Full remission after 7 years of ME/CFS - What worked for me

[nolongerdiseased]

After reading this article my daughter tried it this week and is very pleased with reduced pain. Those of you with severe pain as she had should be able to see if it helps or not pretty quickly.

I'm so glad to hear that!! I hope she continues to see improvement. Hopefully she isnt experiencing too many unpleasant side effects by jumping into the full protocol that quickly

It seems there could be a lot of different benefits this diet has which contribute to good results. I was directed to another thread where spinach smoothies seemed to help those with ME due to high oxlates which lowered lactic acid levels, or something similar.

Also a side note but if anyone interested in trying it wants any more specific questions answered, or info on what specific resources I used I would be very happy to assist!

 

[Rufous McKinney]

Also a side note but if anyone interested in trying it wants any more specific questions answered, or info on what specific resources I used I would be very happy to assist!

question: did you have IBS issues before you launched the protocol?

 

[nolongerdiseased]

question: did you have IBS issues before you launched the protocol?

I had no IBS symptoms as part of my illness, nor any specific food intolerances that I knew of. I would take note of any trigger foods you might have and start really slowly if it's something you're looking to try and have IBS symptoms.

 

[Zoe Louise]

Hi all, just wanting to share my success story and how I got complete remission through an intense autoimmune protocol, low-dose abilify, and getting a cold.
Full disclosure the doctor who's autoimmune protocol I followed does absolutely make money from books and very expensive consults, but I gained all information through free online resources + facebook groups. I'll try keep this brief. Happy to answer any questions. Hope this is the right place to post...

I developed ME/CFS when I was 12 after a series of repeat viral infections. This took me from doing 16 hours of competitive gymnastics a week + school to being completely bedridden. I was unable to stand, walk, shower, or go to school. Over 3 years, I slowly improved to a plateu of "mild" function. I was at around 50% of normal function, with a 6 hour energy envelope per day. In November 2021, I decided to try some specific treatments and by March 2022 I reached full remission. I am 100% sure this was not spontaneous remission falsely accredited to something new. I've since had covid and had no relapse.

My symptoms: Post-exertional malaise (I would experience a crash after every single day at school) complete exercise intolerance, cravings for salt, sensitivity to smells, sore throat, nasal congestion, muscle pain, joint pain, nerve pain, headaches, immense brain fog, inability to speak, breathing difficulties, heart palpitations, dysautonomia, paralysis in severe crashes, bad reactions to vaccines, inability to get colds/flus.

What didn't help: GET (shocker!), a naturopath, supplements (vitamin d, iron, b-12, b1, co-q10, omega 3), general diet improvements (less junk, more veg, adding chia pudding + green smoothies to normal diet), pacing (helped me crash less by staying within energy envelope, but did not increase energy envelope at all)

What did help:
-Strictly following the Golder autoimmune protocol for 3 months, from November stopping start of February. It consists solely of 3L of water, 650g of raw cruciferous veg/leafy greens, 1/2 cup of chia or flax seed a day + iodine and b-12 supplement. All raw, absolutely no foods other than raw fruit/veg/chia. This is supposed to be done for 6-8 weeks, but I went longer as symptoms were still improving.

Pros: It was the first thing to work in 7 years for me and I saw results within 2 weeks. It took me from around 50% function to 75% function. By the start of January my PEM was gone, I could stay out for 8-9 hours with no crash.

Cons: This protocol is incredibly extreme and unfortunately resulted in unhealthy weight loss from bmi 18 to 15 for me. Very hard to stick to and not at all pleasant. I dont think those beyond moderate level would have the energy to digest or prepare this amount of food. Need to ease into and out of diet.

-Low-dose Abilify from late Jan onwards(I was at 0.75mg daily for ~2 months)

Pros: This helped get me from 75% to around 90%. I could do 11-12 hour days with a little struggle, absolutely needing a 1.5 hour lie down in the afternoon to continue. Very easy to take.

Cons: I experienced a lot of very negative mood swings and menstrual irregularities, especially at a 1.0mg dose which I had to stop.

-Getting my first cold in 7 years. In late March my body was now functioning normally enough to allow me to get sick. I developed a rather nasty cold. From the 1st day of symptom onset I noticed complete dissipation of my cfs symptoms, despite feeling very flu-ish. Exercise no longer made me feel drugged. I could continue going all day with no need for rest.

I am now 20 and have been in full remission for over 6 months. I did have to get over a lot of deconditioning post-cfs, and deal with problems I believe to be linked to impacts of cfs (skin disorders, hormone imbalances, possible endometriosis, etc.) In order to keep my health up I eat a low-inflammation, whole food plant based diet with no meat, oil, or processed food other than the occasional treat meal. I live a normal life with no restraints placed by my body. I can exercise again. It is both incredibly surreal and incredibly normal.


Best wishes to everyone in battling this disease.

It's great to hear someone so young getting they're health back. As someone who has tried "everything" already, I am still keen to try anything and have some sort of life. However, as someone who suffered debilitating IBS shortly after starting a vegan protocol, I'm a little dubious about this protocol. I guess I just followed enough doctors, paid enough money, heard the success stories and rave reviews and been disappointed only 100% of time. My digestion is still pretty unforgiving. I get horribly bloated after eating veggies and have gastroparesis. I imagine shoving a load of raw kale down there will have undesirable effects

 

[nolongerdiseased]

@Zoe Louise Thank you for the kind words. This is a really extreme diet which is definitely not suited to everyone with ME, especially those with severe digestive issues or gastroparesis. With anything, including off-label medication that has been studied specifically on ME patients such as Abilify, it is really important to weigh it up on a personal level. Even if some people have a really great experience on a certain treatment, there are others that have no benefit, or find that it actually worsens their symptoms.
I was in a really fortunate position in that I had to exercise much less caution than others in what could potentially make me worse. Individual crashes did not lower my baseline, I did not experience any digestive issues, my ME was mild, and not much made my illness worse. I think over 7 years GET, getting vaccines, and stress/repeat over-exertion in my last year of highschool were the only thing that resulted in flares/ my illness worsening.
I really would not even consider a diet like this with something like gastroparesis and severe forms of ME. Doing something like this is simply too much of a risk to such fragile health, especially when we lack concrete treatments and prescription medications if worsening should happen. I know some with severe digestive issues such as Chron's have found benefit in the protocol when working directly with Dr. Goldner, but that is a really extreme cost, and IMO not comparible to the circumstances a lot of those with severe ME face.

 

[Zoe Louise]

This is a great reminder for anyone seeking treatment for M.E to exercise extreme caution when trying something new. I really do wish I could go back to experiencing mild M.E. My M.E has shifted to moderate, but it seems like a world away from where I was before when I could still walk some distance, do moderate exercise and could take part in social activities, which I can't now. I can appreciate the desperation that people feel and that I feel myself. I would literally try anything, but sadly that way of thinking has only caused me to get worse. I may still consider this course of treatment because the protocol I am following at the moment does not seem to be working. But rest assured I have learnt my lesson and I will make sure I do thorough research first and definitely won't be starting it straight away... maybe in a few months time and then it may only be a few sips of smoothie to start off with. Fruit and kale isn't in season right now in England anyway!

 

[Arius]

Thanks for sharing what worked for you! Congratulations on getting better.

It is inspiring that you did it beyond that 5 year mark. I've been sick for 8 years now with no improvement and in fact some decline in the past 7 years. It helps to know that people who have been sick as long as (some longer than) me can get better.

I'm wary of plant-based diets, having gotten sick while vegan, possibly in part due to a lack of secretory IgA caused by a protein deficiency. Humans are supposed to eat meat and it's simply not possible to get everything we need from plants. But I would consider it on a short-term basis.

 

[Marylib]

Congratulations! That's awesome. I hope you continue in remission for the rest of your days.

 

[nolongerdiseased]

Thanks for sharing what worked for you! Congratulations on getting better.

It is inspiring that you did it beyond that 5 year mark. I've been sick for 8 years now with no improvement and in fact some decline in the past 7 years. It helps to know that people who have been sick as long as (some longer than) me can get better.

I'm wary of plant-based diets, having gotten sick while vegan, possibly in part due to a lack of secretory IgA caused by a protein deficiency. Humans are supposed to eat meat and it's simply not possible to get everything we need from plants. But I would consider it on a short-term basis.

I think it's completely valid to be weary of strict diets, especially considering your circumstances. Supplementing B-12 (and probably iron too) on a diet which eliminates animal products is a must. B-12 is essential and with modern food hygiene the only way to get it is through animal products or a tablet. It is also personal - I was never all that fond of animal products and in my current remission I find eating meat (even when cooked without oil) just makes me feel a bit gross and I'd rather avoid it. Others would probably not be able to sustain a diet without animal products for other health issues. The protocol that I followed is definitely only made for short-term use. It simply doesn't provide enough protein or calories for anyone to switch to it long term, and is meant to be done in 6-8 week time frames. I probably went a bit overboard in following it for an extra month and my weight did suffer because of it.

I really do have added hope in things like Ron Davis' metabolic trap hypothesis due to my own recovery. Although I was already much improved by the time I caught that wonderful cold, I did definitely experience that ME symptoms can be switched off pretty much overnight. I do hope this is some kind of state- whether thats neurological, metabolic, immunological, or a combination of all of them, which can be switched off in some people if medicine allows.

 

[marcjf]

I think it's completely valid to be weary of strict diets, especially considering your circumstances. Supplementing B-12 (and probably iron too) on a diet which eliminates animal products is a must. B-12 is essential and with modern food hygiene the only way to get it is through animal products or a tablet. It is also personal - I was never all that fond of animal products and in my current remission I find eating meat (even when cooked without oil) just makes me feel a bit gross and I'd rather avoid it. Others would probably not be able to sustain a diet without animal products for other health issues. The protocol that I followed is definitely only made for short-term use. It simply doesn't provide enough protein or calories for anyone to switch to it long term, and is meant to be done in 6-8 week time frames. I probably went a bit overboard in following it for an extra month and my weight did suffer because of it.

I really do have added hope in things like Ron Davis' metabolic trap hypothesis due to my own recovery. Although I was already much improved by the time I caught that wonderful cold, I did definitely experience that ME symptoms can be switched off pretty much overnight. I do hope this is some kind of state- whether thats neurological, metabolic, immunological, or a combination of all of them, which can be switched off in some people if medicine allows.

Did you have any symptoms of orthostatic intolerance/blood pooling? Has the diet helped with that?
I actually started on the diet a couple of days ago. One issue that I noticed right away is that it aggravated constipation symptoms, even though I am drinking loads of water, even more than 2L. I wonder if I am gretting dehydrated anyways, as the diet seems poor in salt. Were you taking electrolytes as well?

 

[nolongerdiseased]

@marcjf I did have symptoms of othostatic intolerance which were primarily brought on by exertion, but not apparent 24/7. It would be noticeable if I tried to get up while needing rest, and at its worst during crashes. The diet in part did help with those symptoms as it helped extend my energy envelope.

Please do add salt! My bad for not elaborating on that in the original post. Salt is important, especially to those with blood volume and dysautonomia issues, and you can add as much as you like. I would either include salt in avocado dips or just mix 1/2 to 1 teaspoon in with some water and down that to make sure I was getting it in.

Its definitely not easy on digestion, and digestive issues are more apparent the less time is spent easing in. Chia and flax are especially high in fiber and cold-pressed flax seed oil is a little easier on the digestive system with regards to constipation. 3 tablespoons is equivalent to 1/2 cup ground seed. If you feel you need to slow down a little and give your body a bit more time to adjust before going all in thats fine.

 

[marcjf]

@marcjf I did have symptoms of othostatic intolerance which were primarily brought on by exertion, but not apparent 24/7. It would be noticeable if I tried to get up while needing rest, and at its worst during crashes. The diet in part did help with those symptoms as it helped extend my energy envelope.

Please do add salt! My bad for not elaborating on that in the original post. Salt is important, especially to those with blood volume and dysautonomia issues, and you can add as much as you like. I would either include salt in avocado dips or just mix 1/2 to 1 teaspoon in with some water and down that to make sure I was getting it in.

Its definitely not easy on digestion, and digestive issues are more apparent the less time is spent easing in. Chia and flax are especially high in fiber and cold-pressed flax seed oil is a little easier on the digestive system with regards to constipation. 3 tablespoons is equivalent to 1/2 cup ground seed. If you feel you need to slow down a little and give your body a bit more time to adjust before going all in thats fine.

Thank you very much for the response. I can say that I was dealing with some constipation before, probably due to worsening dysautonomia, so it is not all on the diet. I will try to ease in.
If I can beat the constipation, I am pretty sure I can do the diet just fine.

 

[Ali_Mardiyev]

Hi all, just wanting to share my success story and how I got complete remission through an intense autoimmune protocol, low-dose abilify, and getting a cold.
Full disclosure the doctor who's autoimmune protocol I followed does absolutely make money from books and very expensive consults, but I gained all information through free online resources + facebook groups. I'll try keep this brief. Happy to answer any questions. Hope this is the right place to post...

I developed ME/CFS when I was 12 after a series of repeat viral infections. This took me from doing 16 hours of competitive gymnastics a week + school to being completely bedridden. I was unable to stand, walk, shower, or go to school. Over 3 years, I slowly improved to a plateu of "mild" function. I was at around 50% of normal function, with a 6 hour energy envelope per day. In November 2021, I decided to try some specific treatments and by March 2022 I reached full remission. I am 100% sure this was not spontaneous remission falsely accredited to something new. I've since had covid and had no relapse.

My symptoms: Post-exertional malaise (I would experience a crash after every single day at school) complete exercise intolerance, cravings for salt, sensitivity to smells, sore throat, nasal congestion, muscle pain, joint pain, nerve pain, headaches, immense brain fog, inability to speak, breathing difficulties, heart palpitations, dysautonomia, paralysis in severe crashes, bad reactions to vaccines, inability to get colds/flus.

What didn't help: GET (shocker!), a naturopath, supplements (vitamin d, iron, b-12, b1, co-q10, omega 3), general diet improvements (less junk, more veg, adding chia pudding + green smoothies to normal diet), pacing (helped me crash less by staying within energy envelope, but did not increase energy envelope at all)

What did help:
-Strictly following the Golder autoimmune protocol for 3 months, from November stopping start of February. It consists solely of 3L of water, 650g of raw cruciferous veg/leafy greens, 1/2 cup of chia or flax seed a day + iodine and b-12 supplement. All raw, absolutely no foods other than raw fruit/veg/chia. This is supposed to be done for 6-8 weeks, but I went longer as symptoms were still improving.

Pros: It was the first thing to work in 7 years for me and I saw results within 2 weeks. It took me from around 50% function to 75% function. By the start of January my PEM was gone, I could stay out for 8-9 hours with no crash.

Cons: This protocol is incredibly extreme and unfortunately resulted in unhealthy weight loss from bmi 18 to 15 for me. Very hard to stick to and not at all pleasant. I dont think those beyond moderate level would have the energy to digest or prepare this amount of food. Need to ease into and out of diet.

-Low-dose Abilify from late Jan onwards(I was at 0.75mg daily for ~2 months)

Pros: This helped get me from 75% to around 90%. I could do 11-12 hour days with a little struggle, absolutely needing a 1.5 hour lie down in the afternoon to continue. Very easy to take.

Cons: I experienced a lot of very negative mood swings and menstrual irregularities, especially at a 1.0mg dose which I had to stop.

-Getting my first cold in 7 years. In late March my body was now functioning normally enough to allow me to get sick. I developed a rather nasty cold. From the 1st day of symptom onset I noticed complete dissipation of my cfs symptoms, despite feeling very flu-ish. Exercise no longer made me feel drugged. I could continue going all day with no need for rest.

I am now 20 and have been in full remission for over 6 months. I did have to get over a lot of deconditioning post-cfs, and deal with problems I believe to be linked to impacts of cfs (skin disorders, hormone imbalances, possible endometriosis, etc.) In order to keep my health up I eat a low-inflammation, whole food plant based diet with no meat, oil, or processed food other than the occasional treat meal. I live a normal life with no restraints placed by my body. I can exercise again. It is both incredibly surreal and incredibly normal.


Best wishes to everyone in battling this disease.

Did you also have trouble sleeping?

 

[Tammy]

he protocol that I followed is definitely only made for short-term use. It simply doesn't provide enough protein or calories for anyone to switch to it long term, and is meant to be done in 6-8 week time frames.

So how is your diet different when you are not in that 6-8 week time frame?

Congratulations by the way. Eating clean (how I phrase it) is not easy. I eat mostly just veggies, fruits, and sometimes some meat. Just a few nuts here and there. No calorie restrictions. I eat a lot of steamed potatoes. It is not an easy diet for sure and I find myself in the kitchen far too often than I would like, preparing healthy meals. I don't eat 100% raw though as you do and I am not as disciplined as you. I need more willpower in the eating right category because for me it makes a really big difference. If I start cheating on my diet too much I will get payback from it BIG TIME. There is no doubt about it and I can't deny it anymore. Eating right makes a difference for me. Eggs, dairy, gluten are a big NO in my diet. I am on what I refer to as an anti-viral diet. It is my personal opinion that viruses are the root cause of CFS and certain foods will provide fuel for a virus. This of course is controversial info, but it makes sense to me.

 

[Ali_Mardiyev]

Hi all, just wanting to share my success story and how I got complete remission through an intense autoimmune protocol, low-dose abilify, and getting a cold.
Full disclosure the doctor who's autoimmune protocol I followed does absolutely make money from books and very expensive consults, but I gained all information through free online resources + facebook groups. I'll try keep this brief. Happy to answer any questions. Hope this is the right place to post...

I developed ME/CFS when I was 12 after a series of repeat viral infections. This took me from doing 16 hours of competitive gymnastics a week + school to being completely bedridden. I was unable to stand, walk, shower, or go to school. Over 3 years, I slowly improved to a plateu of "mild" function. I was at around 50% of normal function, with a 6 hour energy envelope per day. In November 2021, I decided to try some specific treatments and by March 2022 I reached full remission. I am 100% sure this was not spontaneous remission falsely accredited to something new. I've since had covid and had no relapse.

My symptoms: Post-exertional malaise (I would experience a crash after every single day at school) complete exercise intolerance, cravings for salt, sensitivity to smells, sore throat, nasal congestion, muscle pain, joint pain, nerve pain, headaches, immense brain fog, inability to speak, breathing difficulties, heart palpitations, dysautonomia, paralysis in severe crashes, bad reactions to vaccines, inability to get colds/flus.

What didn't help: GET (shocker!), a naturopath, supplements (vitamin d, iron, b-12, b1, co-q10, omega 3), general diet improvements (less junk, more veg, adding chia pudding + green smoothies to normal diet), pacing (helped me crash less by staying within energy envelope, but did not increase energy envelope at all)

What did help:
-Strictly following the Golder autoimmune protocol for 3 months, from November stopping start of February. It consists solely of 3L of water, 650g of raw cruciferous veg/leafy greens, 1/2 cup of chia or flax seed a day + iodine and b-12 supplement. All raw, absolutely no foods other than raw fruit/veg/chia. This is supposed to be done for 6-8 weeks, but I went longer as symptoms were still improving.

Pros: It was the first thing to work in 7 years for me and I saw results within 2 weeks. It took me from around 50% function to 75% function. By the start of January my PEM was gone, I could stay out for 8-9 hours with no crash.

Cons: This protocol is incredibly extreme and unfortunately resulted in unhealthy weight loss from bmi 18 to 15 for me. Very hard to stick to and not at all pleasant. I dont think those beyond moderate level would have the energy to digest or prepare this amount of food. Need to ease into and out of diet.

-Low-dose Abilify from late Jan onwards(I was at 0.75mg daily for ~2 months)

Pros: This helped get me from 75% to around 90%. I could do 11-12 hour days with a little struggle, absolutely needing a 1.5 hour lie down in the afternoon to continue. Very easy to take.

Cons: I experienced a lot of very negative mood swings and menstrual irregularities, especially at a 1.0mg dose which I had to stop.

-Getting my first cold in 7 years. In late March my body was now functioning normally enough to allow me to get sick. I developed a rather nasty cold. From the 1st day of symptom onset I noticed complete dissipation of my cfs symptoms, despite feeling very flu-ish. Exercise no longer made me feel drugged. I could continue going all day with no need for rest.

I am now 20 and have been in full remission for over 6 months. I did have to get over a lot of deconditioning post-cfs, and deal with problems I believe to be linked to impacts of cfs (skin disorders, hormone imbalances, possible endometriosis, etc.) In order to keep my health up I eat a low-inflammation, whole food plant based diet with no meat, oil, or processed food other than the occasional treat meal. I live a normal life with no restraints placed by my body. I can exercise again. It is both incredibly surreal and incredibly normal.


Best wishes to everyone in battling this disease.

I'm a 20 year old male. I got ME/CFS 4 months ago, and am slowly declining. I want to try a protocol similar to you. Is there anyway I can contact you for more information?

 

[nolongerdiseased]

@Tammy Off the protocol I eat a cooked whole food plant based diet with no animal products, oil, refined sugar, or refined foods. I only ate fully raw while I was on that specific protocol, and now I can eat cooked food thank god! The prep is definitely annoying as I can't just have a packaged meal or snack if I'm in a rush or feeling lazy, and I always have to take food with me when I go out. The way I have to eat to maintain health is definitely a limitation, but its really nothing compared to the limitations of ME. The major thing I struggle with is probably just convenience rather than cravings. Like you, on the occasions that I do have a "cheat" bought meal or processed food it just makes me feel gross afterwards. The things we put into our body day in and day out definitely impact us. There was a study recently that linked the rise of autoimmune diseases to the modern western diet, which IMO makes sense as the way we eat now is full of inflammatory and processed foods while lacking in nutrition. Not that food is all there is to it, but the more stress you put your body under the more likely it is to crack.

@Ali_Mardiyev Not particularly. I had occasional bouts of insomnia during bad crashes when I had that "tired but wired" feeling, but other than that I slept just fine. I wouldn't ever wake up feeling particularly refreshed though, even at a mild level. Also feel free to send me a message on here! I'm happy to answer any questions.

 

[nolongerdiseased]

Just posting an update that it has been 12 months since my cold/complete remission! I have had no symptom re-emergence in that time and am able to exercise for multiple hours a week with no ill-effects.

 

[Rufous McKinney]

the modern western diet,

most of our food is covered in chemical pesticides, fertiizers, pollution that lands on the plants from the air, and the genetic modifications.

 

[TinaT]

idiopathic chronic fatigue

I'm new to this situation, still trying to figure out whether I've just had some bad luck or if I'm really never going to recover

But what is idiopathic chronic fatigue? Sounds like what I would prefer to have!

 

[godlovesatrier]

Wouldn't all these diets upregulate autophagy and lower inflamaion to such an extent that the body had a chance to fight off any pathogens present? Which may not mean the person can stop the intervention later but if the diet is tolerated they can stay that way long term.