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GREAT video to show family and friends--short and user-friendly.

can also cause coat hanger pain

😢 having this for a few days now. Tough times.

🌟🗽

I have this illness since the age of 30 and now 68. So hard to support even if you know what to do, Why, ? because you have no more life. This video is very well explained but do doctor understand ?????

Sometimes, even breathing takes effort...

I don't believe there isn't a treatment or explanation for this. It's just ignored and called malingering. I actually saw that term used in a chronic pain research paper very recently. FFS, people with chronic pain desperately want to be active.

Thank you for this wonderful easy to understand explanation of PEM.

This disease is insidious. I’ve had PEM for 50 yrs and increasingly more severe, especially after age 40. I wish I could have traded it for any other disease or cancer. Death would be humane at this point. 😢

Best video I’ve ever watched for validating my PEM ! I need some specialized help with this. Where can I get handouts of the charts you use? Just make my own I guess… Anyhow, thank you so much for doing this video!!

Thank you for this comprehensive explanation of PEM. Will you do a video about how to live with PEM or if there is a treatment? Thank you.

Thank you ❤

I usually get immediate and delayed PEM. Most frequently from physical and environmental stressors. Not a good way to live .

This is the most comprehensive easy to understand video about PEM I have seen. Thank you for putting this together. The short duration and ease of understanding makes this video perfect to share with family and friends. Thank you!!!

Thank you for an informative, succinct & relevant discussion re supplementation for LCV, PVS & ME/CFS symptom alleviation. Please consider adding “Post Sepsis Syndrome” (PSS) to the list of chronic conditions. Many PSS patients have similar long-term symptoms that can be significantly reduced by the protocols presented. Again, excellent content & discussion!

Thank you for this

Could the maker of this video PLEASE tell me what kind of doctor should I go to to get a formal diagnosis? I'm in despair because I keep getting sent in the wrong directions! Thank you so much!

Clonidine does have a notable rebound effect, which can be a real issue for some people. This makes guanfacine a somewhat better choice, where it is properly titrated to the needs of patient.

This was informative and done with lots of compassion for the people who are suffering and often misdiagnosed/overlooked. Thank you!

Is anyone talking about this in 2024? I feel so forgotten.

Thank you! ❤

as a 50min video this needs chapters so people can skip to what they need

I have severe ME/CFS with OI. I find I’ll have trouble going to sleep oftentimes. I also find myself feeling tired but wired, & I’ll stay up to get things done bc I feel like I have some energy. Yesterday I learned I was actually causing myself to go into PEM, which would include the worst night nightmares and I’d wake up dripping with sweat, & my mouth parched. Now that I understand what was causing those horrible night sweats and nightmares that seemed to go on forever, I’m careful to go to bed, & I’ll take melatonin or a muscle relaxer to make sure I rest. Hoping that will help a lot.

Shortness of breath. Heart palpitations. Dizziness. Spaced out. Word loss. Irritability. Super hot. Neck pain. Guilt that I’m not with my family and life is short.

I don't think there's enough emphasis in this talk on avoiding PEM as much as you possibly can in order to avoid living in a continuous state of symptoms exacerbation. A strategy for achieving this may well be to spend the majority of the time supine in radical rest breaking that rest with very short time limited part activities. So, to dress you might for example sit on the bed and put on your underwear, rest, your lower clothes, rest, your upper clothes, rest according to your energy and symptom exacerbation profile. This approach can be applied to most tasks. The talk is good at describing how to manage events which will put you into PEM. It's important this should not become your norm as that does then become boom and bust in my opinion and experience

I’m sobbing right now because I needed to hear some compassion and validation from a health care professional.

I have PEM & it took 5 years to obtain this dx. I was blessed to find a physical therapy clinic in Salt Lake City who actively studies PEM and educates physicians based on evidence of pacing techniques utilized for patients. It's called the Balance and Mobility Clinic run by Lennie Swenson. I am so grateful to have found them and benefit from their knowledge. Cheers for you educational and informative videos! 🥂💐🫶

I really appreciate this series! Thank you so much!!

What’s your take on gabba ?! It’s a destroying of the mind , drug !!

Ty. I’m on the east coast. Severe, but I watch all your videos, read some of the journal articles, but that tires my eyes out if I do it too much. Completely isolated. Can’t even talk much without making my symptoms worse, let alone go anywhere, or even for a walk bc of OI. Thank you for trying to help us.🫶

Thank you for all you do and for each of those in the support community for sharing. I had a much needed cry while watching this video.

I wish there was no background music. It adds nothing to the presentation and increases cognitive load.

Thank you. After having FM for 28 years and Covid induced severe ME-CFS for 4 years, it was so encouraging to hear professionals acknowledge and value this illness. Again thank and acknowledge and value each of you for your time, compassion and energy.

Thanks for seeing us. ❤

😭💙🙏🏼💙🫂

Thanks for your work

Thank you Bateman Horne. Thank you for caring. It means so so much. Believe me🙏

disabled since 2016 after a hospital acquired superbug infection when I went to the ER with a kidney stone

Thank you so very much for being a voice for so many of us! We need clinicians like yourself and I am eternally grateful for your work on behalf of those of us with this crippling body and brain illness.

This! Thank you so very much for working to educating physicians and the general population.

I needed this today.

What a joke! 😡 Yet another doctor basically telling us, "Play dead! That'll do it!" 🙄 How about we find the roots issues and treat that instead of band-aiding the issue? I've been dealing with this for 28 years and I'll tell you what happens.. A body at rest stays at rest. When you pace you find yourself pacing more and more, when some of you already can't even get out of bed. Over time it lowers and lowers your threshold for activity, you lose muscle, and your body deconditions on top of this. I wouldn't be able to survive off pennies of US disability so I have to be accountable for work as the sole support for my household. They don't let me trickle through my work day and take naps every 5 minutes, and caring for my kid doesn't magically pause. Sometimes life doesn't give us the option to pace! We need to identify root cause for each person for proper treatment. We need better insurance covered, in depth workups. If reading an hour leads to cognitive issues swap to doing several harder brain solving puzzle games throughout the day at mid length intivals. If biking hurts, swap to a trike with proper hydration and snack breaks. When yall speak of pacing, you speak of it in the form of just doing less rather than really altering each method. Baby steping through life is usually not practical for most. I think the conversation should be more towards quality over quantity.. ways to modify the must do activity VS mainly lower or eliminate. You don't maintain muscle from stagnation, you atrophy like old folks put in nursing home beds. We are currently delt a double edge sword yall seem to be glossing over there. The shower chair idea was the only decent suggestion (which I already use), however even showering in a chair can be exhausting! The better advice would be get a shower chair, a duel shower head with a seprate handheld sprayer that mounts on the shower wall, lower the water temp not to overheat and stay cooler, to keep blood from pooling elevate legs now and then when able, wash your body in a separate shower then washing your hair *if you can* to reduce length of shower time, lie or sit and relax a few moments before dressing because dressing is exhausting (robes help), towel dry or sit to dry hair, shorter hair is less to manage and reduces dry or styling time, dry shampoo your hair halfway through the same day you wash it or before sleep, use a silk bonet for hair during sleep (it will reduce tangles to fight and the dry shampoo will soak up oil between washes VS trying to fight it once it's already oily), etc. If you're going to give advice, don't half-** it.

I had my genome sequenced and one of the highest confidence results was exercise intolerance. It's a form that can be over come by starting very slow and not pushing past tolerance. This is validating that I went to a personal trainer for strength training done lying down and sitting. Her goal is to work up to more sitting and standing. I'm going to tell her that isn't my goal. I'm just interested in how I can do strength training laying down because it saves the upright activity for things I actually enjoy.

Moral of the story. Toxic partners can ruin your life forever. If a partner tells you to ignore your doctor run as far away from them as possible.

What a joke! 😡 "Fools error?" We aren't foolish for not always pacing. From 28 years of this, I'll tell you that you'll pace yourself right into deconditioning and stagnation which takes your activity threshold lower and lower while letting any muscle disappear, making you less functional than before. We can't go nap in a bubble our who lives! I'm a mom and the sole provider for my household who wouldn't be able to survive off pennies of disability in the US. I don't get to trickle through my work day, take a nap every 5 minutes, nor ignore the demands of a child and household. Y'alls advice is basically play dead. How about digging more into solving the root cause and not band-aiding the real issue! Very disappointed this is the best advice you have.. most people with this issue already try to self-pace as best they can. 🙄

This is needed to oppose the general ignorance of the existence of PEM among the medical establishment overall

My warning sign to lay down is the heat sensation up my spine that increases as the base of my head. I’m in the severe stage. However, I finally think I figured out pacing. So hopefully now I won’t lose anymore battery life. I’m at a 30% battery and a 1.0 functional capacity.

I find it hard to believe ME/CFS can be diagnosed apart from exclusion unless that was a cheeky thing to add at the end. Since all autoimmune diseases are typically diagnosed by exclusion, because they're so hard to pin down and have so much overlap. I also think it's misleading to claim there is somehow a battery of tests based on simple observations that fit some criteria. Lupus even with the definitive malar rash (butterfly pattern rash) requires a biopsy is still notoriously difficult to diagnosis without also blood testing and spinal tap, and above all a good diagnostician. SLE is so elusive it is categorized as one of the 'great imitator' diseases which it is often misdiagnosed as Rheumatoid Arthritis. I would be wary of anyone or entity claiming it can diagnose something that is so vague and has been very difficult to acknowledge was even a disease until recent. So my point is you're definitely experiencing something, but best to be sure by exclusion, since no other comparable illnesses manifest the same, and so many autoimmune diseases will manifest differently from person to person which all look and sound so similar to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) which is awfully vague terminology.

So unhelpful. We are people not “individuals” in your spreadsheet. The “management “ of symptoms presented here offers no ideas for recovery.

I get very Potsy if I am exposed to foods I react to, especially hidden corn or gluten. Plus I have hEDS so I have to get enough salt + liquids, but I am stuck on a very limited diet. I do get the restless leg if I am low on certain vitamins. It goes away within 1 hour of I take the right supplement. Sometimes its iron or B1 or calcium/magnesium. It all depends what I am low on that day. And nonfood items can make me potsy too if it contains the hidden corn.