CRASHING during social interaction | ME ( Myalgic Encephalomyelitis )

In this video I talk about the rapid crash ME patients experience during social interaction. I discuss a key insight that might help reduce a crash in the first few minutes of a social situation.
Myalgic Encephalomyelitis (ME) is one of the most disabling conditions on earth. It affects 1/250 humans. Most ME patients are women (75%).
The term CFS / Chronic Fatigue Syndrome is unhelpful, and I generally refer to this condition as ME.
I am sadly aware that many patients with Long Covid are joining the ME community.
MEpedia entry on ME - me-pedia.org/wiki/Myalgic_enc...
MEpedia entry on cognitive dysfunction in ME - me-pedia.org/wiki/Cognitive_d...
My Twitter: where you can find my Twitter diary on living with Myalgic Encephalomyelitis is up to 150 episodes - / vladvexler
Insta - / vladvexler

[@melissa564]

Finally, someone understands. The other person makes us feel like I am on a treadmill that keeps moving faster and faster.

[@Anarcath]

Quarter century with ME/CFS. I always think of myself as a smartphone with a battery that doesn't charge past 20%.

[@MyDuckSaysFucc]

I use the same analogy! It’s perfect.

[@SarahCoxWrites]

This is so very true. I am in the middle of a crash, and I went to the lounge to lie on the sofa. My husband is literally banging and crashing in the kitchen doing some much needed work and even though I was just lying there, I became exhausted. I also felt guilty for "just lying there", and before long, the noise coupled with the emotional toll of the guilt, I had to return to bed. It's not something I have ever really thought about, but makes perfect sense.

[@BubblegumCreepydoll]

Hi Sara Cox, Stop feeling guilty, It only makes things worse. You deserve better. You deserve your own kindness and love ❤️ I hope you are feeling better ❤️‍🩹

[@dogcarman]

Shame and guilt are unfortunately common for all of us and some of the hardest aspects of the disease to cope with. Talk about it with the nearest and dearest to help them understand.

[@teedepefanio4974]

Tears.. one of my best friends has ME. i didnt understand it, but now i get how my multi-tasking and busy-body approach to life stresses her the hell out. I guess i need to slow my roll. I had no idea.. maybe being a bit more single-minded would help? Less busy, more chill? I look forward to your thoughts... especially those of you with ME or Vlad, himself... thank you...

[@beam3819]

Think about it as an oppertunity for you to learn to exist on her level. You have to go from 100% and down to 5% or at a point benieth her. If you do that. Then youre a warrior

[@jmar8507]

It's wonderful that you want to try to understand what she's going through. As a ME patient for 40+ years that's so nice to see in someone. Thank you!!!

[@cathryncampbell8555]

I have Fibromyalgia, and have *Never* been able to multi-task. I'm so glad to learn that this is not a sign if stupidity on my part. Rather, it is part of my syndrome. Thank you, Vlad!

[@EsoxLVCIVS6776]

Me too x I'm just starting a flare up

[@S7EVE_P]

I have a family who dont really get it. I can understand why. Christmas is a difficult time, but this year I was blessed with coming down with a influenza bug and it gave me good excuse to stay home. How to explain I miss them but am also relieved to be home alone! I am fortunate to be self-employed and mostly work from home but sometimes I have to visit clients and if this coincides with a crash I have to create plausible excuses why I cannot visit them. I have taught myself to be wary of the day when I feel excellent as its tempting to forget ME and run around being productive and sociable and cause a crash that lasts days. Thanks for sharing, these help :)

[@Dimich1993]

Hello man! I didn't know you have an ME channel!

[@artzstudios6611]

Thanks for keeping it interesting. Most videos are too long for us to learn anything and usually filled with scientific terminology. I’ve shared this video and rec’d positive feedback. You are easy to understand and I would be happy to share more of your work.

[@VladVexlerME]

Pleasure. Much more to come. How is your health?

[@FionaC1]

This is a fascinating point. In the past I have sometimes worried that the fact just *watching* another dashing about and doing things made me feel worse must mean it was all in my head 😕

[@VladVexlerME]

It’s amazing how that impact bears out. That’s why I am a big advocate of peaceful environments, where possible!

[@artzstudios6611]

I wish you could make a few more of these films. Short and interesting.

[@VladVexlerME]

I made over 150 and they are on Twitter. Slowly and with some new content they are coming to KZbin ! This channel is only getting. Warmed up. Eventually, there will be weekly content at a minimum.

[@jazzsjourney-2540]

So glad this video 📹 came down my feed, as it put into words what I'd been struggling to express to my tribe about why I can rarely be spontaneous...I am a 40+ year ME/CFS survivor along with 5 mental/emotional illnesses, and my energy budget is usually spent by 7 am. So, I truly feel this information will be very beneficial to share...I will be subscribing!! Thank you for a brief, thoughtful and impactful video!! Please continue these wonderfully informative conversations...👍🏼

[@maremateo3418]

Dear Vlad, this video helped me a lot to understand what‘s happening, when I experience such things with my loved ones being busy. Although I‘d like to spend as much time as I could together with them, I often have no choice but to go upstairs, close the door and go to bed…

[@gabriellerose3839]

My whole life evolves around energy

[@piccalillipit9211]

*GARMIN FITNESS WATCHES* have a "Body Battery" function that I find freakishly accurate - I have 15% right now at 6.30pm. A very low energy 3 hours before bed and I won't bottom out. I have not "bottomed out" since I got it 4 months ago, it has helped me an awful lot with Long Covid.

[@PeppermintPatties]

Thank you for educating me, Vlad, and I'm so sorry this is your experience. X It's interesting to also because it sounds similar to my experience of autism. I want to be social, but my body often says no, because every interaction has to be accounted for in energy terms. Just busyness around me gives me sensory overload and tires me out. I consider myself an extrovert, but nevertheless require an enormous amount of solitude and quiet to recharge. I'm like a tea light rather than a regular candle: I burn out very, very quickly. May we all be well and happy. 🙏❤️

[@christopherhearn4600]

Only just spotted this chanel vlad you're a star really are my friend

[@BubblegumCreepydoll]

I feel so good hearing this. I first, thought I had all of a sudden lazy and I couldn’t understand it. This was in around 2006-7. I was always getting infection of all kinds. I blamed it on the pollution in Los Angeles. One time my neck swelled up and I had an incredible pain from my neck to the top of my head, it was unbearable. The doctor said I had Mono. A kissing disease? How the hell did I get a kissing disease? I hadn’t kissed anyone and no one around me had mono. That was weird. Now, I thankfully live in this beautiful sweet spot in nature with civilization in my house. Lots of people have this fantasy idea about nature, it’s completely insane because if I didn’t have my house and was in the same spot in nature, I probably wouldn’t last a week. Most of my land is wild and nature consumes everything very fast. It also got a lot of hungry animals there. Even my cats don’t like to leave the trimmed civilized perimeters around my house. But it helps to live in a place like this. I try to go once a month to get my groceries, I have to drive about an hour and an hour back. After about 1/2 hour when I pay for my stuff, I completely crash in my car. I feel like I’ve done 12 hours of hard labor. The lights in the store get to me, the noise, going through the isles makes me feel like a rat in a race. At least I don’t get panic attacks anymore in the middle of Walmart or something like that. That’s embarrassing. The hardest thing for me to learn was to be kind to myself, it took me awhile to learn that and not feel guilty. I was always exhausted and confused, lots of red flags, but I come from a family where it’s basically a sin to mention illness. Only certain people are allowed to do that, the rest are just complaining hypochondriacs. So no I never talk about my condition until here. For me watching you openly talk about your illness, makes me feel like you are extremely courageous. Thank you 🙏 ❤️

[@hillsofwi]

I shop near closing time when it is the least busy. Early morn. might also be quiet but I'm still coming out of my nightly car wreck like experience. Have you thought of getting a van to lay down in during outings? I'd like to if I'd get enough energy together to shop for one. Any foods treat you better than others? Brutal illness.

[@BubblegumCreepydoll]

@@hillsofwi A Van! That’s an excellent idea. I hadn’t thought of that. I have not found any diet make any difference. I do find however, when I restrict my diet considerably, or go on a water only diet (although I’m not recommending this to anyone) I do tend to get better. Reducing stress in my life also helps.

[@hillsofwi]

@@BubblegumCreepydoll I find this true for myself also. I stop eating if I really need to get something done. Usually around one full day without food and I can function at a bit higher level. And I find that one meal a day gives me a bit more of my life back.

[@begr_wiedererkennungswert]

Thank you so much for doing this and being visible.

[@tamarapalmeirat4486]

✨Thank you so much for this video

[@michaelstrauss6587]

Mi Amor....

[@DA-pu9fu]

Great video Vlad. The succinct explanation has been so helpful to share with some of my family members. Thank you x

[@herbertgoldstein1156]

Im not an ME patient but i dont like multitasking, i try to do all one at a time.

[@MyDuckSaysFucc]

The multi tasking thing is something that I think explains why certain tasks are so difficult for the patients. I can’t sit through a zoom meeting without getting a crushing headache in the first 20 minutes. Same if I am driving, trying to work on college assignments. I’ve been ill for a decade and I’m still gaslighting myself “it shouldn’t be that hard” thank you for explaining why everything makes me so sick.

[@tomlavelle8340]

Man this sounds like me

[@Knobbynomates]

The simple truth is this. Someone with m.e. should do as much little as possible. At all times as much little as possible. It's an auto immune illness. It requires rest and making sure the person ha as much help as possible. That includes the correct approach and then the correct treatment. As in any other auto immune patient, but with a greater sensitivity as it is more damaging and more harming than anything else. In the curing process the needs are the same as encephalitis as it's the same place affected vie viral infection. Which means that a certain approach is required to make sure the interferons used can do their job. The who Definition is insane.. the NHS and other services approach are also insane. If sufferers are given the right advice quick enough . It stops the illness getting embedded. The first golden rule ....is do as much little as possible. For a myriad of body immune response reasons. Anyone working in immunity should be able to see this , the problem is they cannot attend to the patients due to the insane and totally stupid definition and frameworks the services apply themselves too at the total expense and abject cruelty of sufferers. The charities that suppose to support this illness are inept in the extreme.

[@karenfitzpatrick6256]

I wonder if the following resembles your experience? I've done research in some professional peer reviewed journals with a few recent reports from top University Professors on ME. And watched some of seminars at conferences from various universities. And there isn't a whole lot out there. It's well known that the brain uses an extraordinary amount of energy processing the information imported from the senses, hearing, seeing, touching and to maybe a lesser degree smell and taste that are affected by ME. It seems to often be most problematic particularly when one is focused which includes comprehending, analyzing, and responses. You explained your extreme reaction to an overload of energy demand during a class. It sounded like there just wasn't enough energy getting to the mind to sustain the higher levels of brain processing, even within a "normal" social interaction stimulation. That's why sleep is not very good at the "refueling," if you will, the energy bar. The brain never shuts down. In fact I'd suspect it may be a problem to get to sleep or stay asleep for that reason. Too tired and stimulated to sleep. But unable to stop the draining thoughts long enough to get to the relaxation state needed to sleep. Overtired. Or too tired to sleep, common in children until they can somehow regulate their energy and learn how to balance rest with activity. That is so out of wack in ME. From what I've read ME is a very complex and not at all very well understood condition/disease/syndrome. Hopefully one day day the medical community can find at least a treatment if not a complete cure. It may be some type of directed sedation, which I suspect would be a horrible feeling. In the meantime it seems the best we have to handle it is to know your condition well and how you react. What exacerbates the fatigue? And use your "well" moments with care without stressing the limits. Quality times must be appreciated as they are precious moments to "be in life." I'm so sorry you must deal with it. I have very similar symptoms. It may be part of the aging process to some degree. IE. I shopped for two hours this evening and I know I'm in for at least 24 to 48 hours of broken sleep. Unable to barely get up for only the absolute necessities. Not being "awake" for more than a few minutes at a time before I must lie down again. After a couple of days I may get back to a "good" day of being awake for a couple of hours, though generally still in bed. For me it's a matter of accepting what I can do when I can do it. I think it must be harder to accept when one is still young. This started in my late 50's and worse now in mid 60's. So we must play the hand we are dealt without berating ourselves up. Trying to fight it off makes it worse. So accept and move on. We still have valuable lives to live.

[@VladVexlerME]

Karen thanks so much for all your words. How do you think about your health? How do you label your symptoms?

[@karenfitzpatrick6256]

@@VladVexlerME I'm not sure what you mean by "label"? If you mean how do I describe the symptoms day to day, I guess it would be on how much they annoy or bother me at a given time. I have to constantly evaluate to what degree they interfere with what I want or need to do."Good days/bad days" "Better than yesterday or not as good as yesterday." There is a lot of frustration and times of embarrassment when I know I'm much more limited in ways than I used to be. I have the added struggle with quite severe Osteoarthritis most bothersome in my spine and hands. In the spine there is a lot of spondylosis degeneration that has caused scoliosis. And it is progressive. My height has gone from 5'2" to 4'10" adding pressure and pain and further limiting movement. Which adds another level of restrictions to the overall weakness and exhaustion. But again there are some "better days" and "worse days." The pain is somewhat managed with strong medications, but I know it is not treating the cause only helping to make the symptoms bearable. I have to accept and deal with whatever I'm experiencing at the time. To do what is necessary whenever I can. It is what it is at the moment and I must take advantage of what is possible and necessary at the time. I don't "fight" it. I try to work with it. Otherwise the frustration would cause depression and hopelessness which is a waste of valuable time that could be productive. The hardest part is being on my own. Alone and separated from family as none live nearby. That may need to change very soon, which will open the whole new set of challenges of having to accept being dependent after a lifetime of independence. And the feeling of being a burden on them. I'll deal with that as it comes. I'll have to.

[@BubblegumCreepydoll]

@@karenfitzpatrick6256 do you take anything beside pain meds? It’s weird how we have to fight tooth and nail to get proper medication. I had to do that. Often I had to accept meds from my doctor that didn’t work or made me worse. I hate narcotic pain meds, I just don’t feel they help much. They made me more tired put my brain in an even deeper brain fog and constipated then the pain returned, like 👋💀 I’m here again. I hope you have gotten better help or that you will get it. ❤️‍🩹🙏

[@karenfitzpatrick6256]

@@BubblegumCreepydoll With any chronic disease the best thing I've found is to first accept it. It's not going away so what to do with that knowledge. Focusing on fighting it is draining and stressful which only increases pain and makes me miserable and miserable to be around. I try to follow the doctor's advice, about diet, exercise and supplements along with the meds. Any part of that gets modified as my condition changes. I do have an excellent working relationship with my doctor and that's so important. So if something doesn't work we try something different. I'm not looking for "perfect" just "better. Knowing that there will be good days when I'm having bad days and not beating myself up for having bad days takes a lot of pressure off. I try to be distracted by doing things I like or at least looking forward to them helps a lot. I'm not sure if that answers your question. There is no magic pill to make it go away. So the best I've found is to learn to live with it and go with what works at that time. Discouraged and frustrated sometimes? Of course. But I don't let it get to me now as it did at first. At some point it becomes a choice on how you think about it. It's a waste of time being angry about something I realistically can't do much about. I'd rather be focusing on other things. All the best wishes for you from Vermont US.

[@BubblegumCreepydoll]

@@karenfitzpatrick6256 Thank you for your response. It looks like you have found a good balance and acceptance of your condition. That is very good and I truly wish you all the best 🙏 and best regards to you from me in OR.

[@DA-pu9fu]

^ True ^

[@user-jd3pr8bm1p]

What is ment by "crashing"?

[@ruthherring5684]

“Crashing“ is a term often used to describe M.E. symptoms suddenly worsening.

[@sjoerdvermeijden]

Have you recovered?

[@VladVexlerME]

I have had ME since 2003. Haven’t recovered but improved.

[@elsagrace3893]

NO ONE EVERN RECOVERS.

[@bradyfaigl7713]

@@elsagrace3893 wrong Elsa. I have seen thousands who have

[@yuppers1]

I'm so sorry. It almost sounds like an undermethylation of catecholamines. I'm sorry. Hope science catches up quickly.

[@77thTrombone]

Vlady Vlady Vlady.... Not your most flattering shot in that thumbnail. Or mebbe it _is_ best of VladV, but BOVV is simply not my cup o' tea. Either way, content rules, not, erm, cosmetics. And even this content may be relevant for my needs.

[@elsagrace3893]

Okay, but if you had a firmer sense of self you wouldn’t desperately need it from your multitasking person. Just sayin’.

[@elsagrace3893]

Dude you just look stressed. Your neurotransmitters are messed up.