diva
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Sunday 19 July 2026 05:12:24 GMT
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Vio :
she talks about her "PEM" as getting better after resting for 30 minutes when in reality PEM sets in at least 12 hours after and takes days to get back to baseline from
2026-07-19 05:38:36
335
KumikoStickers Comms open :
im not diagnosed yet but in the process of elimination to a possible diagnosis. . I literally had a family day put yesterday. 5 hours on my feet and 4.5k steps after resting for a whole week with not going outside and doing much of anything. im now curled in bed unable to get up because my whole body is on fire, like ive slept for hundreds of years in one position and just woke up. or like ive been walking for days on end. I tried going the gym for my pots, id be okay just a tiny bit sore till bed time where I felt like a truck hit me. I cant even clean my room because I get in so much pain and fatigue that its like torture.
2026-07-21 10:56:46
0
Hermit :
Actually, they might have it. There's no universal will/won't help when it comes to this. Just because exercise doesn't help all such patients doesn't mean it helping them disproves them having it.
2026-07-19 12:03:36
15
thequeerplantparent :
It really seems like she’s conflating chronic fatigue as a symptom with chronic fatigue SYNDROME, like when she was saying “if I go running I go home and take a shower then go lie down for 30 minutes” does she think that that’s what PEM is?? Feeling fatigued after exercising?? Bc like yeah fatigue after exertion can def happen with stuff like POTS but it’s not PEM…
2026-07-19 05:34:17
217
eve :
man i have to rest for like days after just reading a book 😭
2026-07-21 07:01:15
1
🧍🏻♀️ :
every time i tell my gp that exercise makes me worse he keeps saying “well pain after the gym is normal” like brother im bedridden from pain and fatigue 😭
2026-07-21 14:33:07
0
. :
how to can she run regularly?? I can't even make my own meals 😭
2026-07-21 08:51:31
1
Yorkshire Pudding | illuminate :
ngl most exercise makes my dysautonomia worse like I know its supposed to help me feel better but I feel like I'm gonna throw up then I ache for days ✌🏻😭
2026-07-21 10:25:58
0
ant :
omfg I once told someone If exercise helps your Symptoms you probably got misdiagnosed. And I got so many angry replies to my comment??? huh??
2026-07-19 11:04:54
76
Cody 👨🏻🦽 :
POTS can cause fatigue! It’s likely she has POTS and fatigue from that. Exercise with ME 😭 BAD. Doctors need to learn the difference between PEM and fatigue 😭
2026-07-19 16:56:02
40
kryssalou :
It’s actually been insanely difficult for me to have to STOP being active. And i could never RUN like that… but I feel much better emotionally when I MOVE my body. So I once had labor intensive jobs, spent a lot of time being physical.. pushing through when I was starting to have these issues absolutely fucked up my “baseline” more than once in the past several years. And yes now when I CAN be active at ALL.. it’s a short walk or some chores around the house. That I struggle not to PUSH and do more. Things like moving out of a house entirely on my own cause months long crashes and I constantly worry if something inevitable like that in the future will cause me to stop “bouncing back” to semi better baselines. Nevermind what being homeless and constantly on the move did to me bc I genuinely would have 🪦 another maybe 2 months out there and I was lucky enough to have a car to live in.
2026-07-20 19:50:42
0
Tiny Wonder :
NO IT IS NOT DO NOT LIE. M.E. and exercise do NOT mix. I have M.E. and fibromyalgia and I struggle to even walk up the stairs, let alone work out.
2026-07-20 21:50:01
14
Chronically Chill ♿️ :
The fact that she says RUNNING specifically helps sets off my red flags big time. There are some exercises that are shown to be helpful in the MILDER forms but you specifically need to keep your heart rate 10 bpm above your resting so you’re not EVER doing cardio basically. These exercises are almost always done laying down but they are done slowly and with so much pacing. I definitely do not think she has mecfs if she runs multiple times a week.
2026-07-19 20:21:34
32
ezra.g.art :
these videos kind of break me bc I just. miss running so so so much. I wish I could exercise again.
2026-07-19 05:16:23
76
asher 🚀⚙️|🥩📼 :
"30 mins after a run is fine" Man i need that after walking to the bathroom
2026-07-19 16:08:58
16
Laura :
For someone claiming she's spreading dangerous misinformation, so are you. You're also incredibly invalidating and gaslighting, to an already harmed community. You need to learn a kinder delivery as educating doesn't require being nasty. Regardless, you said "exercise" in a general all encompassing way. It's NOT ALL exercise, but more specifically anything that increases your heart rate. More commonly anaerobic exercise that is higher intensity, increases heart rate, reduces oxygen, requires endurance or bursts of energy, etc, but can include other things like excessive walking if someone has an underlying tachycardia condition such as POTS. So for me, I cannot usually go to the grocery store for more than 1 or 2 things or I'm taken out for 4+ days. I went on a trip to Nebraska last year, and was hospitalized 4 days after returning. As it triggered a flare that didn't release me until January 2026. A diagnosed MECFS flare, mind you, that then roped in (also all diagnosed) aEDS, POTS, chronic ileus, pancreatitis, and mastocytosis flare. From May 2025 to January 2026, I was in the hospital for 1 week roughly every month, sometimes 2xs a month. Yet, I've been going to PT 2xs a week for 3 years, and tolerate that fine... because my PT specializes in PEM, hypermobility, and mastocytosis exercise intolerance. MECFS isn't just brain, it also has muscle fiber integration, displayed in tons of research. People with MECFS literally have different muscle fibers than normal people, which is why it is frequently tied to conditions like EDS (and technically POTS as EDS causes POTS). We do very low intensity strength training, be VERY mindful not to raise my heart rate, do not do a full body workout (which additionally triggers PEM) but rather focus on the same very specific muscle groups every time, and do ZERO cardio. We also originally started with zero weights, and very progressively over 3 YEARS added/upped weights for SOME of the strength training exercises. The issue isn't ALL exercise. MORE IMPORTANTLY, it's the fact that there are very few ME PT specialists, even fewer patients have access to them. So more harm than good is done cause NO ONE knows what they're doing.
2026-07-19 21:37:10
0
Growing_Soul24 :
Most exercise is not encouraged with ME/CFS but having both severe ME/CFS and POTS myself you can't be paralyzed at the word exercise either. I was working with a great team of OT and Physiotherapists that specialized in ME/CFS and Long Covid. I did physio exercises recommended by the Physiotherapist for my back atrophy from using a power wheelchair for 10 years. They were very light and very small reps but when done properly and multiple times a day it helped my atrophy without PEM. We can't just close our minds in fear when we hear Exercise as under proper supervision there is ways and no it's not graded exercise.
2026-07-19 20:26:05
14
heidi83 :
I tried light exercise and ended up bedbound for 2 weeks. I pointed this out to my gp when he suggested I join a gym and lose weight to help my ME/CFS. I know I need to lose weight. But making myself so sick that I can't get to the loo without help is not the answer.
2026-07-19 17:15:22
25
beck :
yeah a lot of doctors don’t get that ‘chronic fatigue syndrome’ and ‘chronic fatigue’ are in fact not the same thing and will put CFS/ME on ppls records when they mean chronic fatigue as a symptom/without a clear cause
2026-07-19 16:23:27
28
INFECTION 💉 :
what shes describing is pacing 😭 im so confused
2026-07-19 05:48:12
22
Cara Reel 💙🌈 :
what is wrong with these people why are they so convinced they are right when they don't even know what the actual symptoms of mecfs is.
2026-07-20 22:16:30
6
palomitasal :
the fact that she mentioned running, i can't even run when i'm milder anymore 😭
2026-07-19 12:21:16
13
Dulce 🌱🦋🐝 :
when i was younger and still pretty new to my ME/CFS diagnosis, I would try to exercise to improve my POTS. I would get so tired in the very beginning of my exercises and would crash by the end of it. I still try to work out, but it doesn't last very long maybe like 5 minutes at a time
2026-07-19 13:48:54
12
Arcadia :
i saw their video and was genuinely taken aback by the misinfo
2026-07-19 05:36:46
12
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