Different recovery stories

Martin aka paused||M.E.

Martin aka paused||M.E.

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Irat said:
I don t know if it's allowed to post this,but this is an independant channel(not based on one special treatment) on you tube where people got interviewed by Raelan who has recovered herself and share their recovery stories from ME/CFS ,mold toxicity,Lyme, etc....

https://youtube.com/c/RaelanAgle
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Ah, Raelan.

When I became very severe I was in quite close contact to her nearly every day. I know her from Instagram. I've also read her book - at least I skimmed it.

Raelan... I don't know what she is recently talking about because we are not in contact anymore but back then she said - or to be more precise I break down what she said - that she recovered from “CFS” due to exercise EOD. She then made the decision just to travel and that cured her.

If that resonates with you...
 
I

Irat

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Martin aka paused||M.E. said:
Ah, Raelan.

When I became very severe I was in quite close contact to her nearly every day. I know her from Instagram. I've also read her book - at least I skimmed it.

Raelan... I don't know what she is recently talking about because we are not in contact anymore but back then she said - or to be more precise I break down what she said - that she recovered from “CFS” due to exercise EOD. She then made the decision just to travel and that cured her.

If that resonates with you...
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She was mild,but on her channel are really interesting stories and strategies from people,its not about her and 2 of them i know personaly,so it seems real,lol ....anyway I like her channel and she seems a kind person
 
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Boba

Boba

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Martin aka paused||M.E. said:
Ah, Raelan.

When I became very severe I was in quite close contact to her nearly every day. I know her from Instagram. I've also read her book - at least I skimmed it.

Raelan... I don't know what she is recently talking about because we are not in contact anymore but back then she said - or to be more precise I break down what she said - that she recovered from “CFS” due to exercise EOD. She then made the decision just to travel and that cured her.

If that resonates with you...
Click to expand...
What is EOD? Actually I thought she was fake, but it seems like she isn’t.
 
nerd

nerd

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Martin aka paused||M.E. said:
Every other day. She is not fake.
But I think we have to take into account that if one heals due to exercise Myalgic Encephalomyelitis might be the wrong diagnose!
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Unless it's a special form of exercise and combined with certain supplements or medicine. If someone accomplishes to build muscle and improve oxidation capacity, part of the pathophysiology is compensated for. But I think it's important to distinguish if the pathophysiology is cured or if the physiology is in such a good condition that the pathogenesis isn't symptomatically noticeable anymore. If they have another severe infection, will they relapse? From my understanding, exercise can only improve the pathophysiology but not the pathogenesis.
 
Martin aka paused||M.E.

Martin aka paused||M.E.

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nerd said:
From my understanding, exercise can only improve the pathophysiology but not the pathogenesis.
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If you push through - and that is what she did - you'd get worse if you have ME. That's the point. We wouldn't have to discuss the publication of the NICE guidelines if it would not be the case.

If I push through I crash until I can't move anymore for months...
 
nerd

nerd

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Martin aka paused||M.E. said:
If you push through - and that is what she did - you'd get worse if you have ME. That's the point. We wouldn't have to discuss the publication of the NICE guidelines if it would not be the case.

If I push through I crash until I can't move anymore for months...
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Allow me to explain. Let's assume that there's something in the pathophysiology that prevents exercise to build up oxidation capacity but instead causes the opposite. Because that's the case as far as we can tell. Let's assume that there's a supplement or medicine that can block just this single pathway that prevents the increase in oxidation capacity, but doesn't fix the pathogenesis and remaining pathophysiology of ME.

If someone were to take this supplement or medicine without exercise, they would barely feel any improvement because by itself, structural oxidation capacities don't improve without trigger. That's basically why IHHT helps to improve mitochondrial function, because of the hypoxic trigger, and because it avoids the pathways that induce PEM. In this scenario, exercise would be helpful if combined with the right supplement or medicine. But it would have to be a lucky shot to find the right one. And it doesn't make this therapy a cure of ME as much as HCQ isn't a cure for SLE. Somehow, they just improve parts of the pathophysiology in such a way, that the disease can be maintained in a better way. Theoretically, you could, for instance, improve mitochondrial function while still maintaining the mitochondrial fragmentation from HHV. You'd feel better, but you'd still be hosting the condition.

That's a general lesson for people who make claims that they have found a cure for whatever condition.
 
Martin aka paused||M.E.

Martin aka paused||M.E.

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nerd said:
Allow me to explain. Let's assume that there's something in the pathophysiology that prevents exercise to build up oxidation capacity but instead causes the opposite. Because that's the case as far as we can tell. Let's assume that there's a supplement or medicine that can block just this single pathway that prevents the increase in oxidation capacity, but doesn't fix the pathogenesis and remaining pathophysiology of ME.

If someone were to take this supplement or medicine without exercise, they would barely feel any improvement because by itself, structural oxidation capacities don't improve without trigger. That's basically why IHHT helps to improve mitochondrial function, because of the hypoxic trigger, and because it avoids the pathways that induce PEM. In this scenario, exercise would be helpful if combined with the right supplement or medicine. But it would have to be a lucky shot to find the right one. And it doesn't make this therapy a cure of ME as much as HCQ isn't a cure for SLE. Somehow, they just improve parts of the pathophysiology in such a way, that the disease can be maintained in a better way. Theoretically, you could, for instance, improve mitochondrial function while still maintaining the mitochondrial fragmentation from HHV. You'd feel better, but you'd still be hosting the condition.

That's a general lesson for people who make claims that they have found a cure for whatever condition.
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I got that. But it's not the case for her. It's like I've said in my post above.
 
ljimbo423

ljimbo423

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Martin aka paused||M.E. said:
Raelan... I don't know what she is recently talking about because we are not in contact anymore but back then she said - or to be more precise I break down what she said - that she recovered from “CFS” due to exercise EOD. She then made the decision just to travel and that cured her.
Click to expand...

I just watched a video she put out in February of this year. She said she had moderate ME/CFS and could only make it to her mailbox at the end of her street about one day out of 20.

She also said she recovered through changing her diet to a plant based whole foods diet, cut out caffeine, sugar, preservatives and toxins, did counseling, ate a lot of fermented foods full of probiotics for her gut, did different types of fasting, including juice fasting and did a lot of work on her gut.

She started exercising one minute every other day and slowly worked up from there. Did journaling, and meditation, got massages, did dry skin brushing, and stretching for her lymphatics, hot and cold shower therapy, and did pacing. She says she did A LOT to reduce and manage her stress.

She says, "All in all I had about a 10 year journey with ME/CFS". It took her 2 years to fully recover.

EDIT- Here is a direct link to the video I watched.
 
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nerd

nerd

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ljimbo423 said:
I just watched a video she put out in February of this year. She said she had moderate ME/CFS and could only make it to her mailbox at the end of her street about one day out of 20.

She also said she recovered through changing her diet to a plant based whole foods diet, cut out caffeine, sugar, preservatives and toxins, did counseling, ate a lot of fermented foods full of probiotics for her gut, did different types of fasting, including juice fasting and did a lot of work on her gut.

She started exercising one minute every other day and slowly worked up from there. Did journaling, and meditation, got massages, did dry skin brushing, and stretching for her lymphatics, hot and cold shower therapy, and did pacing. She says she did A LOT to reduce and manage her stress.

She says, "all in all I had about a 10 year journey with ME/CFS". It took her 2 years to fully recover.
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These are so many confounders, it might not have been related to exercise at all. Traveling, for instance, might have gotten rid of a water or mold toxin issue and also provide sorts of a proprioception dysfunction therapy if she had to sleep with a sleeping back and a travel foam mattress.
 
Martin aka paused||M.E.

Martin aka paused||M.E.

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ljimbo423 said:
I just watched a video she put out in February of this year. She said she had moderate ME/CFS and could only make it to her mailbox at the end of her street about one day out of 20.

She also said she recovered through changing her diet to a plant based whole foods diet, cut out caffeine, sugar, preservatives and toxins, did counseling, ate a lot of fermented foods full of probiotics for her gut, did different types of fasting, including juice fasting and did a lot of work on her gut.

She started exercising one minute every other day and slowly worked up from there. Did journaling, and meditation, got massages, did dry skin brushing, and stretching for her lymphatics, hot and cold shower therapy, and did pacing. She says she did A LOT to reduce and manage her stress.

She says, "all in all I had about a 10 year journey with ME/CFS". It took her 2 years to fully recover.
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That’s new to me honestly… thanks for clarification
 
I

Irat

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ljimbo423 said:
I just watched a video she put out in February of this year. She said she had moderate ME/CFS and could only make it to her mailbox at the end of her street about one day out of 20.

She also said she recovered through changing her diet to a plant based whole foods diet, cut out caffeine, sugar, preservatives and toxins, did counseling, ate a lot of fermented foods full of probiotics for her gut, did different types of fasting, including juice fasting and did a lot of work on her gut.

She started exercising one minute every other day and slowly worked up from there. Did journaling, and meditation, got massages, did dry skin brushing, and stretching for her lymphatics, hot and cold shower therapy, and did pacing. She says she did A LOT to reduce and manage her stress.

She says, "All in all I had about a 10 year journey with ME/CFS". It took her 2 years to fully recover.

EDIT- Here is a direct link to the video I watched.
Click to expand...
 
I

Irat

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Yes she has done a lot of things,but I mainly did post this link because of all the other recovery stories on her channel,which gives hope and ideas

I also read how very severe cases started kind of "gradual exercise" by moving their toes,if they don t crash,they move or lift one foot if they don t crash,they build up until they are able to brush their teeth and so forth and always combined with visualisation or something else which shifts/'calms the nervous system.so gradual exercise does not mean pushing yourself or working out.but building up slowly from your baseline.
 
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H

hapl808

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ljimbo423 said:
She also said she recovered through changing her diet to a plant based whole foods diet, cut out caffeine, sugar, preservatives and toxins, did counseling, ate a lot of fermented foods full of probiotics for her gut, did different types of fasting, including juice fasting and did a lot of work on her gut.

She started exercising one minute every other day and slowly worked up from there. Did journaling, and meditation, got massages, did dry skin brushing, and stretching for her lymphatics, hot and cold shower therapy, and did pacing. She says she did A LOT to reduce and manage her stress.
Click to expand...

A lot more than a ten year journey here. I did pretty much all of those things at one time or another, including the traveling. I managed to yoyo around the mild-moderate and moderate area for a good 15 years by pretending that I wasn't so sick and ignoring forums like these unless I was looking up specific supplements. Eventually I pushed myself a bit too hard - in the gym, traveling, when I got a cold, etc. One crash led to another and I ended up on the severe end of the scale. But all that stuff above never even got me back to mild - vegetarian, then vegan, then Wahl's, then paleo, then carnivore, then AIP, and so forth. Probiotics, making my own probiotics, fasting, exercising for 30s per day, then trying 60s EOD, and on and on.

Tiring just to read.
 
G

georgina699

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I got sick in April of 2017. Thanks to Internet I read about Lerner's protocol and convinced my doctor to presctibe high doses of Valtrex in July of 2017. I was on 3g of Valtrex for 6 weeks. I never recovred 100%, but I became functional. Fatigue was still there, at times pretty severe, but pain and dizziness went away.
In March of 2021 I received my second Pfizer shot. For 2.5 months I forgot I was ever sick, never felt better, but in June it all came back and is way way way worse than ever. I'm in bed a lot now and I have scary symptoms like crazy muscle weakness and pain. My eyes are also almost shut from ptosis. Dizzy and tired but wired feeling.
 
ljimbo423

ljimbo423

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hapl808 said:
A lot more than a ten year journey here. I did pretty much all of those things at one time or another, including the traveling.
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I here you. I've had this illness for 44 years. Spent 6-8 years severe and mostly bedridden. What works for one person, won't work for everyone or maybe no-one else.

I have recovered from severe to mostly mild, by changing my diet, treating my gut and taking a ton of supplements. Although it took many years to get from severe to fairly mild.

I'm truly sorry that nothing has worked for you. It really sucks. I was so sick when I was severe, that sometimes I didn't know when I would be able to get up and eat and I had nobody to help me. That was absolutely terrifying!
 
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