Can supplements help persons with ME/CFS - the pros and cons

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leokitten

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THE FIRST 19 POSTS IN THIS THREAD HAVE BEEN MOVED FROM THE THREAD ABILIFY - STANFORD CLINIC PATIENTS AS THEY WERE OFF-TOPIC

If it was simply a choice between safer and less safe, I would go for supplements 99% of time (or if you want 100% safety, homeopathy). The problem is, no supplement has helped any severe ME/CFS patient I am aware of to improve in any significant degree.
I would go for further than this, no supplement has really significantly and globally improved the symptoms of ME regardless of severity level.

It’s always a thorn in my side given how many posts and threads over the years saying, “X supplement has helped me” etc. but you can tell it doesn’t really help that much long-term with these users and because same users later write new threads trying other protocols. If supplements really worked than why are the same people changing protocols? It’s because they don’t really work. If supplements really worked significantly why do you never see in testimonials a long-term change in severity level due to the supplements? You don’t see that. Maybe some supplements might help with one specific symptom which I agree can happen, but for significant help globally they are useless.

The issue for our community and all these threads on supplements helping and that the public can read really does us a disservice and diminishes how truly severe this illness is.
 
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jaybee00

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The issue for our community and all these threads on supplements helping and that the public can read really does us a disservice and diminishes how truly severe this illness is.
Important point. There are endless threads on this forum about B vitamins, viruses/antivirals, ozone, etc. None of this stuff works but it gets constantly regurgitated with each new member that joins. I think this was one of the main reasons for the split with s4me. By contrast, many on s4me can be too anti-self experimenting for my taste. They won’t take anything unless it passes multiple replicated phases 3 studies. By which time they may be very severe or worse.

I don’t see MS patients talking about their B vitamins/ozone/viruses, etc. Part of this is due to the fact that they actually have multiple FDA approved treatments, where we have nothing.
 

leokitten

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Important point. There are endless threads on this forum about B vitamins, viruses/antivirals, ozone, etc. None of this stuff works but it gets constantly regurgitated with each new member that joins. I think this was one of the main reasons for the split with s4me. By contrast, many on s4me can be too anti-self experimenting for my taste. They won’t take anything unless it passes multiple replicated phases 3 studies. By which time they may be very severe or worse.
It’s a good thing we can all be members of both forums and be cognizant of the rules in each one. At first when S4ME broke off I thought it would be bad for the community as a whole, but now I think it’s a positive thing they both exist, each with their own pros and cons.
 

Learner1

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would go for further than this, no supplement has really significantly and globally improved the symptoms of ME regardless of severity level
This is absolutely untrue. The body is a complex system of interrelated biochemical systems, which does make it difficult to have one substance do a lot, but there are exceptions to your broad based statement, like:
  1. NAD+ - this is a direct precursor to ATP production on mitochondria, which are in every cell in the body, so it can help people who have low ATP production fairly immediately.
  2. Huperzine A - I found this one out by accident, as I cannot have pyrdostigmine compounded anymore due to market manipulation of the key ingredient. It works pretty much by the same mechanism as pyridostigmine by increasing acetylcholine in POTS, allowing me to stand without being dizzy.
  3. High bioavailability curcumin - curcumin is a COX2 inhibitor, anti-inflammatory, anti-cancer, and can reduce pain and brain swelling, without the negative effects of NSAIDS or opioids.
  4. Boswellia - reduces brain swelling
Therr are more that have global effects, but these are clear winners.
The issue for our community and all these threads on supplements helping and that the public can read really does us a disservice and diminishes how truly severe this illness is.
I was very ill, and though I do take several pharmaceuticals which help in different ways (immunomodulators, mast cell meds, beta blocker, and thyroid, adrenal and sex hormones), I would not be where I am today without a comprehensive, customized supplement program. I am doing better thab other patients of my specialist who are not supplementing. At last year's NIH Conference, I spoke with all of the top specialists who all told me that their patients who were supplementing week doing better than those who weren't, and most were working with other practitioners.

There have been numerous metabolomic studies by ME/CFS researchers who have shown deficiencies or imbalances in B vitamins, antioxidants, lipids, and amino acids. This is a multi-organ system disease with infections and immune system issues, which can cause damage to the body and deplete resources. Not supplementing to try to reverse some of the damage and normalize the body is naive and unwise.
It’s always a thorn in my side given how many posts and threads over the years saying, “X supplement has helped me” etc. but you can tell it doesn’t really help that much long-term with these users and because same users later write new threads trying other protocols. If supplements really worked than why are the same people changing protocols? It’s because they don’t really work. If supplements really worked significantly why do you never see in testimonials a long-term change in severity level due to the supplements? You don’t see that. Maybe some supplements might help with one specific symptom which I agree can happen, but for significant help globally they are useless.
The body is an ever changing system. Just because you add a supplement does not give you a permanent fix. It alters the dynamics of one or many biochemical processes, which in turn affect other processes. So, making one small change can lead to a variety of effects, for good or bad. This indicates that one needs an iterative approach, making interventions, seeing how they work, monitoring over time, and making further adjustments down the line to address changes.

If you've been short of folate, for example, and methylation wasn't working because of that, adding the folate, the missing ingredient, will start to cause the methionine cycle to run faster and transsulfuration to run faster. This then will use up other ingredients, like B1, B2, B6, zinc, magnesium, molybdenum, glutamine, glycine, and cystine faster. If you run out of any one of these, or more likely more than one of these, the process will stop at that point. So then, you need to fix those deficiencies. This process is used for detoxifying bad things, so you'll have increased demand as long as you are toxic. Ideally, one day you will be less toxic, and not need so much of these.

In this way, one can see that, yes, over time, a bodies needs for these nutrients will change, and the wise patient, working with a wise doctor, will recognize these dynamics, test for them, and change the protocol.

Supplements are not useful. When poorly used with without understanding of what they do, and how they affect the biochemistry, they are useless for that patient. But when a body has the various biochemicals it needs to do the many complex tasks it does, they can be a very valuable weapon.
 

Mary

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It’s always a thorn in my side given how many posts and threads over the years saying, “X supplement has helped me” etc. but you can tell it doesn’t really help that much long-term with these users and because same users later write new threads trying other protocols. If supplements really worked than why are the same people changing protocols? It’s because they don’t really work.
I beg to disagree. I started taking BCAAs 5 or 6 years ago after Nutreval testing found I was low in leucine (which was unusual). To my astonishment, they cut my PEM recovery time by more than half. I used to be bedridden for 2 - 3 days after crashing, and now only lose one day. And this benefit, which has been huge for me, continues to this day.

I also keep trying new things, because the BCAAs have not solved the basic issue of ME/CFS, though they have helped me a great deal.

In 2010 I discovered methylfolate - it made a significant difference in my functioning, so I keep taking it. I also found that it caused my potassium to tank and so started taking potassium, and that has helped a lot too - i used to get symptoms of low potassium (severe fatigue among other things) without knowing what it was until the methylfolate. So this has helped me a lot too.

B-1, thiamine -has helped my energy levels for 4 years or so now. And it caused my phosphorous to tank. So I now periodically take a phosphate supplement as well, which allows me to take the thiamine.

None of these things have solved the central problem of ME/CFS. I didn't need all of this (plus as lot more stuff) pre-ME/CFS. I think with ME/CFS we have trouble absorbing and metabolizing nutrients, which is why I need so many things to function a bit.

13 years ago I had 1 or 2 "good" days a month - where I wasn't crashed or herxing or detoxing or sick or feeling like crap for unknown (at that time) reasons. I was still limited to 3-1/2 to 4 hours of exertion on my "good" days. Now I sometimes have 2 to 3 "good" days a week, unheard of 13 years ago. This is huge for me. So I do keep trying new things, hoping to find the Holy Grail. I have had benefit from my supplements, and continue to have the benefit. But that doesn't mean I'm going to stop looking for things to improve my functioning even further. I still crash regularly when overdoing it.

Anyways, my point is I was much worse off before I discovered several supplements which have helped me a lot. I'm not really changing protocols with all my experimentation - rather, just adding to existing knowledge.
 
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I would go for further than this, no supplement has really significantly and globally improved the symptoms of ME regardless of severity level.
That's a pretty sweeping statement, globally speaking.


It implies that you have solid knowledge of every ME patient EVER, and can absolutely state that NONE of them were helped in any way, to any extent by supps, herbs, or other ancillary treatments.

My symptoms were considerably improved, I'd say by about 50% or so, by thorough research on both the illness itself, drug trials done on it, and deep searches on the functions, effects, and mechanisms used by multiple different supps. Blindly taking vitamin X or herb Y because it helped someone else, or because of articles, often posted by financially interested parties offering to sell a solution to our suffering, is pretty futile, since the variations in this illness, both in the ways it expresses in each of us as well as the roads we all took to get to ME, make a one-size-fits-all solution illusory at best, disillusioning and possibly even damaging at worst.

Vitamins and herbs, judiciously chosen and applied, took me from bedbound, pain-wracked, and suicidal to levels that I couldn't have dreamed possible when I was considering various methods of permanently ending my pain and disability.

If supps like herbs and vitamins, etc, haven't worked for you, it could be a failure of research and application more than a failure of supps.
The issue for our community and all these threads on supplements helping and that the public can read really does us a disservice and diminishes how truly severe this illness is.
The greater disservice would be slamming the door, hard, on forms of treatment that the medical community neither supports (they prefer drugs ... lots of 'em), understands, nor prescribes, but that have provided substantial relief to numerous members of this community.


We're all aware of how severe and debilitating this illness is. We dont have to posit it as the most severe or debilitating to prove its devastating effects, nor does any member of the greater world community who's applying to this forum for help and guidance, as well as a sense of community.
 

choochoo

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@hmnr asg , @choochoo

I disagree. If you are severe supplements will not improve a sufferer with alleviation of " core " symptoms.

I have met well over 100 severe patients ( i myself have been one for 35 years ).

The supplements may help with skin or digestion and peripheral symptoms but no significant gains in health can be replicated and their is no credible science to back up anything nutritional apart from a balanced diet.

Some of the best brains in the world have attempted to break through the lack of scientific understanding of ME. They've come up with zero!
 

JES

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I don't have a problem with supplements. Like @Mary, I take quite a few supplements daily to help me functioning in various ways. I don't think the hypothesis is unreasonable that by tweaking metabolic pathways, we could perhaps see improvement in ME/CFS. The problem I have that I think @leokitten was trying to get at is, currently we have very little evidence to support the idea that supplements can be any kind of cure to ME/CFS. If there are ME/CFS patients who are improving significantly with supplementation, they need to all come forward now and tell their story, otherwise they are also doing a disservice to the community. They should list what regimen they improved on, what time frame it took and how many steps on common scales to assess ME/CFS severity they jumped on. It is still anecdotal evidence, but it would be a starting point. Currently we don't have enough of these stories, whereas Abilify alone already generated three or four threads in Reddit, the other ME/CFS forum and here over the last couple of months (even Abilify is still too early to judge).

I followed discussions that took place on this forum for over ten years. In the beginning of last decade there was a big push to treat ME/CFS patients with various methylation protocols. As far as I recall, there was one patient, @Freddd, who improved, but it turned out he had some very rare mutations affecting B12 uptake, so he basically megadosed methylcobalamin and got rid of his symptoms. Lots of other people tried similar protocols, but had very little success. @Hip did a good attempt at putting together recovery stories into another thread here. On that list, the only thing that crops up more than a few times is Valcyte. This is a good starting point, but even the evidence on that list is limited by low sample size. If one person mentions something that helped them it could just be a co-incidence, it isn't significant unless we get a decent representation.
 
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leokitten

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I think I wrote that post in a bad way. What I meant was why one person’s ME supplement protocol doesn’t work at all for most other people. And then the public reading these testimonials and thinking oh ME is just fixed by supplements.

@Learner1 @Mary I’ve tried every supplement you listed and so much, much more (probably over $20,000 worth of supplements over the last 8 years). Every damn thing people have mention on here. NOTHING WORKS

And what’s worse is if if a protocol does work for n=1 person it doesn’t generally work for even 5% of pwME, or even less. So what’s the point these aren’t treatments and cause others to spend $$$ shitloads of money in desperation and supplement failure after failure.

There should be huge disclaimers on every thread and every post about supplements or other non-treatments saying, “This is not a treatment for ME, it will almost certainly not work for virtually all of you, beware before wasting money on this!!!

We need to be bold and say supplements cannot treat ME, otherwise we are doing a disservice to the community. Just because a protocol might work for a very small sliver of ME patients does not mean it’s a treatment.
 
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Mary

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We need to be bold and say supplements cannot treat ME,
I'm not sure what you mean by "treat" ME - there are many many people on this forum who have been helped by BCAAs. Many have been helped by methylfolate and methylcobalamin and thiamine and B6 and vitamin D and CoQ10. I would be so much worse off without these. I don't think you can say these only help 5% of the ME population - you don't know. The studies haven't been done and probably won't be done. No, they don't "treat" the cause of ME/CFS but they can certainly help many with functioning. And that's huge.

There's more that I've done. It's been a very long slow process. e.g., I found that my stomach acid was low and this was first addressed many years ago, thanks in large part to my chiropractor who does muscle testing. If I'd never addressed low stomach acid, odds are the other things I take would not have helped much.

There's more that I've done, including issues of toxicity. And without addressing this, the rest wouldn't have helped much. yes, it's complex, unfortunately. I think I am merely plugging holes in a dike, which is helping but it has not, and I've never claimed that it has, solved the central problem of ME/CFS. But - I would have been very grateful if someone had told me about all the things I'm now taking, and all the issues I had to address, when I first got ill. Instead I spent the first 12 years of being sick with almost no help.

So I won't be bold and say that supplements don't "treat" ME/CFS. I was much worse off 13 years ago, and I never want to go back to that level of non-functioning.
 

leokitten

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During my first few years of ME and being on here I didn’t know that that supplements really didn’t help most pwME, so I wasted so much money because there weren’t strong disclaimers. It made me quite upset because I would’ve saved the money!
 

leokitten

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I'm not sure what you mean by "treat" ME - there are many many people on this forum who have been helped by BCAAs. Many have been helped by methylfolate and methylcobalamin and thiamine and B6 and vitamin D and CoQ10. I would be so much worse off without these. I don't think you can say these only help 5% of the ME population - you don't know. The studies haven't been done and probably won't be done. No, they don't "treat" the cause of ME/CFS but they can certainly help many with functioning. And that's huge.

There's more that I've done. It's been a very long slow process. e.g., I found that my stomach acid was low and this was first addressed many years ago, thanks in large part to my chiropractor who does muscle testing. If I'd never addressed low stomach acid, odds are the other things I take would not have helped much.

There's more that I've done, including issues of toxicity. And without addressing this, the rest wouldn't have helped much. yes, it's complex, unfortunately. I think I am merely plugging holes in a dike, which is helping but it has not, and I've never claimed that it has, solved the central problem of ME/CFS. But - I would have been very grateful if someone had told me about all the things I'm now taking, and all the issues I had to address, when I first got ill. Instead I spent the first 12 years of being sick with almost no help.

So I won't be bold and say that supplements don't "treat" ME/CFS. I was much worse off 13 years ago, and I never want to go back to that level of non-functioning.
Mary the same thing could be said about your post here. You have no true idea how few people BCAAs continue to work on, you just don’t. And while we are both on opposite sides of a knowledge gap, overwhelming historical evidence about how little effect these things have is on my side. For most people they are a waste of money.
 

leokitten

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You also have no idea of the last 13 years were due to something else, none of us really do. This disease can get better or worse for years. Unless your doctor is measuring something before that was bad and after supplements that improved it then you have no clue.
 
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leokitten

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As this thread is about abilify and it's drifted off a bit how about someone starts a new thread about the pros and cons of supplements?
It’s ok I’m done. The supplement fiasco discussion has been had a thousand times before, and in this aspect I’m more in agreement with S4ME (while other aspects/rules I agree more with PR)
 
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@choochoo
Since your post eas enclosed in a quote box, I have to copy and paste ... your quote is bolded and italicized ...

I disagree. If you are severe supplements will not improve a sufferer with alleviation of " core " symptoms.
I'm not sure how much more severe you can get than being fully bedbound and suicidal from the pain the constant myoclonic muscle contractions, insomnia, inability to eat or digest, bone and soul deep fatigue bothe mental and physical.

I have met well over 100 severe patients ( i myself have been one for 35 years ).
Considering that our world-wide population is measured at between 1.5 adn 3,000,000-plus, I don't thin that you can realistically say that you've probed a representative sampling.

Some of the best brains in the world have attempted to break through the lack of scientific understanding of ME. They've come up with zero!
And yet you're stating that you absolutely know, beyond a shadow of a doubt, that supplements, herbs, etc have incontrovertibly ZERO EFFECT on the 'core' of ME, which NO ONE, not all the scientific geniuses who've put time, effort, intelligence, and energy into the study, can unarguably define.
 

Mary

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As this thread is about abilify and it's drifted off a bit how about someone starts a new thread about the pros and cons of supplements?
You're right - it has gone off-topic, and I've been part of it. I know we've had threads about pros and cons of supplements before but I can't find one right now. So I'll start a new one entitled "Can supplements help ME/CFS?" and move several posts there. If someone objects to this title or has a better one, let me know.
 

leokitten

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I believe a thread on supplement pro/cons is a bit pointless because we will always hit a wall in the discussion without efficacy data! It will all just be hearsay. Just because one finds 30 users that say something helps that number is meaningless, and without knowledge as to why it helps certain people and not others (so that the others don’t have to waste the time and money) then it’s even more meaningless.

That can be said about drugs too (like Abilify), but supplements are far weaker than drugs, and given the severity of this illness I believe a very weakly acting compound has far less chance of helping on a broader range of people, than drugs might. That’s why ME researchers don’t do many of any studies on supplements, they do them on drugs.
 
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