Upright Activity and Exercise Intolerance: Critical Concepts in the Evaluation of Chronic Fatigue

[@sapofish]

Someone (who's not too fatigued with ME/CFS, like myself!) should nominate Dr Bateman for the Nobel Prize in medicine! Still today, so many believe CFS is a fake diagnosis, which brings so much pain to people who suffer with ME/CFS! Her careful and compassionate research at least reduces some of the mental health challenges of being so dismissed when you are obviously unwell. Thank you Dr Bateman!!!

[@goldilockz6517]

Too tired to comment anything interesting but commenting for the algorithm ❤

[@helenstangret8830]

All this new stuff about orthostatic intolerance is so helpful to patients including me and makes so much sense and I wish I knew about it 30 years ago. I would like to make a suggestion: in future videos it would be better if the camera person focused on the slide because otherwise it’s extremely difficult to see. We don’t need to see participants and their drink bottles or the speaker but seeing the slides would really help particularly given the complexity of the information. But thanks again for all you and your colleagues are doing. It has changed my life.

[@sacredrain7757]

So nice to have a clue about why my character is not enough to get me out of bed. When I have those ever more rare moments when I can rise, I can still sometimes soar, but I pay hard for three and a half days and nights, and may not rise again for months. Thank you for giving me understanding, if not hope. Other than staying in the small energy envelop, I did not hear any other path to health for a person who can’t get to a pool. Thank you for educating those precious few who are interested in understanding what is happening to people who don’t even understand themselves. We are not all just mentally weak.

[@jewelleryaddict]

i get it after close to 30 yrs of cfs and fms. struck when was in 30s. learned to pace myself. know if I push on one day that is better than others, not good, better, than I will pay. usually 3 days mostly in bed . learned if wanna play must pay.,sometimes worth the pain increase and time in bed other times not worth it but gotta pay anyhow. lot of us understand . sucks but its all we have since no one is helping us. just more studies and more studies. CO Q 10 helps with fatigue and acetyl carnitine. and NADH and astralagus a herb. all sold on Amazon and supported by Well known University studies. good luck to you.

[@sherrybutts5947]

Llllllpikn I

[@FortheBudgies]

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.

[@Vessenkestrel]

This is the first time I've heard anyone memtion emotional exertion causing a crash. I've had a hard time expressing to people why I want to end conversations sometimes because I can tell I am getting too emotional about it and I won't be able to function later, but never realized it was related to ME. Usually people think that they can "help" me when that happens by trying to dig into my past and get me to talk about trauma, but I I just end up begging them to stop because I know I get sick whenever people try and pretend to be my therapist

[@jewelleryaddict]

well its no wonder we get tired even talking we are sitting there or standing trying to engage on conversation we are at same time trying to supress pain and fatigue. where the other person is not. mental activity is as tiresome as physical activity, ask those who work at computer all day. they get tired. so dont feel bad or feel you must explain yourself its up to them to understand. .i know 30 years practice with fms and cfs diagnosis.

[@SatumainenOlento]

That is descending to try to "help" you. They think that because you are sick there is something what you are not doing right. And they think that it is your mental/emotional health that you have not deal with. To say the truth; those people should look into mirror. Normally they try to heal something in themselves when they give unsolicited therapy to others. Stay away! Just rise your hand up and say promptly: "I must go now! Thank you for your advice, but I really need a pause/to go!" No need to explain yourself about it. Just go. You have my permission and countless other people's permission to take care of yourself first and foremost. Sometimes people do not understand before you rise a boundary and walk away. That's when they stop to think. Not, when you try to explain yourself. Hope that this helped! Hah, this was kind of unsolited advise on it's own. I just know the struggle so well. I have walked away from people when I have not been able to say anything. Not even: "Excuse me!" What a relief to just get away from those draining people.

[@kayelle8005]

Yes our energy envelopes are impacted by exerting mental energy, emotional energy and physical energy.

[@Anotherhumanexisting]

I appreciate this research being done. However I believe it may shed more light on prevention or treatment of precursor risk factors earlier in life rather than a “cure” once someone is moderate or severe.

[@FionaEm]

So great to see Dr B presenting to physicians in a wider forum 😊

[@Valentina_-lw9ui]

Cheers for the Video! Forgive me for chiming in, I am interested in your opinion. Have you considered - Seyrooklyn Salient Supremacy (Have a quick look on google can't remember the place now)? It is a smashing exclusive product for overcoming the symptoms of multiple sclerosis without the hard work. Ive heard some awesome things about it and my coo-worker after many years got astronomical results with it.

[@FortheBudgies]

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.

[@omygod9062]

My recovery period after exertion is 72 hours. After the medium exertion 10 hours later a wave comes upon me where everything shuts down and the only solution is to go to bed until it passes.

[@asathora1819]

I’ve been learning to adapt for a whole year of this madness. No amount of reconditioning helped with my condition. If I pushed- I suffered tremendously after. If I stayed put- I became even more déconditionnes down the line. The solution was to exercise in bed and use compression stockings. I’ve been pacing myself but it is so limiting that I can’t cope with daily routine activities. My envelope was huge before this onset and now I’m struggling with the smallest of chores. PoTS doesn’t seem to let up. My heart is struggling and my life is sh*t

[@randomname4726]

Have you had any improvement doing exercises in bed?

[@dshepherd107]

Have you looked into Dysautonomia?

[@Anotherhumanexisting]

I’ve lived with ME/CFS since I was 17, possibly younger. 10 years later of obsessive research, self advocacy and treatment and I have worsened and cannot accept this quality of life. It has ruined my attempts at an independent or healthy life. If I had a pet in this much pain, euthanized would be the kind choice. I believe the US states with death with dignity laws need to be expanded just beyond 6 months of life expectancy. What about those of us who have decades to suffer, have thought it through and are unable to end it peacefully on our own due to carceral laws? I appreciate this research being done. However I believe it may shed more light on prevention or treatment of risk factors earlier in life rather than a “cure” once someone is moderate or severe. I won’t speak for others, but I don’t deserve or consent to live like this any longer.

[@JohnBedson]

Did you hear that? The boyfriend insisted that she get off all her meds and then left her when she became Ill !!!!

[@RedRedux]

I'm a patient at women's college hospital, they are an absolutely amaizing team ❤️ I actually have some of my old life back now ❤️ forever grateful for how much they actually care and how hard they work Dr. Harvey really is changing lives ❤️

[@sacredrain7757]

Cmac Wow! Is there really hope that I could meet the definition of human again? This video at least explains why I can mysteriously have a few hours of activity unfettered, but be stricken for three days and nights or more. If I stay in my energy envelope, I will atrophy more and loose the mental battle. Did they give any other useful advice?

[@sunshinenOJ]

@16:12 Hours of Upright Activity (HUA) @23:00 Gene expression during exercise for CFS @28 Pacing importance @31:45 Orthostatic Intolerance Evaluation @49 Questions

[@PrairiePlant0]

This was very interesting to me, especially the measure of hours of upright activity. I think my decline over decades with this disease would be best measured had I routinely measured my hours of upright activity. The orthostatic intolerance issue is a bit clearer to me as well.

[@KidCity1985]

Stood at the fair booth for 5 hours on Saturday, its Tuesday and my butt is well kicked!

[@jacquelineczizik8166]

Dr. Bateman described exactly what I am going through with BP down/heart rate up. I am finally able to see why I can't exceed a certain level of activity. When I do, I will suffer the following day and end up sleeping for hours on end. I out of nowhere went from seasonal allergies I could manage to having 37 indoor/outdoor allergies (requiring weekly shots and so many meds. I have been diagnosed with postural BP and have been monitored for arrhythmia (which presented Ventricular Tachycardia). I suffer with tension headaches, chronic upper respiratory infections and feel cold if temp drops the slightest bit. My hands are usually cold. I have sensitivity to light and noise. I have Vertigo attacks I thought allergy related. Now I wonder if it is sympathetic over load. All of this had made me seek psychological help. Thank you for possibly giving me a lead.

[@sabs6666]

Wow thank you ... thats wonderful .. ❤

[@SuellaPostles]

I'd liove a transcription of this. I learn best that way.

[@batemanhornecenter]

We will get our team on it and see what we can do!

[@papercup2517]

@@batemanhornecenter Thank you so much

[@papercup2517]

@@batemanhornecenter Any word on that transcription?

[@SuellaPostles]

If not a transcription, I'd love the ability to down load the Power Point screen information.

[@bizzyfit2128]

fully recovered patients who relapse upon beginning an exercise program = me 😥

[@dshepherd107]

Look into Dysautonomia

[@solar979]

After 10 years of ME/CFS my daughter is now severe and bedridden. She can't get out of the bed at all unless I tightly wrap her legs and abdomen with elastic bandages. She does exercises in bed now. Our experience with exercise or exertion during these ten years is that it is impossible to know how much you can do because that constantly changes and "crashing" is hard to avoid. What is very concerning is that after each crash she would partially recover in time but never to what she was before that. I wonder would she be better if she didn't try at all.

[@sacredrain7757]

Gea My quality of life is not defined by the bad times that I endure, but by the good moments that I can sometimes reach when I dare to try. My crashes are totally worth it when I got to do something that I enjoy. I have to aim low and wait for my moment, but I am fortunate to have a loved one who is always ready to be the wind beneath my wings and my soft place to land when I fall.

[@cheerio2252]

Prayers for you and your daughter, she’s fortunate to have your support, hope drs discover a solution soon. Activity tolerance is such a challenge, the one key thing that helps me is to sit outside at least 30 minutes per day, it seems to help with a small amount of extra energy or sitting near a window in the light. Having a pet nearby is therapeutic. Soaking feet in warm water. Heated blankets. Just felt compelled to say something.. I’ve spent 10 years struggling with this too.

[@daniellemroz8548]

I kept just trooping through everything. My job choices changing to accommodate interstitial cystitis. I really couldn't work until my hysterectomy because of periods and the p as in. Adenomyosis. I went from CNA to home aid so bathroom use more available. I had a period of 3 years couldn't work after huge IC flare. Worked my way up and doing ok but suddenly I started noticing myself getting I'll, feeling like I had the flu, a few times one year. Its sneaky because it creeps up on a person. But I went through so much just to get appropriate pain care so I could start healing from that huge flare that was prolonged because of delays in pain care, so it really knocked me down. I have never been the same since. I had a huge fight to get control over all the complications of pelvic floor and bladder just to walk again without severe hindrance. I stayed slower than anyone elese but was regained enough to find a job. PCA is something you can find the right fit for yourself and was always my passion since a teen. I found myself having to jump through hoops and tramatized due to the excessive monitoring and feeling criminalized signing agreements didn't want to agree to but knowing I needed p as in care to keep walking and not have my body just sorta do what happens when the batteries on something runs low and out. I'd just sorta do that trying to grocery shop and find myself stuck even broke wheels on shopping cart. So being graded on a score of risks weather or not doctors prescribe medications I caught on quickly that I was in mental health therapy up to 2 or 3 times per month or weekly and that in my doctors notes my ability to work and remaining employees is very contingent on my ability to get medications. When I work I did so part time, no more than 4 to 5 hours 4 days a week. And would be down all day for 1 to 2 days after. My client needed more care and now I seem to have really done it. We found the sweet spot together so I could remain working. I'm so sad now that it feels like I'm losing this because of pushing myself. I also wanted to just be me again. Take care of my home. I have a household of young adults now that are super busy, working and a senior in high school working. I want to be apart of life. They come to me in my room and have a family talk because of how often I'm sideways as I call it. I love going outdoors, small walks , swing outside, rocking recliner in the house. But I get very sick everytime I overheat due to humidity levels at clients home, that seems to determine how much exercise I can do without becoming so sick I'm down for day. I am afraid to let my providers know I'm having trouble because I fear that it will influence my medication therapy and without that I won't be able to even fight through my good days. I also been on sertraline for over 15 years. And have struggles needing to stay on 1000 milligrams of valvicor or valtrex type medications. This is devastating. I love to do so much in life always have. I totally agree with the cognitive part.

[@forisma]

08:00 diagnostic criteria 28:13 Does it help to pace?

[@SuellaPostles]

Thank you. Much appreciated!

[@therealbluehooney]

I found this video I my searches bc of my exercise intolerance. When I do exercise at a moderate or intense level (anything beyond walking), I get sick. Cold/flu symptoms such as fever, sinus pain, sore throat, chest tightness and respiratory congestion. I am also tired ALL the time. The harder I try to push myself to get in shape, my body actually just seems to break down rather than build strength and stamina. I thought maybe I have a mitochondrial disorder but now I wonder if I have ME/CFS. I also experience symptoms like fatigue, dizziness and brain fog while in an upright position at random times, but if I lay down, it all goes away and I feel alert, awake, and clear minded. Sometimes I’ve wished that I could study my school work from a supine position. I wonder if I also have OI. Would a neurologist be the kind of doctor I would talk to?

[@SatumainenOlento]

Neurologist yes! But keep very detailed diary of your symptoms before hand. That helps massively! And fuctional hours per day etc. And you sound like me about an year ago! I do not have diagnosis, but in the long process of getting one. Maybe. Or maybe this is something else. It just seems to be very good fit for cfs/me.

[@joytotheworld6804]

This is so long can't watch it, any new information?

[@yoya4766]

me too, i have m.e this is way too much for me.

[@rachelslife9568]

Case #1 sounds like Lyme and tick coinfectioms

[@sheririgby8624]

so is sauna-ing a bad idea if you have OI?

[@killandra23]

To any MD's and come and read this, you cannot discuss reconditioning an ME/CFS patient until you've solved the molecular energy problem. Just get that crap out of your ableist head. If you want to recondition us, then raise the money for the molecular studies and treatments. I never heard anyone put a cart before a horse so fast.

[@sacredrain7757]

killandra23 Try not to bite the only hands that are even interested in healing you. Your point may have some validity, but the way you put it closed minds. I am grateful to anyone who is even trying to understand what is happening with us, even if they don’t have all of the answers yet. I am angry that I have lost my life too, but I am in control of my attitude, if nothing else is left to me. Counseling helps.

[@killandra23]

@@sacredrain7757 I will bite the hand that is biting me until it stops. You do you.

[@SatumainenOlento]

@@sacredrain7757 That was a good answer 💕💖💕

[@yoya4766]

@@killandra23 very clever and appropriate response. Does anyone ask an amutee to walk to recondition themselves? Or do they get prosthetic legs first?

[@wendymcdonald5145]

This sounds like Mast Cell Activation Syndrome - MCAS.