Internal Medicine MD here with ME/Long covid- now recovering rapidly. Redlight therapy is doing major work for me too. Mind-body medicine and IFS. Deep shadow work and inner child healing. Dr. Stein is an idol. Even responded to my email. I am working towards offering resources and guidance and seeing Dr Stein's work is a huge inspiration. And your channel has been huge for me in my recovery journey.
What did red light help you with specifically if you don't mind sharing? Also interested in any resources you mentioned if you have any links or references ☺️ cheers!
So glad the 'taking it slowly and being cautious' advice was added to this. I see many people advocating for fasting, cold water therapy and other things that stress/improve the body, but without mentioning that this can overwhelm someone with a lower baseline. If you're already in rolling PEM, overwhelmed or not coping with your daily load, then adding more stress to the body probably isn't a good idea. My personal opinion is that there has to be a little bit of stability in place before adding more stress. If you're at the start of a huge crash, this probably isn't the best time to be throwing yourself in an ice bath! That said, we can't recover laying in bed all day. I think this is such a tricky illness to get right and I completely understand why many of us can struggle with working out what is the right amount of movement or 'stress' to place on ourselves. Fasting made me crash initially despite loving it before being ill. I had to eat regularly and stabilise myself before I could attempt it again. I can now manage some daily 14-16 hours fasting without issues, but I wouldn't want to push past that. Yet. Also, cold water therapy doesn't have to be a full on ice bath. It can just be a body part, end a shower on cold, place an ice pack on the body for a bit (never directly on skin). It doesn't even have to be ice in a bath, just some cold water. Is it unpleasant to you/make you shiver a little? If yes, then there's your stress. It doesn't have to be horrendously unpleasant, teeth chattering, hypothermic danger level stress for benefits! It's so tempting to want to go fully in on these things because they DO work, and we all want to get better fast. But please try and tune into your own needs!
Thank you, Raelan and Dr. Stein, for recognizing that so many of us who have MECFS, Long Covid, MCAS, POTS, fibromyalgia, EDS, etc. have been sick for so long, unable to work, and in debt. We are often unable to see any doctors who don't take insurance, even though they are the ones who usually know more about these diseases. We can often not afford even a massage or an expensive supplement. That said, a gentle reminder that those of us with heart problems should avoid cold plunges, and some us us do not do well with any kind of fasting. Thank you again for your work!
Fasting or carb withholding induces my stress response. This explains why with most every diet I went on, my health declined. At some point, it comes down to deuterium depletion and the inability for the mitochondria to repair DNA I think.
I find rebounding on a mini-trampoline works well for this. I've gotten away from it but just starting to get back to it. I read or heard, can't remember, that is puts energy into the body. I just do 5 minutes a day a very gentle "health" bounce, my feet don't even really leave the surface, but the gentle bounce for 5 minutes has a lot of benefits. I hope to eventually get up to 10 minutes and so on.
@@AliWade1971 Awesome! I got mine for $40. It was a couple of years ago, might be a bid more now. There are lots of youtube videos on beginner rebounding and on the benefits. I hope you enjoy it!
@@rebeccaledam7544 Feel more energy and stronger, back when I did it. Didn't get tired as quickly. I wasn't doing it long enough and constant enough to really get big benefits but just doing it 5 minutes a day I found it helped me feel better.
I do this! I can't get any other person with ME to consider it 😅 Even in my severe phase I was doing 20 seconds then lying flat in my bed (I'm lucky that I could fit it near to my bed) every 2-3 days. Then I transitioned to 20 secs a day gradually and then a good 2 years of 2 or 3 sets of 20 seconds spaced out through the day. I finally moved up to 30 seconds now. I do very vigorous jumping and arm swinging, hence why a shorter time. It doesn't trigger my pots at 30 seconds
Everyone is different. I have done intermittent fasting for 3 years of my chronic fatigue journey. I’d eat in a 6 to seven hour window. I never lost weight. I did lose having an appetite. I lost sugar cravings. I did not embark on intermittent fasting during this body shutdown phase. I was 6 mos into intermittent fasting before becoming bedridden. Other people support eating on a regular schedule. I guess I’m overwhelmed with all the varied information in my state of mind.
Great talk! This channel is such an inspiration. As many speakers I saw, I am dreaming with the idea of being able to recover and tell my story to help others. This is my second time with long covid. First time I went througt it I was pregnant and with 1year old toddler. The second time started with a reinfection after being 100%recovered for more than 1 year., my kids are 1.5 and 3.5 years old now and I am fighting everyday to be me again. I am so sure I am going to do it that I want to write it here as a compromise to myself and to thanks Raelan to make me belive is possible. 😊
Loved that you had her back, so much helpful info. It's so nice that she is making her programme accessible to the most vulnerable ,even when it probably makes her life a lot more complicated.
I wish the advice to manage energy and pace had come at the start rather than the end of the video. If you are already in PEM as many ppl are if they are symptimatic, they must already be triggering hormetic activity, surely.. in which case adding more is surely unhelpful and damaging as mentioned towards the end if the dose is too high
I am soo absolutely impressed with Dr Stein!! I hope to some day offer affordable treatment options for my clients. Raelan, your commitment to connecting with people like doctor Stein is so inspiring. In and of itself, you are providing invaluable information for ME/CFS sufferers. It is treatment just to hear these interviews. 💕🌸
Thanks Raelan and Dr. Ellie Stein for sharing this thoughtful conversation with us 🙏❤️ Similar to Dr. Stein I had this lightbulb moment somewhere last year that at least the graded exposure and so the retraining of the stress response of our bodies works according to the principles of hormesis. If it wouldn't be hormetic interventions (light to moderate stressors and not permanent) the body couldn't adapt and level up and the stress-response of the brain would become even more sensitized. But even if it's nice to understand theoretically the real challenge is in the application during recovery where you have to feel the right dosage for everything.😊 And I think here is where a lot of re-learning takes place and where we have the opportunity to form new habits through patient listening to our bodies and through conscious responses to the signals it gives. Raelan and Dr. Stein: Do you think that coffee or caffeine in general could be used in the same way as a hormetic intervention during recovery? What were your experiences with caffeine and - if you quit during recovery - did you reintegrated a daily caffeine source after your full recovery? I would really appreciate your thoughts on this. best regards from Germany 🌞
Wow. I have never heard that about sleep, and it makes so much sense. I always struggle to sleep when I have used up all my daytime energy. (EFT Tapping or Deep Relaxation Meditation helps me then.). Signed up for your talk
What a brilliant caring doctor, the world needs more people like her. I could never understand how if I'm too cold I end up in PEM yet I can walk my dogs 1k.
Thanks Raelan and Dr Stein! I've been looking into getting a red light therapy device, so it was great to hear Dr Stein speak about them. Facsinating information that you need energy to sleep.. that was certainly new to me too. A seperate video on that topic would be great! 💛🧡💜
That was brilliant, thank you dr stein. I didnt understand the conection of what you do in the day/ needing energy to sleep, really helpful❤ my birthday this wk, just went online n bought myself a redlight therapy lamp😊 And Raelan, your face was a delight to watch, you looked totally in ore❤ As always your vidios are sooooooo helpfulness🙏 Xxx
just started using red light therapy and it is feeling really good, but i'm scared that its "fake" progress. is this something that can be used throughout healing and after to reach 100% recovery?
Thanks Raelan! I did a follow up visit with my GP who in the past couldn’t help me. I told her what I had discovered and how I had gotten better with brain training. She said “you know that’s interesting. My mom died and then I had minor surgery. I was so tired I just could not break out of my lethargy. so at one point I decided I’m going to garden and I’m gonna push through that lethargy. And you know what? I got better.” I am like yeah :-) I copied this link of Dr. Stein and emailed it to my doctor because it’s the “medical stuff”. I try to use medical terms when I talk to people about what happened to me and how I got better otherwise they think I just had positive thinking and so it’s woo woo
So Dr. Stein said there were specific wavelengths of light that were researched to be most beneficial, but not what those were. Also, would love to know what the fascinating book that 'is going to take 4 months to read' is!
Eureeka- “Sleep requires energy.” This changes how I look at insomnias role in CFS. Please delve deeper… How do we reverse a lifetime of Insomnia so that we can heal?
This was such a great interview! Cold plunges....my mom started all of us kids on cold plunges when we were infants. I was addicted to finishing my shower with cold for all my life until I moved to MT where the well water feels like ice. I've started doing it again and it really helps with my brain fog! I could never do a plunge now....would die of hypothermia before I could get out😂
ive had every specialist tell me idk and test me for thi gs just to see. IVIG seemed to help but it was a small percent. but when im at my wits end i will take anything that mskes me seem better.
I have a question I would like to increase my intermediate fasting hours (8 eating /16 fasting) but since im mild and do volunteer work I need my electrolytes. Otherwise I get too dizzy from my POTS. Do electrolytes break the fast?
You mentioned PEM, thanks. We need to be realistic about this and go slow. But I wish you'd talked about which ones people with POTS can try. It's not the focus of this channel, but I can't do sauna at all, 36 hour fasting is difficult. I'm wondering what ones I can try without crashing. I guess cold therapy would be fine.
Il take this one as I had severe POTs, much to my shock (and terrible relapses from overdoing it) starting with little bits of walking, constant yoga Nidra when I feel symptoms being worse, and sauna I couldn’t go anywhere near for a year or slow exposure I’m talking a sauna blanket lot heat 2 mins and building up. It’s finding the perfect balance which is also a nightmare and not easy, but you can get past the POTs , 3 1/2 years on I still have many symptoms if I over exert, but if I don’t and find optimal balance then I can live relatively POTs free
Same here with heds check sleep apnea always sleeps problems autism adhd nowadays take look Dr lenz to do you get much pain rccx gene theory good to hope to see that in this channel to
@@denisebraisby4251 Hi there my bloods . Some are low. My vitamin bD is very low , But because I have Fibromyalgia thy put it down to my complaints, of which I know is different , I can’t look at bright lights have to wear dark glasses in house , low white cells . What would it be ? My neurologist has me down for a muscle biopsy, but I have to wait I can’t stand this auful feeling .
I have done al the hormetics mentioned, quite regularly but no improvement yet of energy. I feel 24/7 as if i haven’t eaten anything even though I have
I experienced that unusual hunger. It always surprised me that I didn't gain weight! I recently heard on the Long Covid podcast from a dietician who recovered, and she realized that at least for some people, we are burning through calories rapidly as our system in on high alert -- rapid heart rate for instance utilized a lot of calories, in a similar manner to patients with COPD. Dietary guidelines for COPD calls for increasing calorie intake. For me, frequent eating reduced my symptoms -- small amounts, and paying attention to what I was eating to reduce blood sugar spikes or drops. Now that my system is much more calm (I've gone from about 30% functioning to about 80% in the last year), I am able to nudge eating times a bit, but I think, at least for me, it would have been counter productive while I was still in the very high alert state/severe symptom state. I needed to first find an even lower baseline of cognitive/physical activity than what I had for the first 2 years, and work on my psychological/emotional stress response before trying to build up or lightly challenge my system slowly. I absolutely agree that what is being described here does seem to work, as I think it is what is allowing my recovery, but in my first 2 years I tried to begin building back before I was at the right starting point!
@@nickm5760 My snacks at first I think were a little too carb based -- things like dried fruit, crackers and pretzels. About 18 months in I took a program (ANS Rewire) and realized my body was likely over reacting in response to things that quickly broke into sugar. So if I do eat some carbs I make them whole grain, and I pair it with protein/fat. Some low carb snacks for me are nuts, low sugar fruit (apples) and peanut butter, hard boiled eggs, good quality sliced meat and with bell pepper and avocado, cottage cheese.
@@nickm5760 I cannot know your situation, but for me, I held on to my job far longer than I was healthy for me. I had slowly built back to 5.5 hours a day -- but I was working laying down because I had such severe POTS and had to take breaks frequently because looking at screens made me feel like vomiting. Every day I had very severe, awful symptoms. I couldn't really socialize, barely could listen to music, cook or clean, and was housebound. At a certain point, I realized I COULD get better, but continuing to work was making it nearly impossible. I made the leap to leave my job last July. It was really scary financially, but it was what I needed to do under the severe symptom burden I was dealing with. I said at the time I was 65% recovered -- but this was another example of how distorted my reality had become by the illness. After stopping work and reducing my baseline to get symptoms into moderate zone, I realized I had been at 20-30% most of my illness, even if I tortuously had made myself work. This may not be your story, but I wanted to share it in case someone needs to hear it. After so long of dealing with severe symptoms, I had terrible tunnel vision related to my options!
It’s not.listen to your body. At rare times it can be beneficial but when the body is struggling to produce energy u don’t want to fast u want to fast.
I did a 36 hours fast when I was in a very bad way post Covid. It was amazing. But I did try fasting for less periods prior to that long fast. Also I was not busy with other important things so could really be very mindful to how I was feeling at every moment and was ready to give up in case my body has strong negative reactions. But the fasting was great and many of my strange issues receded like hives, fatigue, etc. It did not cure me permanently, but taught me that occasionally fasting can totally reset our bodies once in awhile and that helps, I feel...
Depends on the person but for me definitely not. I feel much better eating frequently and focusing on keeping blood sugar stable. I get low blood sugar easily. Personally I think fasting more than 12 hours is too much stress on the body for most who are very sick.
Just curious. I love dr. Stein but I want to ask her why, in another interview where there was a q&a she told a woman with me CFS that she couldn't reviver from fatigue? I was shocked and have since really been turn d off of dr. Stein given what a nocebo she gave this person
Could that have been a very old interview? Dr. Stein has been teaching about improving with ME/CFS for many years now. I don’t think she would have ever said recovery wasn’t possible.
here is the interview. Go to around 53.38 for the question. I appreciated the conservative answer but it left a huge nocebo dangling there, in my mind anyway. Dr. Stein talked about ME and energy conditions being about damaged mitochondria. I agree with this except I see it as a "down stream" issue. In my experience with Long Covid, the energy piece was the first to resolve when I figured out mindset, acceptance, and slowly moving out of the freeze state I was in
@@amysin963 to be fair, I went back to the interview and she said "for some people" recovery may not be possible but it was the context of her remark which was a question from a viewer around applying neuroplasticity approaches to fatigue. Regardless, Dr. Stein is amazing and I do appreciate her
I’ve found a full ice bath isn’t necessary for me. Just pouring one water bottle of ice cold water over the back of my neck does a reset. It feels good. I am a believer in far infrared niacin treatment as log as your able to replenish data and minerals being sweated out. Much respect to the good doctor, but I found the Twinkies comment condendenscending. Not necessary for a very “deprived” of simple pleasures community. Just feedback. It felt like a shame blame stone Because it falls into the stereotype of what people think about people on disability that they just lie on their sofa, and eat Twinkies all day watching TV. Wrong audience. If only I could get my gut my body, my brain to not react to a Twinkie. Then you want to shame my Twinkie? Just no.
I am soo absolutely impressed with Dr Stein!! I hope to some day offer affordable treatment options for my clients. Raelan, your commitment to connecting with people like doctor Stein is so inspiring. In and of itself, you are providing invaluable information for ME/CFS sufferers. It is treatment just to hear these interviews. 💕🌸
👉👉 Making Hormesis Work For You - Dr. Stein's FREE pdf summary - bit.ly/3KA1j5E
Internal Medicine MD here with ME/Long covid- now recovering rapidly. Redlight therapy is doing major work for me too. Mind-body medicine and IFS. Deep shadow work and inner child healing. Dr. Stein is an idol. Even responded to my email. I am working towards offering resources and guidance and seeing Dr Stein's work is a huge inspiration. And your channel has been huge for me in my recovery journey.
What did red light help you with specifically if you don't mind sharing?
Also interested in any resources you mentioned if you have any links or references ☺️ cheers!
Can u plz tell me which device u using
What is IFS?
@@alicequayle4625brain training
@@alicequayle4625intermittent fasting I presume
So glad the 'taking it slowly and being cautious' advice was added to this. I see many people advocating for fasting, cold water therapy and other things that stress/improve the body, but without mentioning that this can overwhelm someone with a lower baseline.
If you're already in rolling PEM, overwhelmed or not coping with your daily load, then adding more stress to the body probably isn't a good idea. My personal opinion is that there has to be a little bit of stability in place before adding more stress. If you're at the start of a huge crash, this probably isn't the best time to be throwing yourself in an ice bath!
That said, we can't recover laying in bed all day. I think this is such a tricky illness to get right and I completely understand why many of us can struggle with working out what is the right amount of movement or 'stress' to place on ourselves.
Fasting made me crash initially despite loving it before being ill. I had to eat regularly and stabilise myself before I could attempt it again. I can now manage some daily 14-16 hours fasting without issues, but I wouldn't want to push past that. Yet.
Also, cold water therapy doesn't have to be a full on ice bath. It can just be a body part, end a shower on cold, place an ice pack on the body for a bit (never directly on skin). It doesn't even have to be ice in a bath, just some cold water. Is it unpleasant to you/make you shiver a little? If yes, then there's your stress. It doesn't have to be horrendously unpleasant, teeth chattering, hypothermic danger level stress for benefits!
It's so tempting to want to go fully in on these things because they DO work, and we all want to get better fast. But please try and tune into your own needs!
Well said on cold plunges and fasting! I had horrendous reactions till I just stopped everything that could possibly give me stress.
Wise words. Thank you
Excellent response ❤🙏🙌
Really helpful, thank you.
Thank you, Raelan and Dr. Stein, for recognizing that so many of us who have MECFS, Long Covid, MCAS, POTS, fibromyalgia, EDS, etc. have been sick for so long, unable to work, and in debt. We are often unable to see any doctors who don't take insurance, even though they are the ones who usually know more about these diseases. We can often not afford even a massage or an expensive supplement. That said, a gentle reminder that those of us with heart problems should avoid cold plunges, and some us us do not do well with any kind of fasting. Thank you again for your work!
Fasting or carb withholding induces my stress response. This explains why with most every diet I went on, my health declined. At some point, it comes down to deuterium depletion and the inability for the mitochondria to repair DNA I think.
I find rebounding on a mini-trampoline works well for this. I've gotten away from it but just starting to get back to it. I read or heard, can't remember, that is puts energy into the body. I just do 5 minutes a day a very gentle "health" bounce, my feet don't even really leave the surface, but the gentle bounce for 5 minutes has a lot of benefits. I hope to eventually get up to 10 minutes and so on.
On my Wish List.
@@AliWade1971 Awesome! I got mine for $40. It was a couple of years ago, might be a bid more now. There are lots of youtube videos on beginner rebounding and on the benefits. I hope you enjoy it!
Curious to know what the benefits are that you've noticed? ☺️🙏
@@rebeccaledam7544 Feel more energy and stronger, back when I did it. Didn't get tired as quickly. I wasn't doing it long enough and constant enough to really get big benefits but just doing it 5 minutes a day I found it helped me feel better.
I do this! I can't get any other person with ME to consider it 😅
Even in my severe phase I was doing 20 seconds then lying flat in my bed (I'm lucky that I could fit it near to my bed) every 2-3 days.
Then I transitioned to 20 secs a day gradually and then a good 2 years of 2 or 3 sets of 20 seconds spaced out through the day.
I finally moved up to 30 seconds now. I do very vigorous jumping and arm swinging, hence why a shorter time. It doesn't trigger my pots at 30 seconds
Everyone is different. I have done intermittent fasting for 3 years of my chronic fatigue journey. I’d eat in a 6 to seven hour window. I never lost weight. I did lose having an appetite. I lost sugar cravings. I did not embark on intermittent fasting during this body shutdown phase. I was 6 mos into intermittent fasting before becoming bedridden. Other people support eating on a regular schedule. I guess I’m overwhelmed with all the varied information in my state of mind.
Do you have a recommendation of a red light or infrared light?
Thank you so much for acknowledging how difficult this illness is financially! Great interview!
Great talk! This channel is such an inspiration. As many speakers I saw, I am dreaming with the idea of being able to recover and tell my story to help others. This is my second time with long covid. First time I went througt it I was pregnant and with 1year old toddler. The second time started with a reinfection after being 100%recovered for more than 1 year., my kids are 1.5 and 3.5 years old now and I am fighting everyday to be me again. I am so sure I am going to do it that I want to write it here as a compromise to myself and to thanks Raelan to make me belive is possible. 😊
Loved that you had her back, so much helpful info. It's so nice that she is making her programme accessible to the most vulnerable ,even when it probably makes her life a lot more complicated.
I wish the advice to manage energy and pace had come at the start rather than the end of the video. If you are already in PEM as many ppl are if they are symptimatic, they must already be triggering hormetic activity, surely.. in which case adding more is surely unhelpful and damaging as mentioned towards the end if the dose is too high
Recommendation for red light?
Amazing interview, Raelan and Dr Stein, thank you!
I am soo absolutely impressed with Dr Stein!! I hope to some day offer affordable treatment options for my clients. Raelan, your commitment to connecting with people like doctor Stein is so inspiring. In and of itself, you are providing invaluable information for ME/CFS sufferers. It is treatment just to hear these interviews. 💕🌸
Thanks Raelan and Dr. Ellie Stein for sharing this thoughtful conversation with us 🙏❤️
Similar to Dr. Stein I had this lightbulb moment somewhere last year that at least the graded exposure and so the retraining of the stress response of our bodies works according to the principles of hormesis. If it wouldn't be hormetic interventions (light to moderate stressors and not permanent) the body couldn't adapt and level up and the stress-response of the brain would become even more sensitized.
But even if it's nice to understand theoretically the real challenge is in the application during recovery where you have to feel the right dosage for everything.😊 And I think here is where a lot of re-learning takes place and where we have the opportunity to form new habits through patient listening to our bodies and through conscious responses to the signals it gives.
Raelan and Dr. Stein: Do you think that coffee or caffeine in general could be used in the same way as a hormetic intervention during recovery? What were your experiences with caffeine and - if you quit during recovery - did you reintegrated a daily caffeine source after your full recovery?
I would really appreciate your thoughts on this.
best regards from Germany 🌞
Interesting question!
@@annereynolds4150 Thanks Anne. But I think we have to find out for ourselves 😅
Wow. I have never heard that about sleep, and it makes so much sense. I always struggle to sleep when I have used up all my daytime energy. (EFT Tapping or Deep Relaxation Meditation helps me then.). Signed up for your talk
What a brilliant caring doctor, the world needs more people like her. I could never understand how if I'm too cold I end up in PEM yet I can walk my dogs 1k.
Thanks!
Much appreciated 🙏❤️ Thanks so much for your support!
Thanks!
Much appreciated, Marzena! 🧡🧡 Thanks so much for your kind support!
Thank you. So helpful 😊
Thanks Raelan and Dr Stein! I've been looking into getting a red light therapy device, so it was great to hear Dr Stein speak about them. Facsinating information that you need energy to sleep.. that was certainly new to me too. A seperate video on that topic would be great! 💛🧡💜
Such a Lovely doc!!!!!
So the sun also emits the infra red same as red light therapy (Johnson and Lee 2021) … therefore that’s why the sun is essential step 1
Yes Dr huberman recommends early morning and dusk natural light - must work similarly (the red light hitting the eyeballs) a very nice free option!
Yes, got tons out of this one! Lots to follow up on, big thanks.
That was brilliant, thank you dr stein. I didnt understand the conection of what you do in the day/ needing energy to sleep, really helpful❤ my birthday this wk, just went online n bought myself a redlight therapy lamp😊 And Raelan, your face was a delight to watch, you looked totally in ore❤ As always your vidios are sooooooo helpfulness🙏 Xxx
just started using red light therapy and it is feeling really good, but i'm scared that its "fake" progress. is this something that can be used throughout healing and after to reach 100% recovery?
Can anyone recommend or direct me which red light devise is good?
Wow so knowledgeable. I really needed this video. Thank you
Thanks Raelan! I did a follow up visit with my GP who in the past couldn’t help me. I told her what I had discovered and how I had gotten better with brain training.
She said “you know that’s interesting. My mom died and then I had minor surgery. I was so tired I just could not break out of my lethargy. so at one point I decided I’m going to garden and I’m gonna push through that lethargy. And you know what? I got better.”
I am like yeah :-) I copied this link of Dr. Stein and emailed it to my doctor because it’s the “medical stuff”.
I try to use medical terms when I talk to people about what happened to me and how I got better otherwise they think I just had positive thinking and so it’s woo woo
Sounds like your doctor had depression not cfs.
So Dr. Stein said there were specific wavelengths of light that were researched to be most beneficial, but not what those were. Also, would love to know what the fascinating book that 'is going to take 4 months to read' is!
Eureeka- “Sleep requires energy.” This changes how I look at insomnias role in CFS. Please delve deeper… How do we reverse a lifetime of Insomnia so that we can heal?
Yes sleep apnea highly comorbid CFS fybromyalgia ADHD autism
@@Truerealism747 I do not have sleep apnea, but I do wake up every hour or so so I am wondering why
@@Aetherfield sounds lik sleep apnea I don't wake up but always unrefreshed
Great talk ❤
So intresting, thank you both!
This was such a great interview! Cold plunges....my mom started all of us kids on cold plunges when we were infants. I was addicted to finishing my shower with cold for all my life until I moved to MT where the well water feels like ice. I've started doing it again and it really helps with my brain fog! I could never do a plunge now....would die of hypothermia before I could get out😂
What red light device should we be getting?
This whole CFS is so mysterious and touch and go. so many variables. Its a journey of survival and the main product is despair.
ive had every specialist tell me idk and test me for thi gs just to see. IVIG seemed to help but it was a small percent. but when im at my wits end i will take anything that mskes me seem better.
I have a question I would like to increase my intermediate fasting hours (8 eating /16 fasting) but since im mild and do volunteer work I need my electrolytes. Otherwise I get too dizzy from my POTS. Do electrolytes break the fast?
A stunning interview!
Thank you so much!!
You mentioned PEM, thanks. We need to be realistic about this and go slow. But I wish you'd talked about which ones people with POTS can try. It's not the focus of this channel, but I can't do sauna at all, 36 hour fasting is difficult. I'm wondering what ones I can try without crashing. I guess cold therapy would be fine.
Il take this one as I had severe POTs, much to my shock (and terrible relapses from overdoing it) starting with little bits of walking, constant yoga Nidra when I feel symptoms being worse, and sauna I couldn’t go anywhere near for a year or slow exposure I’m talking a sauna blanket lot heat 2 mins and building up. It’s finding the perfect balance which is also a nightmare and not easy, but you can get past the POTs , 3 1/2 years on I still have many symptoms if I over exert, but if I don’t and find optimal balance then I can live relatively POTs free
@@MrKelso85 That's great news.👏 Are they the only things you did: walking, yoga nidra and sauna? Were you on medications?
Do you think that ozone ten pass or hydrogen peroxide baths is another way of doing hormesis.?
What is a “good” red light therapy unit?
In my 29th year of CFS and Fibro😊
So I’m not clear are normal saunas good for recovery or only red /infrared saunas?
body shock is what you're saying is the key.
What to do when chronic fatigue is a result of autism burnout and cptsd
Same here with heds check sleep apnea always sleeps problems autism adhd nowadays take look Dr lenz to do you get much pain rccx gene theory good to hope to see that in this channel to
Hi Raleen . I’m feeling so bad . My Gp says I don’t have Me/ cos
Go get a second opinion. You are allowed to.
Sorry to hear this. Did he say what he thought it might be? Are all your bloods fine etc?
@@denisebraisby4251 Hi there my bloods . Some are low. My vitamin bD is very low , But because I have Fibromyalgia thy put it down to my complaints, of which I know is different , I can’t look at bright lights have to wear dark glasses in house , low white cells . What would it be ? My neurologist has me down for a muscle biopsy, but I have to wait I can’t stand this auful feeling .
@@denisebraisby4251 they replied but it's in 'all comments'.
@@BernadetteDevlin-l6w which vitamin is low?
I have done al the hormetics mentioned, quite regularly but no improvement yet of energy. I feel 24/7 as if i haven’t eaten anything even though I have
I experienced that unusual hunger. It always surprised me that I didn't gain weight! I recently heard on the Long Covid podcast from a dietician who recovered, and she realized that at least for some people, we are burning through calories rapidly as our system in on high alert -- rapid heart rate for instance utilized a lot of calories, in a similar manner to patients with COPD. Dietary guidelines for COPD calls for increasing calorie intake. For me, frequent eating reduced my symptoms -- small amounts, and paying attention to what I was eating to reduce blood sugar spikes or drops. Now that my system is much more calm (I've gone from about 30% functioning to about 80% in the last year), I am able to nudge eating times a bit, but I think, at least for me, it would have been counter productive while I was still in the very high alert state/severe symptom state. I needed to first find an even lower baseline of cognitive/physical activity than what I had for the first 2 years, and work on my psychological/emotional stress response before trying to build up or lightly challenge my system slowly. I absolutely agree that what is being described here does seem to work, as I think it is what is allowing my recovery, but in my first 2 years I tried to begin building back before I was at the right starting point!
@@sparrowcrow interesting, do you have some example’s of the snacks you were eating?
@@sparrowcrow I work parttime 3/5 and I feel its to much still, crash a lot at night. But if i would work less it wouldnt be financially doable :/
@@nickm5760 My snacks at first I think were a little too carb based -- things like dried fruit, crackers and pretzels. About 18 months in I took a program (ANS Rewire) and realized my body was likely over reacting in response to things that quickly broke into sugar. So if I do eat some carbs I make them whole grain, and I pair it with protein/fat. Some low carb snacks for me are nuts, low sugar fruit (apples) and peanut butter, hard boiled eggs, good quality sliced meat and with bell pepper and avocado, cottage cheese.
@@nickm5760 I cannot know your situation, but for me, I held on to my job far longer than I was healthy for me. I had slowly built back to 5.5 hours a day -- but I was working laying down because I had such severe POTS and had to take breaks frequently because looking at screens made me feel like vomiting. Every day I had very severe, awful symptoms. I couldn't really socialize, barely could listen to music, cook or clean, and was housebound. At a certain point, I realized I COULD get better, but continuing to work was making it nearly impossible. I made the leap to leave my job last July. It was really scary financially, but it was what I needed to do under the severe symptom burden I was dealing with. I said at the time I was 65% recovered -- but this was another example of how distorted my reality had become by the illness. After stopping work and reducing my baseline to get symptoms into moderate zone, I realized I had been at 20-30% most of my illness, even if I tortuously had made myself work. This may not be your story, but I wanted to share it in case someone needs to hear it. After so long of dealing with severe symptoms, I had terrible tunnel vision related to my options!
I don’t understand. Is it a good thing for the body to fast when you are very sick?
It’s not.listen to your body.
At rare times it can be beneficial but when the body is struggling to produce energy u don’t want to fast u want to fast.
I did a 36 hours fast when I was in a very bad way post Covid. It was amazing. But I did try fasting for less periods prior to that long fast. Also I was not busy with other important things so could really be very mindful to how I was feeling at every moment and was ready to give up in case my body has strong negative reactions. But the fasting was great and many of my strange issues receded like hives, fatigue, etc. It did not cure me permanently, but taught me that occasionally fasting can totally reset our bodies once in awhile and that helps, I feel...
Depends on the person but for me definitely not. I feel much better eating frequently and focusing on keeping blood sugar stable. I get low blood sugar easily. Personally I think fasting more than 12 hours is too much stress on the body for most who are very sick.
✅🎙 Register for FREE Dr. Stein and Ralen Agle's Talk on Recovery Themes (June 6th 2024) - bit.ly/3x6cTlH
Sorry meant "recover"
stop with just yapping and fix me. hope isn't doing me good. all the optimism in the world isn't changing me. i need the steps to cure.
Just curious. I love dr. Stein but I want to ask her why, in another interview where there was a q&a she told a woman with me CFS that she couldn't reviver from fatigue? I was shocked and have since really been turn d off of dr. Stein given what a nocebo she gave this person
Oh no, that's so hard to hear! 😔 It sounds like some kind of miscommunication? Dr. Stein has always been super compassionate & helpful.
Could that have been a very old interview? Dr. Stein has been teaching about improving with ME/CFS for many years now. I don’t think she would have ever said recovery wasn’t possible.
@@RaelanAgle th-cam.com/video/lUwMZFnB0iM/w-d-xo.html
here is the interview. Go to around 53.38 for the question. I appreciated the conservative answer but it left a huge nocebo dangling there, in my mind anyway. Dr. Stein talked about ME and energy conditions being about damaged mitochondria. I agree with this except I see it as a "down stream" issue. In my experience with Long Covid, the energy piece was the first to resolve when I figured out mindset, acceptance, and slowly moving out of the freeze state I was in
@@amysin963 to be fair, I went back to the interview and she said "for some people" recovery may not be possible but it was the context of her remark which was a question from a viewer around applying neuroplasticity approaches to fatigue. Regardless, Dr. Stein is amazing and I do appreciate her
I’ve found a full ice bath isn’t necessary for me. Just pouring one water bottle of ice cold water over the back of my neck does a reset. It feels good.
I am a believer in far infrared niacin treatment as log as your able to replenish data and minerals being sweated out.
Much respect to the good doctor, but I found the Twinkies comment condendenscending. Not necessary for a very “deprived” of simple pleasures community. Just feedback. It felt like a shame blame stone Because it falls into the stereotype of what people think about people on disability that they just lie on their sofa, and eat Twinkies all day watching TV. Wrong audience.
If only I could get my gut my body, my brain to not react to a Twinkie. Then you want to shame my Twinkie? Just no.
I am soo absolutely impressed with Dr Stein!! I hope to some day offer affordable treatment options for my clients. Raelan, your commitment to connecting with people like doctor Stein is so inspiring. In and of itself, you are providing invaluable information for ME/CFS sufferers. It is treatment just to hear these interviews. 💕🌸