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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Positivity for you all! :)

Tella

Senior Member
Messages
397
I’d appreciate if any of u who have recovered substantially or fully would share what helped them most, so we can all get tips and inspiration!
please don’t omit things that are generally not talked about/forgotten like having a good sleep regime, healthy diet, no stress etc. Let’s bring some hope to each other :)
 

Wishful

Senior Member
Messages
5,815
Location
Alberta
In my 18 years of ME, I found two things by accident which made a big improvement in my quality of life. T2 or iodine, taken one dose every 21 days prevents a worsening of my symptoms. Cumin (Cuminum cyminum) was a very effective PEM blocker for me. After taking it every three days for about two years, it seems that my physically-induced PEM is permanently blocked. Wonderful stuff...for me. Sadly, neither of these treatments have worked for anyone else. It does show that it is at least possible to discover some treatments that can work effectively, even if it works only for one individual. If you try exotic foods and herbs&spices and supplements, or maybe even weird flavours of jellybeans, maybe you'll find something that works for you.

The other treatment I accidentally discovered cured the type IV food sensitivity that started with my ME. Canned coconut milk that proved to be 'a bit off' flushed that sensitivity right out. Two and a half years of triggering on most foods disappeared down the toilet, so to speak. I'm not proposing it as a reliable treatment though.

I've recently discovered that Evening Primrose Oil seems to improve my sleep, reducing the chances of insomnia. I'm not sure whether that insomnia is related to ME, since it didn't start until year 16 or so, but insomnia doesn't seem beneficial for ME, so avoiding it is good.

All of these were accidental discoveries. I can't think of any basic, logical things such as good sleep regime or healthy diet that made a difference. No, wait, I can think of one: avoid things that make your symptoms worse. :thumbsup:
 

Tella

Senior Member
Messages
397
In my 18 years of ME, I found two things by accident which made a big improvement in my quality of life. T2 or iodine, taken one dose every 21 days prevents a worsening of my symptoms. Cumin (Cuminum cyminum) was a very effective PEM blocker for me. After taking it every three days for about two years, it seems that my physically-induced PEM is permanently blocked. Wonderful stuff...for me. Sadly, neither of these treatments have worked for anyone else. It does show that it is at least possible to discover some treatments that can work effectively, even if it works only for one individual. If you try exotic foods and herbs&spices and supplements, or maybe even weird flavours of jellybeans, maybe you'll find something that works for you.

The other treatment I accidentally discovered cured the type IV food sensitivity that started with my ME. Canned coconut milk that proved to be 'a bit off' flushed that sensitivity right out. Two and a half years of triggering on most foods disappeared down the toilet, so to speak. I'm not proposing it as a reliable treatment though.

I've recently discovered that Evening Primrose Oil seems to improve my sleep, reducing the chances of insomnia. I'm not sure whether that insomnia is related to ME, since it didn't start until year 16 or so, but insomnia doesn't seem beneficial for ME, so avoiding it is good.

All of these were accidental discoveries. I can't think of any basic, logical things such as good sleep regime or healthy diet that made a difference. No, wait, I can think of one: avoid things that make your symptoms worse. :thumbsup:
Great. Thnx for the reply! Cumin and turmeric seem to be good for lotsa stuff :)
 

Wishful

Senior Member
Messages
5,815
Location
Alberta
Well, given how contrary ME is, cumin worked great for me but turmeric made me feel much worse. Lots of the 'really good for you!" herbal remedies, such as resveratrol, rhodiola rosea, and rosemary make my ME worse.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
Lots of the 'really good for you!" herbal remedies, such as resveratrol, rhodiola rosea, and rosemary make my ME worse.
I found especially in the first horrendous few weeks, that chewing on a little fresh Rosemary would help, but only usually for an hour or so. I was just so desperate I tried chewing on quite a few (safe for me) herbs, such as lavender flowers, and even ate half a dozen tiny daisies (Bellis Perennis) (neither are toxic but depending on allergies, sensitivities etc I am NOT recommending those plants for anyone else)
Anyway, neither helped. And Rosemary didn't seem to make much difference, except for the first "hit" that didn't last long.
I tried repeating that Rosemary and chewing on it a bit more, but there was no benefit at all. It's possible it just slightly raised my blood pressure at times when it was a bit low, that's all.

I think I might have a bad reaction to resveratrol....possibly. I am not always alcohol sensitive, and can have a little drink sometimes (GREAT moderation!) I can handle beer, and brandy okay, but red wine usually does something negative to me, which doesn't happen straight away, but can creep up if I have a small glass of red wine with dinner for a few days running. Then I can start to feel pretty horrid again and crash.
It doesn't sound like sulphites (?) as I can tolerate beer okay....so I'm guessing resveratrol maybe.

Oh and guess what? My store didn't have any cumin (I order online as can't face grocery shopping in the "real" world at all.) I was going to give it a try, but haven't done so far.

I also find it hard to pin down my PEM..... not sure how it operates. Sometimes I go for a walk and don't get PEM at all... other times crashes hit and I have been resting!
 
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AnnieT

Senior Member
Messages
157
I don't have anything revolutionary to share but when I was able to do more .. having an afternoon nap or lie down helped me avoid crashing.

Also looking after my mental health.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
@Tella I like your message of Hope. I think there is still lots of hope. I improved over last year from the way it had been before.
Unfortunately I do slip back sometimes and have bad crashes still. Though it's hard to see perspective when you are in one of those....up until fairly recently I did feel my baseline had greatly improved. I keep hoping this current crash which does not feel very nice, will pass quickly and I will return to my quite mild/moderate baseline, which seems to have been a trend in the last 18 months.

Time itself seemed to help me more than anything, and being very careful with my energy.
 

Wishful

Senior Member
Messages
5,815
Location
Alberta
How long did it take before you noticed a change from the cumin?

Hours. If I forgot to take it and developed PEM, I could take a level tsp and start feeling the PEM fade within a couple of hours. I never tested how soon taking it before exertion would work to stop PEM from starting, but I would guess hours there too.

Most things that affect my ME symptoms start working within hours. I think ME doesn't involve cells becoming damaged in a way that requires time-consuming replacement. I thin it's a chemical imbalance, and if we can shift whatever is interfering with proper protein production or whatever, we can switch back to our healthy state within minutes.
 

Wishful

Senior Member
Messages
5,815
Location
Alberta
I was just so desperate I tried chewing on quite a few (safe for me) herbs,

I've tried various leaves, blossoms, and berries during walks in the woods. Usually after checking that they aren't listed as poisonous. There's no way to know that some innocuous looking plant on the forest floor isn't an effective treatment without trying it. Of course, there's no way to know that just one more berry or leaf is what it would take to notice an effect.

Dogwood berries taste weird. Just saying... :xeyes:
 

gregh286

Senior Member
Messages
979
Location
Londonderry, Northern Ireland.
Sauna....good to remove lactic our hypoxic cells make.

Glutamine......bcaa....eat little and often.....keep body responses to minimum.
Carbs will create more lactic no oxygen to react with..give you tachycardia.

In our high energy dependent CDR state....small trigger can be big trigger....body sentinel cell on high alert all time....
Dont freak your body out if possible.
Makers diet. No factory bound shit. MSG...fake colours ...additive etc
 

Tella

Senior Member
Messages
397
Interesting as some say they really feel more tired when they eat less potatoes and just carbs. And some especially those who can’t move much at all or are very slim seem to find they need carbs to try to bulk up and not lose weight.
 

Tella

Senior Member
Messages
397
@Tella I like your message of Hope. I think there is still lots of hope. I improved over last year from the way it had been before.
Unfortunately I do slip back sometimes and have bad crashes still. Though it's hard to see perspective when you are in one of those....up until fairly recently I did feel my baseline had greatly improved. I keep hoping this current crash which does not feel very nice, will pass quickly and I will return to my quite mild/moderate baseline, which seems to have been a trend in the last 18 months.

Time itself seemed to help me more than anything, and being very careful with my energy.
Yes it seems for most people, if they pace hard and don’t do detrimental things time heals them at least a bit.
 

Davsey27

Senior Member
Messages
517
Experiment with playing with ways to improve mitochondria

Some may work better than others

Sunlight(but not too much)
Minimize emf exposure
Stress reduction
Pacing

This has not helped improvement much but has kept CFS in the moderate range
 

Davsey27

Senior Member
Messages
517
Sauna....good to remove lactic our hypoxic cells make.

Glutamine......bcaa....eat little and often.....keep body responses to minimum.
Carbs will create more lactic no oxygen to react with..give you tachycardia.

In our high energy dependent CDR state....small trigger can be big trigger....body sentinel cell on high alert all time....
Dont freak your body out if possible.
Makers diet. No factory bound shit. MSG...fake colours ...additive etc

With regards to diet.You wouldn't say intermittent fasting getting into autophagy is good for this condition?

I hear you on the body responses
 
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