Personal experience of using cumin to treat PEM

Put in mouth, swallow. Water helps. Some people really hate the taste. I don't love it, but I don't hate it either. For the pleasure of doing activities without suffering PEM, I'd put up with fairly awful tastes.

 

If in seed form then I'd just make up some Jeera rice, as that contains 1 tsp of cumin seeds, and eat that.

Of course I know this because I make it quite regularly, but I haven't noticed any effect on PEM.

It does go well with a daal tho.

 

I'd choke on that! Not exaggerating, either.

Come to think of it, a south Asian friend often makes that—I don't have the recipe and hadn't thought about quantities of cumin.

I'm only ever wiped out for a couple of days after eating it, because she lives almost two hours' drive away and I end up staying too long because we don't see enough of each other.

 

Sigh, this folly of anecdote and analogy is keep getting me into trouble. I made up those numbers. I'll make up for it by actually measuring the effect of cumin with coin toss for taking cumin after heavy exertion, and hours spent lying down afterwards.

 

Moved posts

Is this just a you thing or have other people who tried this had noticeably positive reactions?

 

A long Phoenix Rising thread about this. From what I recall, only a few found some relief, but it was more than one person at least:

Cumin (Cuminum cyminum): Possible PEM Blocker

 

There are a few people who have reported mild benefits from cumin; nothing like the 100% blocking of PEM that it gave me. There are threads about it on Phoenix Rising if you want more detail. Amazing wonderful treatment for me, but why, and why not for others? Another wonderful treatment for me was T2 (3-5 diiodothyronine), but again, just for me. For most treatments for ME, it seems that there one or a few individuals it works really well for, some that it has a negative effect on, and the majority it has no noticeable effect on. Then there's the problem of "works well the first few times, then stops working and never works again" that happens all too often.

I think there were more "I can't stand the taste of cumin" responses than ones that reported a benefit. I don't love the taste, but I don't mind it either, and for the benefits, I'd have taken it even if it tasted awful.

 

Moved posts

I had typical PEM before, both physically and cognitively induced. Cumin (cuminum cyminum) blocked my physically-induced PEM 100%, and after 2.5 years of treatment, I no longer triggered on physical exertion. I sometimes trigger on cognitive exertion, but sometimes not. so, does that mean I only have ME part of the time? The baseline symptoms continue even without PEM, so the disease is still there. The fact that I was able to block PEM with a chemical (cuminaldehyde) implies that other people might be able to block that pathway(or another) with endogenous chemicals or something in their usual diet. Another possibility is genetic, epigenetic, or other individual variation that doesn't support the PEM mechanism. If someone matches other PWME's symptoms and responses very closely but don't have standard PEM, I'd accept that as ME. I wouldn't select them for a standard ME research study though. They might be great for a "what's different about this person" study.

The CCC--and all the other criteria systems--fit some percentage of PWME, but there will be some percentage of outliers that just don't fit but still fit in many other ways. It's not an absolutely accurate system; it's just better for most purposes than Fukuda or other systems. Studies are hard to compare if they used different criteria. I just checked the ICC as well, and I'm not sure which is better. I still think I fit some of the categories as "sorta, kinda, sometimes" rather than clearly and positively.

 

Is that like eating a load of cumin or does it require a special proprietary blend supplement, am not familiar with any of the words you use for the substances or chemicals apart from just cumin?

 

It was just typical no-name ground cumin (cuminum cyminum, not black cumin), the stuff used in curry. For me, a level tsp blocked PEM completely for 3 days/dose. Only a few other people have reported slight, but helpful, benefits from it. So, it's a real long-shot possible treatment, but it's cheap, readily available, and as safe as a commonly-used foodstuff can be.