@doctor.bing: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is one of the most misunderstood conditions. #TikTokLearningCampaign #LearnOnTikTok #BrainHealth #chronicfatigue #tired
I think it is a trauma response. I have these conditions but not lasting months but weeks and I feel it could be part stress and trauma but I’m not a dr
2026-07-30 22:29:03
0
cfs424 :
Bedbound since I was 18 now I’m 32 my life was stolen. I got sick overnight when a man spiked my drink in a nightclub and woke up in the hospital and never recovered
2026-03-08 13:24:51
1310
78999em :
So Fibromyalgia
2026-05-18 11:34:12
1
Paula Ferguson967 :
People who have this suffer so much and people don't believe them. :/
2026-03-07 19:28:24
1623
Tif 🍓✨️ :
my doctor thinks I have this and not hypersomnia because post exertion malaise is it possible to have both?
2026-03-07 17:01:57
15
Aho 🐦🔥 :
Maybe we should stop calling it chronic fatigue syndrome. It’s way more than this, it’s seriously debilitating and all your autonomic nervous system fonctions are not working properly. It’s more than deregulation. It’s like it’s broken and we are barely surviving. I have PEM just by thinking or having a short conversation. Doctors leaves us on your own and it’s very dangerous. We are completely abandoned by the medical system…
2026-03-08 07:29:19
691
treschicstaci :
it's living hell
2026-03-08 17:25:00
530
Vivien :
I’ve been bedbound from severe ME for 3 years now unable to tolerate light. I hope that there will be effective treatments in my lifetime. It is a scandal that there has been so little research done on ME so far and that research funding continues to be extremely little and not at all appropriate in relation to the amount of people who suffer from ME and how severely disabling and debilitating it is for so many of us. Studies that compare the quality of life show that ME has the lowest QOL (by a long shot even) amongst all of the chronic illnesses that they compared which included some cancers and MS (which has multiple treatments while only half as many people actually have it). And the funding still is not being provided by the governments of this world and big Pharma isn’t investing in the research of treatments either. We are dying and suffering in dark rooms. We need research and appropriate care (like education of healthcare workers on how to interact with us and how to treat us) IMMEDIATELY. I’m glad that you know that ME is a neuroimmune multisystem illness, many physicians still believe that it’s psychological despite that having no scientific backing and do not even begin to understand PEM. We need all healthcare workers to learn this asap
2026-03-08 02:19:35
144
kat_ros_ :
Long Covid took all my underlying health conditions and ramped the symptoms up making them totally disabling and added a whole bunch of new neurocognitive diagnosis ( unstable disautomomis, POTS, MCAS, neurocognitive disorder NOS, etc. on top of what I already was dealing with. Disabled RN now, and the disability court are neither kind nor efficient. I would like my old brain/system back please! It was perfect, but it's a lot better than this!!!!
2026-03-07 21:01:26
209
NakorsReprieve :
I'm working on specializing in treating this; too many of my patients have it and there's so few options
2026-03-08 16:59:54
223
Caitie 🧪🧬🔬 :
Caused by a viral infection for me
2026-03-08 06:21:38
102
Getonwithyou 🇬🇧 :
Forward to my doctor please, who is presently basking in his ignorance and telling people to exercise more.
2026-03-08 11:06:54
44
user90756802510703 :
people also need to understand how PEM functions and that even if we "can" do something in the moment we may pay severely for it later. and not respecting our energy limits sends us on a downward trajectory getting sicker and sicker.
2026-03-08 01:40:31
411
M22222 :
I think there’s a root to all of this and we need to figure it out. Instead of giving up we need to get to the bottom of it for ourselves and for me it has been mold and EBV.
2026-03-08 23:23:19
17
u_m_m_m_m :
I’m glad to see that providers are finally not saying it’s just stress/anxiety etc. This is debilitating for some and is part of the reason I became disabled. I’m beyond exhausted and am in pain 24/7. This is not the life I thought I would be living.
2026-03-07 17:37:14
86
Lucinda Crimson 😷🍉🌱 :
Thank you! It’s also very common, about 8 times more common than MS (probably far more since most people aren’t diagnosed) but most drs know nothing about it.
2026-03-08 09:58:29
11
GimmeGarner :
I think mine is caused by foods containing Tyramine. Fermented foods and chocolate give me vestibular migraines. Debilitating when I get them.
2026-03-08 01:50:38
6
EvolvingWx🌪 :
it's mitochondrial dysfunction along hpa axis, grossly disrupts immune function, autonomic function. been dealing with it for years, same with my son
2026-03-09 09:13:15
23
Rootmich 🍁🌈🌻 :
Thank you for spreading awareness. I’ve had it for 15 years, but was diagnosed as depressed until a few years ago. Adding medical trauma to my physical condition was really bad for my long term health. I can’t work.
2026-03-08 07:19:27
22
Lianne :
I was bed bound for two years now every time I crash I’m scared stiff I won’t get out of bed again
2026-03-10 11:01:22
13
Moongardeningseattle :
Please imagine doctor appointments and the post exertional malaise crashes from trying to get help. Now imagine if your doctor doesn’t know anything and you don’t get help and you crash.
2026-04-15 06:52:58
13
Michelle🥰👑☯️ :
Just a shame people don't understand just how debilitating this is & that it's impossible to try and push through and stay awake
2026-03-09 00:15:10
23
Silje_cfsme :
But I not like that ME and CFS goes under one diagnosis…
2026-03-08 05:29:53
20
Elise :
I love how you explained this - thank you so much! I have a friend with CFS & now I better understand it with your phone battery analogy! Question - how is this differ from CPTSD? Their symptoms sound similar - are there biological similarities?
2026-03-08 05:06:43
24
Sher :
13 years now & so tired of doctors downplaying my symptoms
2026-03-17 02:56:08
7
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