👉 ✅ Come join me in my new course! 🧠 Brain Retraining 101: For ME/CFS and Long Covid Recovery. Enroll now: raelan-agle-s-school1.teachable.com/p/brain_retraining_101
Awesome video! People often reject brain retraining because it feels like their illness is being gas-lit. They hear triggering echoes of doctors or family having said "it's all in their head, just push through, it's not a physical condition". But people forget that their brain and body are interconnected via a nervous system: a column of millions of nerves that runs from their brains, down their spines, into all parts of the body. We have only divided brain and body for the purposes of study, they are absolutely connected in reality. And when we say that brain retraining and somatic therapy helps calm the stress response, we mean that we are targeting the brain AND body, and how they work together. This is still absolutely a physical illness.
Since recovery my life, job, resting mindset & exercise has Completely changed. Definitely a journey of discovering myself again, thank you for all your content 😘 striping things back to basics and staying hopeful
Great video. Inspiring, but also honest. Great information. I need to have the pacing thing hammered into me some more. I still do the boom & bust thing way too often and I think it's possibly the #1 thing holdin me back.
I need help ,my children and me have severe long covid for a year now . And just got reinfected . Please what things can we do ? Suggestions for children 4-16 ? Please im desperate.
Thank you. This is very helpful. One thing that is also crucial for some people is undiagnosed chronic Lyme disease. That is an underlying condition that is present for way more people than realize it. If a lot of things haven’t worked, Lyme disease and co infections are worth exploring.
This is helpful but the question I have is how you get connection and support when you’ve become isolated. I spend all week on my own apart from 4 hours and I have emf sensitivity. I have made progress but without human contact you can’t always make sense of things and it’s tiring
I found it nice to send my friends funny cards and notes / silly knick knacks and then I got even better ones back. People all loved it. And I got post cards too, so I could live through others adventures. And if you haven't switching to wired internet -- with an ethernet cable. You can also get a phone stand so you're not standing or sitting right next to your phone, and set up 10-30 minute chats (whatever is in your zone, say the time ahead of time to your friends) so you're distanced from your phone, since the EMFs exponentially drop off for every inch you're away from the device. And making association of EMFs as a friend. Like oh, time to say hi to my friends (phone on) time to say by (phone off).
Nice video. I could be wrong but as many of ur videos I have seen I have never seen one where someone talked to a pain psychologist, neurofeedback therapy, or stimulants. All of these are hard to find but am willing to try. Complicated , Happy Holiday s!
Can anyone recommend a good review of ans rewire/Gupta /lighting process? Are they all the same concept? Because I read some bad stuff about the lightning p. I wish someone would do a good video weighing up the pros and cons and the spin vs the facts...
Same trying to figure out what's best. I know we need to trust our gut but the majority of people in the comments haven't recovered I would love to hear from those who have
She needs to stay impartial. Any program can be a good fit for someone. What if someone now working with a program that she does not mention? They might get discouraged. I fully recovered with a program and was another one I tried before that did not worked. But does not matter what dis not worked as it might work for another. Full recovery is possible.
It’s so crazy I want to CRYYY because u are saying things I ALWAYS WANTED TO HEAR MY LOVED ONES SAY AND NEVER DID!!! This is what I needed 😢 not even doctors say these things.
This is SUCH a fabulous synopsis. So, so good. All your videos are wonderful, but this one contains so many valuable insights all summarized nicely together, really a masterpiece. Appreciate your nuance, practicality, realness, and compassion. PS. Love how Blue makes appearances for emphasis!
What I gleaned from this is that some people spontaneously recover and some don’t. All of these non specific things with no common thread leads me to this conclusion. We all try different things for years and years. And if you spontaneously recover you credit whatever you did at that time. But if there isn’t a common thread then it isn’t really relevant. Here’s hoping you spontaneously recover. In the meantime never give up hope. Practice acceptance. Focus on family and friends for your precious energy. I’m 37 years into this journey. Believe me when I say I’ve done it all. Tried it all. And I mean every thing, even when it didn’t resonate with me. I’ll try anything. But here I am in a big flare up. It’s okay. I know it will get better for while at some point. This is my fate and I will love with it. And maybe one day I will spontaneously recover. If not, I’ll try to enjoy my life as much as I can.
I was thinking the same thing as I'm watching this. Her answers are really too vague for me to act on. "There are lots of programs" but she doesn't name any of them.
@@LaraHastings I haven't tried any of the paid recovery programs because I have tried so many things that didn't work (based on medical advice and clinical research). I'm not willing to throw more money down that particular hole. However, I did run across vitamin B1/Thiamine therapy recently and that is really helping, so maybe there is an end in sight. I'm only on week 2 and I'm already feeling better.
@@mardeebrosh6965 Recovery isn't so much about finding the right supplement or medication. It's about creating the right conditions for your body to heal. Even people who have had CFS for +20 years are able to recover when they get on the right path. There is no such thing as spontaneous recovery, recovery is a grinding long process that happens very VERY gradually. Hope you will find the help that you need soon.
I don't get that at all. As anyone who has experienced significant healing knows, it's NOT spontaneous - it's damn hard work! We just empowered ourselves and began doing the personal, physical, and psychological work we needed to do to recover. Raelan has listed coaches and recommended programs on this and in other videos. I'd add somatic tracking (lots of that on UA-cam), videos and books by trauma experts Peter Levine and James S. Gordon, "When the Body Says No" by Gabor Mate as well as videos, The Way Out by Alan Gordon (for chronic pain), videos and books by mind/body pioneer, Dr. Howard Schubiner. All these can teach you a lot of new ways to heal. Try journaling out ALL your feelings rather than repressing or being perky positive has helped many. Try different styles then chose your own favourite style of meditation - for me it's Chi Gong and Yoga Nidra, others love mindfulness. Then you can begin crafting your OWN healing path and way out.
Being a UA-camr at one time I can see how everything is drawn out to make the video longer for monetization - and to create a lot of videos - people are in pain and they are scared so get to the point with possible remedies.
But if it was triggered by Covid then does it mean CFS was also induced by a coronavirus? I know most people link it to mono/glandular fever and Epstein Barr virus. Some saying there are tons of mutated strains we don’t really even understand. So I’m not sure it squares up. I think maybe just the outcome is the same.
Oh my goodness I didn't think I could love your videos any more than I did!! This is a true gem 💎 I agree with everything you said 1000%. Recovery is definitely possible for every one of us...we have to keep open minded and keep fighting...because quite frankly what is the alternative anyway?! 75 amazing interviews (plus many more videos)...you are an angel 😇 Raelan....so thankful for you (and of course all whom you have interviewed) ❤ and also love the shout out for Pamela....she is amazing too 😍
I think a big thing with many people having these conditions is unprocessed childhood trauma. If you grew up in an environment where you were not accepted as you were, you had to live in hyper vigilant patterns, you probably have been living your life not allowing yourself to be who you really are and thus putting huge amounts of stress and pressure on your nervous system. In order for the nervous system to heal, at least one aspect, is to find out who you really are and allow yourself to be how you are in any moment, that means being completely ok with laying on a couch doing nothing without pressuring yourself to “heal”. The obsession to heal also puts more stress on your system and is a double edged sword. Some modalities for healing trauma that work well are IFS, somatic experiencing, EMDR and mdma or psilocybin therapy. Some common toxic beliefs that can keep you this way is believing you’re not enough, believing something is wrong with you, because maybe you only got attention when you were sick, and shamed when you were well, then you get wired differently. These are some things to consider and reflect on.
Most of us had a viral infection like Epstein Barr , MS, Lyme Disease. But I do think some EMDR and talk therapy are good for almost everyone. A tune-up once in a while is good.
ME/CFS, Long Covid and Post Lyme disease are diagnoses based on symptoms only. Therefore, not all of these will suffer from the same disease. This is the reason why some people with ME/CFS, Long Covid and Post Lyme disease can recover from "pacing", while others will get worse. It is known that mast cell activation (MCA) can lead to all the symptoms, triggers and PEM seen in ME/CFS. Associated diagnoses that are overrepresented in those with ME/CFS are also overrepresented in those with mast cell diseases (MCAD). These associated diagnoses also appear to have an association with mast cell activation (MCA). Some of these diseases are Allergy and Astma, IBS, Fibromyalgia, POTS, hEDS, ADHD, Multiple Chemical Sensitivity, Small Fiber Neuropathy (SFN), PTSD, Migraines, Interstitial cystitis (IC), psychiatric disorders. Mast cells are immune cells found in all connective tissue including the brain that have over 200 different types of receptors that can activate them and they can release over 1000 different types of chemical mediators. A large part of these mediators are inflammatory, others help to control bodily functions. There are many medications to try that can help those with mast cell diseases. Which medicines help and how much they help varies from person to person. It is believed that around 17 to 20% of all people have Mast Cell Activation Syndrome (MCAS). Those with the disease live their lives with slightly dysfunctional and overactive mast cells before a trigger such as virus (covid-19), bacteria (Borrelia burgdorferi), parasites, mold, physical/psychological stress, toxin/poison, heavy metals trigger disease with typical ME/ CFS symptoms. The mast cells have now become much more overactive and hypersensitive and continuously releases mediators that make you sick. Anything can be a trigger for worsening such as all types of food, changes in temperature or pressure, heat, cold, chemicals, medications, stress, physical activity, smells, sounds, flickering lights (50/60 Hz from the mains). MCAS is a difficult disease to diagnose and It is believed that a number of mutations in the Kit gene can cause MCAS. Around 5 to 6% of all people have Hereditary alpha-tryptasemia syndrome (HαT), which was discovered in 2016. It is known that HαT can cause similar symptoms to MCAS. HαT can be diagnosed with a Tryptase test and a test for the Kit D816V mutation for systemic mastocytosis must be negative. HαT is caused by extra inherited copies of the gene TPSAB1 that makes extra α-tryptase and leads to high tryptase in peripheral blood at baseline. Systemic mastocytosis is very rare and a very few people with ME/CFS will have Indolent or Smoldering systemic mastocytosis which often can have symptoms that match MCAS and ME/CFS. There are several variants of advanced systemic mastocytosis that are fatal and that will develop symptoms of organ failure that will not fit with ME/CFS symptoms. 96% of all with systemic mastocytosis have the Kit D816V mutation. Tryptase is a diagnostic marker in mastocytosis and thought to reflect the burden of mast cell disease. Search the videos below for more info of MCAS. • MCAS: what is Mast Cell Activation Syndrome? - Online interview • The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin • Here's How You Treat Long Covid | Lessons From MCAS - Dr Tina Peers • Mast Cell Activation Syndrome: More than “just allergies” • Mast Cell Activation Syndrome: An Alert to Psychiatrists ME/CFS Associated diagnoses and Mast Cell Activation. From Natinonal Library of Medicine. • The role of human mast cells in allergy and asthma • The Emerging Role of Mast Cells in Irritable Bowel Syndrome • Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrome • Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association • The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome • Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD) • Chemical Intolerance and Mast Cell Activation: A Suspicious Synchronicity • Mast cell disorders are associated with decreased cerebral blood flow and small fiber neuropathy • Mast Cell Activation in Brain Injury, Stress, and Post-traumatic Stress Disorder and Alzheimer's Disease Pathogenesis • The role of mast cells in migraine pathophysiology • The role of the mast cell in interstitial cystitis • Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases MCAS is linked to Long Covid. From Natinonal Library of Medicine. • Mast cell activation symptoms are prevalent in Long-COVID • Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome • Immunological dysfunction and mast cell activation syndrome in chronic COVID • Mast cell activation syndrome and the link with chronic COVID • Mast cell activation is associated with post-acute COVID-19 syndrome • Successful Treatment of a Patient With Severe COVID-19 Using an Integrated Approach Addressing Mast Cells and Their Mediators
Great comment Mandance! I fully agree. For me - someone struggling with CFS - this is very true. I had pretty bad trauma and am still working on it. The trauma contributed a lot to the onset of my CFS and then CFS exacerbated my trauma related issues. If you're already dealing with self esteem issues and anxieties an illness like CFS will give you even more reasons to be anxious or feel "not good enough" and so on. Once you have CFS your trauma recovery becomes harder because you have less resources to work on your issues and also your life. It's a difficult cycle. Recently I've seen some progress with a technique called "tension and trauma release exercises (TRE)" from Dr. David Berceli. It's a tremoring mechanism inherent to the human body and this tremoring helps to basically discharge the energy of pent up stress and trauma from the body. You need to do some exercises to initiate this mechanism. I can wholeheartedly recommend it! Good luck to all of you!
Pretty much agree with that, good overview. A few things I'd like to add based on my experience and research: - "regular" medicine seems to help some people...we've got a very legit neurologist here in Austria who properly diagnoses CFS and has had some patients who recovered with certain medications, after an operation that dealt with cervical spine issues, removal of implants or so - some people who claim to be dealing with CFS seem to not actually deal with that illness based on their symptoms, and some doctors actually put burnout and similar conditions under the same term, so that makes it even harder to be able to tell what's helpful and what's not - when asking questions about certain programs, most people seem to try to avoid a direct answer in terms of whether the program provided any significant improvement in their condition, as if they don't want to be "negative" or step on someones toe's or fear criticism by others, which I think is sad and can be misleading Much love and strength, Thomas
Thank you for giving me hope. Everything was feelint very bleak after reading all over the Internet that there's no cure. But you have shown me the light, I will be forever appreciative of that ❤
Re: getting out of fight or flight state/stress: Having Long Covid on top of ptsd is hard and I find not a lot of people address this. We are too much in fight/flight mode anyway, and now even "small" activities put more stress on our brain and our body. One doctor (a woman) told me that her private theory is that that's why so many women are affected by Long Covid and CFS.
I was apprehensive towards trying brain retraining for years and eventually caving in and seeking out local help from a mindfulness mentor truly has skyrocketed my recovery. Although, I have also needed tremendous support from my naturopath as well! Also addressing certain aspects from my culturally conservative upbringing and identifying my true career aspirations/taking some big leaps with a move across the country has surprisingly helped! But the big thing I was missing was rest and pacing when I was doing everything else right and going a million miles per minute with it. Love all of the extremely informative info given in this video. Hoping I fully recover in the next few months 🤞
More so working through emotional abuse I went through and continued to go through during the rough parts of my illness. I recommend working with someone directly if you have the financial resources. Therapy didn’t help me though. I worked with a meditation coach or a spiritual teacher, if you want to call him that.
I’m doing very well! I still have to pace, but my energy envelope has grown immensely! Recovery has been very slow for me and I hit some road blocks with food sensitivities again, but I started doing massively better once I fixed that again (I accidentally ate foods I wasn’t supposed to have repeatedly for three months, which set me back). I thought I’d recover in 2022, but that was not the case. I even thought I was recovered with how much I improved and realized there was a lot more to do. I’m hoping 2023 is the year :) Don’t give up though. I realize now that I was severe ME/CFS, so it’s taken awhile for me to regain my health, but I’m so happy with my progress
I read something about resilience recently. Being resilient means asking “What can I do to get myself out of this” vs “When will I be released from this”. That really stuck with me!
I had a friend with this condition pass away by s[_]i(ide. Its sad that this condition can really attack your mind more than anything else. I've been blessed to stay generally positive which I thank God every day for. We don't realize how precious it is just to have that, it is EVERYTHING in this fight.
@@sandyshealingjourneyI think about self deletion all the time. It's not really the pain or fatigue that gets me, but the inability to pursue my dreams and just watching them die.
@@TheFracturedfuture I was where you are. I thought I'd NEVER be able to write or perform again. I couldn't stand up half the time - how could I even think of dancing? But I'm back doing them all. We CAN heal --we just need to take action and learn more about loving and healing ourselves then discovering what works for us. Visualizing and self hypnosis helped me imagine a better future - and one day I took action, got off 5 meds, began facing old grief and trauma - and entirely on my own, healed by 80%! It took 2 years, but I danced myself back to life. Find what inspires YOU, and use it to lure you on. Repressed feelings have a lot to do with pain, fatigue and depression and learning to sit with and befriend them in somatic tracking helped hugely. Best of luck, and may YOU one day be telling your success story to Raelan!
Great video. Thank-you. One of the greatest things I have not just learnt, but embodied thanks to the program below is that we must take full responsibility for our recovery. That starts with accepting where we are in our journey. From there we can build. The beginning is challenging because we can go abit backwards once we give our body the permission to rest and heal, but this is an important part of the healing process. I’m currently in the CFS HEALTH program. (It is a mixture of getting back to important Basics and Mindset work. There is also an amazing holistic Dr and Movement coach. We can ask for help and get support from any of these coaches each week. We also have the positive community support of the others in the program. All members are conscious of a forward/growth mindset as it’s necessary for their own healing and for others sharing the space).
Raelan you have done more to heal people than anyone I know of. Your sheer desire to find healing modalities that work and help as many people as possible shines through. I want to thank you and honor you for the work that you do. It's unfortunate that you had to go through the chronic illness but that's what gives so much substance to the work you are currently doing. I just recently came down with fibromyalgia and listening to your positive interviews has made me fully trust in my own total recovery even though I am getting up in years now. I want to join some of your groups and talk with others and share positive ideas. May you always be blissed.
I so hear you and I'm SOOOO grateful to have found your channel. I think the difference between CFS/ME and cancer is that society accepts the seriousness of cancer and will cut you slack and step in to help. CFS often leads people to think you're just being lazy or checking our or shirking responsibilities. Not making excuses - it does take a truly heroic effort to make the changes often with society ACTIVELY RESISTING YOU. Love love LOVE your Skillshare program that I started today! Fingers crossed that two years from now, I shall be able to return to this post and say I'm fully well.
Im stuck atm in my 11 month of long covid. For a few days I realized that I got probably a hyper sensitive nervus system and that is was already damaged bevor I catched the infection. Now its still hard for me to figure out how I can get out of it. But at least I know now what is causing my symptoms. Big thanks for this Video and the positiv words you mantioned in. Like we do come out of it more healthy, more self caring, more self loving and more confident. Big hug, love and peace to you lovely person!
@@tanyawieczorek6603 it will pobably stay hyperactiv, I guess its in my nature build up from my childhood. But I noticed that I can work with my awareness and trying to stay calm and watch my thoughts, thats what helps me the most. Have you teyed a brain retraining, if not, I would recoment you one to try. There are some less expenciev on the market. Worth to give it a try.
@@tanyawieczorek6603hello I'm in pretty much the same boat. I try to give myself lots of messages of safety. Not spending too much time in the past or future. Just trying to be my own best friend and supporter and trying to remain calm under these circumstances. And try to focus my attention at everything I can still do. Today I traveled with the bus, it's a big trigger for me. The crowds make me anxious. I used this as an opportunity to calm myself down. I managed to do it. I listened to my favorite music and I focused on looking at the beautiful scenery. I try to not avoid things that are uncomfortable but rather coach myself through them as best as I can. This is also how I approach the setbacks. It's also really important to not avoid setbacks but to don't really overdo it. Again to teach yourself they it's safe to do activity. It's like muscle training, but with the nervous system. But I did stop pushing myself too much physically, as this brings on too heavy symptoms. Just a little, gradually increasing activity. And to stop the anxiety cycle. Not to say we are anxious people, but extreme fatigue and other symptoms make everyone anxious. It's normal but we need to not dwell on that. Hope this helps, these are the things that help me. Whatever you do, stay out of cathastrophizing the future❤
If I could give you 1000 thumbs up that still wouldn’t sum up how much what you say resonates with me!!!! So very happy to have found you!!! Thank you Raelan!!!!!🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
People who dismiss brain training/rewire…are lost. It’s a shame. There is so much studies around, so many programs offer 100% money back, if it didn’t work they wouldn’t even bother with that.
Than you so much for this. I'm early in my diagnosis/research, and it's wonderful to hear a realistic, balanced approach. I'm seeing lots of noise, and your channel has helped me to sift through the noise. Thank you for all the time and energy you put into this channel, it's invaluable.
I need help bad. I have it so severely ... my blood pressure is so outta wack, shoots up to 200/100s, blood sugar is all over , chest and abdominal palpitations, severe panic attack feeling.extreme weakness and ill feeling ,body burning sensation, thick lung mucus , veins in my legs are blowing out and clotting like extension cords , they turn purplish blue and yellow , gi issues severe constipation issues ,and reflux , my flight is flight is stuck on . I ve tried everything i can think of . I need help . I noticed i get flares around ovulation and period . I found hormones helped the most and eating protein,iron and vitamin c,zinc and d. My children have this to ... do u have any suggestions for kids 4-16 age group ?
Bless you, Raelan! You are cutting people’s recovery in half by consolidating all of this rich and inspiring information in on beautiful space. One of my health visualizations is sitting an interview with you in which I describe my illness as a thing of the past and it serves as another hopeful video that helps and heals others! We love you! 💪🏼❤️🩹❤️
reading about the philosophy of yoga, not the physical excercise part of it, but the actual philosophy has been so helpful to me ( I am too weak to do much excercise anyway). yoga means 'union' and it is all about surrendering to your true nature, which is beyond the compulsive mind which often keeps us overstimulated and agitated which is SUCH a huge part of the my boom and bust cycle. always wanting to do, do, yoga reminds me just to be, and in that being I am still and peaceful and my body can heal. reading sadhguru, or any mindfulness books has really helped me stay in that space. staying in a state of mental equilibrium has been everything to me. fantastic video raelen.
@@tanyawieczorek6603 I have improved quite significantly although still got a ways to go. learning to get out of the boom bust cycle so that I can pace and rest properly was huge. but so was healing an misdiagnosed issue in my gut (which hasn't magically stopped my cfs but helped). like others say I'm learning recovery is like finding all the pieces of the puzzle and doing that consistently everyday. the nervous system stuff is HUGE but don't put all your eggs in one basket and forgo further testing if you somethings medically not right (like having a messed up gut despite following the diet a medical professional prescribed you). at the same time don't neglect your nervous system just because you found some new pill or diet. now I keep a daily calender and everyday I tick off - food, cold shower, meditate, pace, sun, excercise. it keeps me consistent and accountable. I do seated exercises for seniors daily. I'm still limited but energy is really consistent rather than huge crashes and days, weeks of being bed ridden. sorry not sure if you care for all this info but here it is! I fully believe in my recovery I hope you believe in yours too. 😊
This is a very valuable video! Thank you so much! I was wondering if you saw the recent Ron Davis interview where he talked about how one of his scientists fully recovered from mecfs. He said that she had a theory that if she entirely avoided crashing that she could recover. So for one year she never crashed once, and then she fully recovered. It got me wondering if that was the key. I felt like you would be a really good person to reflect on this question because you have interviewed so many people who recovered, and obviously in this video you said that pacing was key for a lot of people. But I wonder, of all the 75 people you interviewed, did any of them NOT pace? When you think back, for example, on all the people who recovered who did brain retraining, were they also doing pacing? Because with all of these people who recovered and are attributing it to a variety of reasons, maybe all of them were also pacing, and that is the real cause for the recovery. I just wondered if you had any reflection on that. If pacing is the one common thread between all of these people, and if what Ron Davis's story reflects is true, then we would have a common path to recovery.
Hi raelan! Love your videos! Im particularly new in this ME/CFS world, and have been rummaging the internet for pathways to recovery. One thing I have noticed ( particularly in the reddit groups) is the rigorous recovery policing ( doubting recovery stories). Moreover, they seem to have a very negative connotation to brain retraining, and think there is no such thing as recovery at all. I was confused by this outlook, and I wonder what you think about them, since you have been engage with this illness closely for such a long time. Once again, love your videos!
Great observation! A theme with people who recover (myself included) is to avoid these spaces. I think that belief (or not believing) in recovery can have a big impact on your health. It's not the only component obviously, but surrounding yourself with optimistic people who believe in recovery is very helpful I think!
I'd still watch all 77 interview vids, personal stories are so valuable especially for us when "standard" treatments failed, we can gather useful information from the people who came out of this
I recovered from post-viral ME after 5 years. Then I relapsed. Then I recovered again. Then I relapsed. Then I recovered again. Etc. Had you interviewed me in any of those “recoveries”, which I believed to be permanent, I would have made a great recovery story. Then I relapsed… except much worse because I had refused to take ME into consideration as I went about living my “recovered” life. It is an enormous regret. Had I allowed myself to accept my limitations, I suspect I would be much better off now.
I’m doing research for my mom since nothing western is working. I was trying to click the link in the video for all the research you have done for the 75/75 full recovery. My mom won’t try anything eastern unless it’s proven by a study. Thanks for this hopeful information!
Thank you for this Raelan. It has been a long time and I've tried so many things, but it's positive voices like yours that keep me going. I believe I will fully recover.
Hi Raelan, thank you for you're doing to help us. I'm using your information and videos to help my brother who has CFS. I just thought I'd mention that your pointing to in-video links to other videos don't show any links, and that's also happening on all the other UA-cam channels I've seen in recent months. Seems to be a glitch in UA-cam's tools. But sending people to links in the show notes is a great alternative. Thanks again!
Boy do I agree with you about the names! Having had it for 45 years, I've heard them all, from Epstein Barr virus to CFS - a TERRIBLE name designed to make us sound like malingerers. ME was simply a better descriptive term invented by the English which included as one doctor put it, "The pain, the brain, the energy drain, and oh god I wish I could sleep again!" No wonder people prefer it. But I too believe they're all the same thing -- and I would add Fibromyalgia is also on the spectrum. People with ME tend to have more fatigue; those with Fibro more pain, but it's a spectrum. I also agree about many men having it. I found, however, they tended to recover more often as often the men had jobs that enabled them to take a sabbatical or get paid time off. (Some were just were bigger babies and said, "I'm sick, I need to stop EVERYTHING for 6 months." Most women, due often to having kids or husbands, tended to push themselves, which made it worse and longer lasting. For me, facing old grief and trauma was hugely healing and key to my recovering by 80% after 20 years mostly housebound and often bedridden. Getting OFF disabling medications was huge, as the standard medications may help briefly then make everything massively worse. I agree, supplements tend to be expensive and useless. The final piece of the puzzle and the one I hope will help me recovery completely is mind/body and somatic work. What a revelation! That MOST chronic pain and illness where there's no structural component is caused by the brain, which can be "rewired" with somatic and vagus nerve work." So many people have completely recovered after years or decades disabled, in agonizing pain or ill - who are now living a rich full life. For people who are still suffering, in agony, and exhausted, I totally get how despondent you may feel. I've been there - and once believed I'd never write, dance, or perform again -that part of my life was over for 20 years. Yet now I'm doing ALL of them! It took time and lots of work, but it IS possible. Like Raelan, I believe EVERYONE can heal. Learning self love, care, and compassion is key. (Inner child work helped as we can be kinder when we realize we're dealing with wounded inner children. I'm learning about Internal Family Systems, a similar process.) I love your energy and enthusiasm, Raelan. These videos encourage people whether they're beginning the process or have climbed a long way up the mountain of recovery.
I have long covid with PEM and fit the diagnostic criteria for me/cfs. Navigating this disease was so shocking. I feel like there's a few extremes on the Internet around long covid me/cfs. The brain retraining group, the functional medicine group (mold toxicity, gut microbiome, supplements etc), conventional med regular (beta blockers, LDN, IVIG, nicotine patch, mitochondria etc), conventional med experimental (ivermectin, nattokinase, antivirals, HBOT) and a few more. And they all insist they have the solution and everything else is crap and doesn't work. 🤷♀️ Overall it's just massively sad how little money has been spent researching me/cfs for decades. Barely any clinical trials done on treatments and they've only recently discovered what physiological changes even happen in the body.
My doctor said I was crazy for believing mind over matter, He is saying I have cancer, I have been fighting it for a while now, I'm sick of all the treatment. how can I get better with all these people reinforcing that I am sick. I believe there for it is, thankyou Raelan.
I love your videos and content. But more than that, I’m grateful for your support and the way you can lift me up and keep me going. I truly believe I will fully recover, but some days it feels like it will never happen especially if I’ve had a relapse. Perspective is everything! Thanks for all you do for this community ❤️
@@tanyawieczorek6603 I’m pretty functional. I’ve been working a part time receptionist job and have started back doing part time with my regular job as a massage therapist. I can go for 1/2 hour walks every day and just started riding my stationary bike again. So much better but still have a bit to go yet to be fully recovered. One step at a time!
I have CFS and am having a bad crash right now. The talking is too fast to follow and this goes into too many directions. This is not a criticism of your channel. It's great that you recovered. Most of us here are also trying to recover currently. Shorter videos and slower talking would help. Thank you for trying to find help for us all.
I’ve been doing ANS rewire for over 18 months and only started seeing results after 16 months. The only medication that’s helped me is low dose naltrexone. I had my biggest leap in recovery after having COVID, don’t know how to explain that 😂
Maybe your the fear of covid was contributing to your stress level and after you had it, you were relieved as it was no longer a threat. Wishing you all the best.
There are several stories of people with CFS who have huge improvements after serious infections or illnesses. We don’t know why, but it does happen. They think it might be an immune response,as in your immune system really rallies to fight covid and simultaneously heals the areas of your body that trigger CFS. But I also think this depends on how your CFS started
I’ve probably spent about £7,000 over 14 years and haven’t got anymore money but there good things that are free it’s just the solitude that seems be unresolvable. I have tried everything so I have a befriended for half an hour a week but not having social interaction affects me psychologically. I can only manage about half an hour if I were to meet up with anyone but the pandemic makes that almost impossible. If anyone has any thoughts on how they manage isolation positively
I believe recovery is possible, I nearly recovered, had a full time job, was salsa dancing to. I needed lots of rests, it was great for about 10 years. Then however 6 years ago I had a flu shot and severely worsened me. Im so incredibly unwell still. Mostly bedridden. So you can recover, but you can worsen too. Don't forget that. Also some people with very mild ME/CFS severely worsened after a Covid infection. Not everyone can recover. Also because ME/CFS is a very heterogeneous (cause for many reasons). The mental positivity stuff helps but it doesn't cure autoimmune diseases. It doesn't cure cancer either. Good management helps a lot. Hope stops you being depressed.
This is Awesome ‼️🙌🏼 compassion and kindness for myself 💓💓💓 guard your space fiercely ‼️ 💯 belief I will recover ‼️‼️ I am an effing bad ass‼️ one of the keys here that I have been missing is connection and support 😢 been such a long, lonely , no one understands journey 😢 other than watching your videos , how can I connect , like actually talk to others to connect ??? And , since this video is 2 years old , would you have any other key tips and strategies you’ve learned since then ?? Thank you 😘😘
Such a great video. It doesn't matter if recovery is possible for everyone or not I fully believe that if you don't fully believe you can recovery then you won't.
Brain retraining has an unjustifiable amount of negative stigma amongst a large portion of the ME/CFS community, specifically those groups and forums where there's alot of uncertainty, negativity and despair. I think it's cause people are easily offended by the rhetoric "ME/CFS isn't a psychological condition!!!" so they are quick to dismiss it. Brain retraining isn't think happy thoughts and ignore symptoms, instead it's reconnecting the brain with the rest of the body. You are experiencing pain and symptoms because your nervous system is out of wack and your brain is continually sending messages of danger keeping you in a panicked / fight or flight state. There's no coincidence that people that recovered had to change their mindset... Which includes how we react to thoughts, symptoms and limiting beliefs (all things that keep people stuck). This is in essence a form of brain retraining.
Nah, they don’t believe in it because the best doctors on earth like Dr John Chia, Dr Lapp , Dr Ron Davis say this is garbage nonsense - like the lady says she’s definitely no expert and this isn’t professional advice so she won’t get sued when she makes someone who is severe with ME/CFS far worse- This is literally for suckers that were misdiagnosed and think they have ME/CFS what’s the one thing these scumbags all have in common? Unless you’re desperate, stupid or a lot of mental illness you’ll figure it out-
@@larryc1616 I did not find CBT/DBT useful, and think parts of it are kinda untrue...like, detachment and non-judgement are too similar to disassociation, imo, and I needed to do the opposite of that. But I do like some of the polyvagal theory stuff, because with that the goal is to stop disassociating and change your environment or choices accordingly. It’s just about responding to your needs by listening to your body cues instead of ignoring or pushing past them.
It's because many of us have personal experience and know that it doesn't work like that. As my mental health has improved over the years my physical health continues to decline. I've done trauma work, mindfulness, mind-body work, etc. It has helped me accept my condition and limitations but it hasn't healed me physically. One program actually pushed me into further decline working off this model. It's convenient for people to say this is the key to healing because if a patient tries and doesn't get better they are just accused of not trying hard enough. Blaming the victim and ignoring the real needs of people suffering. That's what we have a problem with.
IF YOU NEED ANYONE ELSE TO DO AN INTERVIEW ON IM DOWN! IM ONLY 32 and have felt symptoms since 2009. I’ve been going through SO MUCH and I’m very passionate about finding my solution now
@Raelan Agle Hello, I was wondering if there could be any information on people who recovered from Long COVID with other symptoms. I know ME/CFS is one of the major debilitating problems that many of us face. I personally, struggle with chest tightness along with other issues and I desperately need some hope and a good information source.
100% my own enemy by not recognising how bad it is. I've got three diagnoses and each are debilitating on their own. Yet I have never previously recognised this
Thank you Raelan for your efforts of making these contents that are as worthy as medications itself. The sense of understanding that it makes CFS sufferers feel, and the hope that it gives. I hope you won't get tired making these videos. Hugs. 🥰🥰🥰
I have to keep iPad to 15 mins in the morning and 15 mins in the afternoon just for checking emails and some you tube. I have tried glasses and shields but I continue to be sensitive to emf and WiFi. I can read for a short time only and listen to an audiobook for half an hour a day but it leaves a lot of time to think lol
This video and the variety of different ways how people get better and how some don't just proves to point (in my opinion after many years) that we are not all dealing with same root cause. And that can even mean that the we might be dealing with many different illnesses. There is no other logical explanation. I'm definitely open to other opinions though.
Wow, cannot tell you how helpful this is. I just recently have come across all the ME/CFS recovery channels and programs and am pretty overwhelmed trying to figure out where to start. Thank you so much for all the effort, time and passion you've put into this and so generously share - this one's a special gift. Xoxoxo
nobody takes my situation seriously - hope is a challenge every day. Your words at the end made me burst into tears. Thank you for the motivation and your words ♥️
This was so incredibly affirming of the path to recovery that I am on! I know that I can trust myself and my bodies wisdom but it can be disheartening when things I try don't yield results. That being said I wholly believe in my ability to recover and I also believe that my body know what is best. Thank you for all that you have done for our community xoxo
After very recently being diagnosed with post-viral fatigue/CFS after months of tests, I can’t explain how grateful I am to have stumbled across your You Tube channel. Raelan, you speak as if you are living beside me as you explain just how tough you know CFS/ME to be. Your cheerleader type support is fabulous, and you have unknowingly caused me to burst into tears several times as you show such relatable compassion for the genuinely awful experience that is CFS. I am so convinced that I will find the tools to recover, but I’m also excited to rediscover who I am and need to be in order to live a more authentic, healthy and healing life…and your videos will be a great source of support. I am lucky to have a great GP, but the NHS in the UK are still finding there way with supporting recovery of CFS, so lots to learn, but I am convinced the answers are out there. Thank you for creating this channel, sharing your own experiences, and delivery welcomed advice for us all to learn from. 🤗❤️
Hi Jo. I haven't watched this video yet, so it may already be mentioned in there.. But if not, I'd like to point you towards The Optimum Health Clinic in London. Alex Howard is the founder, having recovered from CFS/M.E many years ago now he started The OHC so that he could help others to recover and/or improve as there was no help available for him when he was sick. You don't need to get to London to work with them, they help ppl around the world with their online programs. Most of the ppl who work for Alex also had CFS/M.E and recovered (using his program.) Alex also has a new (only his second book in 20yrs..He wanted it to be perfect,) book out, released last November, called 'Decode Your Fatigue.' (It's only about a tenner.) In it he basically goes through everything they do at The OHC to help ppl recover, so that we can help ourselves, in a step by step format. CFS Health in Australia is also great. (Just not as detailed as working with the OHC, but that shines in the £) I signed up with CFS Health, 4 yrs ago now when I was got super very ill (had already had symptoms for 5yrs,) and I'm alot better, though my recovery is crazy slow. But, we are all different, and I've had alot to deal with for the last couple of years on top of the CFS/M.E. I also live alone. I'm about to start saving to try to work the nutrition department of The OHC, as I believe it will help in my recovery. Gonna take me a while though as I'm unable to work, and have a cat that drains my benefit. Lol (She has arthritis.) Anyway, just thought I'd leave you some info incase you hadn't heard of the above mentioned. They both have YT channels where you can glean lots of info, and ofc websites and FB and Instagram. 👍 Best of luck on your journey. ❤
Thank you so much for getting in touch @loobylouboti I really appreciate you taking the time to let me know about The Optimum Health Clinic, and share your own journey. I’m in touch with them at the moment and hoping to work out a way to support my recovery, but you are right about having to save up! I’ll definitely purchase his new book from Amazon today, and look through their channel too. Thanks again for being so thoughtful and kind. ❤️
@@joferguson7640 Ah yey! Glad you are already in touch with them. They do AMAZING work! Good luck! I'm rooting for you! And ofc you're welcome, 😊 We have to stick together and help each other out I'm this journey. I'm actually looking to start and lead a support group locally for just that reason. His book is fab, esp for 'beginner's.' And lots of great reminders to give someone like me a kick up the bum, too when complacency sets in 😉 Take care. Best wishes ❤
👉 ✅ Come join me in my new course! 🧠 Brain Retraining 101: For ME/CFS and Long Covid Recovery. Enroll now: raelan-agle-s-school1.teachable.com/p/brain_retraining_101
Awesome video! People often reject brain retraining because it feels like their illness is being gas-lit. They hear triggering echoes of doctors or family having said "it's all in their head, just push through, it's not a physical condition". But people forget that their brain and body are interconnected via a nervous system: a column of millions of nerves that runs from their brains, down their spines, into all parts of the body. We have only divided brain and body for the purposes of study, they are absolutely connected in reality. And when we say that brain retraining and somatic therapy helps calm the stress response, we mean that we are targeting the brain AND body, and how they work together. This is still absolutely a physical illness.
Love this perspective, thanks for sharing! 🧡 🧡
Since recovery my life, job, resting mindset & exercise has Completely changed. Definitely a journey of discovering myself again, thank you for all your content 😘 striping things back to basics and staying hopeful
any tips on recovery process?
I will listen to this everyday
Great video. Inspiring, but also honest. Great information. I need to have the pacing thing hammered into me some more. I still do the boom & bust thing way too often and I think it's possibly the #1 thing holdin me back.
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Fantastic summary! I feel inspired to keep going! A confession though I had to look up what a badass was!
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you are doing great work Raelan
I need help ,my children and me have severe long covid for a year now . And just got reinfected . Please what things can we do ? Suggestions for children 4-16 ? Please im desperate.
Thank you. This is very helpful. One thing that is also crucial for some people is undiagnosed chronic Lyme disease. That is an underlying condition that is present for way more people than realize it. If a lot of things haven’t worked, Lyme disease and co infections are worth exploring.
This is helpful but the question I have is how you get connection and support when you’ve become isolated. I spend all week on my own apart from 4 hours and I have emf sensitivity. I have made progress but without human contact you can’t always make sense of things and it’s tiring
I found it nice to send my friends funny cards and notes / silly knick knacks and then I got even better ones back. People all loved it. And I got post cards too, so I could live through others adventures. And if you haven't switching to wired internet -- with an ethernet cable. You can also get a phone stand so you're not standing or sitting right next to your phone, and set up 10-30 minute chats (whatever is in your zone, say the time ahead of time to your friends) so you're distanced from your phone, since the EMFs exponentially drop off for every inch you're away from the device. And making association of EMFs as a friend. Like oh, time to say hi to my friends (phone on) time to say by (phone off).
Love you raelan. Thank you!
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Great. Thank you😍😍😍😍
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Nice video. I could be wrong but as many of ur videos I have seen I have never seen one where someone talked to a pain psychologist, neurofeedback therapy, or stimulants. All of these are hard to find but am willing to try. Complicated , Happy Holiday s!
With lockdown I got to stay home and rest - I only learned now that this may be what I have though.
Have you come across any research papers which carry out this sort of content analysis?
Hello raelan can you pleaseprovide the information about the ayurvedic doctor
Holistic medicine FTW! :)
Can anyone recommend a good review of ans rewire/Gupta /lighting process? Are they all the same concept? Because I read some bad stuff about the lightning p. I wish someone would do a good video weighing up the pros and cons and the spin vs the facts...
Gupta amygdala re-training CD's are complete BS and debunked more than 10 years ago. Save yourself money and grief....
Same trying to figure out what's best. I know we need to trust our gut but the majority of people in the comments haven't recovered I would love to hear from those who have
It should not be hard for u to tell us which brain program is success etc - people are to broke & tired and scared to play games..
Exactly!!!
She needs to stay impartial. Any program can be a good fit for someone. What if someone now working with a program that she does not mention? They might get discouraged. I fully recovered with a program and was another one I tried before that did not worked. But does not matter what dis not worked as it might work for another. Full recovery is possible.
10:15
Does anyone have hair shedding?
U are talking about tools that are not covered by health insurance
Yes.
Another paid course 🤔
Me/cfs/ lime/ gulf war syndrome/ post viral syndrome/ long covid.... all the same.
Lol no it’s not
@@Mandanceuh yeah, they probably are
It’s so crazy I want to CRYYY because u are saying things I ALWAYS WANTED TO HEAR MY LOVED ONES SAY AND NEVER DID!!! This is what I needed 😢 not even doctors say these things.
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This is SUCH a fabulous synopsis. So, so good. All your videos are wonderful, but this one contains so many valuable insights all summarized nicely together, really a masterpiece. Appreciate your nuance, practicality, realness, and compassion. PS. Love how Blue makes appearances for emphasis!
What I gleaned from this is that some people spontaneously recover and some don’t. All of these non specific things with no common thread leads me to this conclusion. We all try different things for years and years. And if you spontaneously recover you credit whatever you did at that time. But if there isn’t a common thread then it isn’t really relevant. Here’s hoping you spontaneously recover. In the meantime never give up hope. Practice acceptance. Focus on family and friends for your precious energy. I’m 37 years into this journey. Believe me when I say I’ve done it all. Tried it all. And I mean every thing, even when it didn’t resonate with me. I’ll try anything. But here I am in a big flare up. It’s okay. I know it will get better for while at some point. This is my fate and I will love with it. And maybe one day I will spontaneously recover. If not, I’ll try to enjoy my life as much as I can.
I was thinking the same thing as I'm watching this. Her answers are really too vague for me to act on. "There are lots of programs" but she doesn't name any of them.
Have you tried any of the recovery programs out there?
@@LaraHastings I haven't tried any of the paid recovery programs because I have tried so many things that didn't work (based on medical advice and clinical research). I'm not willing to throw more money down that particular hole. However, I did run across vitamin B1/Thiamine therapy recently and that is really helping, so maybe there is an end in sight. I'm only on week 2 and I'm already feeling better.
@@mardeebrosh6965 Recovery isn't so much about finding the right supplement or medication. It's about creating the right conditions for your body to heal. Even people who have had CFS for +20 years are able to recover when they get on the right path. There is no such thing as spontaneous recovery, recovery is a grinding long process that happens very VERY gradually. Hope you will find the help that you need soon.
I don't get that at all. As anyone who has experienced significant healing knows, it's NOT spontaneous - it's damn hard work! We just empowered ourselves and began doing the personal, physical, and psychological work we needed to do to recover. Raelan has listed coaches and recommended programs on this and in other videos. I'd add somatic tracking (lots of that on UA-cam), videos and books by trauma experts Peter Levine and James S. Gordon, "When the Body Says No" by Gabor Mate as well as videos, The Way Out by Alan Gordon (for chronic pain), videos and books by mind/body pioneer, Dr. Howard Schubiner. All these can teach you a lot of new ways to heal. Try journaling out ALL your feelings rather than repressing or being perky positive has helped many. Try different styles then chose your own favourite style of meditation - for me it's Chi Gong and Yoga Nidra, others love mindfulness. Then you can begin crafting your OWN healing path and way out.
Being a UA-camr at one time I can see how everything is drawn out to make the video longer for monetization - and to create a lot of videos - people are in pain and they are scared so get to the point with possible remedies.
*Some Long C is most likely CFS*
But if it was triggered by Covid then does it mean CFS was also induced by a coronavirus? I know most people link it to mono/glandular fever and Epstein Barr virus. Some saying there are tons of mutated strains we don’t really even understand. So I’m not sure it squares up. I think maybe just the outcome is the same.
Yes, agreed. I've seen success stories there too as people do somatic work and discover healing is within.
Oh my goodness I didn't think I could love your videos any more than I did!! This is a true gem 💎 I agree with everything you said 1000%. Recovery is definitely possible for every one of us...we have to keep open minded and keep fighting...because quite frankly what is the alternative anyway?! 75 amazing interviews (plus many more videos)...you are an angel 😇 Raelan....so thankful for you (and of course all whom you have interviewed) ❤ and also love the shout out for Pamela....she is amazing too 😍
I think a big thing with many people having these conditions is unprocessed childhood trauma. If you grew up in an environment where you were not accepted as you were, you had to live in hyper vigilant patterns, you probably have been living your life not allowing yourself to be who you really are and thus putting huge amounts of stress and pressure on your nervous system. In order for the nervous system to heal, at least one aspect, is to find out who you really are and allow yourself to be how you are in any moment, that means being completely ok with laying on a couch doing nothing without pressuring yourself to “heal”. The obsession to heal also puts more stress on your system and is a double edged sword. Some modalities for healing trauma that work well are IFS, somatic experiencing, EMDR and mdma or psilocybin therapy. Some common toxic beliefs that can keep you this way is believing you’re not enough, believing something is wrong with you, because maybe you only got attention when you were sick, and shamed when you were well, then you get wired differently. These are some things to consider and reflect on.
Yes
By
Most of us had a viral infection like Epstein Barr , MS, Lyme Disease. But I do think some EMDR and talk therapy are good for almost everyone. A tune-up once in a while is good.
ME/CFS, Long Covid and Post Lyme disease are diagnoses based on symptoms only. Therefore, not all of these will suffer from the same disease.
This is the reason why some people with ME/CFS, Long Covid and Post Lyme disease can recover from "pacing", while others will get worse.
It is known that mast cell activation (MCA) can lead to all the symptoms, triggers and PEM seen in ME/CFS. Associated diagnoses that are overrepresented in those with ME/CFS are also overrepresented in those with mast cell diseases (MCAD). These associated diagnoses also appear to have an association with mast cell activation (MCA).
Some of these diseases are Allergy and Astma, IBS, Fibromyalgia, POTS, hEDS, ADHD, Multiple Chemical Sensitivity, Small Fiber Neuropathy (SFN), PTSD, Migraines, Interstitial cystitis (IC), psychiatric disorders.
Mast cells are immune cells found in all connective tissue including the brain that have over 200 different types of receptors that can activate them and they can release over 1000 different types of chemical mediators. A large part of these mediators are inflammatory, others help to control bodily functions.
There are many medications to try that can help those with mast cell diseases. Which medicines help and how much they help varies from person to person.
It is believed that around 17 to 20% of all people have Mast Cell Activation Syndrome (MCAS). Those with the disease live their lives with slightly dysfunctional and overactive mast cells before a trigger such as virus (covid-19), bacteria (Borrelia burgdorferi), parasites, mold, physical/psychological stress, toxin/poison, heavy metals trigger disease with typical ME/ CFS symptoms. The mast cells have now become much more overactive and hypersensitive and continuously releases mediators that make you sick. Anything can be a trigger for worsening such as all types of food, changes in temperature or pressure, heat, cold, chemicals, medications, stress, physical activity, smells, sounds, flickering lights (50/60 Hz from the mains). MCAS is a difficult disease to diagnose and It is believed that a number of mutations in the Kit gene can cause MCAS.
Around 5 to 6% of all people have Hereditary alpha-tryptasemia syndrome (HαT), which was discovered in 2016. It is known that HαT can cause similar symptoms to MCAS. HαT can be diagnosed with a Tryptase test and a test for the Kit D816V mutation for systemic mastocytosis must be negative. HαT is caused by extra inherited copies of the gene TPSAB1 that makes extra α-tryptase and leads to high tryptase in peripheral blood at baseline.
Systemic mastocytosis is very rare and a very few people with ME/CFS will have Indolent or Smoldering systemic mastocytosis which often can have symptoms that match MCAS and ME/CFS. There are several variants of advanced systemic mastocytosis that are fatal and that will develop symptoms of organ failure that will not fit with ME/CFS symptoms.
96% of all with systemic mastocytosis have the Kit D816V mutation. Tryptase is a diagnostic marker in mastocytosis and thought to reflect the burden of mast cell disease.
Search the videos below for more info of MCAS.
• MCAS: what is Mast Cell Activation Syndrome? - Online interview
• The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin
• Here's How You Treat Long Covid | Lessons From MCAS - Dr Tina Peers
• Mast Cell Activation Syndrome: More than “just allergies”
• Mast Cell Activation Syndrome: An Alert to Psychiatrists
ME/CFS Associated diagnoses and Mast Cell Activation.
From Natinonal Library of Medicine.
• The role of human mast cells in allergy and asthma
• The Emerging Role of Mast Cells in Irritable Bowel Syndrome
• Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrome
• Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association
• The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome
• Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD)
• Chemical Intolerance and Mast Cell Activation: A Suspicious Synchronicity
• Mast cell disorders are associated with decreased cerebral blood flow and small fiber neuropathy
• Mast Cell Activation in Brain Injury, Stress, and Post-traumatic Stress Disorder and Alzheimer's Disease Pathogenesis
• The role of mast cells in migraine pathophysiology
• The role of the mast cell in interstitial cystitis
• Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases
MCAS is linked to Long Covid.
From Natinonal Library of Medicine.
• Mast cell activation symptoms are prevalent in Long-COVID
• Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome
• Immunological dysfunction and mast cell activation syndrome in chronic COVID
• Mast cell activation syndrome and the link with chronic COVID
• Mast cell activation is associated with post-acute COVID-19 syndrome
• Successful Treatment of a Patient With Severe COVID-19 Using an Integrated Approach Addressing Mast Cells and Their Mediators
Great comment Mandance! I fully agree.
For me - someone struggling with CFS - this is very true. I had pretty bad trauma and am still working on it. The trauma contributed a lot to the onset of my CFS and then CFS exacerbated my trauma related issues.
If you're already dealing with self esteem issues and anxieties an illness like CFS will give you even more reasons to be anxious or feel "not good enough" and so on.
Once you have CFS your trauma recovery becomes harder because you have less resources to work on your issues and also your life. It's a difficult cycle.
Recently I've seen some progress with a technique called "tension and trauma release exercises (TRE)" from Dr. David Berceli.
It's a tremoring mechanism inherent to the human body and this tremoring helps to basically discharge the energy of pent up stress and trauma from the body. You need to do some exercises to initiate this mechanism. I can wholeheartedly recommend it!
Good luck to all of you!
Pretty much agree with that, good overview.
A few things I'd like to add based on my experience and research:
- "regular" medicine seems to help some people...we've got a very legit neurologist here in Austria who properly diagnoses CFS and has had some patients who recovered with certain medications, after an operation that dealt with cervical spine issues, removal of implants or so
- some people who claim to be dealing with CFS seem to not actually deal with that illness based on their symptoms, and some doctors actually put burnout and similar conditions under the same term, so that makes it even harder to be able to tell what's helpful and what's not
- when asking questions about certain programs, most people seem to try to avoid a direct answer in terms of whether the program provided any significant improvement in their condition, as if they don't want to be "negative" or step on someones toe's or fear criticism by others, which I think is sad and can be misleading
Much love and strength,
Thomas
Thank you for giving me hope. Everything was feelint very bleak after reading all over the Internet that there's no cure. But you have shown me the light, I will be forever appreciative of that ❤
So happy to hear that! ❤️ ❤️
Re: getting out of fight or flight state/stress: Having Long Covid on top of ptsd is hard and I find not a lot of people address this. We are too much in fight/flight mode anyway, and now even "small" activities put more stress on our brain and our body.
One doctor (a woman) told me that her private theory is that that's why so many women are affected by Long Covid and CFS.
This makes so much sense to me!
I was apprehensive towards trying brain retraining for years and eventually caving in and seeking out local help from a mindfulness mentor truly has skyrocketed my recovery. Although, I have also needed tremendous support from my naturopath as well! Also addressing certain aspects from my culturally conservative upbringing and identifying my true career aspirations/taking some big leaps with a move across the country has surprisingly helped! But the big thing I was missing was rest and pacing when I was doing everything else right and going a million miles per minute with it. Love all of the extremely informative info given in this video. Hoping I fully recover in the next few months 🤞
this is awesome
What did you identify from your upbringing? I am in a similar boat...
Hey! How are you doing now
More so working through emotional abuse I went through and continued to go through during the rough parts of my illness. I recommend working with someone directly if you have the financial resources. Therapy didn’t help me though. I worked with a meditation coach or a spiritual teacher, if you want to call him that.
I’m doing very well! I still have to pace, but my energy envelope has grown immensely! Recovery has been very slow for me and I hit some road blocks with food sensitivities again, but I started doing massively better once I fixed that again (I accidentally ate foods I wasn’t supposed to have repeatedly for three months, which set me back). I thought I’d recover in 2022, but that was not the case. I even thought I was recovered with how much I improved and realized there was a lot more to do. I’m hoping 2023 is the year :) Don’t give up though. I realize now that I was severe ME/CFS, so it’s taken awhile for me to regain my health, but I’m so happy with my progress
BELIEVE Recovery is POSSIBLE 💯.
Someday you will FLY 🦅 again.
Raelan thank you 🙏🏼 for such an AMAZING and INSPIRATIONAL video
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I read something about resilience recently. Being resilient means asking “What can I do to get myself out of this” vs “When will I be released from this”. That really stuck with me!
Love LOVE this!!! Thanks for sharing
LOVE THIS! Thank you for sharing Ronnie! 💗
I had a friend with this condition pass away by s[_]i(ide. Its sad that this condition can really attack your mind more than anything else. I've been blessed to stay generally positive which I thank God every day for. We don't realize how precious it is just to have that, it is EVERYTHING in this fight.
@@sandyshealingjourneyI think about self deletion all the time. It's not really the pain or fatigue that gets me, but the inability to pursue my dreams and just watching them die.
@@TheFracturedfuture I was where you are. I thought I'd NEVER be able to write or perform again. I couldn't stand up half the time - how could I even think of dancing? But I'm back doing them all. We CAN heal --we just need to take action and learn more about loving and healing ourselves then discovering what works for us. Visualizing and self hypnosis helped me imagine a better future - and one day I took action, got off 5 meds, began facing old grief and trauma - and entirely on my own, healed by 80%! It took 2 years, but I danced myself back to life. Find what inspires YOU, and use it to lure you on. Repressed feelings have a lot to do with pain, fatigue and depression and learning to sit with and befriend them in somatic tracking helped hugely. Best of luck, and may YOU one day be telling your success story to Raelan!
How you recovered without videos like this is amazing.. Keep them coming, they are a godsend. Thank you!
Thank you so much, PJA! I'm so glad you are finding them helpful and I appreciate the support ❤
You are really having difficulty coming to the point. 80% of your talk is just going around the subject.
Great video. Thank-you. One of the greatest things I have not just learnt, but embodied thanks to the program below is that we must take full responsibility for our recovery. That starts with accepting where we are in our journey. From there we can build. The beginning is challenging because we can go abit backwards once we give our body the permission to rest and heal, but this is an important part of the healing process.
I’m currently in the CFS HEALTH program. (It is a mixture of getting back to important Basics and Mindset work. There is also an amazing holistic Dr and Movement coach. We can ask for help and get support from any of these coaches each week. We also have the positive community support of the others in the program. All members are conscious of a forward/growth mindset as it’s necessary for their own healing and for others sharing the space).
25 minutes and 17 seconds of unscientific and unsubstantiated nonsense. Just pure rubbish
Raelan you have done more to heal people than anyone I know of. Your sheer desire to find healing modalities that work and help as many people as possible shines through. I want to thank you and honor you for the work that you do. It's unfortunate that you had to go through the chronic illness but that's what gives so much substance to the work you are currently doing. I just recently came down with fibromyalgia and listening to your positive interviews has made me fully trust in my own total recovery even though I am getting up in years now. I want to join some of your groups and talk with others and share positive ideas. May you always be blissed.
I so hear you and I'm SOOOO grateful to have found your channel. I think the difference between CFS/ME and cancer is that society accepts the seriousness of cancer and will cut you slack and step in to help. CFS often leads people to think you're just being lazy or checking our or shirking responsibilities. Not making excuses - it does take a truly heroic effort to make the changes often with society ACTIVELY RESISTING YOU. Love love LOVE your Skillshare program that I started today! Fingers crossed that two years from now, I shall be able to return to this post and say I'm fully well.
I'm thrilled to hear you're finding the Skillshare program helpful! Rooting for you all the way! 🌟
Im stuck atm in my 11 month of long covid. For a few days I realized that I got probably a hyper sensitive nervus system and that is was already damaged bevor I catched the infection. Now its still hard for me to figure out how I can get out of it. But at least I know now what is causing my symptoms. Big thanks for this Video and the positiv words you mantioned in. Like we do come out of it more healthy, more self caring, more self loving and more confident.
Big hug, love and peace to you lovely person!
Did you ever figure out how to get out of your oversensitive nervous system issues?
@@tanyawieczorek6603 it will pobably stay hyperactiv, I guess its in my nature build up from my childhood. But I noticed that I can work with my awareness and trying to stay calm and watch my thoughts, thats what helps me the most. Have you teyed a brain retraining, if not, I would recoment you one to try. There are some less expenciev on the market. Worth to give it a try.
@@tanyawieczorek6603hello I'm in pretty much the same boat. I try to give myself lots of messages of safety. Not spending too much time in the past or future. Just trying to be my own best friend and supporter and trying to remain calm under these circumstances. And try to focus my attention at everything I can still do. Today I traveled with the bus, it's a big trigger for me. The crowds make me anxious. I used this as an opportunity to calm myself down. I managed to do it. I listened to my favorite music and I focused on looking at the beautiful scenery. I try to not avoid things that are uncomfortable but rather coach myself through them as best as I can. This is also how I approach the setbacks. It's also really important to not avoid setbacks but to don't really overdo it. Again to teach yourself they it's safe to do activity. It's like muscle training, but with the nervous system. But I did stop pushing myself too much physically, as this brings on too heavy symptoms. Just a little, gradually increasing activity. And to stop the anxiety cycle. Not to say we are anxious people, but extreme fatigue and other symptoms make everyone anxious. It's normal but we need to not dwell on that. Hope this helps, these are the things that help me. Whatever you do, stay out of cathastrophizing the future❤
If I could give you 1000 thumbs up that still wouldn’t sum up how much what you say resonates with me!!!! So very happy to have found you!!! Thank you Raelan!!!!!🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
Wow, thank you!
People who dismiss brain training/rewire…are lost. It’s a shame. There is so much studies around, so many programs offer 100% money back, if it didn’t work they wouldn’t even bother with that.
Would you mind sharing which programs have the guarantee?
Than you so much for this. I'm early in my diagnosis/research, and it's wonderful to hear a realistic, balanced approach. I'm seeing lots of noise, and your channel has helped me to sift through the noise. Thank you for all the time and energy you put into this channel, it's invaluable.
Thank you, so glad you find it helpful!
I need help bad. I have it so severely ... my blood pressure is so outta wack, shoots up to 200/100s, blood sugar is all over , chest and abdominal palpitations, severe panic attack feeling.extreme weakness and ill feeling ,body burning sensation, thick lung mucus , veins in my legs are blowing out and clotting like extension cords , they turn purplish blue and yellow , gi issues severe constipation issues ,and reflux , my flight is flight is stuck on . I ve tried everything i can think of . I need help . I noticed i get flares around ovulation and period . I found hormones helped the most and eating protein,iron and vitamin c,zinc and d.
My children have this to ... do u have any suggestions for kids 4-16 age group ?
Hi 👋 from Regina, SK. It’s so easy to get completely overwhelmed with this illness and the crazy number of different recommendations out there.
Bless you, Raelan! You are cutting people’s recovery in half by consolidating all of this rich and inspiring information in on beautiful space. One of my health visualizations is sitting an interview with you in which I describe my illness as a thing of the past and it serves as another hopeful video that helps and heals others! We love you! 💪🏼❤️🩹❤️
reading about the philosophy of yoga, not the physical excercise part of it, but the actual philosophy has been so helpful to me ( I am too weak to do much excercise anyway). yoga means 'union' and it is all about surrendering to your true nature, which is beyond the compulsive mind which often keeps us overstimulated and agitated which is SUCH a huge part of the my boom and bust cycle. always wanting to do, do, yoga reminds me just to be, and in that being I am still and peaceful and my body can heal. reading sadhguru, or any mindfulness books has really helped me stay in that space. staying in a state of mental equilibrium has been everything to me. fantastic video raelen.
How are you doing now?
@@tanyawieczorek6603 I have improved quite significantly although still got a ways to go. learning to get out of the boom bust cycle so that I can pace and rest properly was huge. but so was healing an misdiagnosed issue in my gut (which hasn't magically stopped my cfs but helped). like others say I'm learning recovery is like finding all the pieces of the puzzle and doing that consistently everyday. the nervous system stuff is HUGE but don't put all your eggs in one basket and forgo further testing if you somethings medically not right (like having a messed up gut despite following the diet a medical professional prescribed you). at the same time don't neglect your nervous system just because you found some new pill or diet. now I keep a daily calender and everyday I tick off - food, cold shower, meditate, pace, sun, excercise. it keeps me consistent and accountable. I do seated exercises for seniors daily. I'm still limited but energy is really consistent rather than huge crashes and days, weeks of being bed ridden. sorry not sure if you care for all this info but here it is! I fully believe in my recovery I hope you believe in yours too. 😊
@@shaunnarochelle excellent info! So glad you're doing better! What did you do to heal your nervous system issues?
This is a very valuable video! Thank you so much!
I was wondering if you saw the recent Ron Davis interview where he talked about how one of his scientists fully recovered from mecfs. He said that she had a theory that if she entirely avoided crashing that she could recover. So for one year she never crashed once, and then she fully recovered.
It got me wondering if that was the key.
I felt like you would be a really good person to reflect on this question because you have interviewed so many people who recovered, and obviously in this video you said that pacing was key for a lot of people.
But I wonder, of all the 75 people you interviewed, did any of them NOT pace?
When you think back, for example, on all the people who recovered who did brain retraining, were they also doing pacing?
Because with all of these people who recovered and are attributing it to a variety of reasons, maybe all of them were also pacing, and that is the real cause for the recovery.
I just wondered if you had any reflection on that.
If pacing is the one common thread between all of these people, and if what Ron Davis's story reflects is true, then we would have a common path to recovery.
Thank you for the video!
I would like to hear a recovery story of a woman where PCOS was a complicating factor. Does anyone have a link to share?
Love this summary. I don't always watch a full recovery video but I always find it inspiring to hear that people have recovered.
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Hi raelan! Love your videos! Im particularly new in this ME/CFS world, and have been rummaging the internet for pathways to recovery. One thing I have noticed ( particularly in the reddit groups) is the rigorous recovery policing ( doubting recovery stories). Moreover, they seem to have a very negative connotation to brain retraining, and think there is no such thing as recovery at all. I was confused by this outlook, and I wonder what you think about them, since you have been engage with this illness closely for such a long time. Once again, love your videos!
Great observation! A theme with people who recover (myself included) is to avoid these spaces. I think that belief (or not believing) in recovery can have a big impact on your health. It's not the only component obviously, but surrounding yourself with optimistic people who believe in recovery is very helpful I think!
I'd still watch all 77 interview vids, personal stories are so valuable especially for us when "standard" treatments failed, we can gather useful information from the people who came out of this
I recovered from post-viral ME after 5 years. Then I relapsed. Then I recovered again. Then I relapsed. Then I recovered again. Etc. Had you interviewed me in any of those “recoveries”, which I believed to be permanent, I would have made a great recovery story. Then I relapsed… except much worse because I had refused to take ME into consideration as I went about living my “recovered” life. It is an enormous regret. Had I allowed myself to accept my limitations, I suspect I would be much better off now.
Thank you so much for everything you do for us ❤️ it's an honour to even know such a beautiful and compassionate person like you 🙏 thanks a lot🙏🙏
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I’m doing research for my mom since nothing western is working. I was trying to click the link in the video for all the research you have done for the 75/75 full recovery. My mom won’t try anything eastern unless it’s proven by a study. Thanks for this hopeful information!
You are an absolute godsend Raelan. I listen to your videos over and over to keep myself on track. So very very thankful 🥰
Thank you for this Raelan. It has been a long time and I've tried so many things, but it's positive voices like yours that keep me going. I believe I will fully recover.
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Hi Raelan, thank you for you're doing to help us. I'm using your information and videos to help my brother who has CFS. I just thought I'd mention that your pointing to in-video links to other videos don't show any links, and that's also happening on all the other UA-cam channels I've seen in recent months. Seems to be a glitch in UA-cam's tools. But sending people to links in the show notes is a great alternative. Thanks again!
Has your brother recovered?
God bless you and your work
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Boy do I agree with you about the names! Having had it for 45 years, I've heard them all, from Epstein Barr virus to CFS - a TERRIBLE name designed to make us sound like malingerers. ME was simply a better descriptive term invented by the English which included as one doctor put it, "The pain, the brain, the energy drain, and oh god I wish I could sleep again!" No wonder people prefer it. But I too believe they're all the same thing -- and I would add Fibromyalgia is also on the spectrum. People with ME tend to have more fatigue; those with Fibro more pain, but it's a spectrum. I also agree about many men having it. I found, however, they tended to recover more often as often the men had jobs that enabled them to take a sabbatical or get paid time off. (Some were just were bigger babies and said, "I'm sick, I need to stop EVERYTHING for 6 months." Most women, due often to having kids or husbands, tended to push themselves, which made it worse and longer lasting.
For me, facing old grief and trauma was hugely healing and key to my recovering by 80% after 20 years mostly housebound and often bedridden. Getting OFF disabling medications was huge, as the standard medications may help briefly then make everything massively worse. I agree, supplements tend to be expensive and useless. The final piece of the puzzle and the one I hope will help me recovery completely is mind/body and somatic work. What a revelation! That MOST chronic pain and illness where there's no structural component is caused by the brain, which can be "rewired" with somatic and vagus nerve work." So many people have completely recovered after years or decades disabled, in agonizing pain or ill - who are now living a rich full life.
For people who are still suffering, in agony, and exhausted, I totally get how despondent you may feel. I've been there - and once believed I'd never write, dance, or perform again -that part of my life was over for 20 years. Yet now I'm doing ALL of them! It took time and lots of work, but it IS possible. Like Raelan, I believe EVERYONE can heal. Learning self love, care, and compassion is key. (Inner child work helped as we can be kinder when we realize we're dealing with wounded inner children. I'm learning about Internal Family Systems, a similar process.)
I love your energy and enthusiasm, Raelan. These videos encourage people whether they're beginning the process or have climbed a long way up the mountain of recovery.
I have long covid with PEM and fit the diagnostic criteria for me/cfs. Navigating this disease was so shocking. I feel like there's a few extremes on the Internet around long covid me/cfs. The brain retraining group, the functional medicine group (mold toxicity, gut microbiome, supplements etc), conventional med regular (beta blockers, LDN, IVIG, nicotine patch, mitochondria etc), conventional med experimental (ivermectin, nattokinase, antivirals, HBOT) and a few more. And they all insist they have the solution and everything else is crap and doesn't work. 🤷♀️
Overall it's just massively sad how little money has been spent researching me/cfs for decades. Barely any clinical trials done on treatments and they've only recently discovered what physiological changes even happen in the body.
Where can i find your success story
My doctor said I was crazy for believing mind over matter, He is saying I have cancer, I have been fighting it for a while now, I'm sick of all the treatment. how can I get better with all these people reinforcing that I am sick. I believe there for it is, thankyou Raelan.
Thanks Raelen. Awesome video. You hit all of the points. I hope to share my recovery story on your channel as some point in the future.
I love your videos and content. But more than that, I’m grateful for your support and the way you can lift me up and keep me going. I truly believe I will fully recover, but some days it feels like it will never happen especially if I’ve had a relapse. Perspective is everything! Thanks for all you do for this community ❤️
Thank you, Michelle! 💓💓💓
How are you doing now?
@@tanyawieczorek6603 I’m pretty functional. I’ve been working a part time receptionist job and have started back doing part time with my regular job as a massage therapist. I can go for 1/2 hour walks every day and just started riding my stationary bike again. So much better but still have a bit to go yet to be fully recovered. One step at a time!
I thought ME and CFS were always considered the same thing..
I have CFS and am having a bad crash right now. The talking is too fast to follow and this goes into too many directions. This is not a criticism of your channel. It's great that you recovered. Most of us here are also trying to recover currently. Shorter videos and slower talking would help. Thank you for trying to find help for us all.
Sorry you are going through that. You probably know it, but you can slow down the speed of the video in settings in the video player.
Hey how is everything now
The Safe and Sound Protocol worked so well for my son. Use a trained practitioner if this music brain training resonates with you.
I’ve been doing ANS rewire for over 18 months and only started seeing results after 16 months.
The only medication that’s helped me is low dose naltrexone. I had my biggest leap in recovery after having COVID, don’t know how to explain that 😂
Maybe your the fear of covid was contributing to your stress level and after you had it, you were relieved as it was no longer a threat. Wishing you all the best.
There are several stories of people with CFS who have huge improvements after serious infections or illnesses. We don’t know why, but it does happen. They think it might be an immune response,as in your immune system really rallies to fight covid and simultaneously heals the areas of your body that trigger CFS. But I also think this depends on how your CFS started
I’ve probably spent about £7,000 over 14 years and haven’t got anymore money but there good things that are free it’s just the solitude that seems be unresolvable. I have tried everything so I have a befriended for half an hour a week but not having social interaction affects me psychologically. I can only manage about half an hour if I were to meet up with anyone but the pandemic makes that almost impossible. If anyone has any thoughts on how they manage isolation positively
I got myself a ragdoll cat ❤️ he is the best! Sending you good wishes!
I believe recovery is possible, I nearly recovered, had a full time job, was salsa dancing to. I needed lots of rests, it was great for about 10 years. Then however 6 years ago I had a flu shot and severely worsened me. Im so incredibly unwell still. Mostly bedridden. So you can recover, but you can worsen too. Don't forget that. Also some people with very mild ME/CFS severely worsened after a Covid infection. Not everyone can recover. Also because ME/CFS is a very heterogeneous (cause for many reasons).
The mental positivity stuff helps but it doesn't cure autoimmune diseases. It doesn't cure cancer either. Good management helps a lot. Hope stops you being depressed.
Love this 💙
Thanks Blue 😉
This is Awesome ‼️🙌🏼 compassion and kindness for myself 💓💓💓 guard your space fiercely ‼️ 💯 belief I will recover ‼️‼️ I am an effing bad ass‼️ one of the keys here that I have been missing is connection and support 😢 been such a long, lonely , no one understands journey 😢 other than watching your videos , how can I connect , like actually talk to others to connect ??? And , since this video is 2 years old , would you have any other key tips and strategies you’ve learned since then ?? Thank you 😘😘
Much appreciated, Lori 🧡
(Working on 150 ME/CFS recovery interviews summary video.)
Such a great video. It doesn't matter if recovery is possible for everyone or not I fully believe that if you don't fully believe you can recovery then you won't.
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Brain retraining has an unjustifiable amount of negative stigma amongst a large portion of the ME/CFS community, specifically those groups and forums where there's alot of uncertainty, negativity and despair. I think it's cause people are easily offended by the rhetoric "ME/CFS isn't a psychological condition!!!" so they are quick to dismiss it. Brain retraining isn't think happy thoughts and ignore symptoms, instead it's reconnecting the brain with the rest of the body. You are experiencing pain and symptoms because your nervous system is out of wack and your brain is continually sending messages of danger keeping you in a panicked / fight or flight state. There's no coincidence that people that recovered had to change their mindset... Which includes how we react to thoughts, symptoms and limiting beliefs (all things that keep people stuck). This is in essence a form of brain retraining.
Nah, they don’t believe in it because the best doctors on earth like Dr John Chia, Dr Lapp , Dr Ron Davis say this is garbage nonsense - like the lady says she’s definitely no expert and this isn’t professional advice so she won’t get sued when she makes someone who is severe with ME/CFS far worse- This is literally for suckers that were misdiagnosed and think they have ME/CFS what’s the one thing these scumbags all have in common? Unless you’re desperate, stupid or a lot of mental illness you’ll figure it out-
Just like CBT so No thanks!
@@larryc1616 I did not find CBT/DBT useful, and think parts of it are kinda untrue...like, detachment and non-judgement are too similar to disassociation, imo, and I needed to do the opposite of that. But I do like some of the polyvagal theory stuff, because with that the goal is to stop disassociating and change your environment or choices accordingly. It’s just about responding to your needs by listening to your body cues instead of ignoring or pushing past them.
It's because many of us have personal experience and know that it doesn't work like that. As my mental health has improved over the years my physical health continues to decline. I've done trauma work, mindfulness, mind-body work, etc. It has helped me accept my condition and limitations but it hasn't healed me physically. One program actually pushed me into further decline working off this model. It's convenient for people to say this is the key to healing because if a patient tries and doesn't get better they are just accused of not trying hard enough. Blaming the victim and ignoring the real needs of people suffering. That's what we have a problem with.
IF YOU NEED ANYONE ELSE TO DO AN INTERVIEW ON IM DOWN! IM ONLY 32 and have felt symptoms since 2009. I’ve been going through SO MUCH and I’m very passionate about finding my solution now
@Raelan Agle Hello, I was wondering if there could be any information on people who recovered from Long COVID with other symptoms. I know ME/CFS is one of the major debilitating problems that many of us face. I personally, struggle with chest tightness along with other issues and I desperately need some hope and a good information source.
Thank you Raelan! This video literally changed my life by introducing me to brain training ❤
Wow, Paul! I'm so glad it was helpful. 😊 P.S.: I really appreciate your support. Massive thanks!
100% my own enemy by not recognising how bad it is. I've got three diagnoses and each are debilitating on their own. Yet I have never previously recognised this
Thank you Raelan for your efforts of making these contents that are as worthy as medications itself. The sense of understanding that it makes CFS sufferers feel, and the hope that it gives. I hope you won't get tired making these videos. Hugs. 🥰🥰🥰
Sending hugs! 💗💗💗
How are you doing now?
Just wanted to say, thanks Raelan for your encouragement, advice and for giving hope!
Enjoyed this video! God bless! Jx
I have to keep iPad to 15 mins in the morning and 15 mins in the afternoon just for checking emails and some you tube. I have tried glasses and shields but I continue to be sensitive to emf and WiFi. I can read for a short time only and listen to an audiobook for half an hour a day but it leaves a lot of time to think lol
Cutie😮
great video! You're the best Raelan.
i so needed to hear this. Healthy all my life till the vaccines and it almost killed me.
This video and the variety of different ways how people get better and how some don't just proves to point (in my opinion after many years) that we are not all dealing with same root cause. And that can even mean that the we might be dealing with many different illnesses. There is no other logical explanation. I'm definitely open to other opinions though.
Hi Raelan, I just want to say thank you 🙏. I have been suffering from Long Covid in New Zealand. Your channel is great.
Aww Thank you! 💓💓💓
How are you doing now?
Thanks so much Raelan! You are so amazing thank you for all you do!!! I really needed this today! I just started your course the other day as well!
Thank you, Kathy! ❤️
*Oh wow. What a cool idea for a video! ;)*
Wow, cannot tell you how helpful this is. I just recently have come across all the ME/CFS recovery channels and programs and am pretty overwhelmed trying to figure out where to start. Thank you so much for all the effort, time and passion you've put into this and so generously share - this one's a special gift. Xoxoxo
Glad it helped, Diane! Much love ❤️
nobody takes my situation seriously - hope is a challenge every day. Your words at the end made me burst into tears. Thank you for the motivation and your words ♥️
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This was so incredibly affirming of the path to recovery that I am on! I know that I can trust myself and my bodies wisdom but it can be disheartening when things I try don't yield results. That being said I wholly believe in my ability to recover and I also believe that my body know what is best. Thank you for all that you have done for our community xoxo
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How are you doing now?
How are you doing now?
After very recently being diagnosed with post-viral fatigue/CFS after months of tests, I can’t explain how grateful I am to have stumbled across your You Tube channel. Raelan, you speak as if you are living beside me as you explain just how tough you know CFS/ME to be. Your cheerleader type support is fabulous, and you have unknowingly caused me to burst into tears several times as you show such relatable compassion for the genuinely awful experience that is CFS. I am so convinced that I will find the tools to recover, but I’m also excited to rediscover who I am and need to be in order to live a more authentic, healthy and healing life…and your videos will be a great source of support. I am
lucky to have a great GP, but the NHS in the UK are still finding there way with supporting recovery of CFS, so lots to learn, but I am convinced the answers are out there. Thank you for creating this channel, sharing your own experiences, and delivery welcomed advice for us all to learn from. 🤗❤️
Thank you, Jo! 💗💗💗
Hi Jo.
I haven't watched this video yet, so it may already be mentioned in there..
But if not, I'd like to point you towards The Optimum Health Clinic in London. Alex Howard is the founder, having recovered from CFS/M.E many years ago now he started The OHC so that he could help others to recover and/or improve as there was no help available for him when he was sick.
You don't need to get to London to work with them, they help ppl around the world with their online programs.
Most of the ppl who work for Alex also had CFS/M.E and recovered (using his program.)
Alex also has a new (only his second book in 20yrs..He wanted it to be perfect,) book out, released last November, called 'Decode Your Fatigue.' (It's only about a tenner.) In it he basically goes through everything they do at The OHC to help ppl recover, so that we can help ourselves, in a step by step format.
CFS Health in Australia is also great. (Just not as detailed as working with the OHC, but that shines in the £)
I signed up with CFS Health, 4 yrs ago now when I was got super very ill (had already had symptoms for 5yrs,) and I'm alot better, though my recovery is crazy slow. But, we are all different, and I've had alot to deal with for the last couple of years on top of the CFS/M.E. I also live alone.
I'm about to start saving to try to work the nutrition department of The OHC, as I believe it will help in my recovery. Gonna take me a while though as I'm unable to work, and have a cat that drains my benefit. Lol (She has arthritis.)
Anyway, just thought I'd leave you some info incase you hadn't heard of the above mentioned.
They both have YT channels where you can glean lots of info, and ofc websites and FB and Instagram. 👍
Best of luck on your journey. ❤
Thank you so much for getting in touch @loobylouboti I really appreciate you taking the time to let me know about The Optimum Health Clinic, and share your own journey. I’m in touch with them at the moment and hoping to work out a way to support my recovery, but you are right about having to save up! I’ll definitely purchase his new book from Amazon today, and look through their channel too. Thanks again for being so thoughtful and kind. ❤️
@@joferguson7640 Ah yey! Glad you are already in touch with them. They do AMAZING work! Good luck! I'm rooting for you!
And ofc you're welcome, 😊 We have to stick together and help each other out I'm this journey.
I'm actually looking to start and lead a support group locally for just that reason.
His book is fab, esp for 'beginner's.' And lots of great reminders to give someone like me a kick up the bum, too when complacency sets in 😉
Take care.
Best wishes ❤
So inspiring Raelan! You have given so much to so many! Thank you for that!
Thank you, Carolyn! 💓💓💓
Thank you
Why isn’t this channel so much bigger. Ur amazing please never stop