Improving lives impacted by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia, Long COVID, and related comorbidities through clinical care, research, and education.
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 ?????
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.
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!!
ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-oLC2tZMPbsE.html They have lots of videos about everything. Mostly we have to pace, which is something each of us has to figure out for ourselves.
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!!!
@FortheBudgies It's amazing how much valuable information can be packed into just three minutes. Some people are full of hot air, while others provide useful clear, and concise content. I guess we know which camp you're in!
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!
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!
I'm currently collecting disability (SSI), but my lawyers are trying to get me on SSDI instead. Then I won't have to worry about covering my rent for a while and get me more food. To do this, I need a formal diagnosis letter, which will help my lawyers as they appeal my SSDI case. Thanks so much for any advice!
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.
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 think it's also good for helping to identify triggers. In reality, many patients skip aspects of hygiene and other self care in order to meet care responsibilities or ensure more basic needs such as nutrition are met.
I've been using Visible with the polar verity sense armband and it's helped me TRY so much better. Sone days the same activity with eat through my pace points, while other days it barely uses any. I also use welltory and its helped me learn about parasympathetic and symptomatic nervous system and I know when I'm in symptomatic I will feel pretty good but eat through pace points. Then I diligently rest and my body switches to high parasympathetic swing and I will feel awful.
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! 🥂💐🫶
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. 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.
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.
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’m dealing with the double edge sword! I’ve been resting in bed for a couple weeks after a crash, but now I’m dealing with weakened muscles and worsened POTS. I have to keep moving AND I have to pace. Thank you for your comment.
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.
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. 🙄
Coming in hot! Whoa. Slow down. First of all, you heard wrong. She didn't say "fools error", she said "a fool's errand" which is a completely different meaning. To save you a trip to the dictionary, a fool's errand is a task or activity that has little to no hope of success. So that in NO WAY is calling you foolish. Good lord. While I catch my breath I'd like to say that I'm very sorry that you are unable to pace. Your life sounds very difficult and I hope that a cure is found. You have to understand that what you're asking for "digging more into solving the root cause" is EXACTLY what they spend their lives trying to do. All they do is research, run clinical trials, educate medical providers, and put out FREE content for everyone. Also, everyone is different. Do you think that your body is somehow the template for everyone else's? Yes, your body doesn't respond like others. Many are bed-bound and could only DREAM about working or providing for their families. There are so many variables and comorbidities to this disease that it is extremely difficult to make a cure all for everyone. I'll never understand the hostility towards the doctors and medical providers that ACTUALLY BELIEVE that this even exists and do nothing but try to find a cure! Don't you understand that putting content like this out there can potentially inspire others to get ideas and help out? All of this is to help you and everyone else that suffers with this. I'm a fierce defender of anyone who is trying to help, so if I come off a little strong, that is why.
@@CalvinRyerson It doesn't matter. A "Fool's ERRAND" is no better. They may as well say "Play Dead!" News flash, lying in bed or barely living life leads to a poor outcome too.. and usually sooner. If someone doesn't work they risk going broke and possibly homeless. If they don't do activity to challenge their muscle they'll get muscle wasting leading raising the risk for injury and weakness (making minimal activity even harder than before). If they don't exercise their mind you can get memory issues or depression that can lead to su*cide. Even bed-bound people need movement and activity. We can't just avoid life. People need to rise up and quit accepting the bare minimum from our healthcare system. We have some of the most costly healthcare in the world, yet it's sickening how terrible it is!! It functions by being reactionary and band-aiding symptoms instead of being proactive and digging deep into root cause. Most folks wait 6 mo.+ to see specialist who only chats with them about 5 minutes, and discards them saying "pace yourself," "it's in your head," or some other garbage. I find it amusing the doctors who follow this medical system jab us with several series and cocktails of vaccines from the time we are born into adulthood full of formaldehyde, fetal tissue, mercury, aluminum, etc. and then expect our bodies not to produce side effects or mutations. Our system keeps people sick to sell the Band-Aid.. not the cure. If this is the best information they have, they've obviously been failing to truly listen to real patient feedback and deeply understand. Most people don't have live in caretakers or the option to nap all day till they die. Sorry, not sorry... They sound out of touch. These doctors need to push harder. I don't know anyone with PEM/ PEMES/CFS that doesn't already realize they have limits, nor any of them that purposefully push past those limits more than necessary. You act like these doctors do this out of kindness, yet they and their company are making major money off these videos and at their jobs. In turn, patients deserve and have every right to speak out and push for better. It's sad you can get better advice than this from a FB support group from members without medical degrees than this particular doctor lead video series. I don't have hostility towards doctors, I have distain towards shallow, lacking, surface level advice. If doctors really cared so much they could help us by rallying together and pushing for holistic and functional medical doctors visits, body massage, needling, stretch clinics, home help, chiropractic, spinal decompression, deprivation float tanks, etc. to be universally covered by insurance. They'd also push for methods and advancements to be researched here that Europe has been ahead on for decades, yet the U.S. drags on. Instead they remain content and complacent in a broken system.
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.
