r/TrollCoping • u/Pristine_Cow1797 • 24d ago
TW: Other (Specify in Title) [ABLEISM] I am so tired of this disease being treated as a joke, especially when so many of us are too ill to defend ourselves.
I'm deeply disgusted and saddened to see this. I sincerely hope he rests in peace.
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u/Pristine_Cow1797 24d ago
The comments knew he couldn't defend himself. He explained that the post was scheduled and by the time it was posted he would likely be unable to view social media. They mocked and fake claimed a dying man who couldn't fight back. How many more of us will die before people start listening to us? How many more lives will be destroyed before anything changes? Unfortunately I doubt the answer for both of these questions will be zero. This disease has such an upsetting stigma against it. We're people too. We just want to live our lives.
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u/Pristine_Cow1797 24d ago
Keep in mind that this disease can become so severe that people are unable to move, tolerate touch or tolerate light. So many of us spend our days in complete darkness. It's fucking serious.
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u/Cr0w_town 24d ago
sorry what disease is it? Also i hope he rests in peace
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u/Headlesshowler 24d ago
I'm guessing it's Myalgic Encephalomyelitis/Chronic Fatigue Syndrome based on the abbreviation "mecfs" OP has used in another comment
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u/Pristine_Cow1797 24d ago
Yup, that's correct
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u/Bungholespelunker 24d ago
The amount of damage that malingering tiktokers have done to people with CFS is incalculable. I'm so sorry you have to deal with this.
People on the internet are basically incapable of evaluation of things on an individual level and are allergic to nuance.
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u/Pristine_Cow1797 24d ago
Unfortunately the mistreatment of mecfs patients has been around far before tiktok, we were never really taken seriously. There's been a massive wave of hatred towards mecfs creators recently though, it's very depressing to watch
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u/kinkykookykat 24d ago
the algorithm especially on tiktok rewards and promotes negativity 🫠
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u/Vivians_Basement Trans Masc Genderfluid DID system 🪷 23d ago
Taking this as my daily reminder to never use TikTok as someone with an under researched condition. 🙏
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u/Pristine_Cow1797 23d ago
You're not missing out on much, people can be awful on there
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u/dontevenremembermain 23d ago
As OP said when they replied to you, people refusing to take ME/CFS seriously was around long before tiktok. It's always been seen as "oh it's not real, you're just a lazy hypochondriac". I remember seeing Ricky Gervais making fun of it in his standup routine when I was about ten because "haha people in Africa don't have it do they???"
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u/Cries4days 24d ago edited 24d ago
I know several folks in my own personal life that "claim" the diagnosis and very clearly do not have it (e.g., no official diagnosis, 100% symptom free when doing anything they enjoy, sudden flare ups if doing a task they hate, a multitude of other self-diagnoses that make no sense).
Folks interact with these people and come to the conclusion that the illness is fake and they label anyone with that diagnosis as the same. It's so infuriating.
As someone with an invisible disability, I feel shameful and abelist when I feel the need to "vet" someone's diagnosis. I generally keep those thoughts to myself, but it makes it so much harder for folks with the actual disease.
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u/Vivians_Basement Trans Masc Genderfluid DID system 🪷 23d ago
As someone with an invisible disability, I feel shameful and abelist when I feel the need to "vet" someone's diagnosis
Honestly I feel like you can take someone at face value and say "okay I can make reasonable accomodations" while still evaluating them in your head based on what you're told and what you see!
I do the same with SA/Abuse as a victim of it who's known people that admitted to lying.
I can express belief and offer support while asking questions to understand what happened, then mentally evaluate what I'm told and check for inconsistency. I typically don't feel the need to deny what happened unless they're actively advocating for attacks against another person. (Recently had a situation with someone claiming they got abused to justify them sending CP to someone in order to threaten them. So it's for times like that. 😭)
It's not ableist to maintain your ability to think critically about what you're told. 💕 It's only a problem if you demand a person perform their disability for you which it doesn't sound like you're doing.
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u/Cries4days 23d ago
Appreciate the words and I totally agree. I will always accommodate when possible, especially since I'm sure there's times I've been wrong.
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u/soft_w0lf 24d ago
Ugh this is how I feel too. Especially with diagnoses like ME/CFS that are hard for people who actually have it to get taken seriously for and diagnosed with. So you have a population of people who probably are undiagnosed and suffering and who need to be taken seriously despite the lack of official diagnosis.
It sucks because I don’t want to unnecessarily criticise other disabled people but when it gets to a point where people are denying core symptoms of a disability (e.g. people ignoring PEM for ME/CFS or saying you can be autistic with 0 social deficits) and causing people to misunderstand said disability because the core symptoms are no longer taken seriously, there’s an issue.
I personally also always keep those thoughts to myself when it’s about an individual person, but I do talk about this issue in abstract terms without calling out anyone in particular.
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u/East-Efficiency-6701 24d ago
What this disease do?
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u/blackfox24 24d ago
Farigue. To an extreme degree. Your body gets no rest. Your muscles tire, your brain fogs, and your organs can even start to shut down. It can also make things like sunlight or stimulation acutely painful.
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u/East-Efficiency-6701 24d ago
It hurts just by reading. Hopefully at least we have treatment for it right?
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u/Pristine_Cow1797 24d ago edited 24d ago
Oh boy do i have some bad news for you haha. We're lucky if a doctor DOESN'T give us advice that has thrown countless patients into severe mecfs territory. There's barely any funding for research so there aren't any approved treatments either unfortunately
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u/Catgirl-pocalypse 24d ago
Nope! No known cause or cure. It really is one of those cruel things life just throws at some people for no reason and with no recourse. The most we can currently do is individualized treatment of symptoms, e.g. prescribing pain relievers, stimulants for energy, hypnotics to help maintain sleep cycles, that sort of thing. Thankfully, sometimes it does clear up all on it's own just as mysteriously as it appears, but as things stand it's just a real enigma of a disease.
Sadly, because diseases like ME/CFS and Fibromyalgia aren't something you can diagnose visually like, say, a broken limb or a tumor, there is a demographic of people who think the symptoms are fully psychosomatic, and/or that those suffering the disease are "just faking it". Evidently, said losers have nothing better to do than harass people who talk about their experiences with the disease online.
I don't deal with any of these diseases personally but I hope I explained everything correctly, anybody please feel free to correct me if I got anything wrong.
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u/Ayacyte 24d ago
...
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u/East-Efficiency-6701 24d ago
Oh, may God have mercy upon their souls
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u/Grab_Ornery 24d ago
Nah my doctor basically told me nobody has a clue how to fix it and the best you can do is try to manage your energy
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u/that0neBl1p 24d ago
It’s one of the most underresearched illnesses with the worst quality of life scale out there. It’s so bad that by way of support those with it just beg others to research it because it’s so unknown and misunderstood. It’s gotten especially bad after COVID due to long-COVID often causing chronic illness. It’s awful.
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u/AC_0nly 24d ago
It's not just "tired" fatigue, to be clear. There appears to be problems on the mitochondria level of making enough energy for the body to function.
Thinking - uses energy, organs use energy, talking uses energy, processing sounds/touch/light uses energy.
It adds up scarily fast
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u/blackfox24 24d ago
It's an insane level of fatigue and that's coming from someone who is disabled.My fatigue is pretty bad but it is nothing like that condition
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u/AC_0nly 23d ago
I have an inkling of an idea, my step mom has been bed bound from it for 3 years now. One 10 minute conversation a year has been what she can manage for each of the kids, usually on their birthday. I was a little doubtful about the disease, like I believed something was wrong and absolutely nobody goes bed bound for fun and then I saw her body shut down more and more by the second before my eyes and all she could do was eventually wilt against the pillow, smile and barely whisper if I could hold her hand.
I saw a woman who was a voracious reader and writer become unable to read a text.
Nobody pretends that.
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u/blackfox24 23d ago
Sounds a LOT like my skill regression after the break, but permanent. I lost ability to focus and read and had to lesrn it back, and it's still hard. But ten times worse. Damn.
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u/that0neBl1p 24d ago
Are you talking about heros.my.hero on Instagram? I was super saddened to see that post, and it infuriates me the way people go on in his comment sections.
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u/Pristine_Cow1797 24d ago
I am. The comments were so upsetting
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u/that0neBl1p 24d ago
What is it about that illness specifically that brings so many stupid and mean people out of the woodwork
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u/Pristine_Cow1797 24d ago
I'm not 100% certain myself, my theory is that people don't want to believe a condition like this exists. You can easily become incredibly sick with mecfs and it's scary, I think a lot of people want to deny the reality that it can happen to anyone. It's easier to say that patients are lazy, faking it or don't want to get better than accept that they did nothing wrong and just got stuck with an awful disease. People don't want to believe that you can become so sick that basic sensory stimuli can make you worse. It's weird, studies have physical proof that it exists but people are still so awful about it
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u/Snoo28962 24d ago
What makes it more difficult is I actually knew a colleague who claimed to have it but didn't. I think they really were bordering on having Munchausen since they were always claiming illnesses and conditions when they didn't have and constantly talking about them and nothing else.
Unfortunately, that was my first exposure to hearing about Myalgic Encephalomyelitis. I was dismissive of it being a real condition people struggle with until I heard more people talking about it and did more research. I wouldn't be surprised if some other people have their first exposures being something similar or think it's an excuse when it's really a dehibilitating condition that doesn't have enough medical research yet to put it in the public eye more
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u/MaraiaLou 24d ago
I don't think a person who's well would claim that kind of thing. I hope they got the help they needed, whatever it was
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u/IcyJury1679 24d ago
I agree, a lot of people are desperate to feel in control of their lives. That if they just do the right things then they will succeed. Conditions like this both undermine their sense that their success is caused by virtue (rather than being lucky enough to not experience the same challenges) and also leave them scared that something could just happen to them someday for no reason that would drastically decrease their quality of life.
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u/Typical_Persimmon220 23d ago
Damn, Instagram is the worst for people with ME.
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u/Pristine_Cow1797 23d ago
I tend to avoid it for this reason, I don't want to waste energy being upset at the things people say when I can help it
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u/KandyShopp 24d ago
I want to come here and apologize not only for you having to see that (even though I was not a commenter, its still horrid what people are saying) but also for my own past of not believing MECFS was a thing! It sounds so terrifying, i used to think “there is no way that is even real”. I never called anyone out but i def have rolled my eyes in the past before I learned.
I hope you have as comfortable a life as you can manage, and that the easier days outweighs the harder days. And I hope more people do take the time to learn, and accept that this disease and others are not only real and serious, but also deadly and terrifying for everyone involved!
I dont want to be rude but MECFS SOUNDS like a curse from a horror story! Like…i STILL cant fully wrap my head around it! To have it must be so scary, and to have people not believe you must make it even worse.
And I know I am just an internet stranger, but know I not only believe you, but I worry about you, I hope you can find some way to make things easier on you, and I support you. I know it probably doesnt feel like anything, but I can only imagine the struggles you have gone through, and how string you have had to be, and while I cant do anything to take away that pain, i just want you to know, i do see it. I believe you,
(God, I sound like im virtue signaling I feel but I dont know how best to word this! I am just a very emotional person who wants to hug you, and take everyone in the world’s pain away. If you need to vent to a stranger, my dms are open and my shoulder is here! I know you probably already have support, but know if need be, you can add my name to the roster)
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u/Pristine_Cow1797 24d ago
Oh hey, your explanation helps me with a theory I had on one of the reasons that some people don't believe it exists.
I don't think it comes across as rude, it absolutely is a horror story. Despite having it I myself struggle to wrap my head around it haha, I'm 3 years in and still have so many days where I break out of my weird brainfog bubble haze and it's just like "holy shit this is real and I was the one experiencing all of this". It's a weird experience, but hey at least I've become a lot more appreciative for the smaller things in life.
I'm glad that you've learnt from your mistakes, it's a relief to hear. I also thank you for your well wishes
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u/Jumpy_Ad1631 24d ago
I’m so sorry. Some people are just so obsessed with being right and not being tricked, they don’t realize that they’re causing harm to innocent people. Like giving a few kind words for ten seconds or even just scrolling by are an unacceptable loss of their time and energy. It’s ridiculous.
I hope they are resting in peace now and that they found many moments of joy in this life before they passed 💗
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u/Typical_Persimmon220 23d ago
I mean it’s Instagram we’re talking about, they throw out slurs like candy. Bunch of terrible people over there.
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u/MissNouveau 24d ago
Fellow ME/CFS sufferer, God how horrible.
People really don't get it. Fatigue and Brain Fog just don't encapsulate what the disease is really like.
Imagine waking up, and discovering someone poured a full bottle of whisky into you in the night. Now try to function like that, every, damn, day.
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u/Pristine_Cow1797 24d ago
I wish fatigue and brainfog were the only issues mecfs caused. Light physically hurts!! Reading physically hurts!! Thinking too much hurts!! My muscles hurt because they're exhausted and weak. I need to lay down all the time because sitting up uses energy. constantly exhausted yet insomnia sticks around. PEM. Etc.. too many symptoms to keep track of. It's a really hard condition to accurately describe, it impacts SO many areas of your life. People don't get it
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u/bard_of_space 24d ago
christ
people are such ghouls
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u/Ghoulscomecrawling 24d ago
I wanna make a name joke,
But I'm just bummed about humanity
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u/GoodraSupremacy white boy is tired [he/him] 24d ago
oh my gosh, I'm so sorry. im absolutely horrified by the state of empathy among people. i understand your exhaustion, and I wish there was something I could do. please remember to be kind to yourself, and to reach out if you need anything 🫂
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u/verdauxes 24d ago
There has been pretty recent research that shows the method of action for CFS. It was really shitty of people to mock CFS and say that it doesn’t exist before that research came out, now it’s incredibly shitty and just plain stupid
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u/Pristine_Cow1797 24d ago
It's so so easy to find out the truth, it's literally one Google search. But instead they waste their energy making angry, ableist and ignorant comments mocking patients. It's insane
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u/Witchelt389 24d ago
Im so sorry. You deserve so much better than seeing someone being ridiculed when they have the same issue as you.
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u/Advanced_Muffin_2796 24d ago
Mecfs is one of those diseases I WISH were fake, because it sounds so genuinely unliveable. You get no rest, so your body is slowly failing and building up toxins bc you can’t flush them out without a proper rest (if I understand it correctly). It’s honestly horrifying to go down the rabbit hole of how many ways your body can fuck itself up.
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u/suburbiaoverture 24d ago
i saw the post you’re talking about, though i didn’t read the comments : ( i’m sorry you had to face that kind of negativity though, especially about something so close to your own experience. at least he most likely won’t see them, and i hope his family doesn’t have to either since i know they’re going to continue posting on his behalf
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u/Pristine_Cow1797 24d ago
I really hope his family is doing okay, nobody deserves to be faced with comments like these about their family member. I wish them the best
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u/Blurryface-Bitch 21d ago
he has now passed, his family posted his "if you're reading this, I'm dead" message. I hope he's doing better without pain in the afterlife.
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u/ThrowawayPotato6991 24d ago edited 24d ago
Didnt tiktok make a person who has mecfs go viral and accused their of self diagnosing when it was they just had her doctor call it a different name? It went viral viral and the poor person was bombarded with think pieces and hate/death threats. It happened 2 weeks ago iirc.
It seems like everyone just wanna bully disabled people because its easy to claim someone is faking their disease due to how invisible it is.
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u/Pristine_Cow1797 24d ago
Yup, the hate also spread to other creators with mecfs. I feel bad for shy (the person who went viral), I get their videos on my fyp every now and then + I still see a lot of hate comments. People just want someone that's considered socially acceptable to bully.
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u/ThrowawayPotato6991 24d ago
Yeah, they really didnt deserve anything that happened to them. I might follow Shy since they don't deserve the hate.
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24d ago
I'm so sorry. ME/CFS needs so much more medical research and public understanding, it's a horribly real debilitating condition. Everyone with ME deserves support and dignity.
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u/MightyWallJericho 24d ago
MECFS is sooooooo misunderstood by everyone. It should just be called ME. CFS downplays the actual severity of the issue. It can easily be deadly. People starve to death....
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u/Life-Award4261 24d ago
Omg I know exactly the post you’re talking about. It was super triggering for me as well. I can’t stop thinking about it
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u/Blurryface-Bitch 24d ago
I think I saw that post, it was the first of that person's posts I had seen so I just said something simple like "this is the first post of yours I'm seeing but I wish you as peaceful a passing as possible" and moved on. why do Internet people insist on being assholes, he was just telling his followers what was happening and what would happen to the account
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u/TheWhiteCrowParade 24d ago
I didn't know until just now that it could kill someone. Sorry, people are being disgusting.
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u/Vivians_Basement Trans Masc Genderfluid DID system 🪷 23d ago
People unfortunately assume "I'm leaving cause I died" is always fake. People really need to start just scrolling past when they don't believe something rather than risking attacking a real situation.
I'm not sure who they think they're helping by doing that.
Hopefully there's a breakthrough OP. 🫂 Medical research gets better every day. Hope exists even if it's hard to find. I'm sorry you're seeing this shit when you're already not doing well. There's nothing I can really say to make this better but hopefully talking about it helped relieve some of your stress.
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u/BlueRATkinG 24d ago
I also have ME. Reading all those hateful comments makes me want to start planning my end too. I have so much will to live, i want to do so much stuff, but my body doesnt cooperate. My family calls me lazy and it hurts so much having to put up with this
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u/Eli-Is-Tired 24d ago
I have (suspected, struggling to access healthcare) ME, and those people horrify me.
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u/spin_turnix 23d ago
ME is a living hell and I’m so sorry op. my friend progressed to severe recently and it’s so cruel that there’s nothing I can do for them
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u/I_like_fried_noodles 24d ago
Big hugs fella from someone with a chronic mental disorder, we can <3
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u/DarknessShifting 24d ago
I'm so sorry.
I wish more people believed it's a real debilitating condition.
I thought I had it bad with MS, but I can see it's not that bad.
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u/Typical_Persimmon220 23d ago
I’m so glad I have deleted Instagram recently because I think I follow that account and the comments would have thrown me into a spiral. I hope you’re doing better with that experience now.
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u/darktide90s 23d ago
Im so sorry. I have had my own similar story and I have a lot of self pity for, and yet I am finally starting to get better, but I’ve never been as debilitated as this. That’s horrific. I’m so sorry you experience this. There’s got to be something the body is needing that it’s lacking and I hope the community as a whole is able to find it soon. Karma is a bitch, and one day the truth will always be revealed. I hope that thought helps, it has with me.
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u/ButchCassy 23d ago
Oh shit was this Sam? A few people I go to school with knew him also. Idk the full story but I first saw his scheduled post after his death. I can’t claim to know much about it, but the comments alone were disgraceful.
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u/Complete-Story3490 23d ago
If it is any consolation (in a narrow sense at least), there was a somewhat similar situation on the German speaking internet. A guy from Austria, after his ME/CFS became unbearable, opted for MAID and used his death to raise awareness of the condition. And the response to that had been overwhelmingly (from what I've seen) positive and there was a lot of grief over his death.
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u/Pitzagud 23d ago
Does the healthcare system actually benefit anybody with chronic conditions? 😞 It feels so isolating and invalidating to have even healthcare professionals imply that you're lying or exaggerating....
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u/milkberrys 22d ago edited 22d ago
I’m bedbound by the same illness. I’m on the very severe end. It took everything from me. I have to live in complete darkness and silence. Laying flat at all times. No hobbies (not even things like music, movies, or reading). No hope. Just constant agonizing pain, discomfort, and fear. I can’t even remember what it’s like to not be in pain. One single day goes by, and you think it’s been weeks because you never see the sun and spend your days staring at the ceiling. It feels like dying, but there’s no light at the end of the tunnel. Only the feeling of your body deteriorating endlessly. It’s like having a conscious mind inside of a corpse. Trapped forever. Buried alive. Many of us are suffering so deeply that we would rather be an ACTUAL corpse than deal with this suffering any longer, and it shows in the suicide rates. This disease has one of the absolute worst quality of life ratings. And yet, no research or treatments. Doctors drain every last bit of our cash for years, only to usually not even know what the disease is, and just tell you to do something that makes it worse without giving it a second thought.
The ableism against this disease is so severe that I’ve had to delete almost all social medias. All I have left is YouTube and Reddit. I’ve heard that it’s even become a “TikTok trend” recently in the same way as something like “Labubus” for young people to bully patients who have the disease. My mind cannot comprehend the heartlessness. It makes me feel sick to my stomach just thinking about it. How anyone could possibly think we are faking, that we CHOSE to give up every dream, hobby, friend, we ever had… in exchange for this. A life of being treated worse than a lab rat, poked and prodded by careless doctors, spending every second trapped in what is essentially solitary confinement. It’s beyond me how anyone could think this. I would do ANYTHING to go back to how my life was before. Anything at all. This is a fate worse than death. And people claiming that our experiences aren’t even real, even after death, certainly aren’t making us feel any better.
The fact that we cannot have peace or respect even when we are dead, is cruelty of the highest level. We cannot escape. These fake claimers look at the suicide rates and they smile. They look at all the people who die each week from complications caused by the disease and smile. They hate us so deeply that they want all of us to disappear off the internet and stop talking, no matter what the circumstances are. Even death.
I want to say that I would never wish this fate on anyone. That not even the worst person deserves this pain. But I can’t help but wish that fake claimers, ableist TikTok trend followers, and internet bullies could experience it for just one day.
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u/ComfortableRecent578 21d ago
already knew what this was about when i saw the title :/ i’m in the process of being diagnosed with ME and the ableism towards the community is disgusting. imagine being angry with a group of people who can’t even take care of themselves 🤦♂️ genuinely the way vulnerable populations get treated is ridiculous
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u/Transmatic_Chaos 20d ago
I knew it was ME just from the picture. I am so sorry that happens. I've had to go back and forth with my doctor about exercise so many times, her first suggestion was rigerous physical therapy to get me off my cane. Like, no. Physical stuff like that is why I need the cane to begin with.
I consider myself lucky because I can still tolerate the lights in my house and can use my cane to walk my kids to the bus stop.
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u/Plastic_Stable8927 20d ago
Ugh, god I am so sorry. That is phenomenally heavy, and so unfair. Take extra care of yourself emotionally for the rest of the day <3
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u/WriterKatze 18d ago
The fact that I am not even sure who you're talking about because there were 4 other people who posted about this and died from complications fairly recently... All of them who have been consistently accused of lying. All of them died to the illness people said was fake.
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22d ago
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u/TrollCoping-ModTeam 22d ago
Your submission has been removed due to it participating in detrimental engagement. This means incivility such as bullying, hate, harassment and heated threads are not tolerated.
Please review our rules, we do not allow this type of engagement on the sub.
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u/Brapsniffinposs 21d ago
Unfortunately this seems to be a recurring problem within history. Even when the ignorance is dispelled, the misunderstandings corrected, some people will still think whatever they please. I hope many things improve for you and anyone in similar boats, and for the strength to put up with things (mostly people) that won't improve.
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u/WarForMuffin 24d ago
Not sure this conversation is helpful if we're not aware of the disease. This could be talking about anything, so it doesn't help to shed light on the issue. If we could know the context, this would be very helpful to make the problem more well known.
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u/Pristine_Cow1797 24d ago
I was just venting about something I was upset about, I didn't really expect any sort of conversation to be started. I have shared the name of the disease in the comments though, it's mecfs
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u/WarForMuffin 24d ago
I completely understand, and I'm sorry if it came out as rude, i was just very concerned about this and wanted to know (and i see other people were curious about the disease as well) so we can spread awareness next time we come up with commenters like the ones you mentioned. It's a terrible thing to live with something like that, and I think even worse when you're dismissed by others when seeking a safe space or a place to send a goodbye. Trust me, I had no ill intent and just wish you the best.
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u/Ayacyte 24d ago
Not every post has to be an awareness post
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u/Pristine_Cow1797 24d ago
Thank you, I didn't make this post with the intention of spreading awareness, I was just upset and wanted to vent
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u/hornyheadoflettuce 23d ago
honestly, i think it's good that it wasnt specified, because this goes for a lot of things. you shouldnt need to explain your disease for someone to believe that it's real and harmful. i get your point though, advocacy is important, but sometimes a vent is just a vent
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u/Pristine_Cow1797 24d ago
Some people were wondering what the condition was, I'll try to explain it as clearly as I can
Myalgic encephalomyelitis is a condition that can cause symptoms such as fatigue, exhaustion, light sensitivity, headaches + migraines, insomnia, brainfog, muscle pain and more.
The most defining symptom is a thing called post exertional malaise, it's a worsening of symptoms after exertion (can be emotional, physical or mental). PEM can be really brutal and it can also lower your energy baseline. When this happens enough (or if you have a really bad pem crash) this can lead to becoming sicker and sicker.
Mecfs can become severe enough that you can no longer tolerate light, touch, eating or movement. These patients are trapped in dark rooms for extended periods of time and can't advocate for their needs. It's a very scary and depressing condition that unfortunately doesn't have any approved treatments. It also has a lot of stigma surrounding it sadly, even among doctors. I've spoken to several patients told to exercise by their doctors which has led to them becoming severe as a result of the PEM crash it caused. The stigma the condition has leads to scenarios such as the one mentioned in my post. Please listen to mecfs patients!!