I’m a psychologist with CFS. Recently one of my dreams after getting well is to go into science and do an interview study on people that healed from CFS. (So basically exactly what you’re doing Raelan 🙃, but using methods that are approved by scientific journals etc) Thank you for a great interview and all of your work!
Great interview! 100%. I agree with Sjoerd that the medical world needs to listen to the data you've been gathering, Raelan. The anecdotes are adding up and the data is there! I don't have the greatest faith in our medical system being open to feedback. Maybe a journalist might be watching and realize the power of your channel? This needs to be the first result for CFS instead of the sad lady slumped over the picnic table.
Every single one of us can help make the medical system take note. We just need a few doctors that are listening. Thankfully, my doctor is listening and even conducting own (non-pharmaceutical) studies now. He also reports my experiences (with things that helped me) back to his other patients with ME/CFS and Long Covid. And he is also in touch with one of the leading researchers for ME/CFS in Germany. So there is hope that the information is trickling into the system.
Another fabulous and uplifting interview, this channel has definitely been the catalyst for my healing from long covid after 14mths I’m more or less there and would love to share my story if you have space for me please Raelan? Thank You Sjoerd, I really love how you’ve broken down your recovery timeline. Congratulations may you continue to heal!
I agree with his statement about the brain creating fatigue to make you avoid danger, but I also believe the fatigue comes from the nervous system using up all your resources to be overstimulated
Yes its the same thing. In the core chronic pain is psychosomatic and once people realize this and calm their CNS into parasympathetic statr the disease can and usually is over with pretty soon
Ha Sjoerd, superfijn dat je dit wil delen met de wereld! Onze verhalen zijn echt bizar hetzelfde. Ook ik was nog jong, zat diep in de bodybuilding wereld en werkte daarnaast 80 uur per week. Dat heb ik zo'n 5 jaar volgehouden, en toen ben ik ook gigantisch gecrasht. Ook ik moest terug naar mijn ouders, en werd gediagnosticeerd met burnout. Ik had een burnout coach en bereikte maar weinig omdat mij verteld werd gewoon te ontspannen - maar dat had ik al 5 jaar niet gedaan! Mijn enige ontspanning was altijd de gym, maar dat kon fysiek niet meer. Uiteindelijk ben ik ook jaren ziek geweest, waarvan bedgebonden geraakt voor 9 maanden. En toen idd ook de hele molen door van ayurveda, supplementen etc. Maar grappig, qua oplossing was het voor mij eigenlijk ook heel vergelijkbaar met wat er bij jou gebeurt is! Ik heb ook gewoon een hoop gratis informatie gekeken en gelezen en toen mijn eigen programmatje in elkaar geknutseld, met meer resultaat dan ik ooit vanuit artsen heb gekregen. Met als basis hetzelfde als jij gedaan hebt - realiseren dat je eigenlijk gewoon alles wel kan en dat je veilig bent, ook al protesteert je lichaam. Ik ben echt zo dankbaar voor al die informatie, want zonder die informatie had ik nooit geloofd dat die symptomen eigenlijk geen reet uitmaakte, haha. En ook wat je zei over meditatie is ZO WAAR. Ik deed al een jaar meditatie maar mijn ziekte veroorzaakte zoveel stress dat het een druppel op een gloeiende plaat was. Pas als je je ziektebeeld aanpakt die de bron van je stress is, dan pas gaan die dingen wat doen. Ik waardeer ook ontzettend dat je pleit voor het integreren van al deze data in de reguliere gezondheidszorg. Hier zou echt meer centrale organisatie in mogelijk moeten zijn. Misschien mogelijk om bijv stichting ME/CVS hierover te benaderen? Die hebben ook nog wel deprimerende info op hun website staan onder het kopje herstel, die niet perse strookt met de realiteit. (mecvs.nl/informatie-mecvs/wat-is-mecvs/ ) Qua reguliere gezondheidszorg: ik heb hier overigens wel hoopgevend nieuws over! Ik ben zelf onder behandeling bij het NKCV van de VU. Ik kwam daar binnen na mezelf van bedgebonden naar 60-70% energie hebben gekregen door TMS/polyvagale theorie/brain retraining principes, en vroeg me af of ze mijn aanpak zouden waarderen of juist afwijzen. Het fijne was: ze hanteren daar eigenlijk ook veel van de principes van TMS. Het verschil is wellicht dat bij brain-retraining de nadruk meer ligt op EERST het kalmeren van je zenuwstelsel en daarna dus met vertrouwen activiteiten weer opbouwen, terwijl bij het NKCV de methode is gewoon dingen te gaan opbouwen en daarmee dan weer vertrouwen krijgen. Dus in Nederland hanteren ze gelukkig al vergelijkbare principes, al is het nog niet perse expliciet gekoppeld aan theorieen over TMS/zenuwstelsel regulatie. Daar ben ik intern wel een beetje voor aan het lobbyen. Maar goed, dan moet je wel al diep de gespecialiseerde zorg in zijn, deze info/kans zal je bij de gemiddelde huisarts niet 1 2 3 krijgen denk ik zo. Dan nog een vraagje, hoe ver ben jij nu qua herstel? Wat lukt al wel, wat nog niet? Fijn om te weten dat dat laatste hoe dan ook een kwestie van tijd is, en dat we uiteindelijk weer alles kunnen wat we willen (maar wat we willen zal, in elk geval in mijn geval, niet meer die 80 uur werken zijn, haha). Veel succes met de laatste loodjes! :)
Bedankt voor je verhaal Sjoerd! Hier in Nederland kun je óf alleen maar negatieve verhalen over ME/cvs vinden óf men (ook artsen) gelooft er niet in. Ik hoop dat dit soort genezingsverhalen ook in Nederland steeds meer bekendheid zullen krijgen en dat ikzelf dit verhaal ook spoedig zal kunnen vertellen 😊 Heb jij nog een braintraining cursus gevolgd of puur zoals je het in het interview verteld door jezelf herhaaldelijk te vertellen dat je oké bent?
@@roos12925xg Hé. De klachten die ik nog moet overwinnen hebben niet zo zeer met Chronische Vermoeidheid te maken en meer met hoe ik soms reageer op stressvolle situaties. Ik merk soms dat ik nog te sensitief ben. Van de Chronisch Vermoeidheid ben ik ongeveer een jaar geleden hersteld.
at the moment I believe focussing on helping your mind and body to feel safe is a most powerful way to regain your health: enjoying yourself within present boundaries, little wins reducing the fear and gaining confidence, sense of control, and slowly expand, focussing on what excites you, self compassion, breathing, nature, living from 'bite size'
Leuk om iemand van Nederland te zien! :) Wat moedig om je verhaal te delen. Heel blij voor jou!!! Ik herken zoveel... Wat je zei over lang niet naar de zee kunnen gaan en eens je daar dan terug bent, is dat het mooiste gevoel dat er is!
Hi, I agree with him , in the most of all videos I had followed from you there is stress after a situation or trauma that trigger ME. I had gott B12 injecctions, Q10 and naltrexon , but I believe that the brain needs a lot of positiv energi in order to leave behind you ME and negativ energi, if you take a few steps is a big step for you. I think it is important to focus only on the present day , not yesterday and not tomorrom only the present day. Thanks for all yours videos !
Dank je wel Sjoerd! Fellow Dutchie here. I really appreciate how you summed everything up, direct and concise. I’ve had symptoms on and off for the past 10 years, and heavily for the past 2 years. I found this channel about a 1,5 years ago, but somehow couldn’t wrap my head around the fear and neuroplasticity thing. It’s only in the last month that I’m realizing what this means for me. It’s difficult, but I think I can do it 😊 Hopefully I’ll be on your channel too in a while @raelanagle !
Thank you for another great interview! The silver lining of post covid is that the medical community is being invited to wake up. It’s asking for a different approach and means a massive overhaul of how we approach health issues. In a lot of cases it will not be the doctors doing the fixing, but the patient who has to be on board, self-reflect and do the work. That change is not going to happen overhight. But I’m hopeful; I now have two doctors (company and insurance) supporting me and believing in my mind-body approach. They’re experiencing a lot of resistance within their field (and from patients), but they are in frontline of change which needs to happen! Kudos to Raelan and all you amazing warriors out there showing the way!
I love that you are neither claiming to have THE ONE ANSWER nor are you vilifying the medical community. Sharing experiences, admitting there is no one-size-fits-all approach, being open to different approaches and helping each other - that is how it should be like with so many problems and issues.
Thank you both for a wonderful interview! I happen to have a lot of doctors in my family, so I can explain a little bit why it seems so impossible to get doctors to recognize significant anecdotal trends like the valuable information Raelan has collected from these interviews. First, most doctors are bound by hospital and insurance guidelines, meaning if a particular treatment is not approved by the hospital and/or insurance, it cannot be recommended even if the doctor personally feels it would help. Insurance in particular is very hard to navigate (in the United States) because it is largely private and designed to make money, not to provide the best care. Second, it is hard to get new information to doctors, especially if it is not published in a medical journal. Even getting a study published takes many years (someone has to have the idea, secure funding, carry out the study, analyze results, get peer review, then wait for their turn in the publishing schedule). So when information is in a journal it is already probably a few years old. Then for that same information to get into a medical textbook for medical students, it has to be replicated many times, with many clinical trials, and this can take decades. Okay, so now it's in the textbook and a med student learns it. Now that student goes through rotations for 5 or so years before they start practicing, so when they start as doctors the information they have can be twenty years old. This doesn't mean it's wrong, and much of the information is foundational and rarely changes, but for "newer" conditions like ME/CFS it means we don't even get into the medical conversation until people have been suffering with no answers for decades. There is hope, though! All doctors (in the US, at least) are required to do "continuing education," which means that they need to spend a certain number of hours per year learning new/emerging information to keep their license. Often this information is still in the early stages of studies/clinical trials that have been repeated enough to show a significant trend, even if it hasn't made it into the standard medical curriculum yet. So the best way to get new information to doctors is to conduct studies that meet guidelines for publication in medical journals, and that generally means finding a scientist who wants to do a study on a particular subject, and also finding a funder who wants to fund studies on the same subject. Many hospitals are part of a university system, and many doctors spend some time teaching and interacting with researchers. So every time we go to them with new information, that is another patient who is trying some "crazy new thing" that seems to be working, and it's possible that this can create a buzz that leads to more investigation. Sorry this is so long -- and it's really just the tip of the iceberg -- but I understand the frustration with the knowledge gap and I think understanding why it exists can help us understand that we aren't doing anything wrong, the system just isn't build to move information quickly. Channels like this one are bringing this information to more people -- including doctors -- and that is a significant step!
A lot of wise words here. I am still recovering from long covid which has been a nightmare of epic proportions but I often wonder now if I am stuck in a loop partially caused by the flight or fight syndrome
'A nightmare of epic proportions' is such a good way to describe it. No one would know if they hadn't been through it. I always say it was like wading through hell. I'm sorry you experienced it, too, but glad you're improving.
The thing is, that if a persons symptoms have become neuroplastic then changing your thinking can work. But for those of us who have done brain training and all the other stuff, it’s not neuroplastic. I’ve ruled that out. My gut health is great and I’ve addressed emotional things too. I believe it’s not always a case of mind over matter. It’s matter Over mind. Sometimes these stories are not helpful. Because if brain trains fixes then you were already healed bar the thinking.
There are perspectives on neuroplasticity that go deeper than brain retraining Here’s one that may be of interest: “Why getting 'calm' isn't enough || Neuroplasticity + Healing Trauma || with Irene Lyon” th-cam.com/video/IBtlIEhJsUI/w-d-xo.html
I have been a moderator in a severe ME group and we have found that while some people respond to neuroplasticity approaches, a great many do not. Of course, people can always say that we haven't found the right approach or not quite got it right but, in my humble opinion (as a non-medically qualified scientist with over 25+ years of ME experience) I think it is incredibly unlikely that neuroplasticity will be the answer to all ME and, like you, think that there are a lot of cases which require matter over mind for fixing, in the way that Ron Davies and others are looking at. That is not in any way to denigrate these kinds of approaches and I wish they did work for me. I would recommend that everyone try them to see if they are the silver bullet for their condition and hope that they lead to many people going on to live normal healthy lives.
Thanks for another great interview. I have a couple of questions for Sjoerd. when you finally realised the problem was with your brain being stuck in fear survival mode. Did you just start going about your day as if nothing was wrong or did you slowly start increasing your activity again? Did you flare up symptoms and then accept they were safe and keep going? What methods did you use to convince yourself you were actually safe and ok?
Hi, i gradually started doing activities again. I started saying to myself that if i crash from this activity it is because i was anticipating the crash, it's not my body is doing this it is my mind reacting to the fear i have of the activity itself. So if you trust that your body can handle the activity perfectly fine you can expand your activities and if you have a crash, don't panic. Just say to yourself i had an activity, i'm a little tired right now but that's perfectly fine and trust that your body will recover from it. If you panic after a crash you will just prolong the time it takes for you to recover. Start trusting that your body can handle doing activities. Good luck!
@@sjoerdvermeijden That's great. I'm already doing that. Nice to hear someone else recover using this method. I am making progress and just having to deal with the symptoms in flare ups and crashes. Just crashed from mowing my lawn on Monday but I was in an agitated anxious state before doing it so it makes sense as to why it happened. Thanks for your reply, really helps to connect with someone who has made it to the other side 👍🏻
Another wonderful interview! Thank you both for being humble and honest❤ We need to reach out to open minded health journalists, and also use the power of social media ourselves sharing this kind of evidence! If each of us keep sharing on a regular basis, someone will notice. Those of us who have recovered using mind body connection could also mingle and create some sort of group with the purpose to spread the word and inspire (my A type personality’s way of brainstorming) 😅 Is it only me who wants to meet and hang out with all of you? 😂
Raelan in answer to your question, you can perhaps have a list of causes and resolutions that folks experience. Then perhaps a study could be done with a charity. Like in the uk there is the ME association. I wrote to my mp, who happens to be Theresa May, you may know her, I wrote to her telling her my story and how I was paying X in taxes and now am not and am on benefits. I referenced some news articles about folks in the news who suffered and how there is funding gap. She said she's taking it to parliament and our chancellor in the uk. I basically told a personal story but I put it to her in monetary terms which will make more sense to politicians. I haven't heard back yet but I am certain I will as she's come back on other things. One thing that folks out there understand is money and that is the leverage in my opinion!
Hi ! And when you have 24 /7 symptoms ? Should you increase activity and ignore them knowing that’s if nothing wrong with you? Even if they are debilitating? I’m trying to apply this theory but it seems that stress gives me energy and when ít goes away I have lots of symptoms. Specially sound and lights ect… I’m also bedridden
I would watch some stuff by Dan Buglio or do Faith Canter's free CFS program. I'm not advocating ignoring symptoms all together, however i would stop giving them so much attention. That sounds confusing i know. What i would say is stop letting symptoms run the show. Until then, watch some content by Dan Buglio and get a better grasp on TMS.
@@sjoerdvermeijden thank you, it’s indeed very confusing ! I’m in the couch very fatigued and with lots of sensory overload asking myself if I should try to walk for some seconds even if I’m feeling like dying !??!!
@@clarissericardo2313 I would try it and if you're tired afterwards accept that you're tired and don't panic about it. In fact, stop panicing at all. Trust in the fact that your body has the ability to heal itself.
Yeah I've been there Clarisse! and I did get through it. I'm trying to remember what I did at that time...in addition to the beliefs and thoughts work mentioned by other commenters, I was doing a lot of EFT (can learn this tapping exercise for free online), slow deep belly breathing to activate the vagus nerve and regulate. and I made a point of setting aside a decent proportion of my daily energy to enjoyment whether that was putting on a cheerful face with someone whose company I really enjoy or having a little boogie to my favorite song even if I was lying flat. I watched and listened to a lot of content that made me feel happy and I removed a lot of stressors. I took adaptogens to assist with nervous system regulation. I think all those things helped, and one day I found myself enjoying the stretch of walking through the house 🎉 and it got easier from there. I didn't think about my symptoms much. I did do lots of encouraging self talk eg feeling rubbish getting up because of POTS I'd tell myself "good job you're ok take it easy, there you go". Same thing if there was a bright light or sound. To answer your question more directly, I did a bunch of things to support my body until it felt good to move and then I did a bit more based on how it felt. This might be a little different from other people but works for me.
Such a terrific interview! Intotally agree with the fear thing and am back to brain retraining. I also agree with the trama of the illness. How do you let go of that fear when it comes to activity? Do you just talk to yourself and reassure yourself or do you add some other way to calm the nervous system too?
@@sjoerdvermeijden did you ever join Dan's group from his Pain Free You youtube? I was thinking of doing it. Im having a really hard time letting go of this fear of doing things.
hi, have you heard about mega dosing of thiamine, that had encouraging results in a survey (not research)? I have been reading a lot about it recently, and I wondered if you heard about it and what you think
No but like i said in the interview. If i were you i would stop relying on external solutions. If you are in a state of stress you can take whatever and however many supplements you like it will not fully heal you. Do the internal work. Start observing your thought patterns.
I think encouraging the scientific community to look at the strength training described by Raelan and others would be a good thing. I wonder if changes to the mitochondria during strengthening, helps reduce the immune response that triggers all the neurological symptoms of PEMs. The scientists know there is a reduction in the autonomic threshold (AT) among other things in ME/CFS, and maybe shifting mitochondria into a different state through strength training improves this too. That said, aerobic exercise IS dangerous for ME patients, especially at first because it can push them into PEM's which among other things, cause inflammation of the brain and potentially progressive brain damage. I personally lost my ability to do complex math and logic, even though my brain's doing pretty well otherwise with the help of low dose Abilify and low dose Naltrexone, which both reduce brain inflammation. Learning how to calm your nervous system and reduce your anxiety around the disease is really helpful, staying out of fight or flight. It would be good practice to train all patients in how to do this, because it also reduces the chance of triggering PEM's. I'm following Raelan and CFS health's processes for improving with the hope of not being trapped in my house anymore after 17 years with ME/CFS. I have a pretty good activity pacing baseline to avoid crashes and the strengthening program is going well. But walking a little too much (aerobically) puts me right into a relapse. I'm only 3 months in, so maybe after a year of strengthening and using my heart monitor to stay under my AT, I'll be able to walk substantially more. I'm feeling hopeful :) I'm also hopeful about the Stanford ME/CFS research group who think they may have figured out why PEM's happen at all, involving the brain and mitochondrial dysfunction, and a dysfunctional itaconate pathway. They have some ideas of how to stop it with a drug approach and will start clinical trials this year. I'm keeping my fingers crossed, but in the meantime am hoping to get stronger with Raelan's approach, which could put me in a better spot for healing all the way with Stanford's approach if it works out.
Thanks for your post, I found it really interesting. I’m in the UK but will try to keep an eye on the Sanford info for new findings. One track I found useful to explore while working on my own DNA analysis was checking out what foods flared up on different array tests. I know there is some debate around this topic, however excluding many of the “red” list foods did help lower the physical effects I felt in fascia and the tightness/restriction and arthritic type pains. Also the impact on energy levels to a certain degree. NMN and NR supplements definitely boost my energy levels temporarily. My eyesight becomes clearer in seconds as NMN dissolves under my tongue, apparently your eyes use a lot of energy! There is no one size fits all answer clearly, just got to keep trying to see what works for you. Often wonder how many of us might have been born prematurely? Is that a factor? I had a difficult birth and almost died, was I set up from them even? Who knows…
@@kcam3683Being born prematurely/almost dying is a developmental trauma, so it most likely affected your nervous system even though you don’t remember it. Irene Lyon has a lot of good videos on trauma and the nervous system if you wanna learn more.
@morelimefalmouth I definitely agree about accepting the current circumstances, and allowing a grieving process for the losses incurred. I indeed found that by not fearing the discomfort of the symptoms and letting them exist but trying to keep them in the background with any pleasurable distractions I could handle helped a lot. And I followed the idea of starting movement very gradually, beginning with trying not to hunch over when walking to the bathroom or grabbing my very simple meal. Even 39 seconds of straight posture began the ability to do more activity. But I wanted to comment actually because there may not be mitochondrial dysfunction for some, maybe those earlier in the illness but there definitely was for me. I was not afraid to walk to the kitchen or go get my meal, but would sometimes have ro walk on hands and knees with pauses face down on the floor if I could do it at all. It was when I began cold showers, my energy began to return, and Red light therapy added more, and then I was able to do small short sets of very light weights and began slow short walks. Cold exposure with breathing, the light therapy and the weight bearing all are proven to boost mitochondria l function. From there I was able to really work on mindset because I could begin walking and felt the potential for recovery. I did focus on not expecting a crash necessarily, but also said if there is one that is OK. I will surrender to it, take all the steps to lessen the discomfort (hot packs, and yes magnesium made a huge difference with the cramping too) and allow it to pass and take the info, I was walking abit too fast or far, just walk slightly less next but gently. Then I was able to commit to trying as consistently and gently as possoble to move my body. Even if that meant that day I would do an overhead arm stretch on the toilet before going back to bed. FOR ME IT WAS BOTH PHYSICAL REPAIR AND MINDSET.
@@isholaas You were healing the nervous system with bottom up therapies and now you are using a top down therapy (mindset/CBT). Both can heal the nervous system. I think the commenter was suggesting that people should let go of the semantics and focus on healing the root cause.
Regarding your question of how we can get this information (about the nervous system) out there: I think some doctors do know this info because they’ll tell their patients that it’s “stress” that’s causing their illness. They’re not wrong, but it’s not what people want to hear. And perhaps they need a better explanation of the nervous system besides “it’s stress”. I also think people have to exhaust all their options in order to do the nervous system work. People who are desperate enough to heal will find your channel/this information. I’ve tried to help people (online) by telling them what is (most likely) causing CFS and they get very offended! So people have to truly be ready to heal. There needs to be less stigma around mental health because the people who get offended seem to undermine mental health. They think that their suffering is not the same as someone who has anxiety, depression, etc. When in reality, it all traces back to the brain/nervous system. Symptoms will present differently for each individual. I think the first step is for people to understand what trauma is. It’s not what people think it is. Trauma is not about the event, but how your nervous system is affected. Long term stress becomes trauma and being ill is a trauma. We need people to learn that nervous system dysregulation can cause all sorts of symptoms, not only fatigue. People need to learn that chronic fatigue is a symptom not an illness itself. Healing the nervous system can heal many ailments so if people learn this, perhaps they’ll realize that they can heal theirs too. So I guess getting this information out there has to start with people being educated about mental health. Learning the difference between the conscious and subconscious brain. People don’t think they need help because they’re not aware of what’s happening in their brain, subconsciously (because it’s subconscious!). So if people work on their mental health, they’ll see differences in their symptoms as well.
I'm really sorry if I'm that type of commentor, but due to some issues, I just cannot watch the full video at this time. What exactly can help with this type of issue? I heard acknowledging the symptoms instead of trying to fight them as one example.
@@alessshortsDon’t be sorry! If you’re just learning about the nervous system, all this information can be overwhelming. I spent the last hour writing you a long paragraph, but I just deleted it because it was way too much information 😂. So I will give you some tips to get started. If you have more questions, let me know! - Believe that you will recover! Watch recovery stories and stay away from negativity. Watch/read positive things, health related or not. -Do not stress when you feel symptoms. Recovery is not linear. An increase in symptoms doesn’t mean you’re doing things wrong or going backwards. Your nervous system will need time to adjust. It takes a lot of repetition, so be patient and do not compare your recovery journey to others’. Everyone heals at a different pace. - Know your limits but don’t be afraid to push a little. Don’t be afraid to use energy if you have it, just don’t overdo it. You know your body better than anyone else! - Talk about your feelings and don’t keep things in. Be positive but don’t ignore negative feelings. Sit with your feelings, not just mentally, but physically too. It can be hard to be with yourself and feel uncomfortable sensations, but try to remain neutral. If it ever feels like too much, don’t push it. -Get in touch with your senses. Look up “orienting”. This has been a game changer for me! Getting in touch with your senses allows your brain to understand that you are in the present and it is safe. When you’re in the present, your brain will eventually learn that the past is the past (i.e., there is no current danger). Right now your nervous system is dysregulated, meaning your brain thinks that past trauma/stress is happening in the present (which it’s not). -Learn grounding techniques to do in times of stress/dysregulation (ex. 54321…5 things you see, 4 things you can touch, etc.) -Learn to “pendulate” (going back and forth between states of stress and safety). This should be done after you’re more comfortable getting in touch with your senses. -Do more research on the nervous system and trauma. Education is very important and can be helpful in the recovery process. Here are some things to google: Top Down vs Bottom Up therapy Window of Tolerance Complex and developmental trauma -Recovery approaches to look into: Somatic Experiencing (orienting and pendulation comes from this), EMDR, talk therapy, brain retraining programs (DNRS, Gupta, etc.), yoga, meditation, etc. -TH-cam channels to watch: CFS Recovery Raelan Agle Irene Lyon (Not CFS specific but nervous system healing. I would start here to learn more about the nervous system!) - Don’t get too caught up in diets or supplements. Based on my experience and stories I’ve heard, the bulk of your healing will be from the nervous system. - Don’t try to do everything perfectly or all at once. A lot of us are perfectionists which can be an unhealthy trait that leads to illness. Leave that mentality behind to truly heal. - Trust in yourself and trust in the process! ❤
@@rachd4794 wow thank you so much for this well thought out comment. I will take everything into consideration!!! Also do you recommend avoiding some foods or even taking probiotics? Anything like that? Even things like avoiding certain people lol. Thanks so much. God Bless you!
@@alessshortsIf you have digestive issues, avoiding certain foods may help reduce symptoms. I did a lot of elimination diets but they didn’t do much for me. So it really depends on how you feel. But I think stressing about food is not a good thing either. So eat a relatively healthy diet (less processed, higher fiber), but you don’t have to be rigid. I took probiotics for a while but I switched to eating sauerkraut and miso. It’s best to get probiotics through actual foods. And when you have cravings, satisfy them! Yes, try to avoid negative people lol. You don’t need that stress!
@@rachd4794 I cannot explain to you how much stress I’ve been under in the last few years. Since March 2022, when all my antidepressant withdrawal symptoms hit everything spiralled upside down, the symptoms were endless. I still struggle from anxiety and stomach issues and I’m really trying my best but I keep going on these Facebook health groups to try to find out maybe what’s going on with Me. Health problems are so complex that is getting to a point that I just want to try affirmations every single day, and literally convince my body to heal itself through prayers to God too. It’s so overwhelming. It really is. I’m even hearing about a carnivore diet to heal. It’s so exhausting. I thank you for your replies. Sincerely thank you.
Where are the microclots coming from then? Where does the mitochondria damage come from? The inflammation in microglia, the endothelial damage, all the things not explainable by that
I would suggest you stop trying to be a microbiologist. Being in fight or flight is the main cause of your issue. Get out of your own way and your body will heal.
@Sjoerd *sigh* no offence - in that case I'd advise you to stop being ignorant and a pseudo medical expert on the very same topic. There are different phenotypes, not only people with mental problems. To understand this, one must be able to differentiate to some degree. Which, I am sure, as web designer, you very much are. Btw, congratulations on your personal recovery. Not mentioning these facts for the majority of people with ME at all, hurts everyone in the MECFS community, because this is playing right into the hands of psychosomaticians and doctors gaslighting in general.
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Thanks to BetterHelp for sponsoring this video - try it here 👉 betterhelp.com/raelan
I’m a psychologist with CFS. Recently one of my dreams after getting well is to go into science and do an interview study on people that healed from CFS. (So basically exactly what you’re doing Raelan 🙃, but using methods that are approved by scientific journals etc)
Thank you for a great interview and all of your work!
I'm a psychology student and I plan to write my master thesis about ME when I'm better. We desperately need more scientific research.
@@jilyvanily I am expert on subject if you want to chat.
Thanks to all the professionals who’s interested to help us! We live a f**** nightmare with doctors who knows nothing about CFS…😩🙏
Don't forget to come back and interview us, recovered!!🎉
Great interview! 100%. I agree with Sjoerd that the medical world needs to listen to the data you've been gathering, Raelan. The anecdotes are adding up and the data is there! I don't have the greatest faith in our medical system being open to feedback. Maybe a journalist might be watching and realize the power of your channel? This needs to be the first result for CFS instead of the sad lady slumped over the picnic table.
Every single one of us can help make the medical system take note. We just need a few doctors that are listening. Thankfully, my doctor is listening and even conducting own (non-pharmaceutical) studies now. He also reports my experiences (with things that helped me) back to his other patients with ME/CFS and Long Covid.
And he is also in touch with one of the leading researchers for ME/CFS in Germany. So there is hope that the information is trickling into the system.
Another fabulous and uplifting interview, this channel has definitely been the catalyst for my healing from long covid after 14mths I’m more or less there and would love to share my story if you have space for me please Raelan? Thank You Sjoerd, I really love how you’ve broken down your recovery timeline. Congratulations may you continue to heal!
I agree with his statement about the brain creating fatigue to make you avoid danger, but I also believe the fatigue comes from the nervous system using up all your resources to be overstimulated
Yes its the same thing. In the core chronic pain is psychosomatic and once people realize this and calm their CNS into parasympathetic statr the disease can and usually is over with pretty soon
@@DarkoFitCoach did u cured from CFS?
@@alias701 i didnt have cfs
I love it Raelen, thanks again for letting me share my story!
Ha Sjoerd, superfijn dat je dit wil delen met de wereld! Onze verhalen zijn echt bizar hetzelfde. Ook ik was nog jong, zat diep in de bodybuilding wereld en werkte daarnaast 80 uur per week. Dat heb ik zo'n 5 jaar volgehouden, en toen ben ik ook gigantisch gecrasht. Ook ik moest terug naar mijn ouders, en werd gediagnosticeerd met burnout. Ik had een burnout coach en bereikte maar weinig omdat mij verteld werd gewoon te ontspannen - maar dat had ik al 5 jaar niet gedaan! Mijn enige ontspanning was altijd de gym, maar dat kon fysiek niet meer. Uiteindelijk ben ik ook jaren ziek geweest, waarvan bedgebonden geraakt voor 9 maanden. En toen idd ook de hele molen door van ayurveda, supplementen etc. Maar grappig, qua oplossing was het voor mij eigenlijk ook heel vergelijkbaar met wat er bij jou gebeurt is! Ik heb ook gewoon een hoop gratis informatie gekeken en gelezen en toen mijn eigen programmatje in elkaar geknutseld, met meer resultaat dan ik ooit vanuit artsen heb gekregen. Met als basis hetzelfde als jij gedaan hebt - realiseren dat je eigenlijk gewoon alles wel kan en dat je veilig bent, ook al protesteert je lichaam. Ik ben echt zo dankbaar voor al die informatie, want zonder die informatie had ik nooit geloofd dat die symptomen eigenlijk geen reet uitmaakte, haha. En ook wat je zei over meditatie is ZO WAAR. Ik deed al een jaar meditatie maar mijn ziekte veroorzaakte zoveel stress dat het een druppel op een gloeiende plaat was. Pas als je je ziektebeeld aanpakt die de bron van je stress is, dan pas gaan die dingen wat doen.
Ik waardeer ook ontzettend dat je pleit voor het integreren van al deze data in de reguliere gezondheidszorg. Hier zou echt meer centrale organisatie in mogelijk moeten zijn. Misschien mogelijk om bijv stichting ME/CVS hierover te benaderen? Die hebben ook nog wel deprimerende info op hun website staan onder het kopje herstel, die niet perse strookt met de realiteit. (mecvs.nl/informatie-mecvs/wat-is-mecvs/ ) Qua reguliere gezondheidszorg: ik heb hier overigens wel hoopgevend nieuws over! Ik ben zelf onder behandeling bij het NKCV van de VU. Ik kwam daar binnen na mezelf van bedgebonden naar 60-70% energie hebben gekregen door TMS/polyvagale theorie/brain retraining principes, en vroeg me af of ze mijn aanpak zouden waarderen of juist afwijzen. Het fijne was: ze hanteren daar eigenlijk ook veel van de principes van TMS. Het verschil is wellicht dat bij brain-retraining de nadruk meer ligt op EERST het kalmeren van je zenuwstelsel en daarna dus met vertrouwen activiteiten weer opbouwen, terwijl bij het NKCV de methode is gewoon dingen te gaan opbouwen en daarmee dan weer vertrouwen krijgen. Dus in Nederland hanteren ze gelukkig al vergelijkbare principes, al is het nog niet perse expliciet gekoppeld aan theorieen over TMS/zenuwstelsel regulatie. Daar ben ik intern wel een beetje voor aan het lobbyen. Maar goed, dan moet je wel al diep de gespecialiseerde zorg in zijn, deze info/kans zal je bij de gemiddelde huisarts niet 1 2 3 krijgen denk ik zo.
Dan nog een vraagje, hoe ver ben jij nu qua herstel? Wat lukt al wel, wat nog niet? Fijn om te weten dat dat laatste hoe dan ook een kwestie van tijd is, en dat we uiteindelijk weer alles kunnen wat we willen (maar wat we willen zal, in elk geval in mijn geval, niet meer die 80 uur werken zijn, haha). Veel succes met de laatste loodjes! :)
Thank YOU, Sjoerd, for taking the time to share it!
Bedankt voor je verhaal Sjoerd! Hier in Nederland kun je óf alleen maar negatieve verhalen over ME/cvs vinden óf men (ook artsen) gelooft er niet in. Ik hoop dat dit soort genezingsverhalen ook in Nederland steeds meer bekendheid zullen krijgen en dat ikzelf dit verhaal ook spoedig zal kunnen vertellen 😊 Heb jij nog een braintraining cursus gevolgd of puur zoals je het in het interview verteld door jezelf herhaaldelijk te vertellen dat je oké bent?
@@astridcortooms1964 De gratis CFS cursus van Faith Canter is erg goed!
@@roos12925xg Hé. De klachten die ik nog moet overwinnen hebben niet zo zeer met Chronische Vermoeidheid te maken en meer met hoe ik soms reageer op stressvolle situaties. Ik merk soms dat ik nog te sensitief ben. Van de Chronisch Vermoeidheid ben ik ongeveer een jaar geleden hersteld.
Agree totally with "resolving the trauma of being ill" and all the losses that come with that.Helpful stuff,thank you both.
at the moment I believe focussing on helping your mind and body to feel safe is a most powerful way to regain your health: enjoying yourself within present boundaries, little wins reducing the fear and gaining confidence, sense of control, and slowly expand, focussing on what excites you, self compassion, breathing, nature, living from 'bite size'
Leuk om iemand van Nederland te zien! :) Wat moedig om je verhaal te delen. Heel blij voor jou!!! Ik herken zoveel... Wat je zei over lang niet naar de zee kunnen gaan en eens je daar dan terug bent, is dat het mooiste gevoel dat er is!
Hi, I agree with him , in the most of all videos I had followed from you there is stress after a situation or trauma that trigger ME. I had gott B12 injecctions, Q10 and naltrexon , but I believe that the brain needs a lot of positiv energi in order to leave behind you ME and negativ energi, if you take a few steps is a big step for you. I think it is important to focus only on the present day , not yesterday and not tomorrom only the present day. Thanks for all yours videos !
Dank je wel Sjoerd! Fellow Dutchie here. I really appreciate how you summed everything up, direct and concise.
I’ve had symptoms on and off for the past 10 years, and heavily for the past 2 years. I found this channel about a 1,5 years ago, but somehow couldn’t wrap my head around the fear and neuroplasticity thing. It’s only in the last month that I’m realizing what this means for me. It’s difficult, but I think I can do it 😊 Hopefully I’ll be on your channel too in a while @raelanagle !
Thank u so much for the sharing. I am using what I am learning from this channel to help me recover from Long Covid. God bless you.
Thanks bro and Raelan. I love hearing these truths from people. Your story and honesty was very appreciated:)
Thank you for another great interview! The silver lining of post covid is that the medical community is being invited to wake up. It’s asking for a different approach and means a massive overhaul of how we approach health issues. In a lot of cases it will not be the doctors doing the fixing, but the patient who has to be on board, self-reflect and do the work. That change is not going to happen overhight. But I’m hopeful; I now have two doctors (company and insurance) supporting me and believing in my mind-body approach. They’re experiencing a lot of resistance within their field (and from patients), but they are in frontline of change which needs to happen! Kudos to Raelan and all you amazing warriors out there showing the way!
TMS!! So crazy that our brains do this!
I love that you are neither claiming to have THE ONE ANSWER nor are you vilifying the medical community. Sharing experiences, admitting there is no one-size-fits-all approach, being open to different approaches and helping each other - that is how it should be like with so many problems and issues.
Such a great point! 🧡 🧡
Thank you both for a wonderful interview! I happen to have a lot of doctors in my family, so I can explain a little bit why it seems so impossible to get doctors to recognize significant anecdotal trends like the valuable information Raelan has collected from these interviews.
First, most doctors are bound by hospital and insurance guidelines, meaning if a particular treatment is not approved by the hospital and/or insurance, it cannot be recommended even if the doctor personally feels it would help. Insurance in particular is very hard to navigate (in the United States) because it is largely private and designed to make money, not to provide the best care.
Second, it is hard to get new information to doctors, especially if it is not published in a medical journal. Even getting a study published takes many years (someone has to have the idea, secure funding, carry out the study, analyze results, get peer review, then wait for their turn in the publishing schedule). So when information is in a journal it is already probably a few years old. Then for that same information to get into a medical textbook for medical students, it has to be replicated many times, with many clinical trials, and this can take decades. Okay, so now it's in the textbook and a med student learns it. Now that student goes through rotations for 5 or so years before they start practicing, so when they start as doctors the information they have can be twenty years old. This doesn't mean it's wrong, and much of the information is foundational and rarely changes, but for "newer" conditions like ME/CFS it means we don't even get into the medical conversation until people have been suffering with no answers for decades.
There is hope, though! All doctors (in the US, at least) are required to do "continuing education," which means that they need to spend a certain number of hours per year learning new/emerging information to keep their license. Often this information is still in the early stages of studies/clinical trials that have been repeated enough to show a significant trend, even if it hasn't made it into the standard medical curriculum yet. So the best way to get new information to doctors is to conduct studies that meet guidelines for publication in medical journals, and that generally means finding a scientist who wants to do a study on a particular subject, and also finding a funder who wants to fund studies on the same subject.
Many hospitals are part of a university system, and many doctors spend some time teaching and interacting with researchers. So every time we go to them with new information, that is another patient who is trying some "crazy new thing" that seems to be working, and it's possible that this can create a buzz that leads to more investigation.
Sorry this is so long -- and it's really just the tip of the iceberg -- but I understand the frustration with the knowledge gap and I think understanding why it exists can help us understand that we aren't doing anything wrong, the system just isn't build to move information quickly. Channels like this one are bringing this information to more people -- including doctors -- and that is a significant step!
A lot of wise words here. I am still recovering from long covid which has been a nightmare of epic proportions but I often wonder now if I am stuck in a loop partially caused by the flight or fight syndrome
'A nightmare of epic proportions' is such a good way to describe it. No one would know if they hadn't been through it. I always say it was like wading through hell. I'm sorry you experienced it, too, but glad you're improving.
Sjoerd you are amazing 🤗 Best of luck to you 🧡
Thanks! Best of luck to you too ;)
Definitely a great interview!
I love these videos. Thank you, Raelan and Sjoerd🙏
Thank you both so much! It was very helpful again and again. Blessings and love ❤️✨😘
Great video Raelan. I like his different perspective on things and your honesty. Thank you
I appreciate that, Jeff! ❤️ 🌟
Awesome interview 👏 🙌 I'm on my way out of this and I completely agree with everything he said, it has been my experience also 💗
The thing is, that if a persons symptoms have become neuroplastic then changing your thinking can work. But for those of us who have done brain training and all the other stuff, it’s not neuroplastic. I’ve ruled that out. My gut health is great and I’ve addressed emotional things too. I believe it’s not always a case of mind over matter. It’s matter Over mind. Sometimes these stories are not helpful. Because if brain trains fixes then you were already healed bar the thinking.
There are perspectives on neuroplasticity that go deeper than brain retraining
Here’s one that may be of interest: “Why getting 'calm' isn't enough || Neuroplasticity + Healing Trauma || with Irene Lyon” th-cam.com/video/IBtlIEhJsUI/w-d-xo.html
I have been a moderator in a severe ME group and we have found that while some people respond to neuroplasticity approaches, a great many do not. Of course, people can always say that we haven't found the right approach or not quite got it right but, in my humble opinion (as a non-medically qualified scientist with over 25+ years of ME experience) I think it is incredibly unlikely that neuroplasticity will be the answer to all ME and, like you, think that there are a lot of cases which require matter over mind for fixing, in the way that Ron Davies and others are looking at.
That is not in any way to denigrate these kinds of approaches and I wish they did work for me. I would recommend that everyone try them to see if they are the silver bullet for their condition and hope that they lead to many people going on to live normal healthy lives.
Thanks a lot for this interview 😊😊
🧡 🧡 🧡 🧡 🧡
Thanks to tour vidéos I Knowles I am going to heal ❤❤
Excellent interview and imsights ❤
Thanks for another great interview. I have a couple of questions for Sjoerd. when you finally realised the problem was with your brain being stuck in fear survival mode. Did you just start going about your day as if nothing was wrong or did you slowly start increasing your activity again? Did you flare up symptoms and then accept they were safe and keep going? What methods did you use to convince yourself you were actually safe and ok?
Hi, i gradually started doing activities again. I started saying to myself that if i crash from this activity it is because i was anticipating the crash, it's not my body is doing this it is my mind reacting to the fear i have of the activity itself. So if you trust that your body can handle the activity perfectly fine you can expand your activities and if you have a crash, don't panic. Just say to yourself i had an activity, i'm a little tired right now but that's perfectly fine and trust that your body will recover from it. If you panic after a crash you will just prolong the time it takes for you to recover. Start trusting that your body can handle doing activities. Good luck!
@@sjoerdvermeijden That's great. I'm already doing that. Nice to hear someone else recover using this method. I am making progress and just having to deal with the symptoms in flare ups and crashes. Just crashed from mowing my lawn on Monday but I was in an agitated anxious state before doing it so it makes sense as to why it happened. Thanks for your reply, really helps to connect with someone who has made it to the other side 👍🏻
Yes thanks for your reply, i find it very encouraging
You’re a legend ❤️
‘Just learn to live with it’ those words are scarred into my brain
Thank you for sharing your recovery story 🙏
Raelan HUGE congrats on your channels growth!
Another wonderful interview! Thank you both for being humble and honest❤
We need to reach out to open minded health journalists, and also use the power of social media ourselves sharing this kind of evidence! If each of us keep sharing on a regular basis, someone will notice. Those of us who have recovered using mind body connection could also mingle and create some sort of group with the purpose to spread the word and inspire (my A type personality’s way of brainstorming) 😅
Is it only me who wants to meet and hang out with all of you? 😂
Thanks for sharing this both. I can see my problem but I haven't worked out how to call the response yet but in time...
Raelan in answer to your question, you can perhaps have a list of causes and resolutions that folks experience. Then perhaps a study could be done with a charity. Like in the uk there is the ME association. I wrote to my mp, who happens to be Theresa May, you may know her, I wrote to her telling her my story and how I was paying X in taxes and now am not and am on benefits. I referenced some news articles about folks in the news who suffered and how there is funding gap. She said she's taking it to parliament and our chancellor in the uk. I basically told a personal story but I put it to her in monetary terms which will make more sense to politicians. I haven't heard back yet but I am certain I will as she's come back on other things. One thing that folks out there understand is money and that is the leverage in my opinion!
We can tell our doctors about this type of recovery.
Thank you
Sjoerd is our dutch hero!
Yes to Dan Buglio’s group!
Wait, Rotterdam?!! I live in Rotterdam!! Let's keep in touch Sjoerd!
Sure! Follow my instagram, you can find it in the beginning of the video. Otherwise i will send you my email ;)
Thanks
Thank youuuuuuu Graham!! Hope all is well :)
Hi ! And when you have 24 /7 symptoms ? Should you increase activity and ignore them knowing that’s if nothing wrong with you? Even if they are debilitating? I’m trying to apply this theory but it seems that stress gives me energy and when ít goes away I have lots of symptoms. Specially sound and lights ect… I’m also bedridden
I would watch some stuff by Dan Buglio or do Faith Canter's free CFS program. I'm not advocating ignoring symptoms all together, however i would stop giving them so much attention. That sounds confusing i know. What i would say is stop letting symptoms run the show. Until then, watch some content by Dan Buglio and get a better grasp on TMS.
@@sjoerdvermeijden thank you, it’s indeed very confusing ! I’m in the couch very fatigued and with lots of sensory overload asking myself if I should try to walk for some seconds even if I’m feeling like dying !??!!
@@clarissericardo2313 I would try it and if you're tired afterwards accept that you're tired and don't panic about it. In fact, stop panicing at all. Trust in the fact that your body has the ability to heal itself.
I read Dr Sarah Myhill recommends to first feel fine doing nothing before you attempt any exercise.
Yeah I've been there Clarisse! and I did get through it. I'm trying to remember what I did at that time...in addition to the beliefs and thoughts work mentioned by other commenters, I was doing a lot of EFT (can learn this tapping exercise for free online), slow deep belly breathing to activate the vagus nerve and regulate. and I made a point of setting aside a decent proportion of my daily energy to enjoyment whether that was putting on a cheerful face with someone whose company I really enjoy or having a little boogie to my favorite song even if I was lying flat. I watched and listened to a lot of content that made me feel happy and I removed a lot of stressors. I took adaptogens to assist with nervous system regulation. I think all those things helped, and one day I found myself enjoying the stretch of walking through the house 🎉 and it got easier from there. I didn't think about my symptoms much. I did do lots of encouraging self talk eg feeling rubbish getting up because of POTS I'd tell myself "good job you're ok take it easy, there you go". Same thing if there was a bright light or sound. To answer your question more directly, I did a bunch of things to support my body until it felt good to move and then I did a bit more based on how it felt. This might be a little different from other people but works for me.
It sounds like this guy is saying that it's all in our heads?
The symptoms are physical but they stem from an overactive threat response.
Such a terrific interview! Intotally agree with the fear thing and am back to brain retraining. I also agree with the trama of the illness. How do you let go of that fear when it comes to activity? Do you just talk to yourself and reassure yourself or do you add some other way to calm the nervous system too?
Keep telling yourself over and over again that there is no reason why you should not be able to do this activity.
@@sjoerdvermeijden thanks!
@@sjoerdvermeijden did you ever join Dan's group from his Pain Free You youtube? I was thinking of doing it. Im having a really hard time letting go of this fear of doing things.
@@kathystoner5239 No i just watched some of his TH-cam video's. And i watched his interview with Daniel van Loosbroek
@@sjoerdvermeijden thanks, I just signed up for it and am going to try it
hi, have you heard about mega dosing of thiamine, that had encouraging results in a survey (not research)? I have been reading a lot about it recently, and I wondered if you heard about it and what you think
No but like i said in the interview. If i were you i would stop relying on external solutions. If you are in a state of stress you can take whatever and however many supplements you like it will not fully heal you. Do the internal work. Start observing your thought patterns.
I think encouraging the scientific community to look at the strength training described by Raelan and others would be a good thing. I wonder if changes to the mitochondria during strengthening, helps reduce the immune response that triggers all the neurological symptoms of PEMs. The scientists know there is a reduction in the autonomic threshold (AT) among other things in ME/CFS, and maybe shifting mitochondria into a different state through strength training improves this too. That said, aerobic exercise IS dangerous for ME patients, especially at first because it can push them into PEM's which among other things, cause inflammation of the brain and potentially progressive brain damage. I personally lost my ability to do complex math and logic, even though my brain's doing pretty well otherwise with the help of low dose Abilify and low dose Naltrexone, which both reduce brain inflammation. Learning how to calm your nervous system and reduce your anxiety around the disease is really helpful, staying out of fight or flight. It would be good practice to train all patients in how to do this, because it also reduces the chance of triggering PEM's. I'm following Raelan and CFS health's processes for improving with the hope of not being trapped in my house anymore after 17 years with ME/CFS. I have a pretty good activity pacing baseline to avoid crashes and the strengthening program is going well. But walking a little too much (aerobically) puts me right into a relapse. I'm only 3 months in, so maybe after a year of strengthening and using my heart monitor to stay under my AT, I'll be able to walk substantially more. I'm feeling hopeful :) I'm also hopeful about the Stanford ME/CFS research group who think they may have figured out why PEM's happen at all, involving the brain and mitochondrial dysfunction, and a dysfunctional itaconate pathway. They have some ideas of how to stop it with a drug approach and will start clinical trials this year. I'm keeping my fingers crossed, but in the meantime am hoping to get stronger with Raelan's approach, which could put me in a better spot for healing all the way with Stanford's approach if it works out.
Thanks for your post, I found it really interesting. I’m in the UK but will try to keep an eye on the Sanford info for new findings.
One track I found useful to explore while working on my own DNA analysis was checking out what foods flared up on different array tests. I know there is some debate around this topic, however excluding many of the “red” list foods did help lower the physical effects I felt in fascia and the tightness/restriction and arthritic type pains. Also the impact on energy levels to a certain degree.
NMN and NR supplements definitely boost my energy levels temporarily. My eyesight becomes clearer in seconds as NMN dissolves under my tongue, apparently your eyes use a lot of energy!
There is no one size fits all answer clearly, just got to keep trying to see what works for you.
Often wonder how many of us might have been born prematurely? Is that a factor? I had a difficult birth and almost died, was I set up from them even? Who knows…
@@kcam3683Being born prematurely/almost dying is a developmental trauma, so it most likely affected your nervous system even though you don’t remember it. Irene Lyon has a lot of good videos on trauma and the nervous system if you wanna learn more.
@morelimefalmouth I definitely agree about accepting the current circumstances, and allowing a grieving process for the losses incurred. I indeed found that by not fearing the discomfort of the symptoms and letting them exist but trying to keep them in the background with any pleasurable distractions I could handle helped a lot. And I followed the idea of starting movement very gradually, beginning with trying not to hunch over when walking to the bathroom or grabbing my very simple meal. Even 39 seconds of straight posture began the ability to do more activity. But I wanted to comment actually because there may not be mitochondrial dysfunction for some, maybe those earlier in the illness but there definitely was for me. I was not afraid to walk to the kitchen or go get my meal, but would sometimes have ro walk on hands and knees with pauses face down on the floor if I could do it at all. It was when I began cold showers, my energy began to return, and Red light therapy added more, and then I was able to do small short sets of very light weights and began slow short walks. Cold exposure with breathing, the light therapy and the weight bearing all are proven to boost mitochondria l function. From there I was able to really work on mindset because I could begin walking and felt the potential for recovery. I did focus on not expecting a crash necessarily, but also said if there is one that is OK. I will surrender to it, take all the steps to lessen the discomfort (hot packs, and yes magnesium made a huge difference with the cramping too) and allow it to pass and take the info, I was walking abit too fast or far, just walk slightly less next but gently. Then I was able to commit to trying as consistently and gently as possoble to move my body. Even if that meant that day I would do an overhead arm stretch on the toilet before going back to bed. FOR ME IT WAS BOTH PHYSICAL REPAIR AND MINDSET.
@@isholaas You were healing the nervous system with bottom up therapies and now you are using a top down therapy (mindset/CBT). Both can heal the nervous system. I think the commenter was suggesting that people should let go of the semantics and focus on healing the root cause.
Regarding your question of how we can get this information (about the nervous system) out there:
I think some doctors do know this info because they’ll tell their patients that it’s “stress” that’s causing their illness. They’re not wrong, but it’s not what people want to hear. And perhaps they need a better explanation of the nervous system besides “it’s stress”. I also think people have to exhaust all their options in order to do the nervous system work. People who are desperate enough to heal will find your channel/this information. I’ve tried to help people (online) by telling them what is (most likely) causing CFS and they get very offended! So people have to truly be ready to heal. There needs to be less stigma around mental health because the people who get offended seem to undermine mental health. They think that their suffering is not the same as someone who has anxiety, depression, etc. When in reality, it all traces back to the brain/nervous system. Symptoms will present differently for each individual. I think the first step is for people to understand what trauma is. It’s not what people think it is. Trauma is not about the event, but how your nervous system is affected. Long term stress becomes trauma and being ill is a trauma. We need people to learn that nervous system dysregulation can cause all sorts of symptoms, not only fatigue. People need to learn that chronic fatigue is a symptom not an illness itself. Healing the nervous system can heal many ailments so if people learn this, perhaps they’ll realize that they can heal theirs too. So I guess getting this information out there has to start with people being educated about mental health. Learning the difference between the conscious and subconscious brain. People don’t think they need help because they’re not aware of what’s happening in their brain, subconsciously (because it’s subconscious!). So if people work on their mental health, they’ll see differences in their symptoms as well.
I'm really sorry if I'm that type of commentor, but due to some issues, I just cannot watch the full video at this time. What exactly can help with this type of issue? I heard acknowledging the symptoms instead of trying to fight them as one example.
@@alessshortsDon’t be sorry! If you’re just learning about the nervous system, all this information can be overwhelming. I spent the last hour writing you a long paragraph, but I just deleted it because it was way too much information 😂.
So I will give you some tips to get started. If you have more questions, let me know!
- Believe that you will recover! Watch recovery stories and stay away from negativity. Watch/read positive things, health related or not.
-Do not stress when you feel symptoms. Recovery is not linear. An increase in symptoms doesn’t mean you’re doing things wrong or going backwards. Your nervous system will need time to adjust. It takes a lot of repetition, so be patient and do not compare your recovery journey to others’. Everyone heals at a different pace.
- Know your limits but don’t be afraid to push a little. Don’t be afraid to use energy if you have it, just don’t overdo it. You know your body better than anyone else!
- Talk about your feelings and don’t keep things in. Be positive but don’t ignore negative feelings. Sit with your feelings, not just mentally, but physically too. It can be hard to be with yourself and feel uncomfortable sensations, but try to remain neutral. If it ever feels like too much, don’t push it.
-Get in touch with your senses. Look up “orienting”. This has been a game changer for me!
Getting in touch with your senses allows your brain to understand that you are in the present and it is safe. When you’re in the present, your brain will eventually learn that the past is the past (i.e., there is no current danger). Right now your nervous system is dysregulated, meaning your brain thinks that past trauma/stress is happening in the present (which it’s not).
-Learn grounding techniques to do in times of stress/dysregulation (ex. 54321…5 things you see, 4 things you can touch, etc.)
-Learn to “pendulate” (going back and forth between states of stress and safety). This should be done after you’re more comfortable getting in touch with your senses.
-Do more research on the nervous system and trauma. Education is very important and can be helpful in the recovery process. Here are some things to google:
Top Down vs Bottom Up therapy
Window of Tolerance
Complex and developmental trauma
-Recovery approaches to look into: Somatic Experiencing (orienting and pendulation comes from this), EMDR, talk therapy, brain retraining programs (DNRS, Gupta, etc.), yoga, meditation, etc.
-TH-cam channels to watch:
CFS Recovery
Raelan Agle
Irene Lyon (Not CFS specific but nervous system healing. I would start here to learn more about the nervous system!)
- Don’t get too caught up in diets or supplements. Based on my experience and stories I’ve heard, the bulk of your healing will be from the nervous system.
- Don’t try to do everything perfectly or all at once. A lot of us are perfectionists which can be an unhealthy trait that leads to illness. Leave that mentality behind to truly heal.
- Trust in yourself and trust in the process! ❤
@@rachd4794 wow thank you so much for this well thought out comment. I will take everything into consideration!!! Also do you recommend avoiding some foods or even taking probiotics? Anything like that? Even things like avoiding certain people lol. Thanks so much. God Bless you!
@@alessshortsIf you have digestive issues, avoiding certain foods may help reduce symptoms. I did a lot of elimination diets but they didn’t do much for me. So it really depends on how you feel. But I think stressing about food is not a good thing either. So eat a relatively healthy diet (less processed, higher fiber), but you don’t have to be rigid. I took probiotics for a while but I switched to eating sauerkraut and miso. It’s best to get probiotics through actual foods. And when you have cravings, satisfy them!
Yes, try to avoid negative people lol. You don’t need that stress!
@@rachd4794 I cannot explain to you how much stress I’ve been under in the last few years. Since March 2022, when all my antidepressant withdrawal symptoms hit everything spiralled upside down, the symptoms were endless. I still struggle from anxiety and stomach issues and I’m really trying my best but I keep going on these Facebook health groups to try to find out maybe what’s going on with Me. Health problems are so complex that is getting to a point that I just want to try affirmations every single day, and literally convince my body to heal itself through prayers to God too. It’s so overwhelming. It really is. I’m even hearing about a carnivore diet to heal. It’s so exhausting.
I thank you for your replies. Sincerely thank you.
Where are the microclots coming from then? Where does the mitochondria damage come from? The inflammation in microglia, the endothelial damage, all the things not explainable by that
I would suggest you stop trying to be a microbiologist. Being in fight or flight is the main cause of your issue. Get out of your own way and your body will heal.
@Sjoerd *sigh* no offence - in that case I'd advise you to stop being ignorant and a pseudo medical expert on the very same topic.
There are different phenotypes, not only people with mental problems. To understand this, one must be able to differentiate to some degree. Which, I am sure, as web designer, you very much are.
Btw, congratulations on your personal recovery.
Not mentioning these facts for the majority of people with ME at all, hurts everyone in the MECFS community, because this is playing right into the hands of psychosomaticians and doctors gaslighting in general.
Has anyone heard of sot therapy ??
So much easier to understand other europeans speaking english than listen to mothertongue englishspeakers
How so?
Yes, that's true
@@kcam3683 It's more slowly and clearly spoken