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

[YippeeKi YOW !!]

In my experience supplements did help me and they gave me a life that was worth living, and nobody can tell me that they are a waste of money.

So, so, soooooo totally agree.

It may not be the life I used to have, but it's a life I can find value and pleasure and reason for hope and gratitude in, which is light years away from where I was.

 

[YippeeKi YOW !!]

@leokitten said:
What I meant was why one person’s ME supplement protocol doesn’t work at all for most other people.

This isnt entirely true. A fairly significant proportion of us have found that we need considerably more potassium than most other non ME population segments, and there are a few other supps that seem to have a wider acceptance and usefulness to many of the members here.

But it is true that there's no one thing that works for absolutely everyone, or even necessarily in exactly the same way for everyone. I think that's probably because, unlike prescription drugs which are powerful (and often potentially powerfully damaging) isolated substances, often juked to the max in order to do just that: produce a predictable effect in pretty much everyone, supplements work on a different level and mechanism of action, and often take much longer to produce quantifiable results.

 

[YippeeKi YOW !!]

I've attached a paper explaining this approach.

Thank you for posting that attachment .... like you, I'm also a stage 3 cancer survivor, and have absolutely nooooooo interest in taking that ride again. I try to balance the number, dosage amount, and type of anti-oxidants that I take, but Im never sure that I'm successful in that effort.

 

[YippeeKi YOW !!]

It’s that drugs generally have a much more significant effect on disease symptoms over a broader range or people with the disease or disorder than even highly tweaked supplements derivatives.

I'm more or less repeating what I said above, but I think it's a critical distinction, particularly in the seemingly endless colloquy in these threads about the validity, or presumed lack therof, of supplements vs. prescription drug protocols.

The reason that prescription medications work so well and on such a huge proportion of the population is because they're designed to do that. They're isolated, very powerful and sometimes very powerfully damaging chemicals that have had their properties heavily and intentionally increased to the maximum extent possible without killing the patient outright in order to produce the same, predictable effect in an extremely large percentage of the population.

They're sledgehammers, and extremely effective when they're correctly prescribed, but because they are isolated from the many other co-factors present in their more natural form, they're dangerous when used inaccurately or inappropriately, and can sometimes have unexpected and negative effects.

Also @leokitten , I'm not sure what you mean when you cite '.... highly tweaked supplements derivatives....'

EDITED .... for vast array of typos and excessive commas .... it's always something ...

 

[pattismith]

Today I have to quit Nicotinamide Riboside. After improvement, I started to get worse, with muscle pain and calcium oxalate crystals showing up in my urine.

It's discouraging to fail with a supplement after big hopes, but all the positive effects I had from supplementing helped me to stay alive, still working every days... And when I have to go through a very bad day, I know I will be able to find something that will help me to feel better soon and win my daily battle.

Iodine, Thiamine, Cortisone, Inosine, caffeine, Nicotinamide Riboside, all of them had good effects, but taking them on a regular basis failed to sustend the benefice.
Antibiotics too like Azithromycin and Tinidazole proved to bring me some precious benefices, but I cannot tolerate them on the long run.

 

[YippeeKi YOW !!]

Hiya @pattismith , you were my first hero on this site, you're still one of my heroes, people I define as being fearless in their pursuit of something that helps them with this pissy little stinging horsefly of an illness, whether it's a supplement or a prescription drug, whatever ...

And when I have to go through a very bad day, I know I will be able to find something that will help me to feel better soon and win my daily battle.

You've highlighted something so important, so critical to survival, so essential to all our well-beings, that we often overlook its importance and take it for granted until we realize that it's gone: HOPE .... " ....The thing with feathers / That perches in our soul,/ And sings the song without the words .... And never stops at all ...." (Emily Dickinson, whom some have theorized may have suffered from a version of this illness herself).

The major benefit of being forced to take our treatment into our own hands is that we learn that there's always something new, something else out there, something that can replace whatever has stopped working for us, or maybe was a disappointment in the first place, and this belief, this hope, can keep us going when all else has failed.

I'm sorry that your fixes have stopped working, or slowed their beneficial effects, but there's something else out there, waiting to be discoverd by you, which will replace it with potentially even greater benefits.

Sending a large series of ....

And onward and upward !!!

 

[splusholia]

It was genuine screaming hell.

God, yes. I find it very hard to describe. It was as if I was living through my own death. The thinking, existing part of me was still alive but the rest of my body was unresponsive. Occasionally, I would have to leave the house. This was because I didn’t have anyone who could continually look after me, so even when I was very ill I had to go between two places. This meant I had to be picked up, and carried down the stairs with a blanket over my head. In the car I would sometimes pray that we would crash and I would die just so I could end the suffering. But I wasn’t depressed! I absolutely wanted to live; I just didn’t want to suffer every moment of the day.

You've highlighted something so important, so critical to survival, so essential to all our well-beings, that we often overlook its importance and take it for granted until we realize that it's gone: HOPE .... " ....The thing with feathers / That perches in our soul,/ And sings the song without the words .... And never stops at all ...." (Emily Dickinson, whom some have theorized may have suffered from a version of this illness herself).

And this is so true and what a lovely poem to quote. Without supplements, I had no hope. When I realised that choline could make my muscles a tiny bit stronger and thiamine would mean that I was less dizzy, it opened up a world of hope. And I’ve probably spent thousands of pounds on things but haven’t worked, but I’d rather live in hope. Because to me living in hope is the rational thing to do. If I never get cured, then at least I lived a happier life because I had hope.

 

[YippeeKi YOW !!]

God, yes. I find it very hard to describe. It was as if I was living through my own death.

But I wasn’t depressed! I absolutely wanted to live; I just didn’t want to suffer every moment of the day.

You've put it into words perfectly.

Like you, it wasn;t that I wanted to die, I just couldn't go on into a endless, dank, wretched future filled with emptiness, loneliness, uselessness, isolation, pain, hopelessness. It was agony on every level. And after years of descending into it and then living with it day after day after day after day, I just couldn't make a good case to myself for going on ....

Because to me living in hope is the rational thing to do. If I never get cured, then at least I lived a happier life because I had hope.

What a lovely, lovely, LOVELY well-expressed heartfelt sentiment. I second it and third it ad infinitum, and hug you for your incredibly grounded and well-thought out philosophy ....

Hope may not change anything, but it makes the journey much pleasanter, and in the end analysis, I think it makes a huge difference in the outcome, tho many would scoff at that ....

 

[stefanosstef]

I've been helped by supplements.To quantify this, I'd say that 10% of what I've tried gave me a minor improvement, short term or long term, the rest did nothing.

This disease is not a ghost, it has specific pathophysiology that causes specific changes in the way our bodies work, some of which should be treatable to an extend.The philosophy I live by when it comes to any problem, is summarized by this quote "Almost anything can be solved, except death".Stoicism is very helpful in dealing with this disease.We can only fight, we don't have an approved drug yet, so I can only fight with supplements and drugs meant for other diseases.And of course the way of living, diet, sleep, stress and energy management etc.

 

[YippeeKi YOW !!]

This disease is not a ghost, it has specific pathophysiology that causes specific changes in the way our bodies work, some of which should be treatable to an extend.

You've summarized the logic behind trialing different things, whether supps or herbs or homeopathy or off-label uses for something for an entirely different condition or disease just perfectly.

This is what we have to fight with. It's all we have to fight with. It;s hit or miss, it isnt necessarily cheap, it's frustrating sometimes to the point of tears, it's hard and demanding to do the research and all the reading, evaluating, and processing involved with finding something that actually might help, but when somethng makes a difference, even a small one, the sense of exhilaration is itself healing.

We can only fight, we don't have an approved drug yet, so I can only fight with supplements and drugs meant for other diseases.

I agree. I'm baffled by why anyone would choose to live in the anger and fear and hopelessness that rejectng the possibility of the 10% improvement, from whatever source, which might then be built on for another 10%. And maybe another. And another.

Holding out for the Total Holy Grail is just too hard, too pointless, for me. I'll take the 10%, even if it proves to be temporary. It indicates that there are things out there that can make a difference, that I'm not living in some sort of Evil Fairy Curse with no resolution, no help, no remediation, just a slow lingering deterioration while I wait for someone out there to miraculously solve the riddle for me.

Onward and upward !!!

 

[Learner1]

I have very systematically tested and used supplements to respond to deficiencies/imbalances found, while using an activity/sleep/HRV tracking device.

In this way. I've found that symptom improvement, lab result improvement, and what my tracker says correlate very well. Therefore, I seriously doubt that desperation or the placebo effect are driving improvements.

 

[ljimbo423]

I've been following this thread for a while. Personally I see both sides of this as true for each person, based on "their" experience.

You believe that supplements are not helpful and are in fact more harmful than helpful. This is your experience and is very real.

Others have experienced help and improvements from supplements. Why can't both experiences be true for each individual? Remembering that each of us have our own individual experience and therefore our own "truth" from that experience.

I was severe for 6-8 years, spending almost all day and night in bed. Often so sick I didn't know if, or when, I'd be able to make myself something to eat or if I'd have to spend days going hungry.

Through diet changes and and trying probably 100 or more different supplements over the last 13 years. I'm now mostly mild and do 6-7 hours a day of physical activity and never spend time in bed except to sleep at night.

I don't take any medication except an OTC antihistamine. I realize that my experience is very unusual or even rare but for me, life changing.

 

[Mary]

THIS THREAD IS BEING REOPENED. PLEASE KEEP IN MIND THAT ALL POSTS MUST BE RESPECTFUL AND CIVIL. RULE 1 (FORUM RULES EXPLAINED) PROHIBITS (AMONG OTHER THINGS) "referring to a treatment that a member finds helpful in a contemptuous manner" AND ANY POSTS VIOLATING SAID RULE WILL BE DELETED.

 

[sometexan84]

My opinion on supplements (for ME/CFS) ...

I believe supplements are helpful for my long-term treatment.

But I don't base the efficacy of a supplement on how it makes me feel. I don't trust my symptom changes. I can't. My symptoms fluctuate too much to use them as a measure of success.

I know going in that starting on CoQ10, or L-Carnitine, or whatever isn't going to significantly improve my health. I do it for "supplemental" support.

I look at the numbers on my lab results to measure success. I have complete faith that my symptoms correspond with my lab results (e.g. viral titers going down).

 

[Mary]

THIS THREAD IS CLOSED FOR MODERATION