Malic acid supplement, sumac

I would just be curious for the people that didn't report a noticeable effect from the malic acid: did you happen to track whether you still got PEM after activity that normally triggers it for you (if the activity was within a few hours of taking the malic acid/sumac)? @OrganicChilli @wingate @forestglip

Added: Only wondering if you happened to track it already--I would not want to push anyone else into PEM just to test my theory!

It seems like @MeSci may have had a similar experience of not much of an immediate effect, but a lack of negative effects after going shopping. Would you be able to confirm if you continued to see the same pattern?

I know that just asking the question might prime your responses, so I'll take any positive responses with a grain of salt regardless. And if you did still get PEM, that's still valuable information!

 

Yes, I can reliably trigger PEM. One thing I want to highlight although I'm not sure it's important: our symptoms seem to present very differently. For example, I'm not tired/fatigued at baseline so I've never looked into stimulants. I do however get tired/sleepy incredibly quickly after exertion and I can always tell within 20 - 30 minutes if I've overdone it.

I had a 1 hour meeting yesterday where I had to present and took malic acid and paracetamol 30 minutes in advance as an experiment. I got PEM 2 hours later as soon as the paracetamol had worn off. It was a major headache which is my main PEM symptom. Weirdly enough I got it on the day and today I'm fine so I'm not sure I can call it PEM and it has never happened before that it wasn't delayed by a day.

I'm also taking LDN which seems to do nothing. I'm currently at 1.5mg and plan to titrate up to 4.5mg before I get rid of it.

 

Thanks so much for your example, that is really good to know.

I also tried LDN and it didn’t do anything for me. Though I would also be curious about whether the differences in our symptoms is a clue.

You mentioned quick effects after exertion—did you experience the same lack of effect of malic acid with physical exertion vs. cognitive?

I just ask because I was still getting brain fog triggered by cognitive activity on the malic acid + stimulant, it only went away when I added the coq10 and b complex.

It makes me wonder if the different preferences in electron shuttles between organs (malate in most tissues vs. FAD in the brain) has a role. If you still got ME/CFS symptoms after primarily physical activity with malic acid alone, that would probably disprove that theory.

It would have to be something aerobic like walking rather than something like lifting, since muscles also use FAD preferentially during high demand short term activity.

 

I didn't specifically try to monitor that, I was just seeing if my general malaise type feeling was improving, but if I do try it again I'll let you know.

 

I don't take malic acid regularly and I can't say with absolute certainty that it doesn't block PEM. I think I took it before going to the dentist the other day and I got flu-like symptoms on the day, but no PEM the next day. Not sure if I stayed just below my PEM threshold though. I can add it to my routine and see what happens. I usually take it after I've overdone it when I get tired. Maybe it's too late at that point.

Something that confuses me and I want to know why it happens: if I go for a very slow 5 minute walk and keep my heart rate below 80, I still get out of breath after a minute or two and will get horrible PEM the next day although I'm taking beta blockers. Why is that? If I just sit in a chair at home for two hours with the same heart rate, I'm fine. I don't have OI symptoms like dizziness.

Also I have never experienced brain fog I think. Unless thinking very slowly when I'm in PEM and exhausted counts. I think someone else here in the forum said they didn't get brain fog during the first 10 years of their disease so it may just be a matter of time.

 

@OrganicChilli I envy you! Brainfog hit me like a truck in day one of my symptomatic infection.

Do you get PEM from walking for a minute or two inside your home? Or do you ever regularly walk more than a minute or two?

 

Thanks! I’d be interested to hear, though no worries at all if you end up deciding not to.

 

If my theory is correct about why the malic acid works for me, I would only expect effects if taken ahead of time (I’d say at least a half hour after and not more than 6 hours after, solely based on my personal experience with it).

The heart rate thing is definitely interesting, I was just chatting with someone else who said the exact opposite—that very low intensity exercise didn’t seem to trigger symptoms and actually helped prevent them when activity was ramped up after warming up.

There’s definitely differences in how the body mobilizes and preferentially uses different ATP generation pathways depending on the type and intensity of activity. Though for any specific person with pwME, I think there’s only a possibility to make vague guesses about what exactly is going on. Do you happen to notice a difference if you eat something high in simple carbs or sugar vs. something high in fats beforehand?

Brain fog was definitely a defining feature for me within a year of illness, so I think it’s more likely to be person-specific. It would be great if you’re able to avoid brain fog issues altogether!

 

No, although I don't technically walk that much at a time. I no longer cook and if I prepare a sandwich I sit down. That being said, standing seems to be safer than walking. I think I take smaller strides at home, but when I did stupidly go for a walk the other day I really made an effort to walk very slowly. It didn't help.

 

I'm not sure because I get ready meals delivered and I'm not in control of the menu. Generally speaking, I eat a lot of rye bread (carbs) and dinner will contain either rice or pasta (also carbs).

I've been looking for an excuse to get KFC so I might give it a shot!

 

Hm yeah I definitely think my ME/CFS has very different dynamics from yours—being mild I can usually always walk if needed (unless I’m already in PEM), I just have a hard upper limit on how much I can be active before it starts triggering symptoms. At that point I’ll get pretty immediate pain and exhaustion that carries over into longer term PEM once I finally relax for the day. And the fatigue/malaise and brain fog were pretty much always present, it just fluctuated so I couldn’t always ignore/push through them.

All the details you shared are really interesting. I think there really has to be an element of subsets with different starting mechanisms to explain all the variability in ME/CFS. The trick is just how to categorize it in a way that is robust—I haven’t been too convinced by the attempts to do that so far.

 

Do you have a distinct onset of delayed (more than 24 hrs) PEM symptoms at all?

 

I'm really interested in different symptoms and subtypes! I remember you mentioned you don't get a sore throat for example. I knew something was off when I got really tired a couple of hours after a short walk. What I didn't know back then is that my heart rate is around 120 during light activity which all of a sudden my body could no longer handle. I thought beta blockers would be an easy fix and while they bring my heart rate down, they don't prevent PEM.

My onset was weird anyway. I've probably been ill for a few years since either covid or the vaccine, but my symptoms were so mild that I didn't even know they were symptoms and just thought I was getting older. They didn't interfere with my life at all until last year and it's been going downhill rapidly.

 

I definitely did before I started a stimulant. I usually wouldn’t get those immediate effects at all, I would just get hit like a freight train 1-3 days after. Pain was less of a symptom, it was more general “malaise” like an actual flu, fatigue so bad I couldn’t do anything at all, brain fog, etc.

On a stimulant alone, I get those immediate effects about 1-2 hours into activity (unless it’s something high intensity like trying to run to catch the bus, in which case it comes on sooner) and they usually last for at least 24 hours. It’s primarily pain and stiffness, a feverish feeling, weakness and exhaustion in all my limbs, and brain fog. It tends to worsen by a lot once the “adrenaline” of pushing myself through activity wears off, and then it gradually fades away over 1-2 days.

If I keep trying to exert myself during this 1-2 day period, then it’ll get worse and resemble the extreme malaise of PEM pre-stimulant. In that case it’ll last for days or even a week.

 

So stimulants effectively makes it so that you get distinct warning signs before you usually reach your PEM threshold?

 

Interesting! Yeah no sore throat, the only flu-like symptoms I’ve ever gotten are muscle pain and stiffness, feverishness, and then that general malaise/sick feeling.

my onset was pretty gradual too, I was just slowly getting more and more tired over a period of months until I had to drop out of school. As far as I know, it wasn’t linked to any illness, though it’s possible I had a cold or something and just didn’t remember once my illness got worse a year or so later.

 

I think that is part of it, and also the stimulants increase the threshold of how much I can do total. So maybe with both of those things together I never reach the threshold for what creates delayed PEM.

The immediate “warning” probably prevents me from overdoing it to an extreme extent because at some point I’ll just be in too much pain to even try to keep pushing.

Though honestly that warning is just its own kind of PEM. If I stopped activity exactly when I started feeling the slightest hint of it, maybe the symptoms would die down and never escalate. But in practice, once it ramps up enough to be noticeable, it’s just going to keep going and escalating from that point on, and then gradually die down from that “peak”.

I’ve been thinking of it more as “immediate PEM” for that reason. It’s kind of just a “oops you really did it now! Here comes the punishment” signal but instead of getting it in the mail later on, I’m getting it as a text.

 

I'm not going to mither on about this, but I wanted to say be careful.

I've done all that, and genuinely thought I was getting through—somehow creating additional activity capacity and managing to sustain it for a couple of years.

I wasn't. Rather than creating real capacity, I think I was using the momentum you can employ in milder illness, as well as pushing without realising. It all became harder so gradually that I didn't notice, and I eventually crashed hard. I was out of commission for a longer than the "good" period, and I hadn't even used stimulants.

Judging by the stories of people who've been through the same thing, I was lucky. Other people never regained their previous function, and after a couple of years of plateauing in an infuriatingly frustrating way, I did at least get mine back.

Finding something that apparently helps and making use of it isn't unusual. You keep hearing similar stories when you've been ill a long time, and it often seems to end badly. People who came a cropper only get to understand what happened (which may include realising they missed warning signs) with the benefit of hindsight.

That's it, I'll shut up now!

 

I appreciate the warning, thank you for watching out for me.

At this point I’ve been on stimulants for about 5 years and have stayed on the same dosage and capacity throughout. So I’ve had some amount of time to anticipate how they affect me and make sure to pace myself day to day/put plenty of rest in my schedule.

I had undiagnosed ADHD before the ME/CFS, so I’m wondering if my ability to tolerate them so far might be shaped by that.

I don’t recommend them to others for the reasons you share, though I would be interested to find out what is physiologically different for people who do vs. don’t tolerate them.

There’s always a chance that I can still crash out from either the stimulants or the malic acid in the future. I’ve spoken about this with my therapist and decided to just keep going with them, because the alternative is to never be able to do grad school or research.

If I crash later, at least I got to do something that I love for a few years and work towards an understanding of the disease. Maybe I’ll get lucky and the hypothesis that led me to malic acid is correct, so it’ll keep me from that crash.

 

FWIW, years ago I took a high dose of magnesium malate under medical supervision. The magnesium was for other reasons, with the malate formulation chosen because there was some buzz about it in ME circles

The formulation contained 2.5g/serving of malic acid (as magnesium malate trihydrate and malic acid). I would have taken at least twice that daily

Didn’t make an ounce of difference to my ME symptoms or propensity to PEM so I switched to a cheaper formulation of magnesium