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

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JES

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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.
It is problematic. The longer the time frame for improvement, the more other potential factors creep in that could also have contributed to mentioned improvement. If one would feel a benefit straight away or within, say, at most a couple of weeks, it could be reasonable to attribute that to the supplement. I generally don't take any new drug or supplement I trial for longer than 2-3 weeks because any improvement that hasn't come in that time period gets harder to judge and most things I try make me feel slightly worse from baseline anyway, so it wouldn't be worth the pain going through things for months on end.
 

leokitten

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Most FDA approved drugs aren’t curative either, for me that’s not the main problem with supplements. 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.
 

Mary

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@leokitten - because of this thread that you posted, First time in remission with ketogenic diet , I tried the ketogenic diet back in November 2018. I had a bad experience with it, which I posted about here: Bad experience with keto However, even though I did badly on a keto diet, I didn't wish you had never posted about it. I know many people do well on it. You did well on it for some period of time (I don't know how long) and I know you recently posted some negative things about it.

People here post about what does and does not help them. No one here has the answer for any one else. However, no doctor has the answer for any of us either, so we're all guinea pigs and all have to experiment on ourselves.

I see no difference between you posting in great detail about keto, and someone else posting about a particular supplement which helped them. Neither of you is claiming to have the answer for everyone, and all members should be aware that no one here has the answers. No one here is allowed to give medical advice or tell anyone what to do. I've tried more things that DIDN'T help me, than things that did. But the things that have helped me have more than made up for the things that didn't. The alternative for me was to do nothing.

It is interesting how people here post so much about the Bs - instead of mocking this, I would think it might make researchers take a look at this. Why do so many of us need such high doses of so many things? I think it's because there is a problem with absorption and metabolism of various nutrients - what's causing this? Our cell membranes? I don't have the answers but I think these are valid questions and should not be written off.
I don’t see MS patients talking about their B vitamins/ozone/viruses, etc.
@jaybee00 - you might take a look at this article: What to Consider When Supplementing B Vitamins for MS Symptom Relief (from Multiple Sclerosis News Today) Apparently they do talk about the B vitamins.

https://pubmed.ncbi.nlm.nih.gov/28875857/
 
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leokitten

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@Mary the ketogenic diet is a somewhat different story. It has significantly helped a lot of people across most of their core ME symptoms and it works for a long time, including myself. It’s doing something that really does tackle some core part of this disease. Any specific supplement or protocol doesn’t seem to do given my discussions with ME clinicians and anecdotal evidence on this site. The keto diet working also makes sense given the metabolomics research findings in ME too, supplements just don’t have research linking to potential efficacy.

These significant findings regarding keto and the number of people that it’s helped were enough that ME researchers are even studying it as a potential treatment. They aren’t doing that with supplements with any seriousness.

The issue with the keto diet is that it is REALLY difficult to maintain therapeutic enough ketosis long-term. And it’s a complex and time-consuming protocol to follow, and I tried to tell people how to do it and to check they are always in therapeutic ketosis (in blood) because it’s not easy like swallowing pills. I sincerely feel percentage of people that tried it and said it didn’t work couldn’t do it correctly or had initial bad symptoms and gave up before it could work (I’m not saying you are part of this group at all).

Since the ketogenic diet, I haven’t seen anything that rises to that level until now with Abilify, and I only tend to chime in regarding treatments on this site and S4ME when things are beyond background noise, which I frankly feel supplements mostly fall into.
 

leokitten

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And before the ketogenic diet stories I haven’t seen anything else supplement or diet-wise since 2013 when I got sick that truly rose above background noise (i.e. significant broad improvement across core ME symptoms in a significant number of people)
 

sometexan84

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Not sure if everyone considers all these as "supplements", but the following (non-medications) are what I have been taking specifically to target Echovirus 11, Coxsackie B4, Streptococcus, gut dysbiosis and leaky gut.

Quercetin, Probiotics, Vitamin C (Ultra Potent-C 500 by Metagenics), Vitamin D3, LDN

EV11, CVB4, and Strep (ASO) titers/levels have all gone down according to my latest tests.

Other things I was taking during that time that may have influenced this include Magnesium Malate and L-Lysine (SuperLysine+) Amino Acid.
 
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Other things I was taking during that time that may have influenced this include Magnesium Malate and L-Lysine (SuperLysine+) Amino Acid.
Quercetin, Probiotics, Vitamin C (Ultra Potent-C 500 by Metagenics), Vitamin D3,
Definitely fall very neatly into the definition of supps ...

LDN is a more or less experimental drug treatment that seems to work really well for some people, and really badly for others. Those in the middle seem to sense some sort of very, very mild shift, but nothing spectacular. Everything's a crap shoot.

How did it work for y'all?
 
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choochoo

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A good test for supplements is to push yourself past your energy envelope such as going to the gym or swimming a decent distance to see if PEM won't kick in and surface. In other words a relapse.
This WILL happen trust me. Regardless of supplements. So as far as im concerned they are totally useless in most cases of CFS. I know this because I've done exactly that too many times to mention, and so have a lot of other people I know.

To be clear, IMO supplements DO NOT WORK FOR SEVERE ME. Stop wasting your money.
 
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@Mary the ketogenic diet is a somewhat different story. It has significantly helped a lot of people across most of their core ME symptoms and it works for a long time, including myself. It’s doing something that really does tackle some core part of this disease.
To separate the keto diet from supplements seems to be splitting a very fie hair.


The keto diet substantially alters the kind and quantity of nutrients you take in, just as supplements would, and in doing so forces your body to function in a constant state of ketosis, the long term safety of which is something the jury is still out about.

In essence, the keto diet is a modern re-working of the old Atkins diet, which, if I'm remembering correctly, killed several people who'd undertaken it, something that supplements do so rarely that finding reliable stats on that is difficult.
Any specific supplement or protocol doesn’t seem to do given my discussions with ME clinicians and anecdotal evidence on this site.
Which, considering that the number of ME patients worldwide is somewhere between 1.5 million and 3.0 millon-plus, is still a pretty limited sampling.
The keto diet working also makes sense given the metabolomics research findings in ME too, supplements just don’t have research linking to potential efficacy.
Largely because supplements aren't supported by the large pharmaceutical companies, which, with only a few exceptions like high-dose, 'pure' Omega 3 and Ubiquinol, both of which are by orescription only, cant make any money off of them.


Research, contrary to popular belief, is neither cheap nor easy to do right. The number of contaminated research projects I've read, which had no control group, a very limited and carefully hand-picked pool of participants, and carefully manicured results which were really largely the researchers carefully veiled opinions, is discouraging.
because it’s not easy like swallowing pills.
Swallowing pills isnt 'easy'. The amount of time, effort, mental energy, and careful thought I put into researching which supplements and how much and at what intervals was pretty staggering, but the results I got speak for themselves.
These significant findings regarding keto and the number of people that it’s helped were enough that ME researchers are even studying it as a potential treatment.
What 'significant findings regardng keto' and which ME researchers are studying this restrictive and potentially damaging diet as a possible treatment for this illness?
 
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choochoo

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This is a very serious, devastating, life ruining and at times life ending disease.

You wouldn't tell someone with late stage of motorneurone disease or locked-in syndrome to take a pile of vitamins and a handful of seaweed so don't do it with CFS. Every time somebody mentions improvement they personally feel from a supplement, they are putting another nail in the ME coffin of neglected research and scientific scrutiny? What about parents of desperately ill children who have remortgaged their homes in the fruitless pursuit of a magical functional food or the latest crackpot therapy?

Have supplement advocates got any idea how soul destroying to be confined in a small dark room for most of your existence only for people you rarely see or here from, to suddenly visit you because they have read in OK magazine ( an example ) that horny goat weed or seaweed from the South Coast of New Zealand has miraculously moved a patient into remission.

I hope the less severe think of this next time they advocate someone to take the latest snake oil. Get a grip people and stop accepting pseudo-science as any answer to the nightmare we are going through.

Ive nearly bankrupt myself and my family through unproven treatments and ridiculous alternative therapies. 35 years and well over $250,000. And guess what? I'm still severe.

If other people won't say it, I will. "To the desperate and naieve, save your money".

One other thing i will add. There is nothing better to obtain a placebo effect than spending money you haven't got. People are desperate to see improvement and don't like to be told ( or admit ) they have just wasted another small fortune.
 
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A good test for supplements is to push yourself past your energy envelope such as going to the gym or swimming a decent distance to see if PEM won't kick in and surface. In other words a relapse.
This is like asking a chemo patient to run a marathon, and when they fall apart about 20 strides in, state that it's proof that chemo doesn't work on cancer.
 
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This is a very serious, devastating, life ruining and at times life ending disease.
You do know that you're preaching to the choir here, don;t you?


We ALL know how devastating this illness is, we've all lost much if not all of our previous lives to it, some of us forever. We all struggle with the hammering fatigue, with the muscle and joint pain, with the crushing loss of cognitive ability, and the loss of friends, and family, and businesses, and income, and the life that we'd spent so much time and effort building, and that now, in its absence, we realize that we loved much more than we knew.

You're not the only ME patient in this forum. Your experience with supplements is yours, and yours specifically. You cant speak for the rest of us and dismiss our experience without mimicking the horrors pretty much all of us have experienced with Drs gas-lighting us ("It's all in your head" stated in numerous different ways), friends and family members disbelieving what we're going thru and telling us to just 'shake it off' and slowly distancing themselves.
 
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You wouldn't tell someone with late stage of Motor Neurone disease or locked-in syndrome to take a pile of vitamins and a handful of seaweed so don't do it with CFS.
With all due respect, please dont tell me what I can and can't say, particularly regarding a disease I'm deeply familiar with, know a little about, and am happy to share that knowledge and experience with anyone whom it might help.

As @Mary pointed out in her post above:
People here post about what does and does not help them. No one here has the answer for any one else. However, no doctor has the answer for any of us either, so we're all guinea pigs and all have to experiment on ourselves.

I see no difference between you posting in great detail about keto, and someone else posting about a particular supplement which helped them. Neither of you is claiming to have the answer for everyone, and all members should be aware that no one here has the answers. No one here is allowed to give medical advice or tell anyone what to do.
That is largely the whole point of this forum, and without the 'anecdotal' evidence you so fiercely condemn, many of us would be far worse off than we are currently.

And in abjuring people, quite forcefully, from taking, experimenting with, or trialing ANY supplements at all, you're dancing on the edge of breaking one of the rules of this forum, the one that asks members NOT to prescribe specific treatments, treatment protocols, or medications. This would include forcefully proscribing against them.
Have supplement advocates got any idea how soul destroying to be confined in a small dark room for most of your existence only for people you rarely see or here from, to suddenly visit you because they have read in OK magazine ( an example ) that horny goat weed or seaweed from the South Coast of New Zealand has miraculously moved a patient into remission.
I assume that you believe that I'm speaking from the viewpoint of a moderate patient.

I was totally bedbound and in horrible, crippling pain for almost 6 years, and suicidal. I know, profoundly and personally, what this disease does to our souls, our bodies, our bank accounts, our friendships, our relationships with family members, our lives, our futures, our hope.

I also know that not many of us have applied Horny Goat Week or exotic seaweeds to the treatment of this illness, but for those who have, I salute your courage, and your unique approach to what may or may not work for your particular version of this crappy little endless sandstorm of an illness, and keep searching and reaching and trying.

Cause in the final analysis, that's really all any of us have in terms of dealing with this.

EDIT for sneaky and meaningful typo .... not that it matters at this point, but, you know, OCD ....
 
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A good test for supplements is to push yourself past your energy envelope such as going to the gym or swimming a decent distance to see if PEM won't kick in and surface. In other words a relapse.
This WILL happen trust me. Regardless of supplements. So as far as im concerned they are totally useless in most cases of CFS. I know this because I've done exactly that too many times to mention, and so have a lot of other people I know.

To be clear, IMO supplements DO NOT WORK FOR SEVERE ME. Stop wasting your money.
I disagree. I had profoundly severe M.E.. I still have severe M.E. But after years of staying in exactly the same state – bedridden and with a carer doing everything for me, unable to chew food, etc - I took thiamine and choline supplements. These gave me enough muscle strength to feed myself and improved my quality of life greatly. Of course it’s not a cure for severe M.E. and my life is still extremely limited, (and I still get P.E.M) but they are definitely not a waste of money for me. In fact, I’d rather die than go back to how I was without them. To be honest the fact that I even get PEM is a miracle, because before I was so completely paralysed that it simply wasn’t possible to push past my energy levels.
 
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You do know that you're preaching to the choir here, don;t you?

We ALL know how devastating this illness is, we've all lost much if not all of our previous lives to it, some of us forever. We all struggle with the hammering fatigue, with the muscle and joint pain, with the crushing loss of cognitive ability, and the loss of friends, and family, and businesses, and income, and the life that we'd spent so much time and effort building, and that now, in its absence, we realize that we loved much more than we knew.

You're not the only ME patient in this forum. Your experience with supplements is yours, and yours specifically. You cant speak for the rest of us and dismiss our experience without mimicking the horrors pretty much all of us have experienced with Drs gas-lighting us ("It's all in your head" stated in numerous different ways), friends and family members disbelieving what we're going thru and telling us to just 'shake it off' and slowly distancing themselves.
I completely agree with this. Nobody can speak for anyone else. I remember reading messages that said ‘I am a severe M.E. patient’ and crying because they could still type and I couldn’t. 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.
 

gbells

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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.
Specific supplements can be helpful if they target effects of viruses or replace chemicals switched off by aging (ie. glutathione). For example, research shows that curcumin reduces inflammation caused by epstein barr virus.

Many people approach supplements with the idea of using anti-oxidants, supporting mitochondria, and boosting methylation which doesn't work. Strong anti-oxidants raise cancer risk and weaken cancer defense .

There is little direct evidence to support the popular methylation protocols. However, numerous patients have reported benefit while others have reported no benefit.
(-Methylation cycle hypothesis, MEpedia)
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 agree. If we insisted on strong evidence many of the treatments discussed would be strongly condemned however you can't blame chronically disabled ME patients for getting desperate and hoping that they can find something that will help them.
 
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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.
Not sure I agree with this. I have friends with MS and Parkinson’s and they both use supplements and claim they help with certain issues. I don’t think this means that these illnesses are viewed as less devastating because of it. The issue for our community is the lack of research and funding - let’s not blame patients.
 

Learner1

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There are numerous ME/CFS researchers who have identified nutrient deficiencies and imbalances in ME/CFS patients. It makes sense to try to bring these lab values to normal and see if symptoms retreat. With my doctors, I have methodically gone through the research, run tests to see if I have similar deficiencies or imbalances and supplement as the results suggest, and it had led to improvements. I also have used a number if pharmaceuticals to support hormones, immune function, to tackle autoimmune symptoms, and to fight infections. Without these interventions, I would not have been as successful. We are all individuals, it is important to find our unique issues, driven by genetics and environmental factors, there are do many flavors of this disease, that it is highly unlikely the protocol used by one patient will work on another, making randomized double blind placebo studies rather useless in making any conclusions about effectiveness.

Rather, the 2015 IOM report suggested a systems biology approach using individualized medicine and one of the stated goals of the OMF currently is yo look into personalized medicine approaches.

What I meant was why one person’s ME supplement protocol doesn’t work at all for most other people.
Good point - agreed.
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!!!
ok, let's also put disclaimers on antivirals, immunomodulators, steroids, spinal surgery, Ampligen, HBOT and any other treatment discussed in this forum.
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.
There are a great number of patients benefiting from various supplements. However, treatment is more successful when comprehensive treatment is done and comprehensive supplement protocols are developed and used, rather than trying an individual supplement just because someone else said so.
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.
This is absolutely not true. I have had great success with my POTS symptoms using Huperzine A. I tried it whenn I couldn't get pyridostigmine (Mestinon) compounded anymore and I couldn't take the FDA version due to allergens. It is cheaper, equally effective, and lacks the unpleasant side effects of pyridostigmine. And, it gas a little ngrr half life than neostigmine, which I also tried.

Conversely, I have also had good results from Kuvan, which used to be a cheap supplement, now an orphan drug after BioMarin patented it, making it more expensive and out of the reach of most patients. It increased my energy by 30%.

There are no ME/CFS studies on either, yet they're effective on me. Come to think of it, I've also had success with other substances that have been studies in ME/CFS and have been found to be ineffective....IVIG and Rituximab... Studies are nit very useful unless there are very specific criteria for subsets of ME/CFS patients and they are done in context.

As a patient, I am very aware that my genetics, health history, and comorbidities make me extremely unique, so much do that I would never be accepted into any ME/CFS study, and likewise, I cannot have faith in the results of any ME/CFS study. The best I can do is compare my situation, genetics and labs to what I read in various studies and make educated guesses on what I can try, with my doctors' help.
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.
It is very meaningful to discuss whatever treatment in the context of who it's working on, what their genetics, environmental factors, symptoms, length and severity of illness, and comorbidities are.
Most FDA approved drugs aren’t curative either, for me that’s not the main problem with supplements. 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
As someone who has permanent damage from 3 FDA approved drugs taken as prescribed and was almost killed by a fourth, I have learned the hard way that UNINTENDED consequences can happen from these drugs when they are myopically prescribed for a particular indication without any thought to the possible effects throughout the rest of the body.
A good test for supplements is to push yourself past your energy envelope such as going to the gym or swimming a decent distance to see if PEM won't kick in and surface.
As @Mary pointed out, BCAAs can have a good effect. I have found that taking glutathione and BCAAs can help me avoid PEM and have on multiple occasions been able to pull myself out of PEM using them (once it occurs to me to take them in my funk..)
You wouldn't tell someone with late stage of motorneurone disease or locked-in syndrome to take a pile of vitamins and a handful of seaweed so don't do it with CFS.
I'm not sure what the seaweed would go, but nutrients have been found to be effective in neuroligical diseases.

It is prudent in any case to determine if a given body needs a particular nutrient before using it. With a need. And sufficient co-factors, success is more likely.
Every time somebody mentions improvement they personally feel from a supplement, they are putting another nail in the ME coffin of neglected research and scientific scrutiny?
I disagree. The researchers have definitely been researching nutrients - Gkuge and Mella, Maureen Handing, Robert Naviaux, Neil Nathan, Chris Armstrong, Neil McGregor, Ron Davis, and many more.
Have supplement advocates got any idea how soul destroying to be confined in a small dark room for most of your existence only for people you rarely see or here from, to suddenly visit you because they have read in OK magazine ( an example ) that horny goat weed or seaweed from the South Coast of New Zealand has miraculously moved a patient into remission.
This is a fallacy. This is why I have argued here in many occasions with a certain prominent member who has a penchant for asking members if a particular intervention had moved them up one level of the scale from severe to moderate to mills. My experience is that this is ridiculous, that the best success cones from thoughtfully combining treatments for this complex, multi-organ system disease.
Ive nearly bankrupt myself and my family through unproven treatments and ridiculous alternative therapies. 35 years and well over $250,000. And guess what? I'm still severe.

If other people won't say it, I will. "To the desperate and naieve, save your money".

One other thing i will add. There is nothing better to obtain a placebo effect than spending money you haven't got. People are desperate to see improvement and don't like to be told ( or admit ) they have just wasted another small fortune.
I have spent that much and have improved. I participate and share what I've learned because I hope you provide knowledge that can save others time and expense in this painful process. I've done some things wrong along the way, and out of optimal order, and only began to improve when my treatment plan encompassed both supplements and pharmaceuticals customized to my needs. I'm very sorry that you have not been equally successful, but encourage you to keep trying. In every patient that hasn't improved, there is a great deal of opportunity, of problems missed, problems mishandled, or very good interventions tried unsuccessfully when the proper groundwork wasn't laid. I've learned the hard way that things must be fine in order that's not entirely obvious up front, but that doing the groundwork up front lays the stage for later successful interventions.
Many people approach supplements with the idea of using anti-oxidants, supporting mitochondria, and boosting methylation which doesn't work. Strong anti-oxidants raise cancer risk and weaken cancer defense .
This is exactly what I've been doing, successfully, along with other interventions. I am a stage 3 cancer survivor and have no interest in more cancer. Using a balance of antioxidants to work synergistically with one another and mitochondrial nutrients has been very useful. I've attached a paper explaining this approach. There are no large scale studies, so any protocol should be customized to the individual.
 

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Of course it’s not a cure for severe M.E. and my life is still extremely limited, (and I still get P.E.M) but they are definitely not a waste of money for me.
Same here, altho I dont think I was as severe as you were. I could crawl to the bathroom if I planned for it, and I could usually get to the kitchen once a day, with exceptions for the really bad days. Since I was reactive to almost every food known to man, that wasnt a big deal.
In fact, I’d rather die than go back to how I was without them
I agree.


Sometimes I look back on all that, the gradual descent into hell and the almost unendurable endless sojourn there, and I wonder that I survived it. Mostly because I couldnt quite figure out how to effectively off myself with no room for error, and not a lot of mess for DB to deal with.

DB, who normally wouldnt notice if I wore a necklace of live fish, being the original absent minded professor, became aware and removed his antique gun collection to storage for the duration.

It was genuine screaming hell.

Supplements started me on the road to 'better', and this forum helped me with research and staying sane ... I'm not sure where I'd be without it.
 
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