A lot of exercise have a positive effect on your microbiome, especially when you have gut dysbiosis. And don't underestimate your resistance which increases a lot when you are exposed to the sun (vitamin d) and doing exercise and enjoying being outside (no stress, more calm). It is a good combination to keep viruses etc. in your body under control. Everything in your body is going up, your adrenals getting stronger etc etc.
Symptom free for 3.5 months. Symptoms now returning.
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Your triggers is what you need to find out.
It's personal but my biggest PEM triggers are toxins and pesticides. Toxins can come from mold, but also from algae. Algae are often overlooked, but do not underestimate the blue algae. The blue algae produces many toxins (also called cyno bacteria). Also, visit your crawling space under beneath your house, you can be surprised what's going on there.
It's personal but my biggest PEM triggers are toxins and pesticides. Toxins can come from mold, but also from algae. Algae are often overlooked, but do not underestimate the blue algae. The blue algae produces many toxins (also called cyno bacteria). Also, visit your crawling space under beneath your house, you can be surprised what's going on there.
That's a lot. Sounds like being careful with everything is the best course of action now. Hopefully you can find a sweet spot where you could stay healthy without too much stimulation and stay below risk threshold.
Florida Guy
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This sounds a lot like other remission stories I've read either spontaneous or they used something that worked. They get better for weeks and months, some for years but then typically there is some increased stress and or trauma or another infection and they relapse. We are under tremendous pressure to earn a living, get an education, a job, a family etc and also keeping up with the jones'. When it seems like the nasty condition has gone away, its very tempting to take it all on again and to keep pushing when symptoms come back. But, in most cases that seems to lead to falling back to a worse condition. Often, using what made the first recovery happen, no longer works
I think keeping on with pacing and not pushing yourself physically or mentally is very important to keep the remission going. The pressure to work and have a normal life is very strong and that is why lots of pw/cfs often relapse. OP may be able to get back to remission by stopping the stressful activity and doing careful pacing. At a minimum that will help avoid getting worse. Every case I heard about where they kept pushing, they always got worse.
I think keeping on with pacing and not pushing yourself physically or mentally is very important to keep the remission going. The pressure to work and have a normal life is very strong and that is why lots of pw/cfs often relapse. OP may be able to get back to remission by stopping the stressful activity and doing careful pacing. At a minimum that will help avoid getting worse. Every case I heard about where they kept pushing, they always got worse.
Just an update, I’ve been moderate-severe ever since I made this post in September, but for the past 3 days I’ve seen big improvements in my symptoms and am right now mild.
A week ago I had PEM and was severe. I can’t understand how it can change this much so fast? I can’t make sense of it. I’ll definitely take things slow and hope that this is another remission. Who knows. It’s only been 3 days though. But it’s been by far the best 3 days I’ve had since I was in remission last year.
A week ago I had PEM and was severe. I can’t understand how it can change this much so fast? I can’t make sense of it. I’ll definitely take things slow and hope that this is another remission. Who knows. It’s only been 3 days though. But it’s been by far the best 3 days I’ve had since I was in remission last year.
Did you discontinue any foods that had been part of your diet? Even without changing the foods, something could change in your gut microbiome that makes a difference. My digestive system very definitely affects my ME severity, and it makes drastic changes seemingly at random.
Recent example: I tested my tolerance for onions, and the next day I felt really awful, and managed to go for a short trudge. The next morning, same trail, and I hiked briskly for 3 hrs. I've often felt quite unwell for many months, then suddenly feel like going for multi-hr hikes. Something changes in my body, but researchers haven't been looking in the right place at the right times. I think it might only be a few brain cells responding to signals from the gut, or maybe it's slight changes in multiple organs, nerves, etc, that add up to a significant change in a few brain cells.
That is really interesting. I’ve not changed anything in my diet, although I have been in a slight calorie defecit for a month as I want to lose a few kg.
The biggest thing for me has been sun exposure. I live in Norway, and I’ve not been in the sun since late September. I find sun to be the most effective treatment to my ME/CFS. But I don’t see how that alone can make me go from moderate/severe to mild so fast? I’ve added Alpha Liopic Acid to my supplement stack, and I’ve also started low dose Amisulpride again, after not taking it for a few months. These things are the only things I’ve changed recently, everything else is the same.
The biggest thing for me has been sun exposure. I live in Norway, and I’ve not been in the sun since late September. I find sun to be the most effective treatment to my ME/CFS. But I don’t see how that alone can make me go from moderate/severe to mild so fast? I’ve added Alpha Liopic Acid to my supplement stack, and I’ve also started low dose Amisulpride again, after not taking it for a few months. These things are the only things I’ve changed recently, everything else is the same.
godlovesatrier
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Comiserations. I've just been through a long period of relative improvement, not a dramatic improvemnt I'd like to point out but I have been feeling relatively well. Until I wasn't and I can't even discern a trigger. i think gradual run down of my baseline - which is another issue I have to explain to doctors sometimes - causing a sort of invisible weakness is what has done it. That and trying some medication which I think instead of improving my long covid has actually made it a little worse.
But it's pollen season here now so it might just be a coincidence.
Hope you pick up soon!
But it's pollen season here now so it might just be a coincidence.
Hope you pick up soon!
andyguitar
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andyguitar
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Exposure to sun increases Dopamine levels, so does Amisulpride. So it could be your Dopamine levels have been low. Ever tried Light therapy?
@godlovesatrier I’m glad you had a period of feeling a little better and I hope you return to that again soon. It’s a challenge to figure out what’s working or what is making it worse. I wish you the best 
@andyguitar I’ve not tried light therapy, but I’ll definitely look into that. Thanks for the tip. I’m always more ill when I can’t get out in the sun, which I can’t do from Oct-Mar because I live in Norway. Sun and Amisulpride combo is probably the reason I’m doing better, yeah…
In my experience my ME/CFS is like a switch (like @Wishful pointed out), it’s either on or off. The million dollar question is what exactly causes it so switch. Right now the switch is off, and if I pace well I hope I can keep it that way.
In my experience my ME/CFS is like a switch (like @Wishful pointed out), it’s either on or off. The million dollar question is what exactly causes it so switch. Right now the switch is off, and if I pace well I hope I can keep it that way.
DrUniverse
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Really interesting, i feel also better after sun exposure but i haven that literally for ages.
What i know:
Sun disinfects btw kill pathogens
Helps move T Cells faster for killing Virus
and of course vit d production
(all out of my brain)
Anyone any experience with UVB Lamps? There are some out for reptiles
Really need to add light therapy to my overall treatment
What i know:
Sun disinfects btw kill pathogens
Helps move T Cells faster for killing Virus
and of course vit d production
(all out of my brain)
Anyone any experience with UVB Lamps? There are some out for reptiles
Really need to add light therapy to my overall treatment
Less mold spores ;-)
GreenEdge
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A key to removing stress from eating is to stop before you feel full. This is standard practice in Japan.
For advise of reversing obesity or (pre)diabetes, see my post here.
Don't eat like a slave. Bread is very poor in nutrients. Where you see signs "Don't feed the animals" is where humans feed animals bread which makes them sickly.
I eat 99% beef and lamb, so I eat like a king.
linusbert
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depends on the bread, american bread probably. but if you get a good traditional german "whole" bread, it has a lots of nutrtion.
but lamb is a baby, why do you eat baby?I eat 99% beef and lamb, so I eat like a king.
GreenEdge
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Antinutrients in flour can interfere with the absorption of nutrients, potentially leading to mineral deficiencies and digestive issues, although they are generally not a major concern for most people. - Source: Google AI
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Artemisia
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this is what I was wondering, because the days would be getting shorter when you started this post early September. Maybe colder and you got less sun early Septebmer?
@Artemisia Yeah I got less sun from September. Today is really foggy where I live and although I don’t experience most ME/CFS symptoms right now, I do notice increased fatigue. I’m very sensitive to weather. I feel better when it’s sunny and somewhat warm.