My fatigue is gone. My poisoned feeling, gone. PEM, what PEM?

[seamyb]

Ok, so it's still very early days.

But thanks to a post from @Wishful about cumin (and a bit of effort to get over the thought "cumin will not impact my multi-system, chronic and debilitating illness"), I have discovered that cumin has had a huge impact on my multi-system, chronic and debilitating illness.

If you have seen Wishful's post and didn't fight that feeling of disbelief, I strongly urge you to give it a go. I'm now of the mind that I've had some kind of chronic infection, either mycotoxins, bacterial or something. Cumin (and some other spices actually) has been shown to kill these microbial agents.

Wishful only claimed that it blocked PEM. For me, it has increased energy and blocked PEM, although perhaps I was in a constant state of PEM? It's possible because I don't pace good.

I feel very good all day. Normally I feel very ill - I had been mild but was slowly descending down through moderate recently. Now I'm either in remission or super mild.

Wishful noted that the effect has continued for years. They said that they needed to take it every 3 days. I seem to notice the effect wear off the next day. But I'm only about 5 days into this - 5 days of relief being huge for me.

I want this tried en masse and the science discussed. I am not a cumin salesman and have no stakes in the Indian economy.

 

[Judee]

I did try it. Unfortunately, it only gave me heartburn and cumin burps (tmi).

I'm glad it's working for you. I hope it keeps going.

You will likely make @Wishful's day though. He's been hoping someone else would be helped by it too.

 

[seamyb]

I did try it. Unfortunately, it only gave me heartburn and cumin burps (tmi).

I'm glad it's working for you. I hope it keeps going.

You will likely make @Wishful's day though. He's been hoping someone else would be helped by it too.

That's a pity, I'm sorry. I think it gives me heartburn as well although I can't be sure as I've had it recently before the cumin.

Have you tried any other antimicrobial herbs or spices (actually can't believe I'm asking this)? It might be worth a try and is very low hanging fruit to knock off the "tried it" list. Of course, some may not have microbial problems at all.

A paper detailing some antifungal and antibacterial herbs and spices:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5486105/

Apologies if I seem like a natural remedies guru who lives in the forest. I'm not, I've just had some long-held beliefs turned upside down.

 

[wabi-sabi]

I tried cumin, and aside from tasting nice and staining much of my kitchen yellow, it did nothing for the illness.

 

[mattie]

I tried cumin, and aside from tasting nice and staining much of my kitchen yellow, it did nothing for the illness.

Cumin is not yellow. Turmeric is.

here is the link to the mentioned thread started by @Wishful

 

[katabasis]

Cumin is not yellow. Turmeric is.

There's always this naming confusion with cumin - what I assume @seamyb is referring to is Cuminum cyminum, commonly referred to as cumin. However, there is also an herb called 'black cumin' even though it is a completely different family of plant (Nigella sativa). Additionally, one of the bioactive compounds in turmeric (Curcuma longa) is known as curcumin. All of these herbs seem to have some possible use in ME/CFS, so it's good to be specific when discussing them to avoid this confusion.

I tried cumin (C. cyminum) a couple of months ago. I even went out of my way to buy fresh, high quality cumin, in case whatever active component of the herb was prone to degradation. It did seem to have some effect on PEM, definitely beyond the extent of placebo or coincidence, but neither was it particularly strong. It also seemed to be inconsistent, only having this effect maybe one in every three times I took it. I was unable to find a pattern in this, and the effect only lasted part of a day, so I no longer bother with it.

The literature suggests that cuminaldehyde, present in cumin, has some anti-inflammatory properties, reducing some interleukins and TNF-alpha, which might account for its effect on PEM (link 1 link 2). It's certainly reasonable to think it could be very helpful for a subset of ME/CFS sufferers, but it doesn't strike me as something that would really get to the heart of the disease process.

However, I agree that more people should give cumin a shot, since it is not costly and has a long history of human use to establish its safety. The teaspoon quantities that seem to be effective for ME/CFS in the few reports that exist are a similar level to the dietary intake of millions of people worldwide, so there's probably little risk of any negative effects.

 

[wabi-sabi]

Cumin is not yellow. Turmeric is.

Oops, yes. Brain not working.

Neither cumin nor tumeric have done anything for me, apart from taste nice.

 

[andyguitar]

Cumin (and some other spices actually) has been shown to kill these microbial agents.

Not so sure they would be effective in killing microbes everywhere in a person but Cumin (and other herbs/spice's) could be effective in killing pathogens in the gut. Did your me/cfs start with gut problems i wonder?

 

[seamyb]

Not so sure they would be effective in killing microbes everywhere in a person but Cumin (and other herbs/spice's) could be effective in killing pathogens in the gut. Did your me/cfs start with gut problems i wonder?

Well... breathing problems (air hunger) were my only issue for about a month. Then the next symptoms to appear were gut issues. And these were very severe - terrible constipation and horrendous gut pain. Almost crashed the car it was that bad.

But B12 has sorted that problem. I've been messing about with the methylation stuff. B12 cured my gut issues, but if I didn't sustain a level of B12 supplementation, they would return. So, I think you're on to something here, yet so much still remains unknown.

 

[keepontruckin]

Didn't Alain Moreau mention cumin might be worth trying.
It is anti- parasitic too

 

[Hip]

Wishful only claimed that it blocked PEM. For me, it has increased energy and blocked PEM, although perhaps I was in a constant state of PEM? It's possible because I don't pace good.

I feel very good all day. Normally I feel very ill - I had been mild but was slowly descending down through moderate recently. Now I'm either in remission or super mild.

Amazing! So the kitchen spice cumin (Cuminum cyminum) has instantly taken you from say mild/moderate, up to mild/remission?

That is very interesting, because previously @Wishful had found that his cumin treatment, which was so effective for him as a PEM buster, did not seem to help any other ME/CFS patients who tried it. It did not help me. His cumin anti-PEM thread is here.

So I think you are the first person who has had success with cumin, other than @Wishful.



Are you using the same dose as @Wishful, which is one level teaspoon of ground cumin powder?

After taking this dose of cumin, how long would you say it takes before the benefits manifest? Sounds like its works on the same day, from your description.



Can you try to characterize your ME/CFS? It may be that cumin works for a particular type of ME/CFS patient, and if we can figure out what that type is, it will make it easier for other ME/CFS patients to work out in advance if cumin might help them.

So for example, have you been tested for the viruses linked to ME/CFS, and if so, do you know which infections your ME/CFS is linked to? Did you ME/CFS appear after a viral onset?

I see from your introductory post that you suspect coronavirus may have triggered your illness, because you experienced breathing difficulties: did you notice any sort of acute infection (sore throat symptoms, for example) just before the breathing difficulties appeared, which would indicate an infectious onset of ME/CFS?

Do you have dysautonomia (like POTS, NMH), do you have autoimmune issues, do you have gut issues like SIBO or IBS?

Do you satisfy the Canadian consensus criteria for ME/CFS?

I'm now of the mind that I've had some kind of chronic infection, either mycotoxins, bacterial or something.

If cumin started working for you on the same day that you took it, it's unlikely to be working through any antiviral, antifungal or antibacterial effect, as treating such infections takes weeks, months and even years. So a very rapid response to cumin is not consistent with a antimicrobial action.



Cumin contains a compound called cuminaldehyde, which has known mitochondrial effects. Around 1.6% of cumin is cuminaldehyde. Ref: 1 See also this post.

So it may be this cuminaldehyde which has beneficial effects on the mitochondria in some ME/CFS patients.


What brand of cumin did you use, @seamyb? Was it a supermarket brand?

You can buy pure cuminaldehyde cheaply (see here and here), as it is used as a perfume ingredient. It is interesting that in the first link, it says:

Cuminaldehyde
This item is unstable, minimize contact with air as much as possible.

If cuminaldehyde is unstable and breaks down in contact with air, this makes me wonder whether the cuminaldehyde levels in cumin which is not fresh might be low.

This could explain why lots of ME/CFS patients have found no benefit from cumin. Maybe you need fresh cumin, so that there is a sufficient amount of cuminaldehyde in it.

 

[xebex]

I have been having some small improvement with cumin too, it doesn’t seem drastic like yours but there is some mild PEM relief today. Will have to keep trying it for a couple more weeks I think before I can be sure.

 

[Wishful]

They said that they needed to take it every 3 days.

For me, it lasted a consistent 3 days at the level tsp dosage. I did try 5 or 6 full tsps once, and the effect lasted a couple of days longer; not worthwhile. I wouldn't be at all surprised to find that it had different durations for different people.

So I think you are the first person who has had success with cumin, other than @Wishful.

There are two or three others now, plus a couple who reported mild benefits. At least it's out of the 'only works for one person in the whole world' category.

So a very rapid response to cumin is not consistent with a antimicrobial action.

Yes, I believe that it's altering some chemical pathway in the brain. For me, it would start reducing existing PEM within hours, and would work just as well when held in my mouth (sublingual absorption)for a few minutes and then spat out. Figuring out what chemical pathway is beyond me. This page ( https://hmdb.ca/metabolites/HMDB0002214 ) gives some pathways, but is lacking in detail.

You can buy pure cuminaldehyde cheaply (see here and here)

I thought it was much more expensive (didn't search long enough). For those who detest the taste and maybe burp it for hours, maybe the pure stuff might work. I also suggest perilla; perillaldehyde is similar to cuminaldehyde, so there's at least a chance that it might work for someone that cuminaldehyde doesn't.

Maybe you need fresh cumin, so that there is a sufficient amount of cuminaldehyde in it.

No, I tried some cumin seeds that were many years old, and while it required about double the amount (IIRC), it still worked. It also worked in cooking (curries simmered for a while) and baking, so it seemed quite 'sturdy'. The amount of cuminaldehyde does vary with variety, so the cumin seeds from some locales may be low in cuminaldehyde; there's a list somewhere on the internet. The cheap no-name ground cumin bought in Canada worked for me.

If cumin works reliably for seamyb, maybe some research team would want to do some before/after testing to figure out what it's doing. They'll have to do it before it stops working (permanent cure of PEM) as it did for me after ~2 years.

 

[seamyb]

Amazing! So the kitchen herb cumin (Cuminum cyminum) has instantly taken you from say mild/moderate, up to mild/remission?

Yup, imagine how angry I'd have been if my doctor said "you just need to eat more curry"... I need to give this more time. My experience with B12 has shown that something can work great and then poop out a good deal. But it's very difficult to hold it in when you've been very well for 5 days.

Are you using the same dose as @Wishful, which is one level teaspoon of ground cumin powder?

Yup same dose. I tried leaving a few days in between like Wishful does, but I noticed the effect wearing off. So I'm doing it daily. Going to take one in the morning and one in the evening now, because the effect is still apparent when I dose once a day, meaning I'm somewhat fatigued right before I take it.

After taking this dose of cumin, how long would you say it takes before the benefits manifest?

It's immediate. Pretty sure when I put it around my gums the first time it was a matter of tens of minutes. Couple of hours if I neck a few capsules. But the effect isn't strong enough now (i.e. the difference) to observe whether the gums accelerate the effect.

If cumin started working for you on the same day that you took it, it's unlikely to be working through any antiviral, antifungal or antibacterial effect, as treating such infections takes weeks, months and even years. So a very rapid response to cumin is not consistent with a antimicrobial action.

Disheartening. How I'd love for an infection I could just kill with strong curry!

Can you try to characterize your ME/CFS?

Rotten

I needed 10-12 hours sleep (or 10-12 hours lights out and whatever I get in those hours). I would wake feeling exhausted, but I could actually feel the exhaustion - it wasn't just an absence of energy, it was a real ill feeling. Could feel it all over the body, not just in the head. Would need to lie in bed for an hour and it would get slightly better. On good days it would improve. I'd usually be ok at night.

I would get out of bed and my heart rate would shoot up. Heart rate would shoot up on standing at any time. But if I'm not exerting myself, it would drop back down even when continuing to stand. Any exertion would keep it up. A shower would put it up to 120 for the duration. Not sure if I would be Dxed with POTS, but something similar definitely going on.

Air hunger was the 1st symptom and the only one for a while. It completely went away and only ever reappeared upon supplementation with B12 and possibly other B vitamins. B12 made me otherwise better. Cured my gut (constipation, pain), improved fatigue and urinary problems (very frequent urination). Ceasing of B12 supplementation would bring this all back. The fatigue, ill feeling and PEM have all been creeping back recently even with B12 supplementation. B12 also causes me bad neck pain, although haven't quite worked out whether this is a potassium problem or not.

Many, many other symptoms, mostly neurological. I saw you posted about gum recession, I also had this.

So for example, have you been tested for the viruses linked to ME/CFS, and if so, do you know which infections your ME/CFS is linked to? Did you ME/CFS appear after a viral onset?

I have had no medical support. My doctor did a full blood count and told me to be reassured. After begging him for help several times he eventually made a referral. That referral has still not manifested some 12 months later.

I see from your introductory post that you suspect coronavirus may have triggered your illness, because you experienced breathing difficulties: did you notice any sort of acute infection (sore throat symptoms, for example) just before the breathing difficulties appeared, which would indicate an infectious onset of ME/CFS?

Just air hunger. Nothing else suggested to me it may have been Covid. Air hunger is not the typical breathing issue with acute covid. I suppose it's possible I was asymptomatic and my post-viral issues included air hunger. But it could well be that I have the catastrophic luck of having this red herring during a respiratory pandemic.

I was not long off sertraline (SSRI) at the time. Had very bad withdrawals from this in the form of anxiety and depression, but I'd been recovered for a couple of months before all this started. I had also recently begun quite intense strength training after years of being sat behind a computer most of the time.

Maybe 6 months before this I had what I suspect (very heavily) was whooping cough. I had a cough that lasted more than 100 days, it was very intense and it caused me to struggle to breathe back in after coughing out, causing a characteristic "whoop". Very tickly, dry and incredibly intense cough - my ribs were in agony. I had been recovered for about 6 months before the CFS air hunger, with no other

6 years sober from being the worst alcoholic I know.

Do you have dysautonomia (like POTS, NMH), do you have autoimmune issues, do you have gut issues like SIBO or IBS?

Do you satisfy the Canadian consensus criteria for ME/CFS?

I'm not sure about dysautonomia, but I'd suspect yes. A quick glance at the symptoms would definitely suggest so, plus I've suspected from symptom patterns that the autonomic nervous system is behind a lot of my symptoms - forgetting to breathe when falling asleep, or thinking I can't breathe when falling asleep but I just need to swallow.

See above for POTS.

What is NMH?

What brand of cumin did you use, @seamyb? Was it a supermarket brand?

Tesco.

Maybe you need fresh cumin

The cumin I've been using is definitely not fresh. It was sitting in my cupboard for... a year? no idea. But definitely not fresh, it was opened and in a jar which is not airtight.

 

[Wishful]

Air hunger was the 1st symptom and the only one for a while.

Is it actual air hunger, or just occasional deep breaths. My ME makes me sigh frequently. I don't feel a greater need for air. Sighing is controlled by just a few neurons ( https://newsroom.ucla.edu/releases/...inpoint-origin-of-sighing-reflex-in-the-brain ), so it's reasonable for ME to alter sighing rate.

That referral has still not manifested some 12 months later.

I had a referral not appear. The doctor just forgot to do it. I filed a complaint, and it turned out that the doctor didn't even enter my last several visits in the records. He had to do some remedial training after that. If you don't hear back about a referral after a month or so, I recommend asking the doctor about it.

 

[seamyb]

Is it actual air hunger, or just occasional deep breaths.

Full-on ready to phone an ambulance air hunger. Feels like I'm only able to take 10% of a breath. That's when it's bad. But I do get the sighing as well.

If you don't hear back about a referral after a month or so, I recommend asking the doctor about it

Our waiting lists are brutal at the minute, and that's for people who doctors believe. I've actually seen the referral letter and have had confirmation. They're just pushing me down the line because ME isn't real or something. Pah!

Do you satisfy the Canadian consensus criteria for ME/CFS?

forgot to answer this above. I do indeed.

 

[ljimbo423]

Full-on ready to phone an ambulance air hunger. Feels like I'm only able to take 10% of a breath.

I use to get pretty bad air hunger, when I was in an ME/CFS flare. I was much sicker then, moderate to severe. I had the AH so bad twice, I went to emergency care because I thought I had bronchitis.

Since my health has improved to mostly mild, I don't get that kind of air hunger anymore. I still get it sometimes but it's much, much milder.

 

[Rufous McKinney]

I use to get pretty bad air hunger, when I was in an ME/CFS flare. I was much sicker then, moderate to severe. I had the AH so bad twice, I went to emergency care because I thought I had bronchitis.

when I get my severe gastro events (that are near death experiences)...I get the AIR HUNGER so very badly its frightening.

My lungs are dry and uncongested. An anvil might feel parked on them, however. So heavy-a whole elephant at times like that TV commercial.

This is the brain or end organs screaming for oxygen in my opinion. The non deforming red blood cells aren't even reaching: somewhere they need to reach. Oxygen at my fingertip is excellent.

I noticed on half a Vicodin, the air hunger got much better. So a pain killer- somehow did something there.

 

[Judee]

Have you tried any other antimicrobial herbs or spices (actually can't believe I'm asking this)? It might be worth a try and is very low hanging fruit to knock off the "tried it" list. Of course, some may not have microbial problems at all.

Yes. I've used thyme and liked it. It gave me a tiny boost and I think it helps with Candida too. You might like this chart (The one with the yellow heading - sorry for the small print.)

https://cfsremission.com/treatment/antibacterial-herbs-for-cfs/

 

[ljimbo423]

This is the brain or end organs screaming for oxygen in my opinion. The non deforming red blood cells aren't even reaching: somewhere they need to reach. Oxygen at my fingertip is excellent.

My first thought is it's a brain thing. I had my oxygen level checked too. It was also fine.