are well aware of your particular interest," he wrote, "and will cover this as well as we can."

As they worked on their review, the Harvard researchers shared and discussed early drafts with the sugar executive, who responded that he was pleased with what they were writing. The Harvard scientists had dismissed the data on sugar as weak and gave far more credence to the data implicating saturated fat.

"Let me assure you this is quite what we had in mind, and we look forward to its appearance in print," Hickson wrote.

After the review was published, the debate about sugar and heart disease died down, while low-fat diets gained the endorsement of many health authorities, Glantz said.

"By today's standards they behaved very badly," he said.

Source: New York Times
 

Viala

Senior Member
Messages
704
However I think the point is really important: There's resistance out there to the idea that this disease may be improved or even cured by changes to diet and exercise. And that is dangerous for us.

Even if diets don't work the same for everyone we should still write about each and every success, we don't know what information might lead to a solution that could help many.

I have definitely seen changes in my energy levels on different diets. I was on a low carb and keto diet for a long time, then I felt better after switching to a high carb and lower fat diet. Now I notice that this diet isn't as good as it was in the beginning, same as keto, so I've changed it again. Some diets like keto significantly alter the microbiome and results may be seen only after a few months, if a diet works awesome in the beginning it doesn't mean that it is good or healthy long term. It's not always easy to say what exactly worked, but there is a lot of information to gather in this process.

I think though that the problem you described is caused by the fact that our society is becoming more emotional and less rational in general, which I believe isn't happening just by itself. Social media and their beneficiaries thrive on drama and younger generations are raised this way. A lot of people think through associations now instead of using logical reasoning and don't see any arguments in between, 'if someone likes this and this political party/diet/music then he must be x/y/z, nothing else', it creates a tunnel vision and perception which indeed can be detrimental. That's why I prefer to stay opened to any kind of treatment that is safe in general, because honestly, we never know.
 

GreenEdge

Senior Member
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679
Location
Brisbane, Australia
I have definitely seen changes in my energy levels on different diets. I was on a low carb and keto diet for a long time, then I felt better after switching to a high carb and lower fat diet. Now I notice that this diet isn't as good as it was in the beginning, same as keto, so I've changed it again...
Spiking blood glucose damages mitochondria - the result is having less energy.

Jessie Inchauspé, has the blood glucose spiking problem sorted. In her book: Glucose revolution : the life-changing power of balancing your blood sugar, she explains 10 scientifically proven diet hacks to improve health without changing what you eat.

In the following video she tells her life story and explains the 10 hacks she found in the scientific literature and tested on herself using a continuous glucose monitor (1hr 36min):


Shorter videos: YouTube: Glucose Goddess
 

GreenEdge

Senior Member
Messages
679
Location
Brisbane, Australia
In 2014, Professor Tim Noakes was reported to the Health Professions Council of South Africa for giving unprofessional dietary advice. He was advocating a low-carb, high-fat diet… in a tweet. What followed was a four-year legal process of Kafkaesque proportions. Should a top-level scientist have his life and legacy ruined by a tweet? And is there anything wrong with a low-carb diet in the first place? Fortunately, Professor Noakes is a fighter, and he was certainly not about to give up. Here’s the story of Noakes’ fascinating multi-year struggle, with interviews of people who participated, and video from the court case, in a Diet Doctor mini documentary.

They tried to silence Dr. Gary Fettke simply for trying to help his patients eat better and improve their health. Fortunately they failed. Now Dr. Fettke, along with his wife Belinda, has made it his mission to uncover the truth behind the anti-meat establishment and much of what he has discovered is shocking. He continues to work as an orthopdeic surgeon, but he sees a better way to helping those who are obese or suffer from diabetes- LCHF. Or as he calls it, real food nutrition. Diet Doctor interview with Dr. Gary Fettke.
 
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