Personal experience of using cumin to treat PEM

A couple of years ago I discovered that cumin (cuminum cyminum) was very effective at blocking my physically-induced PEM (didn't affect cerebrally-induced PEM). A level tsp of ground cumin would completely block PEM for 3 days. If I forgot my dose, and PEM started, taking cumin then would relieve the symptoms within hours. Sadly, even though I posted this info on several ME forums, no one has reported similar benefits, so maybe there's some genetic, epigenetic or other unique aspect of my body that allows it to work. Still, it does prove that PEM can be treated. You just have to be lucky to stumble across the right treatment.

Whenever I find something that works for me, I retest it occasionally, to make sure it's still working and that the dosage is optimum. After taking cumin every 3 days for a year or two, I found that I no longer got PEM if I didn't take cumin. It's been several months now, and I remain PEM-free, despite some fairly strenuous activities that should have triggered PEM. I'm not sure whether it's affected my ability to get cerebrally-induced PEM, because I've gotten better at avoiding those activities, so I'm still collecting data on that.

So, while cumin may not work for anyone else, I hope some of you will feel a bit of hope from knowing that it is at least possible to treat and cure PEM.

I had another issue, which required me to take a single dose of iodine or T2 (3-5 diiodothyronine) every 21 days, to avoid worsening of symptoms. That problem seems to have gone away at the same time that the PEM did, so I assume they're linked.

 

I'm so happy you found something to avoid PEM. That must feel great.

Out of curiosity, how did you know whether it was T2 or cumin or something else that was helping to relieve the symptoms?

Are your other ME symptoms relieved when taking cumin, or primarily the PEM?

 

Was there a particular brand of ground cumin you used. Did you take it after food? Thanks.

 

@Creekside

There is a thread here discussing experiences with black cumin. Dr. Alain Moreau has an interest in thymoquinone, a chemical found in black cumin seeds.

Nigella sativa (also known as black cumin).

 

Repeated testing, while holding as many other variables as possible constant. With the cumin, I found a list of compounds found in it, and tried other herbs and spices that contained subsets of that list. Cuminaldehyde seemed to be the most likely chemical. I couldn't get any other source of cuminaldehyde to test. I would have tried perilla, which contains perillaaldehyde, but I didn't have a convenient source.

Cumin blocked my physically-induced PEM completely. It didn't affect other ME symptoms, and didn't affect cerebrally-induced PEM. My guess is that it blocked something in the pathway between damaged muscle cells and whatever cells in the brain produce the PEM symptoms.

Absolutely wonderful. I was able to do all sorts of activities that I otherwise would have avoided, or have been miserable from. I needed to replace my roof, and managed to do that (lots of 30' ladder climbing) without PEM. When I first discovered that it was reliably blocking my PEM, I posted it on several ME forums, hoping that it would work just as well for others. Alas, it seems to be unique to me. I keep hoping that it will work for someone else too.

 

No, I used several no-name packages of ground cumin, and bulk seed from at least two different stores, and they all worked the same. Some exotic brands might not work as well, since cuminaldehyde content does vary with where it's grown, but the cheap stuff available here in Canada seems to work well.

I didn't notice any difference from what time of day I took it, or whether or not it was with a meal. Cooking, in sauces or pancakes, didn't alter the effectiveness. Cumin was very insensitive to how I took it. At half a level tsp, it was noticeably less effective. More than that didn't affect how well it blocked PEM (can't go over 100%), and it only increased the duration slightly: IIRC, 3 heaping tsps only increase the duration to 5 days. I stuck with a level tsp.

 

Unrelated plant. No cuminaldehyde.

 

Nope, haven't found anything like that in journals. It's just my theory based on observations of my PEM in response to exertion. Earlier today ( https://www.s4me.info/threads/is-me...a-signalling-problem.10981/page-7#post-290644 ) I posted a link to a paper on creatine kinase measurements after exercise; it made a clear difference between accustomed exertion and unaccustomed exertion in regards to muscle damage, so at least that part has some evidence. Likewise, my observations of my ME convinced me that it's brain-related, and kynurenine-related. I keep searching for new papers that might link these things, but haven't found any yet.

I meant that after taking cumin, I wouldn't experience any PEM symptoms for the following three days, regardless of physical activities. Those activities would have, from past experience, caused PEM, but didn't. Occasionally I'd forget to take the cumin on schedule, and exertion would trigger PEM again. That happened often enough to convince me that it wasn't the placebo effect. Then a few months ago, I tried going without cumin and found that I no longer got PEM even without taking cumin.

My PEM didn't cause extra muscle fatigue. My ME symptoms are mainly neurological: mental lethargy, neuropathic pains, general malaise. Even during severe PEM, I could still force myself to do normal levels of physical exertion if I really needed to; I just needed severe need to do so. My best mental image for my ME symptoms is that my legs were up to the task of a 40 km ride, but my brain wanted nothing more than to flop down onto a pillow and not even think.

 

Moved posts

Cumin worked as a very effective PEM blocker for me. It blocked my physically-induced PEM completely for 3 days per dose. However, my baseline ME symptoms remained unchanged. I can't prove that cumin didn't block just part of my PEM 100%, with the remainder being permanent PEM, but that seem much less likely than baseline ME symptoms being separate from PEM, with PEM being a worsening of those baseline symptoms.

I seem to have cured my PEM ... but I still suffer from ME symptoms.


I do still seem to suffer from cognitively-induced PEM on some occasions. Driving to town still makes me feel worse the next day, and the severity depends maybe on how stressful the driving conditions are, and whether I had any social interaction.

 

That could put a hole in my "permanent PEM" theory. I'll have to try cumin for PEM prevention, thanks for the info.

Have you tried nicotine patch for ME symptoms? It didn't work well for me for PEM prevention, but 3.5mg does boost my energy level, substantially I might add, in non-PEM state. My non-PEM state is a recovered state though, so it may not be applicable to ME baseline.

 

For me, I settled on a level tsp every 3 days. Larger amounts or more frequent doses didn't help more. You can swallow the powder or use it in cooking or baking; cuminaldehyde seems pretty tolerant of heat.

I never considered trying nicotine. I prefer to avoid addictive drugs.

 

I eat cumin a lot, but I will have to try larger doses.

For non-ME reasons I take resveratrol every 3 days in moderate doses, 400-600mg. It prevents my bronchospasms almost entirely. Higher doses have persistent effects, but even higher doses are not better.

In the early 90s I discovered my fatigue vanished after eating a lot of one spice. I do not intend to name it. Here is why. I was able to walk any distance for weeks, no PEM, no undue fatigue. However the dosage of the spice needed doubled every three days. When I hit about a half pound a day I stopped, it wasn't going to work. Then a couple of days later I crashed, badly. So I wont mention the name of the spice.

Has anyone found benefit with other culinary herbs or spices?

PS By the time I hit a half pound a day people around me were complaining I smelled like the spice.

 

This thread reminded me of advice I got from an Ayurvedic doctor I consulted at a health spa at a resort in Malaysia 20 years ago. He recommended I have a tea daily that included cumin seeds. I don’t have MECFS but had given birth 8 weeks prior and was wanting to get back in shape. I looked it up just now and this came up as the benefits;
“Cumin, Coriander, & Fennel tea (CCF tea) is one of the simplest and most famous Ayurvedic home formulas for detoxification, weight loss, and the burning up of excess water retention.
This revitalizing yet mild blend gets right to the point by warming up your circulation and cleansing your lymphatic system.
It stokes your metabolism and digestive fire restoring your vitality where winter sluggishness abounds.”

 

This is such a mysterious disease. Many of us have reported finding that treatments work well for the first few doses, but then stop working and never work again. Yours is the first I've heard of that required increasing dosage. Has anyone encountered a treatment that required continually decreasing dosage?

I've got a somewhat similar experience. I found that CLAs (conjugated linoleic acids) improved my sleep quality. Safflower, sunflower, and canola oils work, but only when I alternate them. If I take the same type two evenings in a row, it don't help.

For other herbs&spices, I had slight reduction in brainfog from one herb ( I forget whether it was fisetin or luteolin), and also lettuce and dandelion root (made as coffee), but all those became ineffective after a few days or weeks. However, plenty of herbs and spices made my ME symptoms worse, especially ones that were effective peroxynitrite scavengers (the more effective they were at scavenging, the worse the response) and they never stop being effective at that.

 

Bay leaf makes me worse. Spirulina makes me much worse.

The original pycnogenol, made from red grapes not pine bark, had an amazing result the first time. Nothing at first. Then my stomach fizzed. Then it moved out to the entire body, like someone was carbonating my blood, down my arms and legs and up to the top of my skull. It got very intense, very painful. Half an hour later the fizzing and the pain stopped, and I felt amazingly good, better than I can remember. I tried repeating this later and it never worked again, and now the pycnogenol is different.

 

How many tried doubling the dose I wonder? For many things you cannot do that. Most drugs, some vitamins, and most minerals quickly become very dangerous if you double dose a few times over.

 

On sleep quality, I found resveratrol made me sleep a fair bit less. However, my capacity to tolerate sleep deprivation improved a lot. I think the problem we have with tolerating drugs, and some chemicals, applies to just about all dietary intake though with large variation between patients.

There are also dietary interactions. I am highly salicylate intolerant, and found my own solutions, but kept overlooking the best solution for me because of prevailing medical opinion. I have no salicylate intolerance if I eat a teaspoon of butter a day, presumably because of the arachidonic acid. This bypasses the block at the desaturase enzymes, allowing synthesis of series 2 prostaglandins. I really need to be on fish oil too, but haven't for some time. I am currently ordering some.

I avoided butter because of the saturated fats. It causes cardiovascular disease, right? The latest large scale Cochrane review, on saturated fats and CVD, reportedly says no. In a few weeks I might give it a read. Right now I am close to getting double cataract surgery, and struggle even on my computer.

 

Good luck with the surgery, @alex3619.