Louise seems like a gentle soul, and I’m happy she recovered. Not being allowed to express her emotions growing up stood out to me (child seen but not heard). Although it was considered normal to raise children back in the day, it is a form of abuse. Suppressing childhood emotions is a recipe for disaster.
It absolutely astounds me how the medical profession can totally dismiss people who have these horrific symptoms just because the dam tests don’t validate them! Sickening! Poor girl! Thanks for sharing your story you’re amazing! Thanks Raelan!
The struggle people go through ❤. We have to be our own advocate. There is help, you just have to find it. Channels like this help get the message out there 🌻
I very much appreciated her identifying the issue of fearing hope. I find myself strongly resisting trying any healing approach because if it fails again, the hopelessness will deepen unbearably.
I remember this feeling SO well and am sending you love and strength and whatever little bit of faith you need to go gently with whatever you try next. You can do this. There isn’t a single one of us with ME/CFS who can’t get well ❤
This was it exactly for me too @ginnyburley9552. I hope you can find something smaller to work with to try things out in a way that feels safe to you ❤️
Yes, after Perrin technique, Alex Howard, ReOrigin, acupuncture, CBT, pacing exercise and a number of other. I am healing. The daring to hope has at times destroyed me yet each time got me closer to home. Keep going my dear friend. With you every fail and every step. Stage bravest of hearts ❤️
Being incredibly ill and being disbelieved is a huge trauma. Often disbelief from family and medical professionals does so much harm to sufferes of ME. Its an incredibly painful condition on so many levels. Im so pleased there are now some things that help out there. I cant bring myself to go near another Dr.
I don't blame you and I'm sorry that you can relate. Part of our work is to help doctors to better understand the patient experience and prevent this kind of trauma. I hope that we can make a difference ❤️
@@louisemcallan kudos to you. Thank you for your work. I hope it reaches N.Z one day. We seem to still be in the dark ages here. Im very pleased to have stumbled acoss this chnnl yesterday. - Over 20 years of M.E and trying all sorts of things to help, 20 years on a benefit , sick with no help is astounding really. Im lucky I mananged to recover as much as I have alone...still a ways to go but lots here that can help I think. Thanks again for your work.
I’m traumatized because of being disbelief disrespected by doctors for years. Now I can’t go to doctors since 2018. I couldn’t even go for the regular check outs.
I’m so sorry you can relate to this. I have a lot of medical trauma as well and have been disbelieved to the point where I was denied appropriate care from social services and told that my very severe ME was a mental illness and my symptoms were psychological barriers. I suffered five years of daily crashes. I tend to avoid doctors and hospitals whenever possible. The trauma is HUGE and perpetrates the illness
Oh boy that "suppressing of childhood emotions" was sooooooo my life!! I always say it's like I was raised like a "cardboard cutout"--it really messed me up and now that I'm on the road to recovery I realize even more that I was "set up" to go through this later in life. Thank you for this talk--I loved listening to Louise!! She's very inspiring!! God bless.💕🙏🏼
Omg this is me. Except that I’m not recovering quickly. But the idea that we need to customize our recovery modalities via pain and TMS coaches outside of western medicine is so spot on. How do we wrangle all of this together to make it accessible to everyone? That’s my whole plan too. I know I am recovering, so why not visualize what comes next and talk about it at least. 🙏🏼💜🙏🏼
It has been a real pleasure to listen to you and watch you Louise. As I am struck by all the calm you eminate in your voice, face and body, you are some one who has truly 'landed' into yourself. I so understand how you were unable to interpret the messages you got at the start of your journey in a way that that information was informative and helpful. I recognise myself in that. As when we get ill in this way, our whole system is so seriously overstretched, that we don't have the capacity to process information of which we are totally unfamiliar with. Our brain, our body mind system is totally overwhelmed. That means we don't have access to our logic rational thinking. Who ever is dealing with people like us needs to hold that in mind. At the same time that is difficult for them too, as we look 'normal', we look 'together' whilst we are not. It's a condition which is so alien to others, you only can relate to it when you have closely witnessed it in some one you love, or experienced for yourself. Who ever is dealing with some one suffering from this condition needs to first acknowledge the suffering experienced, only then the stress level will be able to go down and only than can new information be taken on board and be processed. Then condition will need to be carefully explained, as you would do to a small frightened child, a combination of holding that child's hand and re assure they are not alone, and get them on board by slowly feeding in information in a paced manner. I like your description of nothing wrong with the 'hardware' but with the 'software'. I am sorry for all the suffering you have endured and so pleased you found your way through it. And amazing you too had such a quick recovery like your friend. For some people it works like that but not for every one. that doesn't it mean you do something 'wrong' it just means your system needs to find the right 'numbers' to crack the 'code'. Indeed to be respectful of your own proces ❣that's the conclusion I have come to for myself, rather then judging myself, as I have done for a while.
After 13 years I still haven't recovered, but this video is Really good at explaining a lot of the symptoms and experiences people face. ❤ Very glad we have these two women helping us understand what is going on with our bodies.
Wow. Just great that you are working with NHS Louise. I am currently recovering using tools from both Gupta, curable and the lightening process and am more hopeful than I have been in 10 years that recovery is possible. My dream is that, when recovered , I will try and bring this knowledge into NHS. Perhaps I will be in touch with you at some stage, to find out what you are doing in Scotland. I am from Northern Ireland. Thank you very much indeed for sharing your recovery journey. Just tremendous. Hugs and much love. Xxx
That must be soooo tough for you. Neither have been magic bullets for me, but I have slowly progressed from house bound to being able to enjoy 2hrs of activity in the morning and more in the afternoon and evening. The illness is now manageable. But there needs to be so much more research carried out on what is going on when brain retraining doesn't help a person. At times I have felt that I am invisible in the middle of an illness that is still largely invisible. Thankfully Raelan's interviews are bringing so much more into the light in all the complexity that we live with. I do so hope that you are able to find a process that helps you experience at least some improvement. Warm gentle hugs and love to you.
This is an exceptionally good interview... I was riveted at the edge of my seat for most of it. Knowing that people do change their mind in HUGE paradigm shifting ways needs more representation, and furthermore, knowing how those HUGE shifts come about and come through reveals a tremendous amount about the human capacity for change. Also, it's neat that both Raelan and Louise are 2019 twins in their year of recovering their health.
I feel the ‘pain’ of the journey you’ve talked about - I had seizures from 2006 and left in undiagnosed isolation with epileptic drugs, virtually shoved out of A&E at one time, until diagnosed with FND in 2020 just before getting Covid. Developed long Covid 2020, with management of Long Covid symptoms of FND have improved.
Wow its heartbreaking to hear all the incredible pain and suffering people go through on the healing journey , where you often feel alone and abandoned. My story is the though Im not that much better yet. Big hugs to all in this fights. Great talk ❤
Thank you,Louise for mentioning those of us who have tried these techniques and who haven't recovered from them. I am one of them-i've tried the Curable app,the LP,Gupta and ANS Rewire. I have thought maybe i need to try deeper trauma work next. Totally agree with the part at the end about processing emotions. Very helpful,thank you!
I'm sorry that you haven't found your answer yet, I do believe trauma and emotional work is needed where brain retaining has not helped, it is often a beautiful journey back to yourself. I work with so many people who have tried all these things and go on to heal by bringing in the emotional component, don't give up ♥️
Have you looked at Release CFS? I am in that programme and it goes into the subconscious trauma, but it tailored to fit ME/CFS and similar illnesses. Maybe that could help you too? Daniel has done an interview with Raelan a few years ago but improved the programme a lot since then. (I'm a happy participant and don't benefit from others joining)
Check out Irene Lyons work. Lots of free videos on how trauma gets stored and how we can sooth our systems. I think we all need varying layers of support
Wow! So, I have watched a bunch of these glorious interviews, and while they are each helpful in their own way, this one added a couple of important pieces. I think it took an articulate teacher to be able to format the process so well. A great coach IS a great teacher. I have always known that trauma and stress were a part of mine. I just didn't know how. People pleaser yes, major complex trauma yes, chronic stress, yes. But when she used the word "pretending" I finally understood. I was severely abused. My mother would yell and hit us as toddlers and children until we learned how to "pretend" like we were perfect little adults. How many of us were taught to "Behave" by forced repression of emotions? Emotions were not allowed. Repressed rage was a given. As an adult now, as a reflex, I always repress all of my emotions automatically so I could remain in my horrible job and my horrible relationships. "Oh but you are such a nice person..." Thank you so much for explaining this so beautifully!
@RaelanAgle Thank you Raelan for what you do for all of us. I realized early on that there was a curious connection to most ME/CFS cases. They seemed to mostly be in countries like US, UK, and Australia. Genes or social conditioning? Females are expected to keep smiling and be perfect and do it ALL while perfectly lovely 24/7. When the mouth cannot say "no" the body will.
@@emilywren3810yes! In my group we find our 'NO!' which is very empowering. Sending you lots of love for what you've been through and support for your healing 🙏🏼❤️
Thank you so much Louise & Raelan. Your description of your journey is so helpful Louise, especially the anti feelings towards brain retaining etc., which I am still struggling with. Listening to you unpacking those feelings has given me more encouragement to look again at the idea that symptoms can be functional and very real.
Great interview. The onset of my illness was exactly the same as yours..mine followed a vaccine but prior to that I had a lot of life stress..glad to see you recovered. I'm 3 years in and going from strength to strength.my last big crash was In 2022. I'm working full time but sometimes I do very little after work but I feel ok at the weekends. I was treated appallingly in the hospital once they realised mine were functional No help since
I first heard of Louise through the TMS community. From memory she experienced very similar early life emotional experiences/tension to my own...and also that same pattern of pushing and pushing through....until total collapse. :/ So pleased she is well now and able to help others find their way. She's a lovely person and has so much to offer.
OMG, Louise’s words about skepticism being ok hit so hard! I’m just at the beginning of a brain retraining program. I’m all in on the general concept. But there’s also a concept often comes along with brain retraining that “ you have to absolutely believe in it and absolutely believe that you will get better” if you don’t believe then you don’t have the right foundation to get better, because any doubt will undermine the process. That puts a huge amount of pressure on the individual, because it’s incredibly hard to just “make yourself have no doubts or fears.” And then you’re fighting that separate additional battle. You are not only fighting the battle against your symptoms , and not only just anticipating the brain retraining, you are now fighting the battle against your possible doubts or fears and worrying “ oh no if I can’t first convince myself totally then the brain retraining isn’t even going to work!” Being able to take any of that particular pressure off would be a great thing .
You do not need to believe it will work. You are setting up new neurons in the brain. It is a case of not saying/thinking I am sick but replacing it with I am healthy, my body is healthy.
That's it exactly. We need to meet ourselves where we are, don't we? Otherwise we are just adding to the conflict within. It's in seeing the results and feeling the shifts that we build trust in the process ❤️
in my opinion you don't have to believe completely, you just have to believe enough! that's how I've been improving. we need to take the internal pressure off ourselves as much as we can ♥
Such a great interview. Another gem Raelan! I see functional seizures in my therapy work all the time. Absolutely real. And having recovered from long Covid using mind/body methods and really sinking into the neurology of these symptoms, I have so much more compassion and empathy for my clients!
What a great interview. I'm so happy for Louise that she recovered after everything that she went through and is now able to support others. The part that left me a bit confused though is that for some people the mind-body approach isn't work after all, they try it but they don't get better. So are there ME symptoms from structural causes like CCI, and ME symptoms from a dysregulated autonomic system? EDIT: nevermind, I listened further and it's the emotions.
We need much more support for people generally so that they can fully access these techniques and find the right approach for them. In my experience, the emotional component can be the missing piece of the puzzle 🧩
the most hopeful part about this is that i have been dealing with the exact same symptoms for the exact same amount of time (8 years of seizures, migraines, etc)...i've had such conflicting feedback from docs, therapists, and everyone else for YEARS, it's been so hard to know where to turn for guidance. i've been doing mind body work for several months now while at the same time listening to docs who are telling me how important it is to remove the toxins, so as you can imagine, i haven't had success just yet. right now i'm just in a place of letting go more and more and trusting in my body's ability to come back into balance without me chasing the symptoms. any further guidance or suggestions would be amazing. thanks for this success story!
I’m following Becca Kennedy’s class, who has also been on to the podcast. She is the only one that knows how to do brain retraining based on newest Harvard science. She was lead of long covid clinics and knows the key to recovery for the these symptoms. She is amazing, im already making so much progress!!
That sounds like an amazing start @gheewhizz, letting go more and more and building trust in your body. Sometimes we need to give ourselves time to get used to these ideas- it is a completely new way of looking at our health!
it's funny that she mentions clarity. That's my goal with recovery. To get this heavy weight off my heart and my mind and my muscles and have some clarity.
I can really relate. Emotional expression really helped me to let go of the weight in my heart and find that clarity. We have all been through so much 🌸
Wow! This was an outstanding interview! It hit me so deeply that at one point, I was teary-eyed, recalling my own experiences with a similar illness. Thank you, Raelan and Louise, for your willingness to help all those who struggle with chronic illness.
Thank you so much Louise. I share a similar story to yours regarding your ME journey. I've been ill now for 15 years. I was very much against any type of brain retraining courses too. This past year I've been more open to exploring trauma as a contributing factor as I didn't think I had anything significant either. I came across Fiona's story on twitter, read her article and interview. I read more about MBS and saw the scientific validation behind curable that it made me hopeful and intrigued to try mind body therapy. I decided I needed a bit more than an app and went with Rebecca Tolin's course. I'm now a few weeks in and feel so at ease in my body, and SO hopeful of recovery! I'm watching recovery stories using these techniques regularly and was passed yours by a friend also doing Rebecca's course. I'm so grateful she sent it me, you're the friend Fiona refers to in her interview! I resonate so much with your story and you come across so genuine and kind, just as Fiona does, that makes me feel so confident in this approach and that I will recover. Thank you for sharing your story and inspiring others going through this journey ❤
This is lovely to read Kat- especially the bit about you being more at ease in your body. 🎉 What an absolutely huge shift you've had and I'm sure it's just the beginning. Lovely to think of Fiona and I, Rebecca and Raelan all on your team. Good luck ♥️♥️
@@RaelanAgle thank you 😊 and for all that you do to spread awareness of recovery. It's so important to see this from others that have been in the same situation. I'll keep watching for more inspiration!
What a brilliant interview! Louise is so inspiring - I really resonated with a lot of what she was saying and she explained it so well. What a great person to help anyone struggling with chronic pain.
Great interview, thanks. Louise has such a lovely peaceful presence. And so very true that theres SO MUCH NOISE in our healing community-most of it is really lacking i have to say, after doing 5 different programs over 6 years. It really is the wild west, although i think coaches have a genuine desire to help it falls way short because they don’t really know how they got better- it was a mish mash of things so they end up teaching that. Then we end up with the immense overwhelming amount of info/ tools/ opinion/ advice, which jusy serves to stress the person out even more!! Its good to hear Louise mention the TMS approach as the way to treating CFS and ALL of these mind body conditions. Theres not nearly enough noise about that!! Im just starting to look at emotions and somatics more now after brain retraining to death, and im sure its the missing piece, it just makes sense. Ps. It would have been great to hear what it was on Curable that helped Louise recover her migraines and symptoms in such a miraculously short period of time!? Thats was the meat of the sandwich no? Anyway thank you both. ❤❤
This makes sense that knowledge of TMS and using Curable would be the final piece. Doing brain retraining really activated the stress response in me. My system really balked at it *until* I learned about TMS and finally understood how it worked and that I didn’t have to do it perfectly for it to work. Good luck to you on your journey!
@@Ladybug501 IMO brain training in itself is helpful but only when it’s used the right way.. often it’s encouraged in a way that just ends up reinforcing a state of fear but when used together with other practices and with the TMS approach, I think it can be useful
This can definitely happen with brain retraining. In my group programme we work with the emotions first, and once safety and grounding has been established then we do the brain retraining. I would love to see it taught this way round more widely.
@juna8796 the most helpful curable tools were - somatic tracking for the migraines and other 'tangible' symptoms, predictive coding and reframing for post exertional malaise and safe space/calming the amygdala for building safety. I also had a very strong background in mindfulness which underpinned it all- I was able to truly meet my body once I knew it was safe to do so.
Congrats on your recovery, Louise! If the brain re-training course I'm currently doing doesn't do the trick for me, I might need your help! It was interesting to hear your perspective on all this, so really appreciate you doing the interview. Thank you, ladies! 💛🧡💜
Thank you for sharing so much. The part about emotions is very eye opening. I will be trying more to feel all my emotions, whenever I have them. You inspired me with your explanation about emotions.
Such a beautiful interview that will help so many people. And so brave to share so openly. If people are sceptical of brain retraining and what it has to offer, this is an interview to watch and mull over. The severity of symptoms that cleared up is amazing.
Thank you ❤️ Raelan for your helpful channel. I can relate in many ways. I'm in the beginning process of healing. I finally have accepted that brain retraining is key. From one Louise to another, thank you ❤
I asked my Dr about CFS , that I thought had it, she believed me but then she told me, no diagnosis, no treatment, no cure. She suggested to go look on the internet! So here I am...Dr's orders😊
I was so excited and hopeful right up to the point that she said the Curable app. I used it for 6+ months and had zero success with my migraines or fatigue. 😢
This is extremely common. Have you listened to the whole video? I do go on to say that for many people they have tried many things (including curable) and are still not better. This is where the emotional processing work can often help. Don't give up hope ❤
@@louisemcallan Would you mind sharing how you used Curable to shift your fatigue? I've tried the App as well as brain retraining. The most helpful thing is probably the guided mind body meditation there (exploring emotions). I found the other exercises rather activating and less helpful...
Great interview.Did I hear right that Louise recovered in 2 and a half weeks?If so,brilliant but my brain looks for ways to 'not believe'the mind body approach even though it does make sense.Some clarification on timeline to recovery would be reassuring to hear.
I didn't believe it either, if that helps! I kept waiting for the crash but it never came. Everyone is different and one person's timeline will not be the same as another's. My symptoms shifted in 2.5 weeks but for months after while I navigated the challenges of getting back out into the world, which was completely overwhelming, my body sent me alarm signals here and there. This was the time I was doing my deep dive into nervous system work and emotional precessing - when I learned to truly feel and express emotion it was a game changer.
Wow it sounds very much like my illness 13 years ago in Denmark. No one would help and the doctors ridiculed me. I never really got well after the first two worst years where I couldnt even lift my child or some grocery or touch cold things and where I had oxygen failure attacks all the time and a lot of other types of attacks.
I suspect that cases that don't seem to heal (like my own), involve undiagnosed complex comorbid things like sjogren's, MS, SFN, EDS, CCI, IIH, pathogens etc. They aren't as amenable to mental factors. And they're common in me/cfs.
Hi 👋🏼 I basically just worked my way through the app but the thing that helped most for the migraines was applying somatic tracking when I felt them coming on, calming the Amygdala during an attack and understanding predictive coding 🙂
Have you ever made a video about the different helpful apps people use in their recovery? I’ve mentioned before that I use Visible app but I never see other people mentioning it in the comments. This video is my first time hearing about Curable app. I wonder what other app resources are out there.
Wish these ladies would also invest some of their time/financial gains in promoting Biomedical Research 🙏🏻 In the end 8 years of severe illness until recovery should be sped up. Patients are dying every day/week ! Emotions, BPS, Body-Mind etc is really the easy part Biochemical is the Key !
Raelan, I’m curious to know which Brain Retraining course you’d recommend? There are so many! I would imagine you incorporate a little of all your interviews into your course? I’m confused about which to try or to just try Curable? I am single and haven’t worked since 2020 so I need to spend money wisely. Thank you for all the inspirational videos. I will not give up hope. ❤
Have a look at Release CFS, see if that's your cup of tea. It has a very broad approach, with ellements of mindfulness, brain retraining, breath work, and many others. You go quite deep to the root causes but you learn different techniques so you don't have to choose. It's not a very well known course that's why I'm pointing it out. I went from mainly bedbound to walking 10k on a beach without PEM in just over 2 months, I highly recommend!
hi, Raelan, thx for sharing, I'm from Jakarta Indonesia, it's like not a real issue for ME_CFS in Indonesia, I hope to find friend and community in Indonesia. I feel desperate to find friend here.
It irks me that so many people do these interviews and then immediately plug their counseling. It sometimes feels like some are just here to sell something and I start to loose trust in these interviews. Are they telling me what I want to hear so that I buy their product?
I totally get you, but please don't let it make you suspicious of the amazing resources. My primary motivation for these interviews is to get the message out there so that people can see there may be a way out for them, and to share what I have been through so that others may suffer less. There are many free resources to try and many people who find improvement through those free resources. But some people need the extra support and guidance of a professional and need to know we are out here and able to help ❤️
It's a bit confusing as ime diagnosed chronic migraine CFS fybromyalgia but apparently you can't be diagnosed with CFS with chronic mygraine as that's the cause of the symptoms😊
It’s not science though is it and I also appreciate for the sake of enlarging your pockets you need to keep with narrative that “recovery isn’t possible” but no one thinks that, and many people naturally improve. I never relate to being scared of symptoms so can understand if you’re dealing with unresolved fear how you can recover from your mental health condition.
It's great that you have not experienced that narrative. I used to think that people were talking about fear of symptoms too and found that quite insulting because I never related to that- as I discuss in the video I was in a state of acceptance of my symptoms. The role of fear is more about the natural functioning of the autonomic nervous system. Although we might not agree on things, it's incorrect to say that it's not science- there is a wealth of neuroscience behind that and lots of science behind neuroplasticity, and a growing understanding of the role of emotions and the immune response. Monty Lyman's new book 'the immune mind' is an accessible place to start. Your experience is valid and so is mine. ❤️
They are both good in different ways, Alan Gordon's book is great because it has lots of relatable examples and gives you practical tools to try, based on Pain Reprocessing Therapy. Howard Schubiner's book 'unlearn your pain' is also very useful, it's more based on emotional expression and you can read the first section for free on his website 🙂
I know, nobody was more surprised than me about that! But it really is amazing how quickly neural pathways can be rewired. I was suspicious of it for a long time, kept waiting for the crash, thinking it would come tomorrow, next week, next month, but 5 years later and it never did. The brain is truly amazing 🙂
I think she had a breakthrough in understanding, and that went quick, but she took a while to still manage symptoms. It wasn't just All better and all gone instantly....it took time.
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Louise seems like a gentle soul, and I’m happy she recovered. Not being allowed to express her emotions growing up stood out to me (child seen but not heard). Although it was considered normal to raise children back in the day, it is a form of abuse. Suppressing childhood emotions is a recipe for disaster.
It absolutely astounds me how the medical profession can totally dismiss people who have these horrific symptoms just because the dam tests don’t validate them! Sickening! Poor girl! Thanks for sharing your story you’re amazing! Thanks Raelan!
The struggle people go through ❤. We have to be our own advocate. There is help, you just have to find it. Channels like this help get the message out there 🌻
I very much appreciated her identifying the issue of fearing hope. I find myself strongly resisting trying any healing approach because if it fails again, the hopelessness will deepen unbearably.
I remember this feeling SO well and am sending you love and strength and whatever little bit of faith you need to go gently with whatever you try next. You can do this. There isn’t a single one of us with ME/CFS who can’t get well ❤
This was it exactly for me too @ginnyburley9552. I hope you can find something smaller to work with to try things out in a way that feels safe to you ❤️
If you don’t mind me asking and only if you feel like replying, could you tell me what you have tried ?
Omg. Finally, someone gets it😢
Yes, after Perrin technique, Alex Howard, ReOrigin, acupuncture, CBT, pacing exercise and a number of other. I am healing. The daring to hope has at times destroyed me yet each time got me closer to home. Keep going my dear friend. With you every fail and every step. Stage bravest of hearts ❤️
Being incredibly ill and being disbelieved is a huge trauma. Often disbelief from family and medical professionals does so much harm to sufferes of ME. Its an incredibly painful condition on so many levels. Im so pleased there are now some things that help out there. I cant bring myself to go near another Dr.
I don't blame you and I'm sorry that you can relate. Part of our work is to help doctors to better understand the patient experience and prevent this kind of trauma. I hope that we can make a difference ❤️
@@louisemcallan kudos to you. Thank you for your work. I hope it reaches N.Z one day. We seem to still be in the dark ages here. Im very pleased to have stumbled acoss this chnnl yesterday. - Over 20 years of M.E and trying all sorts of things to help, 20 years on a benefit , sick with no help is astounding really. Im lucky I mananged to recover as much as I have alone...still a ways to go but lots here that can help I think. Thanks again for your work.
I’m traumatized because of being disbelief disrespected by doctors for years. Now I can’t go to doctors since 2018. I couldn’t even go for the regular check outs.
The gaslighting is horrible. Not being able to count on the people who are supposed to love and support you is a horrific feeling.
I’m so sorry you can relate to this. I have a lot of medical trauma as well and have been disbelieved to the point where I was denied appropriate care from social services and told that my very severe ME was a mental illness and my symptoms were psychological barriers. I suffered five years of daily crashes. I tend to avoid doctors and hospitals whenever possible. The trauma is HUGE and perpetrates the illness
Oh boy that "suppressing of childhood emotions" was sooooooo my life!! I always say it's like I was raised like a "cardboard cutout"--it really messed me up and now that I'm on the road to recovery I realize even more that I was "set up" to go through this later in life. Thank you for this talk--I loved listening to Louise!! She's very inspiring!! God bless.💕🙏🏼
Louise is spot on. I have tried lots of modalities and am now looking to emotional work. I find it really hard to feel emotions in my body.
You've got this, Dottie ❤️❤️ I'm rooting for you to find that final puzzle piece!
I did too so I'm sending support and hope because it's a skill that can be learned. 🌸
Thank you ladies, this is by far the BEST conversation I’ve listened to since having ME/CFS (and I’ve listened to quite a few!) Thank you so much 💜
Omg this is me. Except that I’m not recovering quickly. But the idea that we need to customize our recovery modalities via pain and TMS coaches outside of western medicine is so spot on. How do we wrangle all of this together to make it accessible to everyone? That’s my whole plan too. I know I am recovering, so why not visualize what comes next and talk about it at least. 🙏🏼💜🙏🏼
Talking about it honestly and with compassion is a great start I think ❤️
I am near tears listening to this. So inspirational.
It has been a real pleasure to listen to you and watch you Louise. As I am struck by all the calm you eminate in your voice, face and body, you are some one who has truly 'landed' into yourself. I so understand how you were unable to interpret the messages you got at the start of your journey in a way that that information was informative and helpful. I recognise myself in that. As when we get ill in this way, our whole system is so seriously overstretched, that we don't have the capacity to process information of which we are totally unfamiliar with. Our brain, our body mind system is totally overwhelmed. That means we don't have access to our logic rational thinking. Who ever is dealing with people like us needs to hold that in mind. At the same time that is difficult for them too, as we look 'normal', we look 'together' whilst we are not. It's a condition which is so alien to others, you only can relate to it when you have closely witnessed it in some one you love, or experienced for yourself. Who ever is dealing with some one suffering from this condition needs to first acknowledge the suffering experienced, only then the stress level will be able to go down and only than can new information be taken on board and be processed. Then condition will need to be carefully explained, as you would do to a small frightened child, a combination of holding that child's hand and re assure they are not alone, and get them on board by slowly feeding in information in a paced manner. I like your description of nothing wrong with the 'hardware' but with the 'software'. I am sorry for all the suffering you have endured and so pleased you found your way through it. And amazing you too had such a quick recovery like your friend. For some people it works like that but not for every one. that doesn't it mean you do something 'wrong' it just means your system needs to find the right 'numbers' to crack the 'code'. Indeed to be respectful of your own proces ❣that's the conclusion I have come to for myself, rather then judging myself, as I have done for a while.
After 13 years I still haven't recovered, but this video is Really good at explaining a lot of the symptoms and experiences people face. ❤ Very glad we have these two women helping us understand what is going on with our bodies.
Wow. Just great that you are working with NHS Louise. I am currently recovering using tools from both Gupta, curable and the lightening process and am more hopeful than I have been in 10 years that recovery is possible. My dream is that, when recovered , I will try and bring this knowledge into NHS. Perhaps I will be in touch with you at some stage, to find out what you are doing in Scotland. I am from Northern Ireland. Thank you very much indeed for sharing your recovery journey. Just tremendous. Hugs and much love. Xxx
Cheering you on with your recovery and yes, would be lovely to connect ❤️
One day Louise! Meanwhile I am cheering you on in the work you are doing. Xx
I have done both The Lightning Process and the Gupta Programme. I gave both my all but I’m still in bed over 12 years later.
That must be soooo tough for you. Neither have been magic bullets for me, but I have slowly progressed from house bound to being able to enjoy 2hrs of activity in the morning and more in the afternoon and evening. The illness is now manageable. But there needs to be so much more research carried out on what is going on when brain retraining doesn't help a person. At times I have felt that I am invisible in the middle of an illness that is still largely invisible. Thankfully Raelan's interviews are bringing so much more into the light in all the complexity that we live with. I do so hope that you are able to find a process that helps you experience at least some improvement. Warm gentle hugs and love to you.
This is an exceptionally good interview... I was riveted at the edge of my seat for most of it. Knowing that people do change their mind in HUGE paradigm shifting ways needs more representation, and furthermore, knowing how those HUGE shifts come about and come through reveals a tremendous amount about the human capacity for change. Also, it's neat that both Raelan and Louise are 2019 twins in their year of recovering their health.
I think we all have to be open to change and able to admit when we were wrong. (And thank goodness I was!) 🌸♥️
Thank you Louise and Raelan. A very inspiring recovery story. Great that you working with the NHS.
I feel the ‘pain’ of the journey you’ve talked about - I had seizures from 2006 and left in undiagnosed isolation with epileptic drugs, virtually shoved out of A&E at one time, until diagnosed with FND in 2020 just before getting Covid. Developed long Covid 2020, with management of Long Covid symptoms of FND have improved.
Louise is not only a lovely young woman, she is very articulate.
Wow its heartbreaking to hear all the incredible pain and suffering people go through on the healing journey , where you often feel alone and abandoned. My story is the though Im not that much better yet. Big hugs to all in this fights. Great talk ❤
Thank you,Louise for mentioning those of us who have tried these techniques and who haven't recovered from them. I am one of them-i've tried the Curable app,the LP,Gupta and ANS Rewire. I have thought maybe i need to try deeper trauma work next. Totally agree with the part at the end about processing emotions. Very helpful,thank you!
I'm sorry that you haven't found your answer yet, I do believe trauma and emotional work is needed where brain retaining has not helped, it is often a beautiful journey back to yourself. I work with so many people who have tried all these things and go on to heal by bringing in the emotional component, don't give up ♥️
Have you looked at Release CFS? I am in that programme and it goes into the subconscious trauma, but it tailored to fit ME/CFS and similar illnesses. Maybe that could help you too? Daniel has done an interview with Raelan a few years ago but improved the programme a lot since then. (I'm a happy participant and don't benefit from others joining)
Check out Irene Lyons work. Lots of free videos on how trauma gets stored and how we can sooth our systems. I think we all need varying layers of support
Wow! So, I have watched a bunch of these glorious interviews, and while they are each helpful in their own way, this one added a couple of important pieces. I think it took an articulate teacher to be able to format the process so well. A great coach IS a great teacher. I have always known that trauma and stress were a part of mine. I just didn't know how. People pleaser yes, major complex trauma yes, chronic stress, yes. But when she used the word "pretending" I finally understood. I was severely abused. My mother would yell and hit us as toddlers and children until we learned how to "pretend" like we were perfect little adults. How many of us were taught to "Behave" by forced repression of emotions? Emotions were not allowed. Repressed rage was a given. As an adult now, as a reflex, I always repress all of my emotions automatically so I could remain in my horrible job and my horrible relationships. "Oh but you are such a nice person..." Thank you so much for explaining this so beautifully!
Emily ❤️ My heart goes out to you. I'm so sorry you had to go through all of this.
Wishing you all the happiness, health, and joy in the world!
@RaelanAgle Thank you Raelan for what you do for all of us. I realized early on that there was a curious connection to most ME/CFS cases. They seemed to mostly be in countries like US, UK, and Australia. Genes or social conditioning? Females are expected to keep smiling and be perfect and do it ALL while perfectly lovely 24/7. When the mouth cannot say "no" the body will.
@@emilywren3810yes! In my group we find our 'NO!' which is very empowering. Sending you lots of love for what you've been through and support for your healing 🙏🏼❤️
Thank you so much Louise & Raelan. Your description of your journey is so helpful Louise, especially the anti feelings towards brain retaining etc., which I am still struggling with.
Listening to you unpacking those feelings has given me more encouragement to look again at the idea that symptoms can be functional and very real.
Great interview. The onset of my illness was exactly the same as yours..mine followed a vaccine but prior to that I had a lot of life stress..glad to see you recovered. I'm 3 years in and going from strength to strength.my last big crash was In 2022. I'm working full time but sometimes I do very little after work but I feel ok at the weekends. I was treated appallingly in the hospital once they realised mine were functional
No help since
I first heard of Louise through the TMS community. From memory she experienced very similar early life emotional experiences/tension to my own...and also that same pattern of pushing and pushing through....until total collapse. :/
So pleased she is well now and able to help others find their way. She's a lovely person and has so much to offer.
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OMG, Louise’s words about skepticism being ok hit so hard! I’m just at the beginning of a brain retraining program. I’m all in on the general concept. But there’s also a concept often comes along with brain retraining that “ you have to absolutely believe in it and absolutely believe that you will get better” if you don’t believe then you don’t have the right foundation to get better, because any doubt will undermine the process.
That puts a huge amount of pressure on the individual, because it’s incredibly hard to just “make yourself have no doubts or fears.” And then you’re fighting that separate additional battle.
You are not only fighting the battle against your symptoms , and not only just anticipating the brain retraining, you are now fighting the battle against your possible doubts or fears and worrying “ oh no if I can’t first convince myself totally then the brain retraining isn’t even going to work!”
Being able to take any of that particular pressure off would be a great thing .
You do not need to believe it will work. You are setting up new neurons in the brain. It is a case of not saying/thinking I am sick but replacing it with I am healthy, my body is healthy.
Listening to Dan Buglio's channel may help you build that foundation! Happy healing.
That's it exactly. We need to meet ourselves where we are, don't we? Otherwise we are just adding to the conflict within. It's in seeing the results and feeling the shifts that we build trust in the process ❤️
in my opinion you don't have to believe completely, you just have to believe enough! that's how I've been improving. we need to take the internal pressure off ourselves as much as we can ♥
Such a great interview. Another gem Raelan! I see functional seizures in my therapy work all the time. Absolutely real. And having recovered from long Covid using mind/body methods and really sinking into the neurology of these symptoms, I have so much more compassion and empathy for my clients!
Thank you - once we understand the nervous system component, compassion and empathy come naturally. 🧡 🧡
It really helps to have been there, doesn't it? ♥️
What a great interview. I'm so happy for Louise that she recovered after everything that she went through and is now able to support others. The part that left me a bit confused though is that for some people the mind-body approach isn't work after all, they try it but they don't get better. So are there ME symptoms from structural causes like CCI, and ME symptoms from a dysregulated autonomic system? EDIT: nevermind, I listened further and it's the emotions.
We need much more support for people generally so that they can fully access these techniques and find the right approach for them. In my experience, the emotional component can be the missing piece of the puzzle 🧩
the most hopeful part about this is that i have been dealing with the exact same symptoms for the exact same amount of time (8 years of seizures, migraines, etc)...i've had such conflicting feedback from docs, therapists, and everyone else for YEARS, it's been so hard to know where to turn for guidance. i've been doing mind body work for several months now while at the same time listening to docs who are telling me how important it is to remove the toxins, so as you can imagine, i haven't had success just yet. right now i'm just in a place of letting go more and more and trusting in my body's ability to come back into balance without me chasing the symptoms. any further guidance or suggestions would be amazing. thanks for this success story!
I’m following Becca Kennedy’s class, who has also been on to the podcast. She is the only one that knows how to do brain retraining based on newest Harvard science. She was lead of long covid clinics and knows the key to recovery for the these symptoms. She is amazing, im already making so much progress!!
That sounds like an amazing start @gheewhizz, letting go more and more and building trust in your body. Sometimes we need to give ourselves time to get used to these ideas- it is a completely new way of looking at our health!
it's funny that she mentions clarity. That's my goal with recovery. To get this heavy weight off my heart and my mind and my muscles and have some clarity.
I can really relate. Emotional expression really helped me to let go of the weight in my heart and find that clarity. We have all been through so much 🌸
@@louisemcallan totally. We have to let it go and let it out.
@@louisemcallan thank you Louise
What a brilliant interview. Thank you very much indeed.
Wow! This was an outstanding interview! It hit me so deeply that at one point, I was teary-eyed, recalling my own experiences with a similar illness. Thank you, Raelan and Louise, for your willingness to help all those who struggle with chronic illness.
Much appreciated, Pam! ❤️ ❤️
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Thank you so much Louise. I share a similar story to yours regarding your ME journey. I've been ill now for 15 years. I was very much against any type of brain retraining courses too. This past year I've been more open to exploring trauma as a contributing factor as I didn't think I had anything significant either.
I came across Fiona's story on twitter, read her article and interview. I read more about MBS and saw the scientific validation behind curable that it made me hopeful and intrigued to try mind body therapy.
I decided I needed a bit more than an app and went with Rebecca Tolin's course. I'm now a few weeks in and feel so at ease in my body, and SO hopeful of recovery!
I'm watching recovery stories using these techniques regularly and was passed yours by a friend also doing Rebecca's course. I'm so grateful she sent it me, you're the friend Fiona refers to in her interview! I resonate so much with your story and you come across so genuine and kind, just as Fiona does, that makes me feel so confident in this approach and that I will recover.
Thank you for sharing your story and inspiring others going through this journey ❤
Thanks so much for sharing your story, Kat! You've got this 🧡 🧡 Sending love to you and Fiona! 💕
This is lovely to read Kat- especially the bit about you being more at ease in your body. 🎉 What an absolutely huge shift you've had and I'm sure it's just the beginning.
Lovely to think of Fiona and I, Rebecca and Raelan all on your team. Good luck ♥️♥️
@@louisemcallan what an amazing team that is! Thank you 😊
@@RaelanAgle thank you 😊 and for all that you do to spread awareness of recovery. It's so important to see this from others that have been in the same situation. I'll keep watching for more inspiration!
This really resonated with me. Such a powerful interview because Louise expresses her journey so clearly. Thank you.
Wow!! What a rockstar 🤩 This interview resonated with my healing journey almost 100% Thank you both for a fantastic and helpful interview 👏👏👏
Will have to open that Curable app 👍 Thank you to you both ❤
The curable app was so helpful for me too!
100%, this is a lifesaver!
What are The fees? I dont have The energi to reade all The text in The Curable
What a brilliant interview! Louise is so inspiring - I really resonated with a lot of what she was saying and she explained it so well. What a great person to help anyone struggling with chronic pain.
Great interview, thanks. Louise has such a lovely peaceful presence.
And so very true that theres SO MUCH NOISE in our healing community-most of it is really lacking i have to say, after doing 5 different programs over 6 years.
It really is the wild west, although i think coaches have a genuine desire to help it falls way short because they don’t really know how they got better- it was a mish mash of things so they end up teaching that. Then we end up with the immense overwhelming amount of info/ tools/ opinion/ advice, which jusy serves to stress the person out even more!!
Its good to hear Louise mention the TMS approach as the way to treating CFS and ALL of these mind body conditions. Theres not nearly enough noise about that!! Im just starting to look at emotions and somatics more now after brain retraining to death, and im sure its the missing piece, it just makes sense.
Ps. It would have been great to hear what it was on Curable that helped Louise recover her migraines and symptoms in such a miraculously short period of time!? Thats was the meat of the sandwich no?
Anyway thank you both. ❤❤
This makes sense that knowledge of TMS and using Curable would be the final piece. Doing brain retraining really activated the stress response in me. My system really balked at it *until* I learned about TMS and finally understood how it worked and that I didn’t have to do it perfectly for it to work. Good luck to you on your journey!
@@Ladybug501 IMO brain training in itself is helpful but only when it’s used the right way.. often it’s encouraged in a way that just ends up reinforcing a state of fear but when used together with other practices and with the TMS approach, I think it can be useful
This can definitely happen with brain retraining. In my group programme we work with the emotions first, and once safety and grounding has been established then we do the brain retraining. I would love to see it taught this way round more widely.
@juna8796 the most helpful curable tools were - somatic tracking for the migraines and other 'tangible' symptoms, predictive coding and reframing for post exertional malaise and safe space/calming the amygdala for building safety. I also had a very strong background in mindfulness which underpinned it all- I was able to truly meet my body once I knew it was safe to do so.
@@louisemcallan great thanks for coming back and sharing 🤗
Congrats on your recovery, Louise! If the brain re-training course I'm currently doing doesn't do the trick for me, I might need your help! It was interesting to hear your perspective on all this, so really appreciate you doing the interview.
Thank you, ladies! 💛🧡💜
Cheering you on ❤️
@@louisemcallan 🙏💙
Thank you for sharing so much. The part about emotions is very eye opening. I will be trying more to feel all my emotions, whenever I have them. You inspired me with your explanation about emotions.
Good luck 🥰
I wish I lived in Scotland. What a great interview.
This was absolutely brilliant. Thank you both. ❤
Such a beautiful interview that will help so many people. And so brave to share so openly. If people are sceptical of brain retraining and what it has to offer, this is an interview to watch and mull over. The severity of symptoms that cleared up is amazing.
So helpfull - thank you!!
Thank you ❤️ Raelan for your helpful channel.
I can relate in many ways. I'm in the beginning process of healing.
I finally have accepted that brain retraining is key.
From one Louise to another, thank you ❤
Wishing you all the best for your healing 🙏🏼
She's fab! Thanks
Have you considered releasing an audio version of your book? It would be great for folks that are struggling to hold a book / e-reader.
I asked my Dr about CFS , that I thought had it, she believed me but then she told me, no diagnosis, no treatment, no cure. She suggested to go look on the internet! So here I am...Dr's orders😊
I am so glad there are so many resources now available! Wishing you so much luck on your journey! ♥️
Thanks for the encouragement, tough to sit through with Brain Fog...but I'll keep on @@louisemcallan
Thank you ❤
I was so excited and hopeful right up to the point that she said the Curable app. I used it for 6+ months and had zero success with my migraines or fatigue. 😢
This is extremely common. Have you listened to the whole video? I do go on to say that for many people they have tried many things (including curable) and are still not better. This is where the emotional processing work can often help. Don't give up hope ❤
@@louisemcallan Would you mind sharing how you used Curable to shift your fatigue? I've tried the App as well as brain retraining. The most helpful thing is probably the guided mind body meditation there (exploring emotions). I found the other exercises rather activating and less helpful...
Thanks for sharing❤
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Thank you❤❤❤
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Great interview.Did I hear right that Louise recovered in 2 and a half weeks?If so,brilliant but my brain looks for ways to 'not believe'the mind body approach even though it does make sense.Some clarification on timeline to recovery would be reassuring to hear.
I didn't believe it either, if that helps! I kept waiting for the crash but it never came. Everyone is different and one person's timeline will not be the same as another's. My symptoms shifted in 2.5 weeks but for months after while I navigated the challenges of getting back out into the world, which was completely overwhelming, my body sent me alarm signals here and there. This was the time I was doing my deep dive into nervous system work and emotional precessing - when I learned to truly feel and express emotion it was a game changer.
Thank you for taking the time to reply Louise.Your story gives me hope that I can recover from long Covid after 2 and a half years.
Wow it sounds very much like my illness 13 years ago in Denmark. No one would help and the doctors ridiculed me. I never really got well after the first two worst years where I couldnt even lift my child or some grocery or touch cold things and where I had oxygen failure attacks all the time and a lot of other types of attacks.
So sorry for what you went through ❤
I suspect that cases that don't seem to heal (like my own), involve undiagnosed complex comorbid things like sjogren's, MS, SFN, EDS, CCI, IIH, pathogens etc. They aren't as amenable to mental factors. And they're common in me/cfs.
We need much more research into this to understand more about what is going on. I'm sorry that you haven't found your answer yet ♥️
I wish she had been given the opportunity to explain how she applied curable to get rid of migraines.
Hi 👋🏼 I basically just worked my way through the app but the thing that helped most for the migraines was applying somatic tracking when I felt them coming on, calming the Amygdala during an attack and understanding predictive coding 🙂
Thank you! I have benefited greatly from somatic tracking. Curable might be a good addition to my regimen.
Have you ever made a video about the different helpful apps people use in their recovery?
I’ve mentioned before that I use Visible app but I never see other people mentioning it in the comments. This video is my first time hearing about Curable app. I wonder what other app resources are out there.
Also this is a great video. Thank you for giving our community hope! ❤
Thoughts on neurofeedback therapy?
Wish these ladies would also invest some of their time/financial gains in promoting Biomedical Research 🙏🏻 In the end 8 years of severe illness until recovery should be sped up. Patients are dying every day/week !
Emotions, BPS, Body-Mind etc is really the easy part
Biochemical is the Key !
Raelan,
I’m curious to know which Brain Retraining course you’d recommend? There are so many! I would imagine you incorporate a little of all your interviews into your course? I’m confused about which to try or to just try Curable? I am single and haven’t worked since 2020 so I need to spend money wisely. Thank you for all the inspirational videos. I will not give up hope. ❤
Have a look at Release CFS, see if that's your cup of tea. It has a very broad approach, with ellements of mindfulness, brain retraining, breath work, and many others. You go quite deep to the root causes but you learn different techniques so you don't have to choose. It's not a very well known course that's why I'm pointing it out. I went from mainly bedbound to walking 10k on a beach without PEM in just over 2 months, I highly recommend!
THANK YOU 💐
You are so welcome! ❤️ ❤️
How do people manage financially to survive while sick this long? I'm bedbound and running out of money. Not anywhere to go then...
hi, Raelan, thx for sharing, I'm from Jakarta Indonesia, it's like not a real issue for ME_CFS in Indonesia, I hope to find friend and community in Indonesia. I feel desperate to find friend here.
Hey Merrynsia! Might be worth checking my FB group to see if there's anyone from Jakarta? 🧡 🧡 Thinking of you and hoping for the best!
@@RaelanAgle i just joint, but still not easy find friend, please teach me..
Can I share this interview with someone who isn't a member?
Hey Hilary, absolutely!
I always share interviews with you guys first, and then they're available for everyone else after a few days.
Great.
It irks me that so many people do these interviews and then immediately plug their counseling.
It sometimes feels like some are just here to sell something and I start to loose trust in these interviews.
Are they telling me what I want to hear so that I buy their product?
I totally get you, but please don't let it make you suspicious of the amazing resources. My primary motivation for these interviews is to get the message out there so that people can see there may be a way out for them, and to share what I have been through so that others may suffer less.
There are many free resources to try and many people who find improvement through those free resources. But some people need the extra support and guidance of a professional and need to know we are out here and able to help ❤️
Agreed, I’m so torn about what to believe
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It's a bit confusing as ime diagnosed chronic migraine CFS fybromyalgia but apparently you can't be diagnosed with CFS with chronic mygraine as that's the cause of the symptoms😊
It’s not science though is it and I also appreciate for the sake of enlarging your pockets you need to keep with narrative that “recovery isn’t possible” but no one thinks that, and many people naturally improve. I never relate to being scared of symptoms so can understand if you’re dealing with unresolved fear how you can recover from your mental health condition.
It's great that you have not experienced that narrative.
I used to think that people were talking about fear of symptoms too and found that quite insulting because I never related to that- as I discuss in the video I was in a state of acceptance of my symptoms. The role of fear is more about the natural functioning of the autonomic nervous system.
Although we might not agree on things, it's incorrect to say that it's not science- there is a wealth of neuroscience behind that and lots of science behind neuroplasticity, and a growing understanding of the role of emotions and the immune response. Monty Lyman's new book 'the immune mind' is an accessible place to start.
Your experience is valid and so is mine. ❤️
I can't see the Curable affiliate link in the description, can someone point it out to me please?
Updated! Thanks for letting me know. ❤️ ❤️
Anyone have Parkinson type symptoms? I am going to get tested. Please let me know🙏🏽
Would you prefer Alan Gordon's book or one of the books of Dr. Sarno?
They are both good in different ways, Alan Gordon's book is great because it has lots of relatable examples and gives you practical tools to try, based on Pain Reprocessing Therapy. Howard Schubiner's book 'unlearn your pain' is also very useful, it's more based on emotional expression and you can read the first section for free on his website 🙂
Thanks a lot for this information! 🙏
Reddit hates recovery stories. Stay away. Facebook is much more supportive
I’ve recently joined the Reddit CFS group and my mental health has declined so much as a result. Everyone on Reddit despises this channel 😅
@@Rebecca-jz8uo I'm in the Australian long covid recovery group. Lots of positivity there if you need!
Hmm, she got better within 2 weeks?
I know, nobody was more surprised than me about that! But it really is amazing how quickly neural pathways can be rewired. I was suspicious of it for a long time, kept waiting for the crash, thinking it would come tomorrow, next week, next month, but 5 years later and it never did. The brain is truly amazing 🙂
I think she had a breakthrough in understanding, and that went quick, but she took a while to still manage symptoms. It wasn't just All better and all gone instantly....it took time.
The grift is hard, this is just natural body healing.
Just like that, after so many years? It's supporting the body and putting yourself in a position to be able to heal.