Supplements do not have any real effect on symptoms

[leokitten]

I hope this is not going to be a controversial thread and I apologize ahead of time if it upsets people, I really don't mean to you will see below what I'm trying to understand.

With all the testimonials I constantly read on PR about supplement X completely improving symptom Y, or e.g. combination of supplement A,B,C totally improving symptom D, I tend to feel that gosh even though I have ICC/CCC ME/CFS that something is different with my disease than others?

In the almost 2.5 years I've had this disease I've been taking all sorts of different supplements and combinations based on what research I read and testimonials here on PR, which I do appreciate so much because we are all helping each other with our experiences.

But no supplement or herb, absolutely nothing has ever changed any symptoms of my disease, or if it does affect some symptom it takes so many months to years to do this that there is no way I could attest it had any causation.

Are other people in the same boat as me?

Another thing I wanted to mention is when I've connected the dots and tracked posts from the same PR users over the years saying X greatly improved Y, and then A greatly improved B, and then C greatly improved D you would think that with all those testimonials and improvements to different symptoms that they would be significantly better now, but then you read more recent posts by the same user and they are in terrible shape.

What is the disconnect? Are supplements only working for a while and then nobody posts follow up negative testimonials? Or are people wrongly associating a supplement or combination of to symptom improvement when it really had nothing to do with it?

 

[Battery Muncher]

I think it just depends on your particular version of ME/SEID. I don't think we can generalise because, as has been mentioned on here many times, there are probably many different subgroups of patients.

For what it's worth, I am similar to you. Whilst some on here mention having MCS/quite extreme reactions to almost anything, I find that I very rarely experience significant reactions to most supplements. In fact, I often feel that many drugs - e.g. paracetemol - impact me less than they did before I contracted this disease. On the whole, I am very unreactive.

I had something else I wanted to say, but I've forgotten. Sorry!

 

[heapsreal]

Interesting .

I think its hard to quantify improvements or effects. But then somethings we cant tell until we stop and start and see a drop in function or worsening symptom.

sometimes I find we have to stop and start things a few times to tell.

today I was actually thinking how do i quantify what helps me, including meds and supps. Its hard to put a figure on it and to set limits on this rating. But also this illness fluctuates alot itself which makes it harder.

the things that have helped me function the most are antivirals and sleep meds, lets say i give them a score of 50??

Most supplements are a 1 or a 2 and i use them mostly because of some research or advice from an expert. An example would be q10 and carnitine where there is research to show cfsme have low blood levels. I have felt some stimulation from them and over time this has calmed down. I take other supps and think of them more of reducing damage or the speed of damage being down such as the antioxidant theory , so not a lot of immediate obvious effects??

The other thing i would rate higher with more obvious immediate effects and reduced effects when stopping them are hormones such as dhea and pregnenolone. Rate them at a 10??

the other thing is its hard to measure their effect all together, is there some sort of synergy??

I often think if some things are worth the money or not . Currently im in need of quite a few things but cant afford them all immediately so i need to prioritize things. The iherb order will wait and the famvir and lyrica will be next pay.

 

[Hutan]

Yes, @leokitten, I think I and my son are in the same leaky boat as you.

It is so hard to tell if the supplements work given the significant fluctuations in symptoms. I think the only thing that reliably influences how well I am is how much resting I have been doing.

So, maybe I haven't got the right supplements yet, or the right dose... Taking supplements feels like some action towards getting better...

My son and I were Vit D3 deficient and so we supplement for that and our tests suggest we are not so deficient now. And we get worse in winter. So maybe that is one worth doing, given the symptoms of deficiency are a lot like parts of MECFS.

I like the Chinese tonic we take (Astralagus, Ginseng, Reishi mushroom, licorice root and the like). Maybe thousands of years of Chinese experimenting is worth something? And it tastes like medicine, surely it is doing something.

Valtrex controls persistently recurrent cold sores. I know that because if I miss even two days in a row, I get a cold sore. Does it help anything else? I don't know.

Often when looking back, I'm not sure, did I get slack with the supplements (ie miss doses) and then feel worse? Or did I feel worse and not manage to keep things well organised and on track, and, as a result, missed doses?

 

[leokitten]

Yes, @leokittenIt is so hard to tell if the supplements work given the significant fluctuations in symptoms. I think the only thing that reliably influences how well I am is how much resting I have been doing.

This is exactly the only thing that improves my symptoms, resting as much as possible outside of work and with an insane amount of rest I do start feeling better. No drug or supplement has ever made any great effect like this really.

The problem is that it takes an impossible amount of rest. Back in late 2013 (10 months with ME/CFS) I had a short time when work was going pretty easy and I purposely went to bed the moment I came back from work until the next morning and aggressively rested on the weekend and after a bit over two weeks of doing this religiously I felt almost normal again and most symptoms subsided. But it doesn't ever last once I stopped it because it was just too much then everything just got worse again.

So, maybe I haven't got the right supplements yet, or the right dose... Taking supplements feels like some action towards getting better...

Sounds like placebo effect?

My son and I were Vit D3 deficient and so we supplement for that and our tests suggest we are not so deficient now. And we get worse in winter. So maybe that is one worth doing, given the symptoms of deficiency are a lot like parts of MECFS.

I agree, with all the labs looking for obvious issues I found out I was low in vitamin D and iron and have been supplementing both for a long time. They have slowly come up to good levels but still absolutely no effect symptoms.

I like the Chinese tonic we take (Astralagus, Ginseng, Reishi mushroom, licorice root and the like). Maybe thousands of years of Chinese experimenting is worth something? And it tastes like medicine, surely it is doing something.

This also to me sounds like placebo effect. I'm not meaning it in any negative way, placebo effect accounts from approx 20% of the efficacy of drugs that are known to really work so it's something significant.

I think the reason many of us continue to take supplements is because of this and because of the fear that if we stop we might get worse, but not because we have any proof that they are doing anything real?

 

[Hutan]

Taking supplements feels like some action towards getting better...

No, not even placebo effect. I'm not saying they make us feel more well. Just that taking pills/trying stuff is more proactive than only sitting around resting and just waiting to get better.

And it tastes like medicine, surely it is doing something.

And that one wasn't a placebo effect either, it was an attempt at sad irony. I have no idea if the tonic actually does help.

 

[leokitten]

No, not even placebo effect. I'm not saying they make us feel more well. Just that taking pills/trying stuff is more proactive than only sitting around resting and just waiting to get better.

This is true, the problem I say to myself though is that all these darn pills cost a lot of money, $100s per month if you take it seriously. Is it worth it just to not feel bored or to feel like you are doing something proactive? Could that money be better spent on something else?

 

[heapsreal]

I looked in my cupboard for some things I have used . I can put them in a list of uppers and downers, if they were strong enough or not is a different story.

uppers, acetyl tyrosine, nad, noopept, aniracetam, dmae, alpha gpc, dopa macuna, 5htp,. The effects are a noticeable mood boost to an energy boost like a couple of coffees some are clearer thinking. Dopa macuna boosted energy but makes me sweat too much. sometimes the stimulation is helpful and other times can make me feel worse , hard to judge .

Downers or sleepers, tryptophan on an empty stomach can help me geel sleepy but not sedated , was helpful more middle of the night awakenings and not waking up later groggy.
phosphatidylserine suppose to lower cortisol, i haven't had this tested but it does improve sleep quality when i feel like im going through a high night time cortisol stage. Kava was ok but as an add on to other meds or for early awakenings as no hangover.

Generally supps I find for sleep can help as an add on but not by themselves . I found valerian was no more than extra fibre in my diet.

i should write a book on what I have taken .

 

[SOC]

@leokitten,
I think there are a number of things that are confounding your analysis of the benefits of supplements.

First, you are trying to work full-time and are living in a constant state of PEM, according to other posts of yours. Many of us have found, and reported at PR, that very few treatments -- supplements or conventional medicine-- work well when we are taxing our bodies to that degree. Most of our top specialists will tell you that you need to rest and not push-crash in addition to treatment for it to be effective. You can't keep stressing an already damanged and overstressed system and expect it to heal effectively. So your n=1 study indicating supplements don't help has significant confounding factors clouding your analysis.

Second, very few PWME claim that any supplement cures, or makes a vast improvement, in ME/CFS. What some supplements can do for some PWME is give an increment of improvement or preserve some degree of health. The fact that people report a noticeable improvement in some symptom for some period of time should not suggest to anyone that they are cured, or even not still in terrible shape. They just have some degree of relief from some symptom. When you're as sick as many of us are, that's a big deal.

A number of us have nutritional deficiencies that benefit from supplementation. Antioxidant and anti-inflammatory supplements are likely beneficial for many PWME given the demands of ill-health on our bodies. Do they make huge impacts on the major symptoms of ME/CFS? Probably not. Do they help? Probably. But not every supplement helps everyone, nor do they help to the same degree in people they do help. It depends on what your body needs.

I don't think people are wrongly associating supplements with improvement as a general rule. I think you are misunderstanding the reports. When someone reports, say, enough improvement in energy from a supplement to move them from completely bedbound to barely able to dress and cook for themselves, that's huge for them, but it's not a cure. They're still very, very ill. That doesn't mean the supplement didn't give them a worthwhile QOL improvement. So yes, they're still here at PR and still reporting that they're very sick, and yes, the supplement was definitely beneficial.

It's possible that as a PWME who is currently still able to work full-time and socialize to some small degree, your body is not in as bad a shape as that of many other PWME here at PR. So you may not need (and therefore not benefit from) supplements in the same way as people whose bodies are in much worse condition than yours. That does not mean those people are misrepresenting the benefits of supplements to them. It may mean that supplements will not improve your condition to the same degree is does theirs, which is an entirely different conclusion.

Thirdly, iirc, the systems biology work being done by Broderick et al is suggesting that order of treatment may matter. That is, some treatments will not be as effective until other treatments are in place. If that is the case, certain supplements that are not effective at one point in treatment might be effective at another point.

My personal experience is the conventional medications have had the largest effect on my symptoms, but that some supplements also help to some degree. For me, it's not one thing that brought me from bedbound to taking care of my ADLs and working full-time (though underemployed at an easy job with understanding clients). It was a question of many treatments/supplements each improving my condition a small amount. It adds up nicely, but no single treatment or supplement did 90% of the job.

I suggest that if you want treatments -- conventional medicine or supplements -- to significantly improve your condition you are going to have to learn to pace effectively. That's common knowledge in the ME/CFS world. Every specialist and 99% of the patient population will tell you the same.

 

[Mary]

@leokitten - I'm definitely better than 7 years ago, due to specific supplements. sometimes it is difficult to know if a particular supplement is helping or not, but other times I can see an almost immediate effect on symptoms.

Things that I know have helped me (and continue to help me) are methylfolate, potassium, B6 (P-5-P), branched chain amino acids, l-glutamine, inosine, glycine, maybe others. The methylfolate caused an almost immediate increase in energy which has not gone away. It also greatly increased my need for potassium, and it also made me realize I'd had a chronic potassium deficiency even before I started the methylfolate -the same sort of horrible fatigue - so now I take a lot of potassium and no longer have THAT particular fatigue.

The branched chain amino acids have shortened my crashes (PEM) noticeably to where I recover generally within a day. Several years ago it took 3-4 days to recover. My immune system is also stronger, I get over being sick more quickly.

7 or 8 years ago I had one to two "good" days per month - a good day was when I was not herxing or detoxing or crashed or sick. And on a good day I could do about 3-1/2 hours of light activity - any more and I would crash the next day. Well, I now generally have maybe 2 to 3 good days a week - I'm still quite limited in my activities to avoid crashing but overall feel better.

I used to detox a lot, and that seems to have stopped. Something is working better.

I've found that dosing is very important. If I didn't take enough of something (e.g., P-5-P), I wouldn't get results. Supplement brand is also important. Some brands just aren't very good.

One thing that has been invaluable to me in determining what helps me and what dose to take is muscle testing, done either by myself or my chiropractor, or both.

And there are things I take that I can't tell if they do any good or not - dhea and pregnenelone which my doctor recommended - I don't know if they're helping but I take them.

Adrenal glandulars given to my by my chiro were invaluable when my adrenals were wiped out and I still need them periodically.

Niacin, l-theanine, 5-htp and glycine all help me with sleep.

I suggest seeing a competent practitioner (often a chiropractor) to help determine what you need, and how much. There are competent and incompetent ones, just like there are competent and incompetent doctors.

I have days when I feel so well (which I never used to have) I think that my body has to be capable to functioning properly but then I crash. But I have made progress so keep on trying new things!

eta: I just saw that you are working or trying to work full-time. If that's the case, then I agree, no amount of supplements will help. You can't do that and recover. You can't push through or work through PEM.

 

[leokitten]

Second, very few PWME claim that any supplement cures, or makes a vast improvement, in ME/CFS. What some supplements can do for some PWME is give an increment of improvement or preserve some degree of health. The fact that people report a noticeable improvement in some symptom for some period of time should not suggest to anyone that they are cured, or even not still in terrible shape. They just have some degree of relief from some symptom. When you're as sick as many of us are, that's a big deal.

A number of us have nutritional deficiencies that benefit from supplementation. Antioxidant and anti-inflammatory supplements are likely beneficial for many PWME given the demands of ill-health on our bodies. Do they make huge impacts on the major symptoms of ME/CFS? Probably not. Do they help? Probably. But not every supplement helps everyone, nor do they help to the same degree in people they do help. It depends on what your body needs.

I don't think people are wrongly associating supplements with improvement as a general rule. I think you are misunderstanding the reports. When someone reports, say, enough improvement in energy from a supplement to move them from completely bedbound to barely able to dress and cook for themselves, that's huge for them, but it's not a cure. They're still very, very ill. That doesn't mean the supplement didn't give them a worthwhile QOL improvement. So yes, they're still here at PR and still reporting that they're very sick, and yes, the supplement was definitely beneficial.

Apologies if I was misunderstood but I read my post again and never said or implied the word 'cure' anywhere. I was saying that if you string together a PR user's testimonials over time and they get X symptom improvement from supplement Y, A improvement from B, C improvement from D, etc etc. If you put together all these symptom improvements it should amount to a significant improvement overall. But it doesn't, I always end up reading that that person is doing terribly.

I suggest that if you want treatments -- conventional medicine or supplements -- to significantly improve your condition you are going to have to learn to pace effectively. That's common knowledge in the ME/CFS world. Every specialist and 99% of the patient population will tell you the same.

I understand this completely but as I've stated in other posts it is just not realistically possible for many of us so I'm trying to find other solutions. There is no more pacing I can do without ending my career and/or potentially driving my partner out of my life.

Imagine with any other major disease if you were to tell a person "well the only way you are going to get better is to drop your career, stop working, completely stop your life to focus totally on your illness and managing it for the next X years and maybe it will improve". It's just not realistic at all. Even people with severely life threatening diseases don't do this, e.g. cancer patients come back to work and continue with their lives.

 

[SDSue]

Imagine with any other major disease if you were to tell a person "well the only way you are going to get better is to drop your career, stop working, completely stop your life to focus totally on your illness and managing it for the next X years and maybe it will improve". It's just not realistic at all. Even people with severely life threatening diseases don't do this, e.g. cancer patients come back to work and continue with their lives.

And therein lies the hell of ME/CFS. Inadvertently, you’ve made a great point - PWME can be more disabled than many cancer patients. Remember, however, you aren’t seeing the cancer patients who cannot make it out of their beds, and the ones who do are being seen on their good days. Sound familiar?

I don’t fault you for your views, I just find them born of the naiveté of one with “mild” ME. When I had the luxury of being mildly affected, I certainly couldn’t have fathomed just how low this disease could take me and how much I could lose.

One of the most insulting things I’ve heard while being bed bound with ME is “Well, you’re lucky you get to stay home. If I got sick, I would have to keep working. I don’t have a choice.” Be careful tiptoeing around this one - there are members on PR living in their cars or on a friend’s sofa, and some who’ve committed suicide after losing everything. Those aren’t choices, they are the dire consequences of a severe, unrelenting illness.

I understand this completely but as I've stated in other posts it is just not realistically possible for many of us so I'm trying to find other solutions. There is no more pacing I can do without ending my career and/or potentially driving my partner out of my life.

“Not realistically possible” simply means you haven’t yet reached the depth of ME where your level of activity is “not possible”, and there’s a huge difference.

I envy your level of illness. Not that you aren’t suffering, but you still do have one very important choice left - the choice to cut back on your activity and possibly spare yourself the interminate hell that many of us face daily. I wish you the very best in making decisions today that will positively affect the rest of your life.

 

[helen1]

@leokitten There are several threads about people who have recovered or remitted or had significant long lasting improvements. Most of these found supplements or other non-mainstream therapies an important part of their improvement. These people are still doing well. Off the top of my head, I can think of Asklipia and her husband, Catseye, freddd, greenshots, Red04's wife, Caledonia, undcvr. I'm sure there are others, those were just who came to mind.

To say that nobody's improvements from supplements last is just not true from what I've read.

 

[Mij]

Imagine with any other major disease if you were to tell a person "well the only way you are going to get better is to drop your career, stop working, completely stop your life to focus totally on your illness and managing it for the next X years and maybe it will improve". It's just not realistic at all. Even people with severely life threatening diseases don't do this, e.g. cancer patients come back to work and continue with their lives.

M.E is a distinctive debilitating illness where push and crash will make you worse in the end. That is the reality.

 

[Valentijn]

My experience is that several supplements have had pretty good and consistent impacts upon my symptoms, but not upon my level of disability:

1. Without fish oil, I have a constant headache. Within 12-24 hours of taking fish oil, this headache goes away. If I forget to take fish oil for a day or so, it comes back. I've accidentally tested this reaction several times
2. NAC keeps me from feeling "wired" and makes it much easier for me to fall and stay asleep. I ran out of it yesterday and the refill won't arrive for about a week, so I guess I'll be testing that reaction again as well.
   
3. Yohimbe helps a lot with my OI to the extent that I can usually sit up all day now. That means that I can use my laptop, and sitting up is much less painful than having to lie down most of the day.

Those supplements have a big impact on my symptoms: I sleep pretty well now, I don't have that constant soul-crushing headache, and I can sit up and do far more interesting things. I'm not really any more independent or functional because of these supplements, but my life is quite a bit better as a result of taking them.

 

[adreno]

I don't think it's productive to talk about "supplements" without further qualification. In many cases, differences between supplements, drugs and hormones are a question of classification, and there is significant overlap between them. In effect, all of them are chemical compounds, and every chemical ingested has an effect, although many might be too subtle for many to notice.

The often used arguments, "supplements don't work", "are purely placebo", or "has no effect" is nonsense. Vitamin C, potassium, choline, etc work exactly like they are supposed to, the question is whether you need them or not. The real kicker in this game is that manipulating biochemical pathways is extremely complex, and for several reasons:

1) our understanding of human biochemistry is incomplete
2) our understanding of the pathophysiology of ME is (very) incomplete
3) it's difficult to monitor our biochemical configuration
4) manipulation is difficult because of the extreme level of interaction in the biochemical system

Basically it's like trying to solve a 12-sided rubik's cube, blindfolded.

 

[Mary]

@leokitten - Here are some vitality scores from the IOM report where they compared CFS to several other illnesses:

VITALITY SCORE
Healthy people 60-70
congestive heart failure 29
Chronic hepatitis C 48
Rheumatoid arthritis 43-52
ME/CFS 15-20

We are ridiculously disabled for people who look so well! And that's the kicker, as someone else said - we are in the main very very disabled, much more so than most other illnesses, including cancer in general (though I know people who have died from cancer and couldn't work the last couple of years, often due to their treatment). And no one believes us. It's like a special form of hell. I kept working for 3 years after I started crashing in 1998. I finally had to quit in 2001 - and am very very slowly trying to climb my way back to health. I'm better than 14 years ago. That's all I can say for now. (my sister has rheumatoid arthritis and runs rings around me, swimming almost every day, but all her doctors believe her - she has a "real" illness!)

 

[Denise]

Imagine with any other major disease if you were to tell a person "well the only way you are going to get better is to drop your career, stop working, completely stop your life to focus totally on your illness and managing it for the next X years and maybe it will improve". It's just not realistic at all. Even people with severely life threatening diseases don't do this, e.g. cancer patients come back to work and continue with their lives.

I know people with other illnesses who have left the work force for years at a time to focus on their health. It may not be the norm but it does happen.

SSDI (and many long-term disability policies) has a Return to Work program (http://www.ssa.gov/redbook/eng/returning-to-work.htm) that continues disability benefits for a period of time when one returns to work. (SSDI benefits continue if the trial work period does not work out.)

 

[leokitten]

@leokitten, most supplements I've tried have had an immediate and dramatic effect on my symptoms, usually negative. Then again, I have moderate-bordering-on-severe ME, having previously had severe ME. When I had severe ME, I couldn't take any supplements of any kind without "allergic" reactions. When I was mildly ill I could gobble up any pill and notice nothing so I had the luxury of believing in fairytales like the placebo effect and I looked down on people who took supplements because only a moron would take a supplement, right?

Your views on this illness are not aligned with reality and you seem to lack the ability and/or willingness to learn from what PWME who have severe forms of illness have been telling you on this forum. Lying in bed all day is not a luxury. Being homeless or couch surfing is not a luxury. Having to quit your job or losing your marriage is not a choice. It's just stuff that happens when you become too sick to get out of bed or sometimes even roll over in bed.

I've already said everything I had to say in response to your inflammatory comments on the rituximab thread. I just hope you never reach the depths of ME hell where you've been dragging your ass to work for months or years with ever-worsening symptoms until one day you collapse at your desk and you're having an afib and your supervisor has to drive you to the ER. And then the ER gives you the all clear a few hours later only to find yourself struggling to walk to the bus stop due to severe POTS and you practically crawl home hours later totally confused and disoriented and never get out of bed again for many months except to attend some pointless doctor appointments.

Ok I understand but why the character attack? Why can't you just say "@leokitten, supplements seems to work less in general with people who have milder ME/CFS", end of story. This was a completely pleasant thread and I was not making any inflammatory comments or attacking anybody at all.

 

[Hutan]

This morning as I take my handful of supplements I have been thinking about this thread. It is true that I can not discern any benefit from most of what I take. So why do I keep spending money on them?

I think healthy food might be a useful analogy. We know broccoli is good for us. Why? Because there are studies that suggest it might be, but probably mostly because experts in nutrition and people we trust like our mothers tell us that broccoli is good for us. So we eat it, and when we do, if we take the time to analyse our food choices, we feel good. No, we don't suddenly feel a burst of energy or think better. But we do feel that we have done something positive for our future health. If it's organic broccoli, well, we might feel even better about our choices.

If we stop eating broccoli, do we feel worse in the short term? Almost certainly not. Do we feel worse in the long term? Maybe, but maybe not, especially if we instead ate plenty of cabbage. But still, I think, most people would say that eating broccoli is a good thing to do for health.

So, I think there is a bit of evidence that, for example, fish oil helps with health in general. There isn't much evidence that moderate amounts of fish oil are harmful, so long as your supplement doesn't have mercury in it. And I figure my body needs all the help it can get. So, I take fish oil. Ditto for the fibre that I sprinkle on my cereal. And so on..