Supplements found to be fairly useless

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@Wishful
Most people buy them because they want to be convinced that popping a pill magically solves their potential future health problems
Yeah. That's us. Always just lolling about, waiting for the magical answer.


I don't have the energy or focus to better address your arguments in defense of your fairly visible anti-supplement stance, but I can speak from personal experience: without access to experimentation with various supps at various doses and strengths, I don't think I'd still be here.

Apologies. Not a particularly pointed counter, but genuine and from the heart.
All the credible research papers I read indicated that the benefits were trivial: a few % reduction of risk even at high doses of supplements.
Could you possibly cite some of those credible research papers? And your well-researched basis for the belief that they are credible, keeping in mind that BigPharm owns almost all university medical schools, from their course syllabuses to their research centers and their focus, findings, and conclusions. Lock, stock, and great smoking barrel.
The study this thread is about said that most supplements are a waste of money for most people
And there are 'credible' studies that prove that the earth is, after all, flat as a fluke worm. And that clearly cancer-producing food additives are as benign as a baby's burble. And that massive amounts of anti-d's are required by 5 out of every 6 patients, including the very elderly and children under the age of 3. And that none of the 'medications' produced by our corporate, profit-driven medical system cause any damage at all. Absolutely none.


Histrionic in places, but the best I could do right now.

Western allopathic medicine has settled cozily into the 25 - 40% per year cost increases in our already expensive and often shod-diddily-oddily medical care, and are now waking up to the horror of a new kid on the block, and he/she/whatever may very well have a black belt that defeats WAM and Pharma’s usually effective self-defense system.

So they go after that entity with everything they have, including planting potentially phonied 'research' articles documenting the uselessness of supplements, and how Vit D provides NOOOOOO benefit at all, Vit C is profoundly dangerous, Vit E damages your heart and lungs, fish oil is bogus, and all any of us need is a marginally well-balanced diet and a little exercise.

That got us GET. And its snide little cousin CBT. And the numerous studies in endless stacks of publications supporting their validity as viable treatments for us.

What other wondrous miracles does standardized allopathic medical practice and Pharma have in store for us, I can barely stand the suspense.
The study you posted isn't about normal healthy people taking supplements, it's about a specific subgroup of the population already suffering from severe medical problems
Which proves what, exactly? That precisely because supplementation works for those suffering from severe medical problems it can't possibly be of any value to others not as seriously afflicted?


I think I'm too tired to do this right now, and am losing steam and focus rapidly.

The bottom line is this: we all have the right to believe in and practice the healing and treatment methods of our choice, particularly in view of the dismal failure of the medical community in those regards, as well as the supplementation, or lack of it, that seems to work for us.

So rock on, you totally have the right. It's your body, your life, and none of my business.

Just please don't argue against the very things that have kept many of us alive, and many more on the soul-grindingly slow but gradually improving path to better functionality and health after having been either completely failed by, or brusquely tossed aside by a medical community whose educations and future incomes are underwritten by the very pharma companies in whose profound interest it is to slam the door loudly and firmly on any method that doesn't fill their bank accounts and fluff up their already plump little egos.
 

Wishful

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Why you don't do yourself a favor - if you not already have done so - and find out with lab-testing where you are deficient in? (retinol, vitamin E, RBC magnesium, 25(OH)D, MMA, zinc, etc.)
I had a toxicology assay done, and it showed no significant excesses or deficiencies. I'm not sure about the ease of getting lab testing for vitamins in Canada. I did try multivitamins tablets, and other vitamins and minerals individually (to avoid niacin) and together. I didn't notice any benefits, except with iodine. I've also had lengthy nutrient rich diets and nutrient poor diets, which also didn't affect my ME. I consider that empirical evidence more important than lab testing, which wouldn't necessarily expose abnormalities in what the body needs. Some people need more or less of a nutrient than what science says is the average recommended level.
 

iwillwin1day

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I do think it's most likely that taking supplemental vitamins at the recommended dosage doesn't provide significant benefits for most people. Looking at it another way, most of the supplements sold are a waste of money for most people. Most people buy them because they want to be convinced that popping a pill magically solves their potential future health problems.
Supplements are very helpful and their benefits are suppressed by big pharma Industry as they don't want to loose trillion dollars worth money.

I will talk about just one vitamin. And that is vitamin c. Just go to the website doctor yourself dot com and see the benefits of vitamin c. This website is peer-reviewed natural health supersite with hundreds of self-help articles and thousands of scientific references.

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Wishful

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Yeah. That's us. Always just lolling about, waiting for the magical answer.
No, we are not 'most people' in regards to our health or how we think about it. My guess is that many of us start off expecting the medical system to provide a clear diagnosis and a treatment. A later common phase is to search the internet for claims of treatments/cures for ME, and some people will be convinced about some treatment or supplement cocktail that will solve the problem, and it may take time to realize that it isn't working as claimed. I think many of us eventually get disillusioned about the likelihood of a simple solution, and settle down to experimenting with various things, hoping for some benefit, but not really expecting it. Some of us will encounter some things that do relieve some symptoms to some extent, some of which may be comorbid conditions. Some things will work for only one person, some might work for a few more. I haven't heard of any that work reliably for a majority of PWME.

I'm not anti-supplement as in "Don't take them, they're poison!!!' I'm not even saying that they're not useful, or even life-saving for some people. I really dislike the European stance of blocking access to supplements. There are probably some people who could benefit from the things that are blocked. I wish the Canadian system allowed more access to drugs on a trial basis, such as a one-time trial of 3 tablets of 1-methyltryptophan or 4-chlorokynurenine. I'd sign a legal waiver, and a few tablets aren't going to cause any drug or supplement companies to fail; I'd just like the chance to experiment, since the medical system isn't providing any treatments for ME.

I would like to see better education about supplements (and drugs). The health marketing industry gets away with unbacked claims which prey on people's ignorance. I'd rather see the general population getting a more balanced education about such things. I don't know how to make that work properly, since there'd be special interests manipulating that system, but it's still a nice goal.

Which proves what, exactly? That precisely because supplementation works for those suffering from severe medical problems it can't possibly be of any value to others not as seriously afflicted?
No, I thought I was quite clear about it not proving that megasupplements can't be of value to some people. My point was that the findings weren't of much statistical value for 'people in general'. The study has value for the specific sub-group (people who recently suffered a heart attack). The findings may or may not apply beyond that group; the study doesn't provide the information for determining that. The study did uncover an interesting finding that should be followed up on However, as it is, it doesn't say anything about the value of high-dosage vitamins for people outside that sub-group, or for medical conditions other than heart attacks.

Statistics is tricky. It's not as simple as 'Here's some data. Here's a single numerical value for the chance that x will do y.' There are all sorts of issues about quality of data, how outliers are factored in, and what range of circumstances the results should be applied to. I don't take the study starting this thread as 100% correct. I wouldn't be too shocked to discover a counter-report showing major flaws in the study, or even conspiracy and corruption. Until such a report comes out, I'll give the study reasonable credibility.

In other messages, I do suggest that PWME experiment with nutrients, diet and whatever else that might have an effect on their bodies. I discovered iodine's benefit for me that way. It didn't convince me that multivitamin tablets were important for my health. I took the time to identify the effective factor. I also tried other supplements, usually at higher than recommended doses at least once.

It's possible that the right combination of mega-dosage nutrients taken four times a day for six months would provide a significant benefit. However, I consider the chances to be in the same range as for green jelly beans or rhinocerous horn: extremely low. At that level, the number of things to try is effectively infinite, so I don't bother to try them.

Should PWME try multivitamins, or even high-dosage multivitamins? I think it's worth trying. Should they continue spending money on them even if they haven't shown any benefit after the first bottle? It's their financial choice. I just think they should balance the marketing claims for supplements with credible scientific studies.

And there are 'credible' studies that prove that the earth is, after all, flat as a fluke worm.
Yes, you can find examples of failures of peer-reviewed scientific studies. Nothing is perfect. It's still better than outright chaos. One scientific study isn't proof. Multiple peer-reviewed scientific studies that show similar results should be given more weight in deciding what to believe. It's all a matter of personal evaluation of information.
 

HowToEscape?

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Supplements are very helpful and their benefits are suppressed by big pharma Industry as they don't want to loose trillion dollars worth money.

I will talk about just one vitamin. And that is vitamin c. Just go to the website doctor yourself dot com and see the benefits of vitamin c. This website is peer-reviewed natural health supersite with hundreds of self-help articles and thousands of scientific references.

View attachment 33984
Many supplements are manufactured by the same corporate groups that own "big pharma".
Given a choice between a large corp which has an entire QC department and plans to be around in 5 years vs a little company which has next to zero assets, nothing to lose and can disappear next week, I'll take the the first.
 

JES

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I don't have the energy or focus to better address your arguments in defense of your fairly visible anti-supplement stance, but I can speak from personal experience: without access to experimentation with various supps at various doses and strengths, I don't think I'd still be here.
When you have time and energy, can you provide a list of supplements that you have found most helpful and can you give an estimate on how much they have improved your health? If possible, can you use some scale like the Karnofsky scale described here to estimate how much supplements have improved your health?

I'm also a fan of having supplements available to experiment with and I would be even happier if I could import drugs legally from overseas pharmacies (some countries allow this, but not possible where I live). Ultimately though, I can't see much use of these supplement studies as even if they were replicated and verified, they might have little meaning for ME/CFS patients, whose metabolism and everything appears to be quite different from an average person. For example, vitamin C taken isolated as supplement causes inexplainable increase in neurologic symptoms for me. It doesn't help me at all that Linus Pauling thought he was protected from all disease by taking 18 grams of vitamin C every day.
 
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percyval577

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Many supplements are manufactured by the same corporate groups that own "big pharma".
"Surpression" may not necessarily mean hindering any production. More subtle actions are thinkable, and until now we have a free market, however.

Also true, every player on the market has own goals. Thanks to the innovations mankind can handle a lot now, but the seek for money may also bear other options. There is no institution that would guarantee that everything works "as it should".

Even in science it is also about what is currently en vogue. What today is laughed at can be tomorrow best wisdom.

When I tell doctors or other person that this or that helps (I am still improving) - and I am very thanksfull for that - ppl tend to look at me obviously thinking something. I myself think, my complicate brain may not work but at least I use it on my own. (I hope.)
 
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HowToEscape?

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"What today is laughed at can be tomorrow best wisdom."

But usually not. The town lunatic of 1655 would be considered just as crazy today as then. The pyramid power hucksters of yesteryear became the crystal sellers of yesterday and the industrial bleach (Miracle Mineral Supplement) pushers of today.
Science is like a bee, it moves from one flower to another, finding dry shrubs and empty fields and eventually flowers and nectar. Idiocy is like a fly, it buzzes at random, then alights on the freshest -----.

Unfortunately we have few scientists working on our condition, but many idiots and Wessleys err, scammers trying to profit from us.
 

iwillwin1day

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Many supplements are manufactured by the same corporate groups that own "big pharma".
Given a choice between a large corp which has an entire QC department and plans to be around in 5 years vs a little company which has next to zero assets, nothing to lose and can disappear next week, I'll take the the first.
Not many only few supplements are manufactured by those big pharma. Just compare the number of supplements manufactured by supplements industry Vs big pharma. And also big pharma manufacture supplements for name sake. On other hand they release research paper on supplements being useless.

Your knowledge is incorrect about supplement industry. Supplement industry do have QC lab and I am talking about trusted supplement industry brands like solgar, nature's way etc. solgar is in business since 1947!
 
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PatJ

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For example, vitamin C taken isolated as supplement causes inexplainable increase in neurologic symptoms for me.
Vitamin C is useful for lowering excess glutamate. Maybe in your case it's lowering your levels of glutamate too much. Here is a list of symptoms of low glutamate with references to medical studies.
 

Wishful

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For example, vitamin C taken isolated as supplement causes inexplainable increase in neurologic symptoms for me.
VitC seemed to worsen my symptoms in the first year or so of my ME too. It doesn't seem to be a problem now. I didn't have any issues with glutamate in foods, so I doubt that was the reason. Just a mystery.
 
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@JES
When you have time and energy, can you provide a list of supplements that you have found most helpful and can you give an estimate on how much they have improved your health? If possible, can you use some scale like the Karnofsky scale described here to estimate how much supplements have improved your health?
The short answer is, probably, no. It would require me to go thru the last decade of notes, some of which are in storage rght now, and would lead me inevitably thru my mother's death, my father's suicide, the loss of two old and very dear friends, my husband's 2 hospitalizations and scores of other unpleasantnesses including cancer.


Not a journey I really want to take right now.

Especially since what helped me may or may not help you or anyone else, given the chameleon-esque aspects of this illness, coupled with the fact that many things worked well enough to get me to the next half-level, and then stopped working entirely, requiring me the find new solutions, new options, new experiments.

It's a job we all have to do for ourselves, requiring deep research on this illness, and reviewing the depressingly large array of research studies, most of them written with a diligent effort at making the as opaque as possible to the layman.

There are no easy answers, no one-size-fits-all elixirs or combos of elixirs. There's just the hard work of rolling up your sleeves and digging in.

Here are some things that I absolutely know, without consulting notes and calendars, helped me enormously:
  1. I stopped taking everything I was taking, supplement-wise, for about 6-8 weeks.
  2. I then added each one back separately for a trial period to see what the effect would be. If I felt about the same, no worse, or even a little better, I kept it. If not .... out. This took quite a chunk of time.
  3. Then I trialed the combo of supplements remaining for interactions, or potentiations between them. This took longer.
  4. I eliminated B-Complex, among others, because no matter how I took it, or how small the dose, it made me feel like crap. I wouldnt hvae known that, since I'd been taking B-Comp for my entire adult life, if I hadn't had stopped everything cold, then added back slowly.
  5. Magnesium (800 - 1200 mgs, divided doses) proved to be the big winner, generally speaking. It took a couple of years of experimenting and just following whatever strange instinctive thought occurred to me before I found the dose and interval schedule that worked for me, and it's been working for the last 3 years.
  6. Potassium has been a big help. I use an odd little first-thing-in-the-morning cocktail to hopefully improve my day. Some days it works better than others, but to the best of my knowledge, it's never made me feel worse.
  7. Whey Protein proved to be one of the exclusions, much to my surprize and disappointment, after using if for donkey's years to improve dietary protein.
  8. New Zealand desiccated beef liver has helped enormously. I started it about a year ago, and it's built up my system in subtle, far-reaching ways.
  9. I know there's more, and as things occur to me, I'll try to post it here and tag you.
Not sure if you've ever seen this, but just in case, here's @PatJ 's excellent list of resources to everything from treatment protocols to diagnosis:

Phoenix Rising
Our Google Site Search works much better than the forum's built-in search.

Symptoms, diagnosis
IOM ME/CFS/SEID diagnosis flowchart

Canadian Consensus Criteria - Comprehensive diagnostic criteria agreed upon by ME/CFS specialists.

International Consensus Criteria - Another document of comprehensive diagnostic criteria agreed upon by ME specialists.

Dr. Katrina Berne's CFS and Fibromyalgia Symptom List - Useful for finding symptoms you didn't realize may be related to ME/CFS.

Testing, treatment, and support
If you are looking for an ME/CFS doctor in your area, you can check this ME/CFS Doctor World Map or ask in our ME/CFS Doctors subforum.

Hip's Roadmap for Testing and Treatment - Hip is a member of Phoenix Rising who has compiled a detailed document that looks at ruling out other conditions, and covers potential treatments.

Erica Verrillo's CFS Treatment Guide 2e - An excellent in-depth guide.

ME/CFS: A Primer for Clinical Practitioners - 2014 Edition
For example, vitamin C taken isolated as supplement causes inexplainable increase in neurologic symptoms for me. It doesn't help me at all that Linus Pauling thought he was protected from all disease by taking 18 grams of vitamin C every day.
I agree. And much of what Linus Pauling attested to has been found to be on shakey pedestals. Or mayb it worked for him, but like you, not so much for me, altho C is still a mainstay in my arsenal, in divided doses thru out the day.


I hope all this has been useful. I'm not a medical professional, and everythig here is based on personal experience and experimentation, so caveat emptor, and know that the answers you come up with yourself, based on your own experimentation and trialing, are going to be infinitely better than a cookbook list of what may or may not have helped someone else.
 

percyval577

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For example, vitamin C taken isolated as supplement causes inexplainable increase in neurologic symptoms for me. It doesn't help me at all that Linus Pauling thought he was protected from all disease by taking 18 grams of vitamin C every day.
Vitamin C is useful for lowering excess glutamate. Maybe in your case it's lowering your levels of glutamate too much.
Another known action on nerves is that vit C helps to turn dopamine into noradrenalin. So this could also be an explanation, the reduction of DA or the elevation of NA.