I don't know what oxalates are but I eat a very restricted diet because I have celiac disease and other digestive disorders. The only thing that got fixed because of my diet is the awful symptoms I had because of celiac disease and the other digestive disorders. I still have some symptoms but the worst ones are managed by my diet.
Try an elimination diet for awhile and see if it helps.
I've made some improvements in the MECFS because of bed rest and pacing. I'm also taking Vitamin D pills regularly (50,000 units weekly because it's that low) and new medicine for a connective tissue disorder unspecified that I was diagnosed with a few months ago. Between all those things I've made improvements over the last few years.
Anyway, I always think that with MECFS everything is basically a science experiment because there's no real treatment and cure. Different supplements work for some of us and not others. Try it and see what happens. Then let us know how it went.
What symptoms did you fix? I'm going down a similar path of diet elimination at the moment. Any other advice on what works for you? Diet, supplements etc?
I believe the link between ADHD and CFS is from the BH4 pathway. As far as I understand it, it’s a metabolic process that happens in our brains that involves neuro transmitters. It’s a cofactor that’s necessary to make enzymes and serotonin and dopamine, among other things.
Apparently this process gets bogged down if you have the MTHFR gene mutation, so supplementing with methyl folate can help. Ironically, I can’t remember if I’ve tried that or not, lol.
I've tried methyl folate. It did help. It's not like a cure, but I could tell the difference.
ETA: I took it with b12, too. So, that could also impact the efficacy.
Ahh really, that's super interesting! Thanks for that. Do you have a link for that study?
I do have MTHFR gene mutation and I also have methyl folate here that I haven't tried yet. Maybe I should get straight on it. Also I'm with ya on the memory 😂
I don’t think there’s one specific study, but you can look up bh4 + ADHD, and bh4 + CFS, and see the overlap.
I think I came across it because of Kimberly Kitzerow on IG.
It is different in this context. It's specifically 5-MTHF L-Methylfolate. That isn't usually included in a B-complex vitamin. But you do need to make sure you're getting adequate B12 if you take it. Most people don't get enough B12.
There are a lot of different brands, but just choose a reputable one. NOW is a brand I trust. You can buy it on Amazon, at vitamin stores, from vitamin company websites, even at some grocery stores if they have an extensive vitamins selection. However, it's best to consult your doctor about how much you should take. If possible, like if you have a doctor who even knows about this stuff (mine doesn't, so I know some of us just have to decide on our own). Start on the lower side, like not more than 1000mg a day, and then go up as needed. If your doctor says that's safe for you. Usually we need much more than that, but it's always good to start lower.
Omg I totally messed up in my comment and I wanted to clarify in another comment so you definitely see it. It's not 1000mg, but mcg! Micrograms, not milligrams!!!! Sorry about that. I'm so used to typing mg for other things.
And the brand I use is actually Nutricost, not NOW. It just looks a lot like my NOW supplement bottles, so I forgot it was a different brand.
Hah no problem and thank you. What health problems did taking this particular b9 and b12 help you with?
Are there any b vitamins that give you negative effects?
I haven't been taking it for long so it's a bit early to say much, but so far it definitely seems to help me with my general energy/capability level when it comes to my ME/CFS, likely because poor cell methylation is one major contributor to my fatigue. My overall pain level is lower, too, and I recover from exhaustion/strain/injuries and PEM more quickly. It isn't to a degree that it's anywhere near curative, but it's better than without it. As I keep increasing my dose, maybe I'll see more benefits!
I haven't taken all forms of vitamin B as supplements, just B12 and methylfolate. I never took a B complex or anything. So I haven't had any negative side effects from B vitamins but that may just be because I didn't take them in supplement form. Or at least I don't remember ever taking any other B vitamins, so if I ever did it wasn't something that stuck.
Thank you, I've got the b9 version you mentioned with 500% RDA tablets that I can split and test before increasing the dose if needed.
I've also got some b12 drops where 1 drop is around 15,000% RDA which even if it isn't all used by the body it still seems high. I specifically picked the better versions of b12 as well.
What strength and types of b12 are you using please? I know high doses are given but I'm apprehensive to use such a high dose. I might water it down and trial it that way first.
What are the microgram amounts of the L-Methylfolate pills? The recommended dosages for that are in mcgs or mgs, not in RDA, so I don't know it in RDA terms.
I take Jarrow Formulas Methyl-B12 1000mcg. It's not a very high dose. I don't feel qualified to give recommendations about dosage higher than that. I've been taking this exact B12 supplement for 10+ years.
Ideally this process of taking 5-MTHF L-Methylfolate would be monitored by a doctor, but none of my doctors know anything about this and don't want to be the one to monitor it lol. So I'm navigating it myself, although I'm not going to go beyond 7mg without getting blood work done and talking to a doctor. Some people go up to 15mg, but I wouldn't do that without any medical supervision. If you can have a doctor monitoring the process, that's definitely what's recommended. Especially if you might have pernicious anemia, because taking a lot of L-Methylfolate can mask that. Have you had blood work done recently to test for levels of things like B12 or folate?
I have 1000mcg of the 5-MTHF L-Methylfolate b9. It says 1000mcg is 500% NRV / RDA.
I am having to monitor it myself too. I should get some basic blood tests done in a month's time but not comprehensive. I have a restricted diet so I should be supplementing anyway.
My b12 drops are 13 drops = 3000mcg which is 200,000% but I can take one drop which would be 230mcg and over 15000% RDA/NRV. I could water them down to start with too.
When you say 7mg does that mean you take up to 7000mcg of the b12 a day??
ADHD and autism caused by mitochondrial dysfunction? Or do you mean CFS is? I've heard of the latter, not the former.
ADHD is lack of dopamine etc. So I think theories of that kind is an oversimplification of extremely complex evolutionary, biological and physiological processes. I personally don't believe that ADHD is a "dysfunction" either, I believe it's a personality trait that was pretty effective for thousands of years, before humans started farming and society got more and more streamlined.
However, when it comes to ADHD+CFS, they definitely make each other worse. ADHDers have less than stellar executive function, and it costs more energy to do cognitive tasks, like planning, organize etc. After getting CFS, these processes require even more energy and I get cognitively very burned out. Also, my ADHD is highly hyperactive and wants to move constantly, but the CFS makes me exhausted in no time. So that's great.
One thing that has helped me is taking a high quality multivitamin. I don't know what I was lacking, but presumably iodine, magnesium and b vitamin. I was already taking iron and D3. You can only really assess these things by doing a time consuming food intake journal over time, in apps like Cronometer, that track micronutrients. In addition, conditions like Celiac's, like u/WildLoad2410 and I have, can cause malabsorption in the intestines leading to loss of nutrients even if eating enough.
There is no simple fix to CFS or ADHD, if there were, we'd know about it. That being said; maintaining a healthy diet and lifestyle is very important, but don't go off social media influencers that cherry pick studies. Orthorexia is also a real thing. Just eat more like Europeans and less like Americans, lol.
Thanks for the detailed response I really appreciate that. I totally agree with you on the lack of dopamine being a cause. I came across this study which said people with ADHD have 'Significantly low cellular and mitochondrial respiration' got me thinking.
Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5121149/
Thank you for linking the study! I had a look at it and the sample size is 4 children (!) so whatever results they get here will really have very minor significant scientific statistical value. And whatever they find on a cellular level, how does that translate to a macro level? This study is from 2016, but the number of retracted studies has skyrocketed, with 2023 having a record number of something like 10.000 retracted studies. When it comes to science, a hypothesis has to be tested again and again and again, and after years you start getting numerous studies testing the same hypothesis, then you get meta studies and overview studies and you can start to see a trend. That's why real scientific results (consensus?) takes forever to reach, decades. So far it looks like the results are inconclusive for the specific hypothesis presented in that study.
There's a ton of BS science being produced every year too, because of publishing requirements etc. It's a hard field to navigate. I used to Google like crazy a few years ago and read everything I could find, but in the end I couldn't do it anymore.
What I do now is make sure all my basic needs are covered: nutrition (the vitamins for example ), sleep (had to start ashwaghanda for that one), physical activity (now this one is hard with CFS! But I've found some tools), mental health++. The rest is just a waiting game. I use a Garmin watch and a temp drop device to keep an eye on some basics, and am now waiting to get checked for sleep apnea and asthma. Women can get some info too about their body's state via the menstrual cycles, that men can't. My menstruation drastically changed after getting sick with ME.
Ahhh thank you so much - learning that the efficacy of a theory in this way is very helpful! I did not know! Very interesting. Probably the smartest thing I've read on Reddit. People throw studies around all the time (including me 😅) but this makes lots of sense.
Yes, I'm with you on meeting the basics. It's hard to do. Sounds like we are in the same boat, although I'm male! Wishing you the best with it all. It's such a tough path we've been given but I'm hopeful that some kind of cure/relief will come in our lifetime. In the UK it's the highest number of people between 30-40 there's ever been off work with sickness. Something needs to change surely 😔
That's pretty crazy that your menstruation cycle changed so much. I wonder what the function is there? Do you have any theories on that?
I've been able to significantly increase my baseline with nicotine. I have gone from severe to moderate. I don't know if you've tried it? It's been a total game changer for me. There is a nicotine research facebook group of you want to join? (Bonus too is that it helps my ADHD a ton!!)
Here's a link explaining some bits: https://www.healthrising.org/blog/2023/12/07/nicotine-patch-long-covid-chronic-fatigue-fibromyalgia/
Nicotine?? Whaaat. I have never heard of it! But I think I can buy those patches in the pharmacy, so maybe I should try?? Thanks for the suggestion :D And I'm so so happy to hear it's helped you that much. It's just insane how many different things help different people. For me, Valtrex helped immensely on the "flu" symptoms, and electrolytes helped me exercise and deal with heat and swimming. I think CFS is such a bullshit "sack" diagnosis, like "IBS", and
I think many are misdiagnosed.
I have a friend with long covid, and she and I have about 95% overlap in symptoms, despite totally different causes. I'll tip her about the nicotine thing :D
I was bedbound every other day in dec-jan-feb until I started supplementing with iodine, and then suddenly I was able to even go to the gym (and do almost nothing, but hey, I got there!). So women's bodies have more internal organs and a complex endocrine system, with fluctuating hormones each month. I don't really have a specific theory on anything, but for example I got bad PMS after getting ME, but it's improved a lot after starting iodine and magnesium and rhodiola.
I had dysmenorrhea right before I got sick, was underfed and overtrained and hardly bled at all. I thought it was suuuper convenient, but I didn't understand that it was my body's way of telling me it was running out of every resource possible, and was soon no longer able to support a pregnancy. I have a personal, completely non-backed up theory that these fatigue conditions happen more often in women because they're child bearers , and evolution will turn off pretty much everything else before it turns off a specie's ability to procreate.
Is the high number of people off with sickness in the UK now related to covid, or the covid vaccines? Or do they not know what's causing it? I'm also really hoping we will get a solution, what with AI and quantum computing etc. So far my condition has been at a standstill for over 5 years (minus the improvement from vitamins, electrolytes, Valtrex). I feel like my energy wallet generally has the same amount available, but it can vary a little on a given day depending on things I don't know what are..mbut that must be something?? Sleep quality? Asthma? Right now I'm totally wiped out from being way too ADHD physically. Talk about having the gas and brake pedals floored at the same time and getting a burnout lol.
If you look at all the chemical processes that take place in mitochondria when they create ATP you can see there are a ton of steps with varying enzymes and reactants that can be disrupted. So I don't think "mitochondrial dysfunction" in and of itself says much and if different illnesses have that in common, they can still have different genetic mutations or deficiencies etc causing it.
I don't know what oxalates are but I eat a very restricted diet because I have celiac disease and other digestive disorders. The only thing that got fixed because of my diet is the awful symptoms I had because of celiac disease and the other digestive disorders. I still have some symptoms but the worst ones are managed by my diet. Try an elimination diet for awhile and see if it helps. I've made some improvements in the MECFS because of bed rest and pacing. I'm also taking Vitamin D pills regularly (50,000 units weekly because it's that low) and new medicine for a connective tissue disorder unspecified that I was diagnosed with a few months ago. Between all those things I've made improvements over the last few years. Anyway, I always think that with MECFS everything is basically a science experiment because there's no real treatment and cure. Different supplements work for some of us and not others. Try it and see what happens. Then let us know how it went.
What symptoms did you fix? I'm going down a similar path of diet elimination at the moment. Any other advice on what works for you? Diet, supplements etc?
I believe the link between ADHD and CFS is from the BH4 pathway. As far as I understand it, it’s a metabolic process that happens in our brains that involves neuro transmitters. It’s a cofactor that’s necessary to make enzymes and serotonin and dopamine, among other things. Apparently this process gets bogged down if you have the MTHFR gene mutation, so supplementing with methyl folate can help. Ironically, I can’t remember if I’ve tried that or not, lol.
I've tried methyl folate. It did help. It's not like a cure, but I could tell the difference. ETA: I took it with b12, too. So, that could also impact the efficacy.
Ahh really, that's super interesting! Thanks for that. Do you have a link for that study? I do have MTHFR gene mutation and I also have methyl folate here that I haven't tried yet. Maybe I should get straight on it. Also I'm with ya on the memory 😂
I don’t think there’s one specific study, but you can look up bh4 + ADHD, and bh4 + CFS, and see the overlap. I think I came across it because of Kimberly Kitzerow on IG.
Is methyl folate different to regular b vitamins ?
It is different in this context. It's specifically 5-MTHF L-Methylfolate. That isn't usually included in a B-complex vitamin. But you do need to make sure you're getting adequate B12 if you take it. Most people don't get enough B12.
Do you have any brands for supplements you can recommend?
Where can I buy this please? What brand do you recommend?
There are a lot of different brands, but just choose a reputable one. NOW is a brand I trust. You can buy it on Amazon, at vitamin stores, from vitamin company websites, even at some grocery stores if they have an extensive vitamins selection. However, it's best to consult your doctor about how much you should take. If possible, like if you have a doctor who even knows about this stuff (mine doesn't, so I know some of us just have to decide on our own). Start on the lower side, like not more than 1000mg a day, and then go up as needed. If your doctor says that's safe for you. Usually we need much more than that, but it's always good to start lower.
Omg I totally messed up in my comment and I wanted to clarify in another comment so you definitely see it. It's not 1000mg, but mcg! Micrograms, not milligrams!!!! Sorry about that. I'm so used to typing mg for other things. And the brand I use is actually Nutricost, not NOW. It just looks a lot like my NOW supplement bottles, so I forgot it was a different brand.
Hah no problem and thank you. What health problems did taking this particular b9 and b12 help you with? Are there any b vitamins that give you negative effects?
I haven't been taking it for long so it's a bit early to say much, but so far it definitely seems to help me with my general energy/capability level when it comes to my ME/CFS, likely because poor cell methylation is one major contributor to my fatigue. My overall pain level is lower, too, and I recover from exhaustion/strain/injuries and PEM more quickly. It isn't to a degree that it's anywhere near curative, but it's better than without it. As I keep increasing my dose, maybe I'll see more benefits! I haven't taken all forms of vitamin B as supplements, just B12 and methylfolate. I never took a B complex or anything. So I haven't had any negative side effects from B vitamins but that may just be because I didn't take them in supplement form. Or at least I don't remember ever taking any other B vitamins, so if I ever did it wasn't something that stuck.
Thank you, I've got the b9 version you mentioned with 500% RDA tablets that I can split and test before increasing the dose if needed. I've also got some b12 drops where 1 drop is around 15,000% RDA which even if it isn't all used by the body it still seems high. I specifically picked the better versions of b12 as well. What strength and types of b12 are you using please? I know high doses are given but I'm apprehensive to use such a high dose. I might water it down and trial it that way first.
What are the microgram amounts of the L-Methylfolate pills? The recommended dosages for that are in mcgs or mgs, not in RDA, so I don't know it in RDA terms. I take Jarrow Formulas Methyl-B12 1000mcg. It's not a very high dose. I don't feel qualified to give recommendations about dosage higher than that. I've been taking this exact B12 supplement for 10+ years. Ideally this process of taking 5-MTHF L-Methylfolate would be monitored by a doctor, but none of my doctors know anything about this and don't want to be the one to monitor it lol. So I'm navigating it myself, although I'm not going to go beyond 7mg without getting blood work done and talking to a doctor. Some people go up to 15mg, but I wouldn't do that without any medical supervision. If you can have a doctor monitoring the process, that's definitely what's recommended. Especially if you might have pernicious anemia, because taking a lot of L-Methylfolate can mask that. Have you had blood work done recently to test for levels of things like B12 or folate?
I have 1000mcg of the 5-MTHF L-Methylfolate b9. It says 1000mcg is 500% NRV / RDA. I am having to monitor it myself too. I should get some basic blood tests done in a month's time but not comprehensive. I have a restricted diet so I should be supplementing anyway. My b12 drops are 13 drops = 3000mcg which is 200,000% but I can take one drop which would be 230mcg and over 15000% RDA/NRV. I could water them down to start with too. When you say 7mg does that mean you take up to 7000mcg of the b12 a day??
I can’t speak on that. It’s really complicated!
ADHD and autism caused by mitochondrial dysfunction? Or do you mean CFS is? I've heard of the latter, not the former. ADHD is lack of dopamine etc. So I think theories of that kind is an oversimplification of extremely complex evolutionary, biological and physiological processes. I personally don't believe that ADHD is a "dysfunction" either, I believe it's a personality trait that was pretty effective for thousands of years, before humans started farming and society got more and more streamlined. However, when it comes to ADHD+CFS, they definitely make each other worse. ADHDers have less than stellar executive function, and it costs more energy to do cognitive tasks, like planning, organize etc. After getting CFS, these processes require even more energy and I get cognitively very burned out. Also, my ADHD is highly hyperactive and wants to move constantly, but the CFS makes me exhausted in no time. So that's great. One thing that has helped me is taking a high quality multivitamin. I don't know what I was lacking, but presumably iodine, magnesium and b vitamin. I was already taking iron and D3. You can only really assess these things by doing a time consuming food intake journal over time, in apps like Cronometer, that track micronutrients. In addition, conditions like Celiac's, like u/WildLoad2410 and I have, can cause malabsorption in the intestines leading to loss of nutrients even if eating enough. There is no simple fix to CFS or ADHD, if there were, we'd know about it. That being said; maintaining a healthy diet and lifestyle is very important, but don't go off social media influencers that cherry pick studies. Orthorexia is also a real thing. Just eat more like Europeans and less like Americans, lol.
Will try out cronometer thanks
:)
Thanks for the detailed response I really appreciate that. I totally agree with you on the lack of dopamine being a cause. I came across this study which said people with ADHD have 'Significantly low cellular and mitochondrial respiration' got me thinking. Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5121149/
Thank you for linking the study! I had a look at it and the sample size is 4 children (!) so whatever results they get here will really have very minor significant scientific statistical value. And whatever they find on a cellular level, how does that translate to a macro level? This study is from 2016, but the number of retracted studies has skyrocketed, with 2023 having a record number of something like 10.000 retracted studies. When it comes to science, a hypothesis has to be tested again and again and again, and after years you start getting numerous studies testing the same hypothesis, then you get meta studies and overview studies and you can start to see a trend. That's why real scientific results (consensus?) takes forever to reach, decades. So far it looks like the results are inconclusive for the specific hypothesis presented in that study. There's a ton of BS science being produced every year too, because of publishing requirements etc. It's a hard field to navigate. I used to Google like crazy a few years ago and read everything I could find, but in the end I couldn't do it anymore. What I do now is make sure all my basic needs are covered: nutrition (the vitamins for example ), sleep (had to start ashwaghanda for that one), physical activity (now this one is hard with CFS! But I've found some tools), mental health++. The rest is just a waiting game. I use a Garmin watch and a temp drop device to keep an eye on some basics, and am now waiting to get checked for sleep apnea and asthma. Women can get some info too about their body's state via the menstrual cycles, that men can't. My menstruation drastically changed after getting sick with ME.
Ahhh thank you so much - learning that the efficacy of a theory in this way is very helpful! I did not know! Very interesting. Probably the smartest thing I've read on Reddit. People throw studies around all the time (including me 😅) but this makes lots of sense. Yes, I'm with you on meeting the basics. It's hard to do. Sounds like we are in the same boat, although I'm male! Wishing you the best with it all. It's such a tough path we've been given but I'm hopeful that some kind of cure/relief will come in our lifetime. In the UK it's the highest number of people between 30-40 there's ever been off work with sickness. Something needs to change surely 😔 That's pretty crazy that your menstruation cycle changed so much. I wonder what the function is there? Do you have any theories on that? I've been able to significantly increase my baseline with nicotine. I have gone from severe to moderate. I don't know if you've tried it? It's been a total game changer for me. There is a nicotine research facebook group of you want to join? (Bonus too is that it helps my ADHD a ton!!) Here's a link explaining some bits: https://www.healthrising.org/blog/2023/12/07/nicotine-patch-long-covid-chronic-fatigue-fibromyalgia/
Nicotine?? Whaaat. I have never heard of it! But I think I can buy those patches in the pharmacy, so maybe I should try?? Thanks for the suggestion :D And I'm so so happy to hear it's helped you that much. It's just insane how many different things help different people. For me, Valtrex helped immensely on the "flu" symptoms, and electrolytes helped me exercise and deal with heat and swimming. I think CFS is such a bullshit "sack" diagnosis, like "IBS", and I think many are misdiagnosed. I have a friend with long covid, and she and I have about 95% overlap in symptoms, despite totally different causes. I'll tip her about the nicotine thing :D I was bedbound every other day in dec-jan-feb until I started supplementing with iodine, and then suddenly I was able to even go to the gym (and do almost nothing, but hey, I got there!). So women's bodies have more internal organs and a complex endocrine system, with fluctuating hormones each month. I don't really have a specific theory on anything, but for example I got bad PMS after getting ME, but it's improved a lot after starting iodine and magnesium and rhodiola. I had dysmenorrhea right before I got sick, was underfed and overtrained and hardly bled at all. I thought it was suuuper convenient, but I didn't understand that it was my body's way of telling me it was running out of every resource possible, and was soon no longer able to support a pregnancy. I have a personal, completely non-backed up theory that these fatigue conditions happen more often in women because they're child bearers , and evolution will turn off pretty much everything else before it turns off a specie's ability to procreate. Is the high number of people off with sickness in the UK now related to covid, or the covid vaccines? Or do they not know what's causing it? I'm also really hoping we will get a solution, what with AI and quantum computing etc. So far my condition has been at a standstill for over 5 years (minus the improvement from vitamins, electrolytes, Valtrex). I feel like my energy wallet generally has the same amount available, but it can vary a little on a given day depending on things I don't know what are..mbut that must be something?? Sleep quality? Asthma? Right now I'm totally wiped out from being way too ADHD physically. Talk about having the gas and brake pedals floored at the same time and getting a burnout lol.
If you look at all the chemical processes that take place in mitochondria when they create ATP you can see there are a ton of steps with varying enzymes and reactants that can be disrupted. So I don't think "mitochondrial dysfunction" in and of itself says much and if different illnesses have that in common, they can still have different genetic mutations or deficiencies etc causing it.
Yeah fair enough. Thanks for your input ☺️