In defence of diet and lifestyle

[Murph]

Recently a young mecfs sufferer insisted i was

• insulting her and all people with mecfs,
• demeaning her,
• calling her stupid and
• trivialising the disease

by suggesting we should remain open to ideas when it comes to diet and lifestyle. This was, of course, on twitter - where disagreement on ideas is indistinguishable from deliberate antagonism - and she apparently became distressed by our interaction. I regretted trying to engage.

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.

As far as I can tell this resistance has four causes:

1. Desire for match between disease and cure. A serious disease should require a serious cure: we know they use chemotherapy for cancer and open heart surgery for heart disease, so we have a rule of thumb that the cure and the disease should match.

2. Desire for symmetry between cause and cure. If the disease isn't caused by disordered lifestyle or disordered eating, the idea it could be cured by changes to diet or lifestyle make no sense.

3. We've all tried different diets, if they worked, we'd know by now.

4. People who don't take mecfs seriously push diet and lifestyle changes.

I want to address these in turn.

1. Some very serious fatal diseases can be treated with diet: phenylketonuria, coeliac disease, diabetes, etc.. There is no symmetry whatsoever here between the seriousness of the disease and the apparent triviality of the cure. (oh, you will die by age of 12 months, but not if you don't eat sugar/wheat!).

2. Metabolic diseases are serious and often genetic or autoimmune. But the treatment can be dietary. MECFS seems to have a metabolic component; i will not be at all surprised to find diet as a significant input to the cure: for example, maybe it will be about avoiding certain carbs and at the same time loading up on other types of vitamins or co-factors that will be in short supply if we rely on fatty acids and amino acids as inputs to the citric acid cycle.

What looks like a simple diet change in retrospect will be found only by extremely hard science.

3. I don't doubt someone has found the right diet. But can that person isolate what the cause of their improvement was? Or did they notice they started walking more about the same time and become one of these people who thinks more exercise cured them?!

You only need to look at the history of scurvy: oranges cure it, lemons cure it. Limes don't. Polar bear meat will. So it doesn't have to make apparent sense in prospect. Two million died of scurvy, so its very serious. But after they found the cure for scurvy in the 17th century they later lost it again. it's almost impossible to grasp that, right? we rely on science being additive, gaining knowledge only. But somehow the cure was lost in the 19th century.

https://idlewords.com/2010/03/scott_and_scurvy.htm

The fact a dietary cure for mecfs isn't widely discussed can suggest diet is not of any help. But It might equally suggests the right approach is probably something a bit unusual, nothing as simple as cutting out dairy or gluten or meat, nor going keto (although the anecdotal evidence for keto is very intriguing! might keto plus a few other cofactors be the trick? idk.) . Reality is weird, as they say:

https://slimemoldtimemold.com/2022/01/11/reality-is-very-weird-and-you-need-to-be-prepared-for-that/

And of course if some patients scorn other patients for mentioning improvements from diet changes, fewer such examples will enter the discourse, and we will have less unstructured anecdote to sift for data.

4. When it comes to lifestyle, I think I need to say only one word: pacing. everyone agrees its vital and it's not a medication or a diet change. I think we call that a lifestyle change and so anyone claiming lifestyle changes have no chance of helping us is, I think, crazy.

I also like to cite paolo's study that unexpectedly found infrarred radiation seemed to be lessening his symptoms. https://paolomaccallini.com/2022/09/20/summer-simulation-a-correlation-study/. It maps onto the common observation that some people have a seasonal improvement (but still hate getting hot!). These are suggestions coming from inside the tent. Just because malign and ignorant people suggest diet and lifestyle changes that won't work doesn't make the category wrong.


--
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.

This is he most important reason to make the case. I don't want patients to hate on any scientist who proposes a diet or lifestyle solution if it is supported by evidence. (And to find that evidence they will have to spend hard-earned research money looking for it. )

 

[linusbert]

But somehow the cure was lost in the 19th century.

a lot was lost in the 19th century. or lets put it different, financial interests of pharma lobbys made it forgotten.
with the rise of the pharma era came the downfall of the traditional known and working remedies.

right now we are in the state of: everything which can't be patented by them will be forbidden. in many countries its already forbidden to gather herbs or grow them yourself. we are emerging borderline fascism levels here.

and its always the same game, if you do not have a financial strong lobby group, your group will "die". traditional healing has no lobby, therefore pharma lobby can push whatever they want.

3. We've all tried different diets, if they worked, we'd know by now.
4. People who don't take mecfs seriously push diet and lifestyle changes.

diets and lifestyle. basically thats what all the doctors say. giving some random garbage suggestion and gaslighting the patient.
we are primed to get furious when someone makes those suggestions, because usually they are garbage.
also there are scientific big studies like PACE who were corrupt and wrongfully interpreted.

though of course diet has a big influence on health and maybe might even fix cfs for some people but the credibility in studies and medical community is below freezing.

right now we are at the point that studies and suggestions can't be trusted anymore.
we need to try everything for ourselves to actually see if its working.


many know this actually, but they still treat publications like if they had credibility and this one study must be correct, right?
but the truth is, even though many of us read those publications, most of us cannot evaluate if the study was conducted rightfully and data was interpreted correctly or the study was manipulated. this requires folks who are strong in statistics and know how scientific methods work and maybe even had published some studies themselves. most medical doctors are not able to do this. they barely have any statistics. usually they ask a math or psych student or doctor to help them with study design and statistics and methods.


right now science in the west is corrupted and tainted. most studies are garbage or done wrong. medical journals who publish those studies behave ideological.
what we actually need are a few clever people, who can interpret those study data and designs and analyse them for us so we can actually know whats good evidence and what not.

 

[Andryr]

Your posts have summerized it all really great. My 2 cents are: I've tried a lot of diets and nothing worked so far.

3. We've all tried different diets, if they worked, we'd know by now.

I did all that stuff.
Lots of carbs, moderate carbs, no carbs (keto 6 months). Much fat, moderate fat, no fat. Veg, carnivore. Meals every 2 hours, time restricted feeding, fasting for days.
No effect.
If we calculated all money we all spent on supplements there would be enough to finance some good research.

 

[Rebecca under the papyrus]

I wholeheartedly agree and would go even further and include trauma resolution, meditation etc. next to diet ans lifestyle.

While I agree that certain diseases can be treated with very specific dietary/lifestyle approaches, my main point is different. My picture of chronic disease is as following:
Of course, there is a basic mechanism unique to the disease. But there are also things that chronic diseases in general have in common, like chronic inflammation. While it is possible to target the unique basic mechanism of a disease, that is not necessary always "healing" or the only approach. For example, when someday it turns out that ME is based on a certain virus and you find a way to kill it off, then you didn't work on the reason(s) why that virus could do rampage in you in the first place, while other people could keep it in check on their own.

"Healing" to me means to bring your body in a position, where it can handle things you throw at it. That doesn't mean it is a bad thing to be able to kill the virus or that it is not possibly necessary to do so to give the body the space and peace to heal.

The point I am trying to make is that diet, mind-body, and lifestyle often don't target the disease's unique mechanism, but inflammation, nervous system disregulation, gut issues, etc. that play their part in all chronic diseases. Therefore it is only logical that diet doesn't work for everybody the same, and that not everyone has had trauma in their past, but that these things might nonetheless play a huge part for some people.

A disease has a unique mechanism, but the reason why you were susceptible to it in the first place is usually a combination of several diet/lifestyle/psychological factors/toxic load that dysregulated your nervous system, immune system, etc. And more often than not, diet/lifestyle/mind-body treat those. And if you're lucky that might allow your body to reregulate itself enough to improve the unique disease mechanism on its own.

 

[Wishful]

if it is supported by evidence.

That's the critical part. So far, there's a lack of evidence that diet is a reliable treatment for ME. There may be some anecdotal claims for it ("The dung beetle diet cured my ME!"), and there may even be cases where a patient had just the right set of factors that would allow dietary change to be a treatment, but that doesn't mean that it will work for everyone, or that diet is the cause of ME.

If someone came out with strong evidence that diet can be a treatment for some PWME, that's a completely different scenario. The same holds true for any highly unlikely claim. I agree that we shouldn't disregard evidence, and that the present evidence does not completely rule out dietary changes as a possible treatment for some PWME, but that doesn't mean that I can't personally judge it as unlikely to help me. Certain foods can make my ME symptoms worse, but I think it's highly unlikely that there's a magic diet that will treat/cure my ME.

If it came down to divvying up research funding, I'd place "searching for the magic diet" research very low on the priority list. If a majority of PWME had a strong correlation between <food ingredient x> and a symptom, figuring out the mechanism would be much higher priority.

 

[GreenEdge]

3. We've all tried different diets, if they worked, we'd know by now.

The lion diet is working for me.

How many people do you think have tried a meat based diet? Not many.
How many a meat only diet? Almost no one.

 

[Andryr]

How many people do you think have tried a meat only diet?

Very few. I did. It did not work. 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?

 

[Wishful]

A meat-only diet made me feel worse.

Also, my responses to different diets changes over time. I've had periods where I had to avoid meat, and times when it's been fine. I'm presently intolerant of fermentable dietary fibre, after many years of fairly high-fibre diet.

So, if I did manage to stumble across a diet that reduced my symptoms, how long would that last?

 

[GreenEdge]

But you aren't cured, are you?

No, I'm not cured yet, but I am improving. There are no miracle workers here. Our bodies take time to recover from anything. When diet is right the organs heal first, beginning with the liver. See: 7 Signs Your Liver Is Healing

Our auto-immune diseases will not noticeably improve until our organs have almost healed.

A meat-only diet made me feel worse.

Really, can you tell me what you did and what happened?

 

[Murph]

If it came down to divvying up research funding, I'd place "searching for the magic diet" research very low on the priority list. If a majority of PWME had a strong correlation between <food ingredient x> and a symptom, figuring out the mechanism would be much higher priority.

For me this is where the rubber hits the road. You could argue that all metabolic research (Phair, Fluge, Mella, Hanson) could be described as "searching for the magic diet". They are trying to find which pathways through the metabolic system are blocked and what is blocking them. It's possible treatments will vary by patient. Some of us might have some pathways blocked, others might have other pathways blocked.

Some of those pathways might require loading up on co-factors to get them to work. If for some patients a new diet seems to work for a while then stops, that could be an example of the pathway being open but the co-factors getting exhausted when you use it exclusively.

I include this next link just as an example of how an actually simple diet problem can seem really complex before it's cured, and people can be wrong for many centuries. Then they can still be wrong for decades even after they have solved the problem, by not actually realising why/how they solved it.

https://www.npr.org/sections/thesal...-celiac-disease-it-saved-kids-lives-at-a-cost

Diet changes seem simple, because we eat every day. But nutrition science knows basically nothing and cellular respiration is way more complex than they teach in school, so to me it seems likely there's a lot of nuance there as yet unexplored.

 

[Murph]

Another example of how diet is spurned as a treatment:
https://pubmed.ncbi.nlm.nih.gov/19049574/

They knew keto treated epilepsy 100 years ago, in the 1920s. But when they invented anti-seizure drugs, science gave up on it. Now, however, there's a big swing back to it as the limits of the pills are becoming apparent.

Just one example of how diet is not seen as sufficiently "medical" for a while but in the end is accepted as a good treatment.

 

[GreenEdge]

But it did not work for you long term either, right?

You're probably thinking of this post. That was the first time I questioned the diet. In hindsight, I think my growing dislike of both beef and lamb was because my brain wanted omega 3 (EPA & DHA). I had a desire for nothing but Salmon for 3 weeks.

It does continue to work for me...

The difficulties - I've had, have been temporary and part of the journey of learning how to eat this way.

 

[hapl808]

I think diet can definitely be helpful, but there's a bit of a danger when it becomes dogma. People here are good examples that different diets seem to help different people, even those suffering from the same illness. I think it's good to be cautious that we don't assume that anything that did (or did not) work for one will have the same result for others - lion, keto, vegan, vegetarian, Wahl's, etc.

Until we find a cure that works for everyone, it's just a matter of finding what's best for each individual, unfortunately with a lot of trial and error.

 

[Wishful]

Really, can you tell me what you did and what happened?

I tried a meat-only diet for probably around 3 weeks. My ME symptoms were worse during that diet, and went back to baseline when I added carbs.

A year or two ago, I developed intolerance to proline, so I had to drop meat again. That intolerance went away, but was replaced by fibre intolerance. Thinking about how much my responses to different foods/diets changed over my 20+ years of ME, I'll push "diet" even further down the list of potential treatments for ME, since I don't think one diet would work for long.

Our bodies take time to recover from anything.

No, recovery from ME took less than an hour, each time I managed to trigger a temporary remission. It was an abrupt switch from full ME to full non-ME (and feeling healthy, clear-headed and energetic again ). No "long time needed" for my organs to heal. I'm sure a search would turn up plenty of medical problems that can switch off very quickly, without needing a different diet or time for the liver to heal. I see the temporary remission as proof that ME does not involve long-term damage to organs ... and now that I think of it, it doesn't require the gut contents to pass out first, so diet is not a factor. Our negative responses to certain foods or diets is probably just worsening ME's downstream dysfunctions, and adding to ME's inputs that worsen it. For example, ME's core dysfunction seems to respond to immune activation elsewhere in the body, so any diet that increases the body's immune responses is likely to worsen ME symptoms. However, changing the diet to minimize the immune response won't resolve the core dysfunction of ME; it may just reduce the symptom severity to some degree.

 

[Wishful]

You could argue that all metabolic research (Phair, Fluge, Mella, Hanson) could be described as "searching for the magic diet".

No, that's a search for the mechanisms involved in ME or at least some of its downstream symptoms. Those mechanisms might be affected by diet, or they might not. "Searching for the magic diet" would be putting patients on different diets and hoping that some patients would claim to feel better, although the claims would probably be unverifiable via clinical measurements; they'd just be anecdotal claims.

Offering some examples where diets were effective treatments is not proof that diets will work for ME. A change in diet won't fix a broken leg. I don't really understand the mechanism of diabetes, but I don't think that a simple change in diet will fix the core problem of it. I expect there will be many more examples of diets not being able to fix problems than examples where it is an effective treatment.

We can't prove that a change of diet can't treat ME (or remain an effective treatment for long). However, we can't, to the same degree, prove that magic crystals, Tibetan chimes, or other treatments lacking in any solid evidence, absolutely can't be a treatment for someone. We can consider the evidence that exists in favour of a given potential treatment. I think most of us will agree that ringing some chimes has a chance of effectiveness approaching zero. Some of us report reduced ME symptoms when we change our diet (usually removing something we had been consuming), but I can't recall any reliable examples of people trying a new diet and being effectively treated or cured of ME. Thus of millions of PWME trying all sorts of different diets, the number of effective diet treatments is still somewhere around zero, and the chances of finding one that will work for more than just one or two people is, to me, approaching zero.

If ME is due to the lack of some chemical in the right place, the chance of it being a chemical found in foods is low (based on lack of successes). If it's due to the existence of a chemical (maybe a specific fatty acid in certain brain cells), the abundance in those cells may not be affected by diet (it being endogenously manufactured from recycled body chemicals), and again the chance of that is very low due to the lack of success to date.

Lemons can treat scurvy. Fine, but that says nothing about the chance of diet affecting ME. I'd say zero correlation between the two cases. Unless, as you said earlier "it's supported by evidence", which to date, it is not. Until that (verified) evidence exists, I'll place magic healing diets in the same category as magic healing crystals.

 

[pamojja]

Until we find a cure that works for everyone, it's just a matter of finding what's best for each individual,

Agreed. Many inconsistent hopes for 'a one cure for all'.

Contrarily, we haven't even found a reliable cure for CVD or cancer 'that works for everyone', the two major killers. How on earth could such an impossible thing ever be found with a one-size-fits-all diet? (Beside not being researched, because no profit).

Don't get fooled by the static concept of a disease, also with other conditions there are vast differences with the same diagnosis. For example: on acount of different genetic susceptibilities, medical history and other present conditions, deficiencies or overload, varying toxic exposures, diet and every other life-style factor, metabolism, on and on.

My diagnosing MD said' 'you could take as much greens as you want, 5-year mortality would remain at thirty percent with the severity of my condition.' Without there being any RCT evidence for such idiotic predictions.

Worse, for my PAD with walking-disability he though the following interventions irresponsible not to agree to. Obviously blissfully unaware of benefit/risk assessed by http://www.thennt.com - as number to treat, and number to harm.

Statins Given for 5 Years for Heart Disease Prevention (With Known Heart Disease)

83 for mortality

In Summary, for those who took the statin for 5 years:

Benefits in NNT

• 1 in 83 were helped (life saved)
• 1 in 39 were helped (preventing non-fatal heart attack)
• 1 in 125 were helped (preventing stroke)

Harms in NNH

• 1 in 100 were harmed (develop diabetes*)
• 1 in 10 were harmed (muscle damage)

*The development of diabetes is one such unanticipated harm found in a recent large study and it seems likely therefore that this applies to the data above, although this is a best guess.​

​

Aspirin to Prevent Cardiovascular Disease in Patients with Known Heart Disease or Strokes

333 for mortality

In Summary, for those who took the aspirin:

Benefits in NNT

• 1 in 50 were helped (cardiovascular problem prevented)
• 1 in 333 were helped (prevented death)
• 1 in 77 were helped (prevented non-fatal heart attack)
• 1 in 200 were helped (prevented non-fatal stroke)

Harms in NNH

• 1 in 400 were harmed (major bleeding event*)

*Required hospital admission and transfusion​

​

Blood Pressure Medicines for Five Years to Prevent Death, Heart Attacks, and Strokes

125 for mortality

In Summary, for those who took anti-hypertensives:

Benefits in NNT

• 1 in 125 were helped (prevented death)
• 1 in 67 were helped (prevented stroke)
• 1 in 100 were helped (prevented heart attack*)

Harms in NNH

• 1 in 10 were harmed (medication side effects, stopping the drug)

*fatal and non-fatal myocardial infarction and sudden or rapid cardiac death​

​

Clopidogrel Added to Aspirin to Prevent a Second Heart Attack Or Stroke

None for mortality

In Summary, for those who took the clopidogrel:

Benefits in NNT

• None were helped (cardiovascular problem prevented)

Harms in NNT

• 1 in 167 were harmed (major bleeding event*)

Coronary Stenting for Non-Acute Coronary Disease Compared to Medical Therapy

None for mortality

In Summary, for those who received the stenting:

Benefits in NNT

• None were helped (life saved, heart attack prevented, symptoms reduced)

Harms in NNH

• 1 in 50 were harmed (complications such as bleeding, stroke, kidney damage)

Without solid RCT data beyond 5 years. Just as any other diet. But nevertheless usualy prescribed until death

Taking the 'best' of those interventions, how much likely it is being the only one benefitting, while the remaining 82 taking statins for 5 years not at all, in respect to dying? Why rather not to bet on a just as stupid but much more appealing 70% survival rate? With as much greens as one wants and no side-effects?

Really nothing to loose, because all these standart of care threatments of chronic conditions do not cure, How ME/CFS could be an exception?

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.

Of course, acute medicine is really at its best with incredible accomplishment and almost secure remediation. No such thing in chronic conditions, even with those most common causing most victims.

 

[vision blue]

Maybe point out that diet and excercise can also help, even cure, cancer as well? So being open to these things for any disease, including CFS, in no way implies that theres a mental, paychological, or trivial component to the disease.

 

[Wishful]

I don't suppose you found similar stats for exercise. I expect a daily walk would compare quite favourably in terms of lives saved vs harm.

 

[pamojja]

I don't suppose you found similar stats for exercise.

Such RCTs are very expensive, but absolutely no profit in it. Same as in nutrition. Not patentable, therefore millions of loss. That's also why there isn't any data beyound 5 years. And as little evidence as with nutrition and lifestyle from the start.

But with those numbers to treat its obvious: No cure, just a sort of lottery for survival. With such odds, makes at least to me with CVD more sense to bet on greens and swimming, for example.

 

[GreenEdge]

I tried a meat-only diet for probably around 3 weeks. My ME symptoms were worse during that diet, and went back to baseline when I added carbs.

I think to properly evaluate any diet you should give it 90 days. It takes that long for your microbiome to adapt.
Commit to 30 days but don't start counting until you have transitioned away from your current diet. By day 30, I found I was over my food cravings that would have gradually drawn me back to my old ways.

No, recovery from ME took less than an hour, each time I managed to trigger a temporary remission. It was an abrupt switch from full ME to full non-ME (and feeling healthy, clear-headed and energetic again ). No "long time needed" for my organs to heal.

I know what you mean, my last remission was sudden and 100%. Until recently I had never experienced such obvious (although temporary) remissions before. I've now had 3 (#1, #2, #3) in the last 6 months.

I'm sure a search would turn up plenty of medical problems that can switch off very quickly, without needing a different diet or time for the liver to heal.

I found that improvements in health and fitness were very slow at first, but over time, have taken off exponentially.