Possible PEM Blocker

Wishful

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Not meaning to stir up major excitement, but something does seem to be blocking or reducing my PEM. Further testing on myself might take weeks, and if it does work for other people, they'd probably be annoyed that I delayed so long.

I had to buck some firewood, and doing even a few cuts by handsaw is enough to trigger PEM. Instead I fired up the chainsaw, bucked a lot of wood (couple of hours), and accept that I'd have serious PEM the next day. After all, my muscles were really sore after that. No PEM the next day. I checked my diary to see what might have blocked the PEM. The day before I had pancakes made with some ground cumin seed.

When I first tried a significant amount of cumin, 2.5 years into my mysterious medical disorder, it made me feel completely healthy again. After a few weeks of taking cumin seed daily, I realized that somewhere along the way it had stopped working. I try it again a couple of times a year, just in case it decides to start working again, but no luck. What I think is happening is that it doesn't reduce the baseline symptoms...but it does block PEM. I just didn't realize it because it's harder to notice PEM that doesn't occur. The chainsawing session with majorly sore muscles was simply too astounding to not notice. I did more serious chainsawing yesterday (fourth day after cumin) and again there's no significant PEM (at least not yet!).

The problem is that testing PEM reduction is difficult, since we never know for sure whether PEM will occur or how strong it will be. I can't be totally sure yet that the blocking was due to cumin seed. I have to wait until PEM occurs reliably again, and repeat the experiment several times, with different physical activities. I did check a few months back in my diary, and found two times I'd used cumin, and I managed to do somewhat unusually strenous physical activities the following day (changed truck wheels, dug soil), without reporting serious PEM the next day. Not proof, but encouraging.

Since cumin seed is readily available and a very safe food, I thought I'd post this and see if anyone else is interested in testing it themselves and reporting back here. I used a couple of teaspoons worth of cumin seed in the pancakes. (Yes, I know it's not the greatest taste, but it was for testing to see if the improvement it once gave might return.) When I first tried it, I used a teaspoon full, which was adequate. I didn't bother to test for the minimal amount required. I don't know how quickly ground cumin loses potency, so if you try the experiment with ground cumin so old that you don't know which decade it's from, failure may not prove anything.

When I first tried it, I followed up by finding a list of the active compounds in cumin seed and testing other herbs that contained some of them. I'd pretty much narrowed it down to cuminaldehyde (4-isopropylbenzaldehyde). Perilla is another herb with cuminaldehyde (or at least a version of it), but the effect of cumin wore off before I was able to obtain any perilla, so I don't know if it is or isn't as effective.

Maybe cumin only works for me, so don't buy vast quantities expecting a miracle. However,since many of you already have it in your kitchen, and you are going to do activities that you expect will trigger PEM, taking a teaspoon of cumin the day before--and paying attention to whether your PEM symptoms are different from expectations--should be a simple, safe experiment. Maybe it will make someone's life a little less awful.


As I'm finishing this up, I noticed that my temperature is up .4C, so maybe yesterday's activity is causing PEM. It didn't rise this way yesterday, so maybe cumin only works for 24 hrs or so.


Hoping that this potential PEM blocker isn't a false hope...
 

Hip

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When I first tried it, I followed up by finding a list of the active compounds in cumin seed and testing other herbs that contained some of them. I'd pretty much narrowed it down to cuminaldehyde (4-isopropylbenzaldehyde).
A quick bit of Googling turned up this paper, which found that cuminaldehyde has effects on the mitochondria, causing the loss of mitochondrial membrane potential. Thus the fact that cuminaldehyde has mitochondrial effects suggests that this indeed may be the active principle in cumin seed (Cuminum cyminum) responsible for mitigating your PEM.

If you are able to confirm that cumin does reliably mitigate PEM, I can add cumin to the list of PEM-busters in this thread.

I will also be trying it myself.
 
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Asklipia

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Black cumin (Nigella sativa) is cited in the Quran as being a panacea, and as a result of this (or as a consequence of its effects) it is very popular in Muslim countries.
Supposed to be good for everything! "This black seed is a cure for every disease except death."
:)
 

Wishful

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Curcumin, or at least turmeric, significantly enhances my baseline symptoms, so don't assume that 'immunosuppressant' equals lower ME/CFS symptoms.

Alkt's concern is something to think about. However, I've done strenuous activities in the past that caused severe PEM, with no observable long-term effects. The chainsawing was _supposed_ to be a major PEM causing event, and I wasn't worried about long-term negative effects. Other ME/CFS victims might be more sensitive to such things; there's a recent poll in one of the forums about whether people's condition just goes up and down or drops with each crash.

Yesterday's rise in temperature wasn't accompanied by usual PEM symptoms, so the cumin (if that's what it was) is still working (I usually have a slight increase in temp later in the day; that was just slightly earlier and higher than usual). I could go out chainsawing or hiking today...except that it's rather cold out there today (-20C). I might go for a hike anyway. The best way to get acclimatized to winter is to go out in it for a while.

Those of you who eat foods with cumin might want to look back in your diaries to see if you felt better or at least avoided expected PEM on days following that. I don't know if a serving of curry has enough cumin to trigger the effect, but it might. You may just have not noticed missing PEM.

I was aware of the mitochondrial action of cuminaldehyde, but didn't want to get people overly excited about theory. When someone suggests trying a treatment based on theory--such as curcumin reducing Th17--I don't get too excited. My experience with a lack of PEM is just an interesting observation, needing someone else to give it a try. I can, with time, verify whether it reliably blocks PEM for me, but that says nothing about whether it will work for anyone else.

Side note: I wasn't sure of the correct pronunciation, so I checked. Technically is seems to be 'come-in'. This means that there might be misunderstanding if you tell people that: 'Cumin makes me feel good." :)
 

Wishful

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L'engle, wood has to be bucked (sawn to length) before it can be split. Also, the amount of wood that I need to split isn't really enough to justify a splitter. If cumin doesn't allow me to split the wood with a maul, I might consider buying a splitter, or maybe just borrow a friend's and split a couple of winter's worth in one session. I'm trying to not avoid all physical activity, since it is healthy, so I'll continue to saw and split some wood by hand if I can do it without triggering PEM.

I'll also say that working with hand tools outside is really quite pleasant. The 'zzzz, zzz, zzz' of a handsaw is so much nicer than the scream of a chainsaw (needs hearing protection), and the 'thwack!' of a splitting mail is nice too. It doesn't drown out the birdsong or the squirrels' chattering either. I live out in the woods because it is nice and quiet.

I'll go out and try splitting some of that freshly-bucked wood after I finish this, just to check whether it causes PEM.
 

Mel9

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I have done too much gardening this morning (42 minutes in my fitbit 'cardio zone')

To further this experiment, I Will make myself a cup of cumin tea (1 teaspoon cumin seeds) instead of taking extra CoQ10.
 
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Yes please let us know how you get on as I am following this with interest as never seen cumin mentioned before and as a newbie it is just so helpful to hear what is helping some of the symptoms
 

Wishful

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As someone else pointed out, black cumin is a completely unrelated herb and I find no mention of it containing cuminaldehyde.

After my previous message, I did go out and split a couple of wheebarrows of wood. Then, since it was a cold but nice day, I forced myself to go for a hike. I wasn't enthusiastic about hiking, but once I started, I knew I could keep going for a long hike. I ended up hiking in the woods for an hour and a half. I'm definitely not in as good shape as I've been in previous years, since I was quite tired by the time I got back, but that makes it even more likely that it should have caused PEM. On top of that, I got a really painful back cramp afterwards (probably from swinging the maul), which would involve inflammation and thus should trigger PEM all on its own. Nope, I remain PEMless. I don't feel wonderfully healthy, but I'm not feeling the symptoms I associate with PEM.

I still don't know if it was the cumin that was responsible, but it still seems the most likely candidate.
 

Mel9

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I have done too much gardening this morning (42 minutes in my fitbit 'cardio zone')

To further this experiment, I Will make myself a cup of cumin tea (1 teaspoon cumin seeds) instead of taking extra CoQ10.

Well, it's very hard to make any conclusions. I tried the cumin tea instead of extra CoQ10 and it seemed to prevent two lots of PEM but not the third, although the PEM wan't all that severe and Ihave been doing far too much.

But cumin tea is Delicious and I will keep drinking it daily. Next time I might take both the cumin tea and extra CoQ10.
 
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Gondwanaland

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Mel9

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A quick bit of Googling turned up this paper, which found that cuminaldehyde has effects on the mitochondria, causing the loss of mitochondrial membrane potential. Thus the fact that cuminaldehyde has mitochondrial effects suggests that this indeed may be the active principle in cumin seed (Cuminum cyminum) responsible for mitigating your PEM.

If you are able to confirm that cumin does reliably mitigate PEM, I can add cumin to the list of PEM-busters in this thread.

I will also be trying it myself.

Please let us know how it goes?
 

Wishful

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Well, I can report that it wasn't a permanent cure. Day 8 after the cumin I started feeling a bit worse, and I'd noticed that my thigh aches had been gone for a while and now returned slightly. Day 9 I moved a few wheelbarrow loads of firewood and then abruptly felt really lousy, including muscle tremors, which I hadn't felt for years. Since then I've felt lousy again. I'm probably back to the level I was before the cumin, but it feels so much worse in comparison. It was a really nice vacation from the worst of ME/CFS.

I thought it was just blocking the PEM, but I now see that it was reducing the baseline symptoms too. I didn't feel 'healthy', but I certainly didn't feel the lethargy, malaise and aches that I do today.

Whether it was the cumin or something else, it did reveal something interesting: the effects were stable and then stopped quite abruptly. That means that it isn't a dose-dependent effect, but rather a threshold switch or triggering production of a cell or organelle with a very precise and consistent (8 day?) lifespan. I don't have the biology knowledge to know which, but it should be useful information for researchers. I haven't been able to find the expected lifespan of cerebral mitochondria, but if it's 8 days, that would be really, really interesting.

I'm going to wait a couple more days before trying cumin again, to make sure that my present level of symptoms is stable. I sure hope that it does work again, and doesn't stop working again after a couple of tries. The vacation was really nice.

Mel9, I'm not sure that taking cumin daily is the best idea. I did that years ago when cumin first worked for me, but the effect gradually wore off and then stopped working altogether. Maybe it wouldn't have stopped working if I took it only once a week or so? I don't want my body to adapt to daily cumin and have it stop working again. My personal guess is that taking it at the minimal frequency and amount required is safer until we know otherwise.

Hoping that other people can enjoy a cumin vacation too. :)