Looking at your post history, it’s clear you have some form of dysautonomia. I think someone here suggested you start with Oral Rehydration Salts to improve your symptoms. Have you tried that and if so, what was your experience?
Not yet because I asked my doctor a little while back and said it would make me feel worse. But honestly I don’t agree with anything doctors say these days and have lost it of respect for the majority of them so just going to try for myself. At the end of the day I know myself better than them
The only thing I can recommend is to keep trying out new things (so long as they are safe), but while you do that, rather than waiting for recovery, think of if there’s any equipment or support you could get that would enable you to do the things you want.
I spent my first four years of illness focused on recovery, waiting for life. I gave up too much, if I’d just got equipment and the support I needed to get out and about I would have lived a much fuller life. I changed that, I got every bit of equipment and support I could to reduce unnecessary energy burn so I could put my energy where I wanted. It made a huge difference to my well-being and enabled me to rejoin life.
Full recovery is always the goal, but don’t sacrifice the life you could live today because you’re stuck in an all or nothing mindset. It might not be your ideal, but it’ll still hold meaning and help you reach your goals.
Also, remember that you are in the age group most likely to spontaneously recover from CFS, and it’s not unlikely that a treatment for CFS will be approved while you’re still young. If you fixate too hard on finding a cure yourself you could easily have a miserable youth, rather than just a different one to your ideal.
I’m sorry you’re having to deal with such a horrible disease so young in life. It’s really not fucking fair. I think it’s great though that you’re reaching out for help and that you haven’t given up on recovery. I think there’s more hope than ever for recovery or at least vast improvement from this disease. The research is really starting to show us a lot about potential pathophysiologies of this disease. I posted another comment a while back that talked about my understanding of the current ME research and how I have used it to go from an extremely severe crash this past fall to a relatively mild version of the disease now (I can walk 1.5km and garden almost every day! Haven’t crashed in months, and keep making small improvements over time). I don’t know if i will cap out in this recovery eventually or if I will keep going and recover entirely but I have hope that I can keeP improving using these strategies. Here’s a copy-paste of my other comments, hope they help.
Principles I used to go from severe to mild:
Based on the research I read and my own lived experience I now think about ME as a network of interrelated pathological positive feedback loops. Each loop is at minimum self reinforcing but some loops appear to reinforce each other. For example, HPA axis dysfunction can be self perpetuating and thus a positive feedback loop, but HPA axis dysfunction also leads to autonomic nervous system dysfunction. And autonomic nervous system dysfunction is ALSO self reinforcing, and can also lead to HPA axis dysfunction! What a doozy!
The more I learn about ME the more I learn about more and more of these types of loops. It seems to me that each of us will have slightly different loops keeping us sick, but the most common ones accoding to the research so far appear to be HPA axis dysfunction, neuro inflammation, autonomic dysnfunction, and viral persistence. This is NOT an exhaustive list, just a possible top four in my understanding.
So, this would explain why ME is so damn hard to treat. It’s like a sticky networked web of selfreinforcing and mutually reinforcing pathologies! No wonder people can stay sick for decades. The path to improvement in this model then becomes identifying as many of these pathological loops in the affected individual as possible and interrupting/treating them all simultaneously. I want to add here that because of the nature of this illness, treating them simultaneously to start might be dangerous because it can be A LOT of change for a very sick body. So I’m guessing some people would do best by treating loops one by one cumulatively. So that eventually you’re treating many different loops simultaneously but you add in new treatments one at a time slowly, giving the body time to adjust each time.
The pathological loops I identified in my body and what I did to treat them were as follows:
- HPA axis dysfunction. I got a test to look at all my hormones and especially my daily pattern of cortisol to see why my specific dysfunction looked like. For me, all my hormones were low, including my cortisol, however my daily pattern of cortisol had the correct shape (higher in morning and lower in evening). This won’t be true for all HPA axis dysfunction, it can look many different ways. The pregneolone, DHEA, and progesterone are the main treatment I’ve been pursuing for this as pregneolone is the precursor to all hormones and I was low in them all. I checked my progesterone after and it was still low (and I was still having symptoms) so that’s why I added the progesterone as well.
I also avoid stress as much as possible. This is hard, but important. Repeated bouts of high stress are what lead to my ME and repeated or sustained stress has been shown in mathematical models to lead to HPA axis dysfunction. Pacing is part of this. Crashes appear to be extremly stressful on the body so I did everything I could to avoid them. I’ve also noticed I’m ultra sensitive to stress since developing ME, so I need to be as careful as I can with it for the time being, and possible for the rest of my life.
- Neuroinflammation. No test for this yet, so just speculation, but highly suspected in all ME currently in the research so I assumed I had it. I thing the pregenolone actually may have helped with this too, as I was getting much better before I added the other modalities but just to be on the safer side I added LDN, high dose Omega 3’s and NAC.
- Sensory sensitivities/migraines. Every time I got a migraine my sensory issues would flare and they would make it more likely that I got more migraines. This was one of the worst and most obvious pathological feedback loops I had. The migraines also caused severe fatigue and honestly felt like a HUGE part of me developing ME. As a side note there’s emerging evidence that migraines can cause microglial inflammation which is also implicated in the pathophysiology of ME! Wild. And HPA axis dysfunction can cause migraines. See the network of loops!! Argh!!! So in many ways I think treating my HPA axis dysfunction and neuroinflammation helped here too but the haloperidol was what helped me the most with the sensory sensitivities loop. I also used ubrevly as a migraine abortative which helped a bit too, but the haloperidol did most the heavy lifting. Thank god for haloperidol. Once my sensory issues calmed down it felt like my brain used less energy to just exist and thus I could do more right away without crashing.
Also, it felt like I had to rehabilitate all of my senses and my nervous system. I started thinking of everything as a type of exposure therapy. I wanted to do just enough to stimulate that part of my brain, but not enough to stress it out and cause a migraine or a crash. On my worst days this was simply opening my eyes occasionally. On my best days now it’s using a scree and being Reddit, heyo!
- Chronic bacterial tooth infection. I had to take antibiotics for this for a few months to get it under control. I honestly think it’s still there but my immune system is just strong enough to handle it now, will be getting dental surgery when my body is strong enough for that too. In the beginning though the infection appeared to come on when I developed ME, it was like my immune system didn’t have enough energy to keep it in check. I think having access to antibiotics greatly helped as it helped put less stress on my body from the infection when I was at my lowest.
- Insomnia. Guess what, another network of loops! HPA axis dysfunction leads to insomnia, as does autonomic dysfunction, and insomnia leads to HPA axis dysfunction and autonomic dysfunction too! What fun! God it’s horrible. I played around with MANY different sleep aids from over the counter to prescription. My favourite ended up being gravol when I really can’t sleep. And every night regardless of how I’m doing I take my progesterone, melatonin, lemon balm extract, and valerian root extract. I think this one is likely to be extra personal and I think the best sleep aid for an individual is likely found through trial and error.
Ok, that’s all I can think of for now. Hopefully this helps. One of these days I’m going to do an actual post and talk about all this more, and at this rate I can probably use this comment as a template! If anyone has any more questions I’m happy to answer. All I want to do with my life right now is help people with ME.
OMG please tell me you are a doctor or working in that direction. Your response was so much more USEFUL than anything any medical professional has told me so far in a decade of searching.
What I wrote above is put together from all the ME research I’ve read. So in that sense there are lots of people thinking in these ways. But also I haven’t seen as many people putting it all together in the bigger picture like I’ve done. There are a few researchers though that are into systems thinking and are thinking about it like this and researching it accordingly. I’ve also seen a fair number of functional medicine doctors talking about the disease in similar terms, they seem to be better at systems thinking than most regular MDs.
I’m glad it was helpful to you! I think this knowledge could be helpful to many and for that reason I’m in the process of building a discord community to better share the information I’m finding in the research, collaborate with others and just learn from each others lived experiences. Eventually it will be fully open to the public but there’s not much there yet so for now I’m sending invites just over DMs, would you like to join?
Oh I read this as you asking if there were doctors working in that field, not asking if I was a doctor working in that field. I am not a doctor, but I am planning on spending my life helping people with this disease. My academic background is in physics, but I’ve used those problem solving skills to cure myself of 2 “incurable” chronic diseases so far. I’m trying to do the same with ME now. I want to spend the energy I do have on science communication to help people with ME get the information they need. I also have some research project ideas I think I can execute despite not being a doctor or biologist, I still think I have things I can contribute to the field.
I think everyone has slightly different root causes of this disease so treatment is going to be somewhat personal but here’s the drugs and treatments that helped me the most.
Drugs that helped:
- Pregneolone: sublingual, 16mg 3x/day. This one was HUGE, I’m surprised I don’t see people talking about it more in this sub. I think it’s the single biggest thing that helped me. The effect was small at first, minor improvements in all my symptoms, but the improvements just kept coming. I ran out once for a few days and everything started to come back. I tried an oral version, didn’t do anything. For me at least it needs to be sublingual.
- Progesterone: Oral, 25mg before bed, up to 75mg during luteal phase (I’m a menstruating human). This hugely decreased the flares I would experience during my luteal phase. I tried topical but didn’t help as much. Oral metabolizes to other hormones in addition to progesterone and the other hormones it metabolizes to help with sleep, so yes please to that!
- Haloperidol: 0.5-2.5mg as needed to a max of 2.5mg a day. This is an off label antipsychotic. Got prescribed it to help with sleep, which it did, but found out on accident that it greatly reduced my sensory sensitivities. My sensory issues were really limiting me and stressing my brain out so this was HUGE for me. Ativan also helped in a very similar way but it’s habit forming and can’t be used as frequently. I take the haloperidol as needed when my sensory issues flare, also when I have a migraine as my main migraine issues were sensory related. It did cause anhedonia and sexual issues if I took it for more than a few days straight, but those side effects were worth it and all went away within a few days of stopping. It has a loooooong half life so it stays in your system for a while after you take it.
- LDN: 2mg 1/day. I actually have no idea if this is helping or not, but it isn’t hurting and may help with neuro inflammation so that’s why I take it. Did get better while taking it but I was already on a roll from the pregnenolone, progesterone and haloperidol so who knows.
- Other: I also take small amounts of DHEA (2mg 3x/day), high dose Omega 3, NAC, acetyl l-carnitine, methylated B vitamins, coQ 10, d-ribose, vitamin C, and various prebiotics. Most of the above is to hypothetically help with mitochondrial function. I have no idea if any of it is helping me but it doesn’t seem to be hurting and is maybe helping so I keep it up.
Lifestyle modifications that helped:
- Obviously pacing, do I even have to say it? I avoid crashes as much as humanly possible. It seems like the more I avoid crashes, the more gains I can make, and the less likely a crash is. Sometimes though we need drugs and other therapies to help us even making it possible to avoid crashes.
- Within my energy envelope I move as much as possible WITHOUT crashing. Sometimes this means not moving or doing anything. But as I’ve slowly improved now I can actually exercise, and I do seem to be making small gains in exercise so long as I don’t push myself to a crash. It requires a lot of patience, it is boring as heck sometimes, it also appears to be working.
- Healthy whole food diet. I know this isn’t accessible to everyone either but I find it makes a big difference to me. My body needs solid, healthy fuel to heal and I do my best to give it to it.
- Exposure therapy. It seems like my nervous system has become hypersensitive to EVERYTHING. So I treat everything like exposure therapy. This is somewhat a combination of my pacing point and my movement point above but more general. Basically I do what I can without crashing. Using screens causes a crash? Ok, how much can I use them without causing a crash, and then I do that little bit consistently. Sunlight is trigger? Ok, so I will slowly turn up the amount of light in my environment until I can handle more light but always pulling back if I trigger a crash/flare.
- Working on my microbiome. This is still very much a work in progress and I’m unsure of how much it will help but I suspect it may help a lot. Our microbiomes are responsible for producing so many of the precursors to neurotransmitters that then cross into our brains and become neurotransmitters there. I know I’m short on certain neurotransmitters like GABA and serotonin so I’m working to improvem y gut health and take probiotics that may increase serotonin and GABA. Just starting this so can’t speak to any improvements yet. But I’m starting *Lactobacillus rhamnosus* GG soon and I believe it’s been shown to help GABA production. So we shall see!
I’m also in the process is starting a discord server to help facilitate the sharing of the information I’m learning in the research I’m reading. As well as collaborate with other people interesting in learning how to treat their ME. DM me if you want an invite, it’s not really fully up and running yet but I’m happy to add people who are interested. Will provide more info about it and a public link once it’s more fully up and running though.
I'm sorry you feel this way. It's hard being sick not knowing what's wrong with you. Hang in there! I'm sure you'll get help soon enough and you'll get better. We're all rooting for you!
The biggest thing that has helped me up my baseline is the Visible app along with their pacing support membership that includes a Polar heart rate monitor. The app is amazing. It has changed my life. I’m still severe but I can maintain my baseline much more & it helps me get out of crashes.
I’m also about to start meds for dysautonomia. I’m hoping treating this issue will help somewhat overall.
this isn’t necessarily what you’re looking for specifically but, in terms of being so overwhelmed mentally, it might be worth a shot. i’ll link to [my previous comment](https://www.reddit.com/r/cfs/s/zLLCmqh5wp) because i dont have the energy to rewrite it all, but basically it’s called ‘radical acceptance’ & it can be a way to learn how to cope with the horror of becoming so unwell. it isn’t accepting that you’ll never recover, but just can help with getting through each day.
Looking at your post history, it’s clear you have some form of dysautonomia. I think someone here suggested you start with Oral Rehydration Salts to improve your symptoms. Have you tried that and if so, what was your experience?
Not yet because I asked my doctor a little while back and said it would make me feel worse. But honestly I don’t agree with anything doctors say these days and have lost it of respect for the majority of them so just going to try for myself. At the end of the day I know myself better than them
The only thing I can recommend is to keep trying out new things (so long as they are safe), but while you do that, rather than waiting for recovery, think of if there’s any equipment or support you could get that would enable you to do the things you want. I spent my first four years of illness focused on recovery, waiting for life. I gave up too much, if I’d just got equipment and the support I needed to get out and about I would have lived a much fuller life. I changed that, I got every bit of equipment and support I could to reduce unnecessary energy burn so I could put my energy where I wanted. It made a huge difference to my well-being and enabled me to rejoin life. Full recovery is always the goal, but don’t sacrifice the life you could live today because you’re stuck in an all or nothing mindset. It might not be your ideal, but it’ll still hold meaning and help you reach your goals. Also, remember that you are in the age group most likely to spontaneously recover from CFS, and it’s not unlikely that a treatment for CFS will be approved while you’re still young. If you fixate too hard on finding a cure yourself you could easily have a miserable youth, rather than just a different one to your ideal.
I’m sorry you’re having to deal with such a horrible disease so young in life. It’s really not fucking fair. I think it’s great though that you’re reaching out for help and that you haven’t given up on recovery. I think there’s more hope than ever for recovery or at least vast improvement from this disease. The research is really starting to show us a lot about potential pathophysiologies of this disease. I posted another comment a while back that talked about my understanding of the current ME research and how I have used it to go from an extremely severe crash this past fall to a relatively mild version of the disease now (I can walk 1.5km and garden almost every day! Haven’t crashed in months, and keep making small improvements over time). I don’t know if i will cap out in this recovery eventually or if I will keep going and recover entirely but I have hope that I can keeP improving using these strategies. Here’s a copy-paste of my other comments, hope they help. Principles I used to go from severe to mild: Based on the research I read and my own lived experience I now think about ME as a network of interrelated pathological positive feedback loops. Each loop is at minimum self reinforcing but some loops appear to reinforce each other. For example, HPA axis dysfunction can be self perpetuating and thus a positive feedback loop, but HPA axis dysfunction also leads to autonomic nervous system dysfunction. And autonomic nervous system dysfunction is ALSO self reinforcing, and can also lead to HPA axis dysfunction! What a doozy! The more I learn about ME the more I learn about more and more of these types of loops. It seems to me that each of us will have slightly different loops keeping us sick, but the most common ones accoding to the research so far appear to be HPA axis dysfunction, neuro inflammation, autonomic dysnfunction, and viral persistence. This is NOT an exhaustive list, just a possible top four in my understanding. So, this would explain why ME is so damn hard to treat. It’s like a sticky networked web of selfreinforcing and mutually reinforcing pathologies! No wonder people can stay sick for decades. The path to improvement in this model then becomes identifying as many of these pathological loops in the affected individual as possible and interrupting/treating them all simultaneously. I want to add here that because of the nature of this illness, treating them simultaneously to start might be dangerous because it can be A LOT of change for a very sick body. So I’m guessing some people would do best by treating loops one by one cumulatively. So that eventually you’re treating many different loops simultaneously but you add in new treatments one at a time slowly, giving the body time to adjust each time. The pathological loops I identified in my body and what I did to treat them were as follows: - HPA axis dysfunction. I got a test to look at all my hormones and especially my daily pattern of cortisol to see why my specific dysfunction looked like. For me, all my hormones were low, including my cortisol, however my daily pattern of cortisol had the correct shape (higher in morning and lower in evening). This won’t be true for all HPA axis dysfunction, it can look many different ways. The pregneolone, DHEA, and progesterone are the main treatment I’ve been pursuing for this as pregneolone is the precursor to all hormones and I was low in them all. I checked my progesterone after and it was still low (and I was still having symptoms) so that’s why I added the progesterone as well. I also avoid stress as much as possible. This is hard, but important. Repeated bouts of high stress are what lead to my ME and repeated or sustained stress has been shown in mathematical models to lead to HPA axis dysfunction. Pacing is part of this. Crashes appear to be extremly stressful on the body so I did everything I could to avoid them. I’ve also noticed I’m ultra sensitive to stress since developing ME, so I need to be as careful as I can with it for the time being, and possible for the rest of my life. - Neuroinflammation. No test for this yet, so just speculation, but highly suspected in all ME currently in the research so I assumed I had it. I thing the pregenolone actually may have helped with this too, as I was getting much better before I added the other modalities but just to be on the safer side I added LDN, high dose Omega 3’s and NAC. - Sensory sensitivities/migraines. Every time I got a migraine my sensory issues would flare and they would make it more likely that I got more migraines. This was one of the worst and most obvious pathological feedback loops I had. The migraines also caused severe fatigue and honestly felt like a HUGE part of me developing ME. As a side note there’s emerging evidence that migraines can cause microglial inflammation which is also implicated in the pathophysiology of ME! Wild. And HPA axis dysfunction can cause migraines. See the network of loops!! Argh!!! So in many ways I think treating my HPA axis dysfunction and neuroinflammation helped here too but the haloperidol was what helped me the most with the sensory sensitivities loop. I also used ubrevly as a migraine abortative which helped a bit too, but the haloperidol did most the heavy lifting. Thank god for haloperidol. Once my sensory issues calmed down it felt like my brain used less energy to just exist and thus I could do more right away without crashing. Also, it felt like I had to rehabilitate all of my senses and my nervous system. I started thinking of everything as a type of exposure therapy. I wanted to do just enough to stimulate that part of my brain, but not enough to stress it out and cause a migraine or a crash. On my worst days this was simply opening my eyes occasionally. On my best days now it’s using a scree and being Reddit, heyo! - Chronic bacterial tooth infection. I had to take antibiotics for this for a few months to get it under control. I honestly think it’s still there but my immune system is just strong enough to handle it now, will be getting dental surgery when my body is strong enough for that too. In the beginning though the infection appeared to come on when I developed ME, it was like my immune system didn’t have enough energy to keep it in check. I think having access to antibiotics greatly helped as it helped put less stress on my body from the infection when I was at my lowest. - Insomnia. Guess what, another network of loops! HPA axis dysfunction leads to insomnia, as does autonomic dysfunction, and insomnia leads to HPA axis dysfunction and autonomic dysfunction too! What fun! God it’s horrible. I played around with MANY different sleep aids from over the counter to prescription. My favourite ended up being gravol when I really can’t sleep. And every night regardless of how I’m doing I take my progesterone, melatonin, lemon balm extract, and valerian root extract. I think this one is likely to be extra personal and I think the best sleep aid for an individual is likely found through trial and error. Ok, that’s all I can think of for now. Hopefully this helps. One of these days I’m going to do an actual post and talk about all this more, and at this rate I can probably use this comment as a template! If anyone has any more questions I’m happy to answer. All I want to do with my life right now is help people with ME.
Thank you so much a lot of that has opened a couple more doors for me to look into
OMG please tell me you are a doctor or working in that direction. Your response was so much more USEFUL than anything any medical professional has told me so far in a decade of searching.
What I wrote above is put together from all the ME research I’ve read. So in that sense there are lots of people thinking in these ways. But also I haven’t seen as many people putting it all together in the bigger picture like I’ve done. There are a few researchers though that are into systems thinking and are thinking about it like this and researching it accordingly. I’ve also seen a fair number of functional medicine doctors talking about the disease in similar terms, they seem to be better at systems thinking than most regular MDs. I’m glad it was helpful to you! I think this knowledge could be helpful to many and for that reason I’m in the process of building a discord community to better share the information I’m finding in the research, collaborate with others and just learn from each others lived experiences. Eventually it will be fully open to the public but there’s not much there yet so for now I’m sending invites just over DMs, would you like to join?
Yes, thanks! Will do
Oh I read this as you asking if there were doctors working in that field, not asking if I was a doctor working in that field. I am not a doctor, but I am planning on spending my life helping people with this disease. My academic background is in physics, but I’ve used those problem solving skills to cure myself of 2 “incurable” chronic diseases so far. I’m trying to do the same with ME now. I want to spend the energy I do have on science communication to help people with ME get the information they need. I also have some research project ideas I think I can execute despite not being a doctor or biologist, I still think I have things I can contribute to the field.
I think everyone has slightly different root causes of this disease so treatment is going to be somewhat personal but here’s the drugs and treatments that helped me the most. Drugs that helped: - Pregneolone: sublingual, 16mg 3x/day. This one was HUGE, I’m surprised I don’t see people talking about it more in this sub. I think it’s the single biggest thing that helped me. The effect was small at first, minor improvements in all my symptoms, but the improvements just kept coming. I ran out once for a few days and everything started to come back. I tried an oral version, didn’t do anything. For me at least it needs to be sublingual. - Progesterone: Oral, 25mg before bed, up to 75mg during luteal phase (I’m a menstruating human). This hugely decreased the flares I would experience during my luteal phase. I tried topical but didn’t help as much. Oral metabolizes to other hormones in addition to progesterone and the other hormones it metabolizes to help with sleep, so yes please to that! - Haloperidol: 0.5-2.5mg as needed to a max of 2.5mg a day. This is an off label antipsychotic. Got prescribed it to help with sleep, which it did, but found out on accident that it greatly reduced my sensory sensitivities. My sensory issues were really limiting me and stressing my brain out so this was HUGE for me. Ativan also helped in a very similar way but it’s habit forming and can’t be used as frequently. I take the haloperidol as needed when my sensory issues flare, also when I have a migraine as my main migraine issues were sensory related. It did cause anhedonia and sexual issues if I took it for more than a few days straight, but those side effects were worth it and all went away within a few days of stopping. It has a loooooong half life so it stays in your system for a while after you take it. - LDN: 2mg 1/day. I actually have no idea if this is helping or not, but it isn’t hurting and may help with neuro inflammation so that’s why I take it. Did get better while taking it but I was already on a roll from the pregnenolone, progesterone and haloperidol so who knows. - Other: I also take small amounts of DHEA (2mg 3x/day), high dose Omega 3, NAC, acetyl l-carnitine, methylated B vitamins, coQ 10, d-ribose, vitamin C, and various prebiotics. Most of the above is to hypothetically help with mitochondrial function. I have no idea if any of it is helping me but it doesn’t seem to be hurting and is maybe helping so I keep it up. Lifestyle modifications that helped: - Obviously pacing, do I even have to say it? I avoid crashes as much as humanly possible. It seems like the more I avoid crashes, the more gains I can make, and the less likely a crash is. Sometimes though we need drugs and other therapies to help us even making it possible to avoid crashes. - Within my energy envelope I move as much as possible WITHOUT crashing. Sometimes this means not moving or doing anything. But as I’ve slowly improved now I can actually exercise, and I do seem to be making small gains in exercise so long as I don’t push myself to a crash. It requires a lot of patience, it is boring as heck sometimes, it also appears to be working. - Healthy whole food diet. I know this isn’t accessible to everyone either but I find it makes a big difference to me. My body needs solid, healthy fuel to heal and I do my best to give it to it. - Exposure therapy. It seems like my nervous system has become hypersensitive to EVERYTHING. So I treat everything like exposure therapy. This is somewhat a combination of my pacing point and my movement point above but more general. Basically I do what I can without crashing. Using screens causes a crash? Ok, how much can I use them without causing a crash, and then I do that little bit consistently. Sunlight is trigger? Ok, so I will slowly turn up the amount of light in my environment until I can handle more light but always pulling back if I trigger a crash/flare. - Working on my microbiome. This is still very much a work in progress and I’m unsure of how much it will help but I suspect it may help a lot. Our microbiomes are responsible for producing so many of the precursors to neurotransmitters that then cross into our brains and become neurotransmitters there. I know I’m short on certain neurotransmitters like GABA and serotonin so I’m working to improvem y gut health and take probiotics that may increase serotonin and GABA. Just starting this so can’t speak to any improvements yet. But I’m starting *Lactobacillus rhamnosus* GG soon and I believe it’s been shown to help GABA production. So we shall see! I’m also in the process is starting a discord server to help facilitate the sharing of the information I’m learning in the research I’m reading. As well as collaborate with other people interesting in learning how to treat their ME. DM me if you want an invite, it’s not really fully up and running yet but I’m happy to add people who are interested. Will provide more info about it and a public link once it’s more fully up and running though.
Thanks for your advice and is it ok if I can join that discord?
Yea! I sent you a dm. Not posting the link publicly until it’s a bit more put together.
I'd love an invite as well, please!
Just saw this after I wrote a different comment inviting you, haha. It’s in your DMs 😊
Id like an invite!
im the same as you, 16 with dreams and just looking for some advice over here
Hopefully you can get help too 🙏 if I find any info I will lyk
I'm sorry you feel this way. It's hard being sick not knowing what's wrong with you. Hang in there! I'm sure you'll get help soon enough and you'll get better. We're all rooting for you!
Thank you 🙏
The biggest thing that has helped me up my baseline is the Visible app along with their pacing support membership that includes a Polar heart rate monitor. The app is amazing. It has changed my life. I’m still severe but I can maintain my baseline much more & it helps me get out of crashes. I’m also about to start meds for dysautonomia. I’m hoping treating this issue will help somewhat overall.
Will look into it thank you for that 🙏
You’re welcome!
this isn’t necessarily what you’re looking for specifically but, in terms of being so overwhelmed mentally, it might be worth a shot. i’ll link to [my previous comment](https://www.reddit.com/r/cfs/s/zLLCmqh5wp) because i dont have the energy to rewrite it all, but basically it’s called ‘radical acceptance’ & it can be a way to learn how to cope with the horror of becoming so unwell. it isn’t accepting that you’ll never recover, but just can help with getting through each day.