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Hello, 35 years old male here. Thank you very much for your video! I've been doing medical tests for those last 3 to 4 years, and we have the suspicion that I developed either CFS or Fibro. Another alternative, less likely but not discarded yet is MS. Anyways, my cluster of symptoms overlap almost 100% with the ones you explain here. My muscles get drained of energy very rapidly. I have problems chewing, swallowing and even talking because my mouth and throat muscles get tired with extreme ease. This problem is usually more severe when I am already fatigued after a long day. Some days I can work with relative normality, other days I feel as if my neck won't hold up the weight of my head. I have cervical, neck, back, shoulders and joint aches, vascular and tension headaches, chest tension and shortness of breath. Some days I experience extreme fatigue from the get go, other days I get totally tired after one specific activity (usually a simple task without much difficulty). I also suffer from severe brain fog (it varies from day to day though), problems recalling memories, thinking straight, using mental abstraction, etc. I also have problems reading and concentrating: this is very subjective feeling and difficult to explain, but I feel as if I had blurry vision without actually having it when I try to focus on my reading of a book page, and it makes me very anxious and frustrated. To sum it up, it's a wide and diverse array of symptoms, and thankfully they don't strike all at once, but they make life very frustranting as you have to refrain from doing a lot of social activities you used to enjoy.

I also like the term rolling crash :)

Thank you Corey for all of your efforts! Keep up being a pioneer for those that can't.

TE ESCRIBE UNA MEDICO ESP CON 44 AÑOS DE EXPERIENCIA SUFRI DE ARTRITIS REUMATOIDEA A LOS 25 AÑOS.CON UVEITIS EPISCLERITIS.ETCALA CALIDAD DE VIDA MALOS MEDICOSALOS TTOS CASIE MATA PLAQUINOL.ESTEROIDES ALTAS DOSIS.ARAVA FUE EL PEOR TUVE UN ATAQUE AUTOINMUNE TIROIDITIS EN VARIAS OPORTUNIDADES CON HIPERTIROIDISMO.EXOLTALMO.HASTA Q ME TRATARON EL INTESTINO PERMEABLE.ELIMINACION DE LAS CANDIDASBACTERIAS TOXICAS.SEMBRANDO CON PROBIOTICOS Y NUTRICION ANTIINFLAMATORIA Y MEJORIA DE TODOS LOS DOLORES SIN FARMACOS.

Thank you. Could you link the FB group? Can't find it.

Thank you for sharing your story.

Hi, I’m a former research biologist. I now have severe ME. Heading into autonomic failure bc I’ve been either undiagnosed or misdiagnosed for over 20 years, ultimately left untreated as a result. I have spent the last 10 years looking for answers. ME is very much like post-viral syndrome. Think of the people who had Covid, known as the “Long Haulers.” It is essentially a type of post viral syndrome. In fact from what I’ve read, there’s not really a distinction between the two. At its core, both are a metabolic problem. Your body isn’t making enough energy for all your organs systems to work. This is bc within your cells, you have these minuscule little biological energy machines called mitochondria. Mitochondria make energy molecules called ATP. They do this through something called oxidative phosphorylation. Suffice it to say, it’s an aerobic oxygen) process. Now, have you ever heard of a thing they talk about runners going through, in which they run out of energy and their bodies starts producing lactic acid? They’re muscles aren’t getting enough oxygen so they start cramping from the lactic acid building up, burning, & ultimately, the muscles give out. It happens bc the runner’s muscles switch to all it has left, an anaerobic process, which it can’t keep up for long, bc it simply doesn’t produce anywhere near the energy needed to keep the human body functioning. The only thing it can do is try to conserve energy for the most vital functions. This is why we get all these seemingly unrelated symptoms.This also causes micro inflammation in parts of the central nervous system, and/or the peripheral nervous system as well. GI issues often are the result of neuromuscular motility disorders. I hope this makes sense of it a bit better. I’m actually about to try nattokinase, bc I’ve heard very good things about it, & there’s no danger in trying it unless you use aspirin or blood thinners. Edit 6/09/24: let me add you should start at a very low dose and check with your pharmacist about medications you’re on to make sure it’s safe, & your doc before you start. I thought I wrote this yesterday, but my brain fog is pretty bad right now. My apologies.

With me, it presents as not being consistent. Every day is different, I can't make plans or have friends. It's eating a healthy meal, going to bed early & waking up with flu-like symptoms, a bad cold, a horrible hangover (no drinking involved) & feeling like I'd been hit by a truck. A shower can wipe me out for the day. Brain inflammation, I can feel my brain pressing on the inside of my cranium. A small upset or stress, or overextending myself physically or mentally can lead to a full blown crash. I can hike or go to a concert & be fine or I may have PEM (Post EXERTIONAL Malaise). Fatigue, where you have to stop in your tracks & sit or go to bed. I've worked decades with this. Covid-19 made it worse. LH Covid rendered me disabled. OR, I may be fine for a few weeks. I can push & crash or push & not crash. Weather changes can set it off. Foods, additives etc. I'm moderate to severe now going from bed to the couch. Nature, sunlight & warm weather make it better (for me).

For me it's also body temperature fluctuations, it can range randomly from 35C to 37.3C. Not just "feeling hot or cold." That was one of the symptoms at the onset, together with fevers and complete loss of appetite and nausea 24/7 for months and years. These symptoms are a bit rarer, so I wanted to mention them.

Just wanted to add here 🌞 Sun! I'm in Seattle, I NEED the sun. ME/CFS (6 decades) Long Covid since 2020. I'm absolutely "out of commission" without the sun. In the sun, I can function like a normal person. I'm moderate to severe. I go from couch to bed 9 months out of the year. Unfortunately, Long Covid made ME/CFS worse & I'm unable to move to another state :(

yes thanks for this, I've noticed a lot of this for myself. my crashes involve a lot of spine pain and positional restlessness- while the screen is not ideal for aggressive rest, i use it to distract me from the pain and keep me in one place, but i understand i lose out overall in terms of rest and recovery. thanks for pointing out how essential the type of programme is- i have to watch out for anything that triggers too much emotion which also detracts from rest

Corey, all your videos are so helpful. Thank you.

I spend most of my time resting in bed, but I don't get better and my baseline is getting worse gradually. 😢

*Aggressive Resting* is the perfect terminology for what needs to happen. This is very useful information. *Thank you.*

Hello- I have watched all of your videos. Can you tell me what medications you have taken in the past and what you are on currently? Thank you!

I like your t shirt- where did you get it?

This might sound like a silly question, but what does rest look like for you? When you say you rest for a week, could you explain what exactly that entails? How many hours a day are you sleeping, and is it all continual, or broken into small segments? I'm relatively new to CFS - two months into a housebound crash, in the severe category (but closer to moderate. Each day I make two small meals, make my bed, wash a few dishes - but all things that my body is telling me I probably shouldn't be doing.) What I struggle with is I can rest about two or three times a day, for about 30-45 minutes at a time. I get so antsy, and feel like I'm buried alive just trapped in my body, just with my thoughts. I've always been a bad sleeper, and often only get about five hours a night (not in a row.) I'm amazed at people who can sleep 8 or 10 or 12 hours in a row. And those with ME/CFS who can sleep all night and then sleep most of the day too. Part of me is envious, because I know that's what my body needs. Nonetheless, I'd love to hear what rest for a day or a full week looks like for you, in terms of actual specifics, from the beginning of the day to the end. Much appreciated! Hope this finds you well.

The symptoms you describe come from an overactive amygdala and the vegetative nervous system. Stress/fear. And then you go to all kind of doctors and they can't find a thing. You have to figure out what's not right in your life or what holds you back.

Thank you for sharing your experiences with ME/CFS. I’m trying to learn more about it and these videos of yours have been eye opening.

this is an amazing advice. Thank you 🙏

Thank you so, so much for your wisdom and reassurance! I’m relatively new to the game-long COVID sufferer since about April 2020-and all of your tips are so, so helpful in my particular situation. It’s often incredibly difficult to enunciate how much my senses need protection, or how much energy is sapped by seemingly “non-exertions” to lay people, but your articulations are both validation and helpful. Thank you for your work!!!

I could barely hear you, and I really wanted to listen.

This is so helpful. I’m moderate to severe. The cane and rollator barely get me around my tiny home.

Re. the PACE trial, I read somewhere (don't remember where) that it was underwritten by a medical insurance company. Does anyone know any more about that?

I So needed to see this video!!! I have CFS and fibromyalgia i need a wheelchair to preserve some energy. I have a cane, and I also have a walker ... you are not alone

My doc calls it post viral condition. Finished

How about just walking in and asking them why the fuck am I telling you about ME when you’re supposed to be a doctor and then ask them to go away and do their homework and come back when they’re actually qualified to treat you ?

This is eye opening, I have had fibro for about 20 years and I’ve been getting worse and worse brain fog, fatigue and PEM for at least the last couple of years. Diagnosed with trigeminal neuralgia and migraine as well and the most recent surprise, random tachycardia for no reason. I am finding it hard to think and get words out, but trying to write things down so I can talk to specialists. Thank you for this.

Your set up looks similar to mine. What are Casetta lights?

Thank you for posting this message. After living with ME/CFS for many years, my social circle has shrunk to just a few people. But living like a hermit is better than wasting precious energy arguing with those who don't believe I'm sick, who believe it is just 'stress' or whatever, who believe that all I need is vitamins/exercise/positive affirmations etc etc. People with invisible disabilities will never be believed for lack of hard evidence.

Sorry for another question... I appreciate your help/videos/input! How do you get over the embarrassment of using a wheelchair? I use one to access most of my community activities (which are rare) but medical appointments are hard for me... doctors and staff who knew me long before ME. Plus navigating power wheelchair in the small exam rooms when I need a physical exam (cancer checkups etc). But I literally don't have the energy to go most times and end up cancelling/rescheduling which is unacceptable due to my cancer history. But I'm so embarrassed about using it & explaining the whys when asked.

I'm a recent subscriber to your channel. Some very good information, resources, and personal insights. Many thanks. Really glad to know you're doing much better. I hope things continue along that path. From watching and catching up from your previous videos it's obvious you're looking and feeling much better. A healthy glow!

Cory I haven’t watched many of your personal updates but just wanted to say how meaningful it is to hear you speak in some level of detail about your day-to-day decision making, challenges, and thought process. It made me cry just listening to you talk about your experiences with daily life since they’re so similar to mine. While people post in support groups about some of the bigger deal stuff, something about hearing you talk about the everyday stuff that we have to think about constantly, it really made a difference for me. Thanks as well, obviously, for your encouragement and inspiration to rest aggressively

Corey it’s great to hear you are doing well. Thanks for this update, it helps keep the hope alive. Take care 💕

OMG, that's possibly happening to me.... I feel really flu like sick, very exhausted everyday, but I feel like I can walk 1km most days, very slowly. And sometimes cook a meal and drive for 15-20min. But after a few days or a week I get so much worse... I need the walks because I am so wired and restless that I feel I might go crazy if I try to stay in bed all day. It's vey difficult to tell what is better to do...

Your description of the fatigue is so spot on

My symptoms fluctuate so badly 😢 I can slowly clean the house, and drive the next day and so on. And be fine for 2 weeks. And then suddenly after resting I can be in muscle pain, have extreme exhaustion and brain fog, unable to read or listen to audio. My heart rate is 130 every time I stand. My doctors keep gaslighting me. Can it be M.E? Or the crashes can only be delayed up to two days?

That's so great. Congratulations

I can't rest really. I am so wired that I don't rest when I lay in bed😢

People are different. I'm a pessimist. What helps me most is imagining how much worse it could be. I can still shower, eat and use the bathroom on my own. There's a real risk of losing that, too. Maybe that state is one bad crash away. So, I tell myself, stop playing with your health and rest more, or I might regret it. Just like I'm regretting triggering my previous crashes. No situation is so bad that one can't mess it up even more. 😅

Thank you for this information. I’ve been doing that for quite some time; but perhaps not as intensely. Good information.

My experience/perspective: I like the metaphor of a fuel tank. - Every activity depletes it, every rest refills it. - The healthier I am, the faster it refills and the slower it depletes, vice versa. - So I try to never get close to depleting it, as it makes it far more costly to refill. The fuller it remains, the more overall "active time" I get. Also, crashes can cause chronic, almost irreversible fatigue with new symptoms (my newest skill is vertigo). So they should be avoided at all cost. But maybe depleting the tank (hidden crash?) can also cause that? All the more reason to maintain a full tank.

What do you think of people who have formally had ME/CFS who say that a full recovery as possible with (mainly) brain retraining? I've been trying to follow their advice/recommendations for over a year and all I've seen is a decline in my health/ increase in my symptoms. I don't have even close to the $400-$600/month to spend on their full access programs.

Our set-up’s are very similar! 💙

The aggressive effects: So, as you say: aggressive resting is key, the only thing ME-Suffer can do to survive years and decades, which is true, but what are the consequences for the soul or body-soul-system? There is a point where you just can't rest any longer in that way. Every acitivity which is needed for the soul and and balance of your body-soul-System leads to crash, for years and decades. You feel, that your psychological needs are so urgent, that you cannot longer stay in bed. Thats the limit of Pacing in severe but also moderate Patients. She can be reached on day.

I really appreciate your videos, they are helping me understand what’s happening to me so I can take care of myself.

Thanks for all your great videos! They are very helpful and give me hope and so good tips on going forward with my recovery.

Thank you!

Here’s your evidence that preventing crashes is the way out of this terrible disease: workwellfoundation.org/wp-content/uploads/2023/01/Functional-Outcomes-of-Anaerobic-Rehabilitation-in-a-Patient-With-Chronic-Fatigue-Syndrome.-Case-Report-With-1-Year-Follow-Up.pdf