Can you recommend a supplement/supplement combo to your fellow CFS sufferer ?

[GreenEdge]

You're welcome, (3 years ago) I was a nutrition student, but I had to take a break from uni. Twice, I tried to continue but I couldn't keep up with the pace of learning. - I'm now 51yo.

I remember how quickly they glossed over meat (whilst recognizing how nutrient dense it is) and then all we read about was phytonutrients (without telling us 'phytonutrient' literally means plant nutrient). None of them are essential. And our textbook ('Food, Nutrition and Health' by Linda Tapsell) contained many statements I knew had been disproved by RCT's and that bothered me at the time. So (just a moment ago) I went looking for examples and found every one began with 'may be'. Like the author knows it's controversial and has to write according to the Dietary Guidelines.

Some medical knowledge is actually just expert opinion (as stated by the prominent expert at the time - when they were asked). Such so called knowledge often persists even after its disproved by an RCT. There's a book called 'Lies My Doctor Told Me: Medical Myths That Can Harm Your Health' by Ken D. Berry MD that tries to dispel such myths. I don't know if it has anything to say on fiber (as I have not yet read it) but I think it's worth reading.

 

[maddietod]

My most recent elimination diet turned up soy as a major contributor to brain fog. I've had soy products daily for decades, and I'm positive it hasn't been a problem for that long.

Brain fog is much less when I only wake up 2ce in the night, but that only happens 3 times a year.

Increasing brain fog is one of my first warnings to pace better. This is depressing because I already live a very simple life, and it means I'm losing ground.

I've never found supplements that directly help with whatever causes my brain fog (or any other symptoms). I have gotten a boost from magnesium glycinate, which stops my legs kicking at night, which decreases wakings, which helps my brain.

 

[Wishful]

I had fibre-rich diets for quite a while, for reasons aside from BMs. For one thing, carbs without adequate fibre gave me insomnia. Fibre, especially psyllium, did make my stools slide out with less strain, so I do miss it.

 

[GreenEdge]

My most recent elimination diet turned up soy as a major contributor to brain fog. I've had soy products daily for decades, and I'm positive it hasn't been a problem for that long.

Brain fog is much less when I only wake up 2ce in the night, but that only happens 3 times a year.

That's really good to know because soy causes many other problems as well. Please spread this knowledge to your friends because soy would be the most dangerous substance in the typical diet today.

Soy is unique in that it contains a high concentration of isoflavones, a type of plant estrogen (phytoestrogen) that is similar in function to human estrogen but with much weaker* effects.

Source: https://www.hsph.harvard.edu/nutrit...n that,estrogenic or anti-estrogenic activity.
* Weak? Not when concentrated into a vegetable seed oil. Beware of vegetable oils containing soy.

Soybean oil (British English: soyabean oil) is a vegetable oil extracted from the seeds of the soybean (Glycine max). It is one of the most widely consumed cooking oils and the second most consumed vegetable oil.[2]

Source: https://en.wikipedia.org/wiki/Soybean_oil
The estrogenic effect causes man boobs and even girls as young as 5 to develop breasts.

 

[GreenEdge]

Here's another video to dispel the myth that we need fiber:

And here's a link to all the references that support the evidence in the above video:
https://www.zoeharcombe.com/PHC19/

 

[ruben]

The myth that fiber cures constipation (video). Ask yourself who benefits?

If you take something that doesn't help yet you believe it will, you end up taking more and more. It's an endless cycle and whoever makes Movicol must be making a killing because it's used a lot in hospitals. Metamucil is better, but be sure to consume a lot of water (if it's not working consume more water) because it can cause blockages that have to be surgically removed. If you mix it in a glass and let it sit for 2-3 minutes, it will start to gel up. As a test to see if you're taking it with enough water, leave it longer so you can see what it turns into.

Fiber irritates the digestive tract encouraging the body to speed up waste removal to get rid of it. Fiber also makes you fart because the bacteria that feeds on it produces gas.

A better way to treat constipation is a supplement like Magnesium Citrate.

 

[ruben]

When I was in my youth and healthy I had a predisposition to constipation. Fruit cubes from a health food shop and prune juice has cured it basically completely. Before I established this and was searching for answers to my ME/CFS, it was amazing how many practitioners, both conventional and alternative ones who seemed to think it was the be all and end all to sorting out my very debilitating symptoms of ME/CFS. If only it was that simple.

 

[wolves2626]

Allicin pills and may be nigella sativa. Well I do not know at least from my experience.
We need to find the underlying cause otherwise these are just a bucket of water for a huge fire.

 

[Mimicry]

Acetyl carnitine and alpha lipoic acid seem to help my brain fog somewhat! Also electrolytes (especially salt water). If you're up for it, I suggest experimenting with different diets as well. I haven't personally found that diet makes much difference for me but some people have found significant relief from changing their diet. Some people go vegan, some go full carnivore, some just remove things like dairy or gluten or carbs. You need to try for yourself what works.

 

[Jo86]

Acetyl carnitine and alpha lipoic acid seem to help my brain fog somewhat! Also electrolytes (especially salt water). If you're up for it, I suggest experimenting with different diets as well. I haven't personally found that diet makes much difference for me but some people have found significant relief from changing their diet. Some people go vegan, some go full carnivore, some just remove things like dairy or gluten or carbs. You need to try for yourself what works.

I'm very torn about diet atm. For years, ever since I first discovered the importance of gut health and all that, which we all go through eventually with these conditions, I thought diet was going to be absolutely key to my healing. 16-17 years into this CFS, I haven't found a diet that improved how I feel. Some diets will make me feel even crappier, no doubt, but no diet will improve my well-being. So I'm very skeptical as to the healing ability of diet. I can't help but feel it's being magnified a tad in the field of chronic diseases. I'm a student in nutrition, so I understand its importance and everything, but at this stage I feel other factors at play may have primacy over mere diet. Not sure which factors, but there seems to be a lot more than diet going on here.

Like, my body won't be happy with me if I stuff junk food into it, and will let me know it's angry for a few hours, but eating gluten free/anti inflammation/keto etc etc etc won't produce rainbows for me either.

 

[YippeeKi YOW !!]

My most recent elimination diet turned up soy as a major contributor to brain fog. I've had soy products daily for decades, and I'm positive it hasn't been a problem for that long.

I had the same issue. Suddenly, things that Id eaten all my adult life, some of them in fairly good quantities, turned on me like a benzedrine puff adder (Thank you Basil Fawlty), and I finally had to drop everything.

But the one that kicked my butt AGAIN when I tried to add it back in about 3 years later was soy. I used to press soy bricks, then slather them with everything from mushroom paste and herbs to crushed nuts and mayo (dont judge .... I can hear you judgy-ing .... it's actually delish), let them marinate i that for a bit, then bake them til they had great chew and texture and mae a meal of that and a salad.

No more. For one thing, I just dont have the sustainable energy to do the pressing, slathering, marinating, and baking, and for another, they really crushed my mood and contributed to anxiety/panic attacks.

I can still use a modest amount of traditionally made, aged soy sauce,, which is great, because it gives such a depth and character of flavor to simple stuff but I even have to b careful with that.

So yeah. Soy can be really problematic, and we haven't even gone into it's potentially cancer activating estrogenic effects.

That's really good to know because soy causes many other problems as well. Please spread this knowledge to your friends because soy would be the most dangerous substance in the typical diet today.

Maybe not THE, but certainly on the list ....

 

[YippeeKi YOW !!]

I have gotten a boost from magnesium glycinate, which stops my legs kicking at night,

Mag gly absolutely saved my ass, and helpd me beat back, control and fnally eliminate entirely 1 1/2 years of absolutely gobsmackingly terrifying panic/anxiety attacks. That, along with Vit C and small amounts of melatonin .... it's a hugely underestimatd supplement, good for a wide range of things ....

 

[YippeeKi YOW !!]

some people have found significant relief from changing their diet. Some people go vegan, some go full carnivore, some just remove things like dairy or gluten or carbs. You need to try for yourself what works.

On the button !!!!

There's absolutely no one diet or supplement or herb or combination of the above that's going to work the same for everyone, so it's virtually impossible to recommend anything except on the basis of what our experience with it has bee (which means nothing in terms of yours) and it's an endless marathon of trial, stop, trail another one, stop, trial something else, stop .... lather, rinse, repeat ad nauseum.

But when you finally hit on something that helps (and I agree with you @Jo86, supps and diet arent likely to be the Holy Grail, but they can make a huge diff in your QOL), it's a generous boost, not just to your QOL, but to your sense of agency over something that doesnt allow much of that, and to boosting hope, which is essential for surviving and staying the course ....

 

[YippeeKi YOW !!]

@ruben ....Sorry for the clumsy copy-and-paste, but your post wound up in pink quote box, which makes it impossible to quote it in the normal way ...

A better way to treat constipation is a supplement like Magnesium Citrate.​

I agree, altho mag citrate can be a bit harsh for some people (hospitals use it to clean you out pre-op, so it doesn't mess around) in which case, give magnesium oxide a shot. Like citrate, it functions as a small molecule osmotic, shooting straight thru to your colon where it draws in water almost immediately ..... and the mag is nly about 4% biolavailable, so little chance of overdoing it if you're taking another form of mag for other reasons ....

 

[Wishful]

(dont judge .... I can hear you judgy-ing ....

But I was doing it so quietly.

Actually, it doesn't sound that bad to me. Not as good as real meat, but during some of my most restrictive times, soy bricks with tasty additions would have been welcome. With ME, finding foods that are tasty, satisfying and safe can be difficult. Finding the energy to cook something complex is a problem too.

 

[hapl808]

Some diets will make me feel even crappier, no doubt, but no diet will improve my well-being. So I'm very skeptical as to the healing ability of diet. I can't help but feel it's being magnified a tad in the field of chronic diseases.

Exactly my experience. Some diets make me feel worse, but nothing helps significantly.

Over the years, tried vegan, vegetarian, Wahl's protocol, AIP, AIP paleo, Paleo Medicina (or whatever that one was called), keto, general low carb, carnivore, mediterranean, low glutamate, low histamine, Fast Tract, and on and on.

 

[Wishful]

So I'm very skeptical as to the healing ability of diet.

I agree. Unless the person is suffering from deficiencies, or has an unusual microbiome problem that can be solved by the right food, it's unlikely for a diet to provide healing. It's much more likely that eliminating some foods will reduce problems. That's been my experience with my ME. Adding foods with conjugated linoleic acids provided a slight improvement in my sleep patterns, but I wouldn't class that as healing, just treating.

 

[Mimicry]

@Jo86 and @Wishful diets don't help me either but that doesn't mean that one shouldn't try them. Of course they don't heal this illness but can help with some symptoms. No offense but I don't understand the "it didn't help me so it can't help anyone" crowd.

 

[Wishful]

No offense but I don't understand the "it didn't help me so it can't help anyone" crowd.

We weren't suggesting not trying them. I tried quite a few different diets because there was no guarantee that it wouldn't help. I do object to claims that "The <whatever> diet is the answer to everyone's health problems!!". We all differ too much, and what works for one will be bad for someone else.

Some diets are relatively cheap, easy, and safe to try, so there's not much reason to not try them. Others are expensive, especially the proprietary ones, and others have some risk of harm, so I would suggest doing proper research into them before taking that risk.

 

[YippeeKi YOW !!]

I don't understand the "it didn't help me so it can't help anyone" crowd.

Both @Wishful and I have posted on this thread about the absolute impossibility of finding a One Size Fits All solution to this crafty little backstabber of an illness, because there seem to be at least 2 dozen subsets, all slightly different, all equally mystifying, all similarly resistant to 'cures', whatever they may be.

And I agree with you @Mimicry, that those posters who opine that XXX product didnt help them so it's not worth anyone else's time are just as far off the track as those who claim that XYZ helped them, and therefore is proclaimed to be the absolute, total, unarguable cure for all of us ....