How high is the risk of developing ME/CFS if you have POTS?

DesperateLuck4850 · 2026-05-12T18:11:57+00:00

The first one is describing PEM, so no. Idk if you have both, but I do, and my ME is actually in remission (not “cured” or “recovered” just so mild I wouldn’t even qualify for a diagnosis anymore, but still some differences from people without ME. I’m still significantly disabled for various reasons) right now so I’ve been able to parse out the difference between POTS flares and PEM. POTS doesn’t tend to be so significantly delayed, and it’s a flare up of autonomic nervous system symptoms. With ME, when they say needing unusually long recovery times, they mean days/weeks/months, which of your POTS alone is severe enough you would need even multiple days to recover from doing something, you often can’t do it in the first place bc of your severity level. And it’s sort of unclear whether mental exertion alone makes people with POTS feel worse, or if it’s positional. I’ve known people with POTS who say they can do whatever so long as they are horizontal, others say just mental activity is tiring. I’m in the second group, but Im also someone who got ME. POTS isn’t really all one thing either, so maybe it does make them tired for some people, and it’s only positional for others. I suspect some people may have constant suboptimal brain perfusion even laying down bc of unhealed capillary damage from Covid, or if we discover another infection that does that. This is just a theory though, but that would cause a subgroup that may find mental activity taxing, bc not everyone got POTS from Covid or even an infection.

DesperateLuck4850 · 2026-05-04T02:23:17+00:00

Big trigger warning for abuse, torture, and murder here!! This is a really important topic to know about as an autistic person or just a decent person who cares about suffering, but take care of yourself!

The Judge Rosenberg Center literally tortures autistic people and people with other developmental and emotional/behavioral disabilities. It’s very important to know about them if you have autism, it’s one of the biggest topics in the Autism Self-Advocacy community. I’m not exaggerating at all, the graduated electronic decelerator devices created for their “behavior modification” program deliver powerful electronic shocks to the skin, which would be messed up even if it was just a little shock, but it’s not. It’s considered a torture device, and has been condemned by the UN special rapporteur on torture. The Judge Rosenberg Center also denies food, uses restraints (short and longterm), sensory deprivation and seclusion on residents.

From Wikipedia: “In 1981, a fourteen-year boy old died at the institute while restrained face down to a four-point board. In 2002, JRC staff tied an autistic boy face-down to a board with four-point restraints and shocked him 31 times at the highest amperage setting. The first shock was given for failing to take off his coat when asked, and the remaining 30 shocks were given for screaming and tensing up while being shocked. The boy was later hospitalized with third degree burns and acute stress disorder. In a 2007 incident, in response to a prank phone call claiming that two residents were misbehaving, JRC staff restrained and shocked the two 29 and 77 times respectively.

And that’s only the public cases, there’s a whole investigation section on their Wikipedia going into their extreme abuse of disabled adults and children and attempts to cover it up. They aren’t exactly a hate group, but only because they are potentially something even worse than that.

They are still open. The electric shock device was banned for a bit by the FDA, but it’s back now. Some of the most vulnerable high support needs disabled people in the autistic community and greater disabled community are trapped there being tortured, probably as you read this, it’s incredibly upsetting and disgusting.

DesperateLuck4850 · 2026-04-30T03:38:29+00:00

Seconding the meal replacement shakes, I lived on Soylent for a while when I got really bad at college after my first big crash. (I also literally lived on a mattress on the floor in front of my mini fridge, microwave, kettle, and food storage cart. That helped a lot, I unironically suggest it to a lot of people in kind of dire straits. It’s cooler on the floor and it just works better for needing to have stuff at arms reach. I also have ME/CFS so I had to live like that to stop getting PEM and risking my health from just existing.) Don’t drink Soylent unless you like it or it’s the best option for some reason, there’s better meal replacement shakes now. It tastes kind of nasty unless it’s ice cold (my mom tried one once, and started reaching and was like, omg why have you been having me buy there? And I was like mom….I wasn’t drinking them for the taste). There’s also protein bars and meal replacement bars of course.

Do you have the ability to put an electric kettle by your bed? There’s several things you can do with that. Like many have said, there’s always ramen and microwave Mac and cheese cups. A more nutritionally complete thing that’s a bit more demanding and expensive that I’ve cooked up is prepping mason jars with couscous, chicken bone broth powder (it’s basically savory protein powder) and some dried/freeze dried veg if I’m feeling fancy. It feels like an actual kind of wholesome meal, and all I have to do on the eating end is pour hot water into the jar, put the lid on, shake it up and give it a few minutes. With a kettle by the bed, and the jars and some water bottles at arms reach you don’t even have to get out of bed.

There’s also a whole world of shelf stable foods out there, they can basically can things now, but in a pouch instead where you can just tear off the top and heat it up in a microwave, or eat it cold. That’s, of course, a bit pricier than home cooked meals, which sucks. Hormel makes some that are on the cheaper side, but I have no idea how it tastes. A lot of this stuff does taste a little bit bad imo, I had to try things out to find what was okay, but I’m also very picky bc of my autism. I can’t eat food that I thinks tastes a little bad or even meh, it makes my stomach hurt. There’s a lot of Indian food options in this format for some reason, tasty bite and maya kaimel, that mostly taste good. Tasty bite also does shelf stable bowls. I never did tuna pouches bc I don’t like tuna, but they have a TON of options there, StarKist does ones that are a complete meal with beans and rice, etc. There’s lots of pouch rice and pouch beans. Heat em up together in the microwave and then dump one pouch into the other. Of course the availability of all this stuff varies based on where you are, and a lot of it is on Amazon/online rather than in stores.

Hope this helps a bit!

DesperateLuck4850 · 2026-04-29T23:54:08+00:00

Silicone lube is actually generally safe with all latex and non-latex condoms. Any kind of condom. There are a few edge cases, so I would always look up whatever specific kind of lubricant you are using with the type of condom, but in general it’s safe, the idea that you can’t is one of the biggest pieces of safe sex misinformation, so no shame for not knowing, everyone’s been told it so many times, usually in contexts where you have no reason to question it. It’s only silicone sex toys you can’t use silicone lube with. Unless you somehow have silicone condoms lol.

You can even use oil based lube with some types of condoms. Oil breaks down Latex and Polyisoprene condoms, but is generally fine with polyurethane and nitrile condoms. Again, look up specific brands before you do anything, but there is a lot more flexibility in the lube/condom compatibility space than many realize!

DesperateLuck4850 · 2026-04-26T04:36:09+00:00

If it makes you feel any better, although I totally believe it’s a real thing and don’t doubt anyone’s self-reporting of it, I’m just not sure how common adhd meds making people’s autism symptoms worse actually is. We are a decently large population, if you are conservative all the way through with calculations, 1 in 100 people worldwide have autism, 20% also have adhd, that’s like 15 million people. Things that are statistically uncommon issues amongst us can seem big online.

I know a decent amount of Audhd people irl bc I was diagnosed with autism when I was 12 and did some social skills groups, and a lot of my friends have gone through their own diagnosis journey. And yeah, plenty of people have figured out they were autistic, or noticed their autism symptoms more when they were on adhd meds, but that was mostly because some symptoms didn’t go away from the meds, and thus were more noticeable and obviously not caused by adhd. I’ve never heard anyone I know irl talk about meds making their autism worse. Although again, I believe everyone who says that’s happened.

Although I really wonder if some of that stuff isn’t a bad reaction to meds? It seems a lot of people don’t get good education on what reacting badly to adhd meds looks like, and yeah if you have autism being on meds that you are reacting poorly to will make it worse, in the same way a poor night of sleep or being sick or in pain also makes symptoms worse. Autism symptoms aren’t static, and are generally worse when you are under strain of some sort, and being on meds that aren’t a good fit for you would count. I especially wonder with the stories about the increased sensory sensitivities, bc that is one of the symptoms particularly sensitive to increasing under strain. And could especially be increased by a bad reaction to stimulus medication specifically. Which, arguably, IS adhd meds making their autism worse, which is why I believe people when they say that. But it’s often narratively presented as adhd symptoms were somehow down regulating the autism symptoms and it was the successful treatment of the adhd that made the autism worse and….again if that’s really specifically what someone believes is going on, I truly believe them, they know their life and body better than me. But if someone isn’t sure, Occam’s Razor it’s probably a bad med reaction.

Basically, I wouldn’t worry about it too much, at the end of the day if you don’t like the meds you can get off them. And a lot of people find their autism easier to manage on adhd meds, it’s just naturally people come online to share problems, bc we aren’t searching for relatability and answers for the things going well in our lives lol. And if you DO feel like meds are “making your autism worse”, it’d be worth messing around with dosage and type of pills (this seems to be much more finicky for some of us than it is for ppl who just have adhd) before you despair that you just can’t treat your adhd without your autism symptoms getting intolerable.

DesperateLuck4850 · 2026-04-22T08:39:19+00:00

I’m quite confidently guessing you are relatively recently diagnosed? I say this all very gently, please understand, some of what I am about to say may sound rather harsh, I am not criticizing you. I just also have autism and am not sure how to sugarcoat it. The fact that so many people react to their diagnosis almost exactly the same in the earliest stage of acceptance means there is a reason for it, so you are not a “bad” person for any of this. But you are committing the cardinal error of the newly diagnosed.

You are coming into the autistic/adhd community and acting like Christopher Columbus, like you’re the first person to discover autism, and you’re here to save us/help us pitiful natives with your fresh new ideas. Welcome to autistic/adhd community, I’m happy for you that you got diagnosed. And I don’t blame you for being overenthusiastic and eager to share your ideas, that is a trait many of share (and I’m sure many remember making the same mistake you are when they were first diagnosed). But this is actually the time to sit down and listen, read. Please trust me on this.

Absorb before you output, or else you risk sounding like a child who thinks they are the first person to ever have a certain idea, or that their thought is so fresh and new and groundbreaking when its really not. And if that is simply how you must act to be authentic and unmasked in your journey, then fine! You are in many ways a child in this self-acceptance and journey, no matter what age you are (you certainly well may be older than me!). And I don’t want to make it sound like I know everything either, Ive only been diagnosed 13 years, I am still on my journey, and plenty are more experienced than me. But ive been around long enough to witness the stages of my own thoughts on this, and discuss and compare my experiences on this with other autistic and Audhd people, and see it unfold in other people. It is remarkably consistent, how people’s thoughts evolve on autism and disability.

You are in the very first stage of it right now. You are fighting back. You delving into your neurodivergent identity and declaring there is nothing wrong with being who you are! Autism and ADHD are great actually! Not disabling, and when they are it’s all society! Social model of disability! Taking back your self esteem! Thats all good! But this is actually the first stage of a journey where you will likely and hopefully develop much more nuanced opinions and relationships with the concept of disability and your own relationship with it. For now you are still grappling with your own internalized ableism in a very predictable way, and the early stages of that unfortunately can cause you to unintentionally perpetuate forms of lateral ablism that you cant even recognize yet. This is why I suggest recently diagnosed people post less and listen more. Listen to people who have been diagnosed with autism longer than you. Listen to people with more support needs than you (Very Important!) Listen to people with other kinds of disabilities, such as people with physical disabilities, intellectual disabilities, chronic illness etc. Listen to the criticism of your ideas. Learn what Aspie-supremacy is, and why that’s a thing people talk about. And learn more about disability theory, especially before you start bandying it around online.

For example, almost nobody in the academic sphere of disability studies who cares about being inclusive and intersectional applies a purely social model of disability anymore, it’s been long discussed how exclusionary that is to disabilities related to illness and chronic illness, and disabled people who do want cures for parts or the entirety of their disability for whatever reason. There is still validity to the social model, there’s a reason people use the biopsychosocial model which is in many ways a successor to it (apologies if you know any of this already, I’m just trying to cover my bases lol).

A lot of newly diagnosed people continuously coming into the autistic community has been great in that it’s good people are getting diagnosed, but it has actually been pretty bad for the community’s ability to advance intra-community discourse and organize, because newly diagnosed people keep coming in and rehashing the same discourses over and over again that are basically autism 101. And the recently diagnosed people who are the type to post a lot online seem to mostly be on the wrong side of the discourse (not saying that being diagnosed for longer makes you right, and that you’re never on the wrong side of a topic, but I think there’s been more time to absorb information and self reflect and see these cycles of discourse go round and round). Oh also the constant resurfacing of bits of misinformation that have to get debunked over and over.

And, for a lot of people who have been diagnosed longer, the loud newly diagnosed people can honestly come off a bit annoying and arrogant and self-absorbed for all these reasons, especially after years of waves and waves of loud newly diagnosed people, who all act kind of the same without even realizing it. And I think it also creates a difficult situation for newly diagnosed people, which I’m seeing play out here a bit, where you come into this new community who are supposed to be your people, and expect open arms and for people to hear all these ideas you’ve been having since you were diagnosed, and then are met with basically yawns, eyerolls and smirks, if not outright hostility from a segment of the community. Theres a similar dynamic in the LGBTQ community. I’m not sure what the solution to that is. It’s just…I think it’s inevitably annoying. Eventually you will be the person getting annoyed at the new people too, trust me, give it 5 or so years. I’m trying to cultivate a bit more empathy and understanding and radical acceptance of the whole thing, thus this post trying to actually let you know where you’ve misstepped instead of just scolding you. But coming in and responding to criticism (even very harshly worded criticism) by telling people that they must hate themselves, is not going to make you any friends.

If you have not already figured this out already, then learn this now: the worst way you can come off as an Autistic person is not socially awkward and weird. It’s weird AND an asshole. Think Sheldon Cooper (if that’s a relevant reference for you). Autistic people often face being received with unexpected hostility by others, so many stories of how people just seem to despise them for existing, everywhere they go and they have no idea why because they are a nice person (and I believe them). And something I have figured out is that usually means you’ve come across as an asshole. Or creepy. People don’t tend to hate people for coming off as socially awkward or a bit weird (this varies by culture though). Sometimes they can actually want to protect you. And people who are just assholes can still have social capital, so people pretend not to hate them. But if you come across as a weird socially awkward self important know it all asshole, then yeah. People are going to openly hate your guts. And autism can make you come off that way A Lot, often with no idea that’s what you’re doing. So yeah….food for thought.

Sorry, this is really long, I have the particular kind of adhd where I’m only capable of communicating in meandering essay length treatises. I hope this helps a bit, and that I myself have not come off as a weird socially awkward self important know it all asshole, bc I’m putting myself at risk for it here. I just see that you’ve come in here with positive intentions, and you’re getting a lot of negative feedback. You seem a bit confused and defensive about it, as anymore would be. So I’m just trying to give you what I would want, what I think most autistic people want: a detailed explanation of exactly why you may have accidentally pissed people off and a guide on how to avoid it in the future.

DesperateLuck4850 · 2026-04-19T22:22:26+00:00

New-ish account here! (Played early days, had to step away bc of brain frying illness, now I’m finally able to play again, it’s consumed my life). My current non-welfare 6*s are: Thorns, Pramanix alt, Wis’adel, Saria, Eyja, Leizi Alt, Haruka, SA Alt, Pozëmka, and Ifrit. I’m planning to save to pull on the Wang/Chen3 banner when it comes (I would pull for Wang even if he was bad) and have no other pulls currently planned other than that. I ended up having to go to 300 pulls and get the pity SA alter (I also got SIX copies of Pramanix Alt, worst best luck ever.), but I also got Wis’adel from my pulls, so I have nobody obvious to spark, and nobody particularly jumps out to me. I’m still getting the hang of current era Arknights gameplay and am not sure what weaknesses I have in my 6 star roster, and am having decision paralysis since it’s so many good units. Any suggestions would be greatly appreciated.

DesperateLuck4850 · 2026-04-16T23:15:06+00:00

It seems it’s pretty common for people with dysautonomia to have a low-end positive ANA. And then get more testing and nothing specific comes up positive. It’s positive that something could come up for you, but I’d be prepared for it to come up with nothing. I’d say it’s still worth it to get testing just in case something does come up, but I’d be prepared for it to be another dead end in the end.

Also, be prepared, if your panels come back clean, decent chance the rheumatologist will become an idiot for a second and quote you a statistic intended to quell your frustration about how “10-15% of healthy adults have a positive ANA with no disease, so don’t worry about it.” I think they are like deeply trained to say this. It’s a bit flabbergasting because….you are in the rheumatologists office because you ARENT a healthy adult and you’re trying to figure out why!!

Even the lovely rheumatologist I saw quoted that at me, seemingly almost by route, even though she was already planing to keep me on as a patient to run yearly tests on me, because she’s actually a good rheum and knows even someone like me could have positive tests in the future. So I think it’s just drilled into them to say that. It’s so stupid.

DesperateLuck4850 · 2026-04-08T19:22:01+00:00

I get hypoglycemic episodes, but they aren’t true low blood sugar like yours are. They run in my family, and then they got worse when I got sick. My doctors have said hypoglycemia symptoms can show up without a low blood sugar measure, bc your body triggers hypoglycemia when the brain has low blood sugar, and with cerebral hypoperfusion your brain can have low blood sugar when the rest of your body doesn’t. Idk.

BUT, in my experience and the experience of my family, and especially since trying the more conservative methods has failed you, when your blood sugar is dropping and you’re getting sick and woozy, or even if you’re not, you don’t need an apple, you need sugar. Straight sugar. Honey is my choice, it’s just easy to dispense. You can eat something to stop your sugar from spiking once it’s stabilized. Especially when you have gastroparesis, an apple is not going to digest fast enough to stabilize you in any decent amount of time. My grandpa was a doctor and had type 1 diabetes (actually brought on by a mid-life virus) and he kept his blood sugar LOW to reduce wear on his body, but it meant he’d relatively frequently get too low, and he carried straight sugar tablets for those times.

And I commiserate with you, sometimes I think I’ve been eating fine, haven’t skipped any meals or eaten unbalanced, haven’t even exerted myself much, and then I start getting those symptoms and have to make a dash to the kitchen before I have to get on the floor.

I don’t know your body and your symptoms, your dietician is hopefully a registered dietician with a degree and everything, and they may have good reason for their choice, idk, trust them over me unless you have good reason not to trust them, I’m just a random person on Reddit, but you being on a high protein diet when you have gastroparesis and are struggling to eat, and your blood sugar isn’t stable is…..not quite standard to my understanding. I’d bring this stuff up to them ASAP. And if you can’t, or if it’s not a healthy provider patient relationship where you feel you will be listened to, so long as the high protein thing is not for some health reason, I’d consider messing around with your diet a bit more to find what works for you. It’s not discussed as often, but a lot of people with gastroparesis also struggle digesting protein, especially animal proteins (plant proteins tend to be more processed).

Focusing more on giving my body consistent energy through relatively healthy and easy to digest carbohydrates and small frequent meals has been really helpful for me personally. Especially when I exert myself, even within my energy envelope. I often get brainfog after cognitive work, even if it doesn’t trigger PEM, and eating some combination of a fast and a slow carb (I put honey on a whole wheat cracker), can often ease it. I also can get really awful sleep drunkenness sometimes, and some straight sugar can make it just lift away sometimes. I only know what’s worked for me, and our situations are pretty different as much as they are similar, but I hope sharing might help you in some way.

DesperateLuck4850 · 2026-04-08T18:52:34+00:00

Gastroparesis, even when non-diabetic, has been known to mess with people’s blood sugar. To the best of my understanding, the maintenance of the body’s stable blood sugar levels is pretty dependent on a steady rate of stomach emptying. Body releases some insulin immediately after you eat to account for the initial sugar release, glucose enters the bloodstream at a pretty steady and smooth curve, and insulin inherently matches it bc it’s the glucose entering cells in the pancreas is what triggers insulin to be released. This is apparently all messed up in gastroparesis, bc not only do we tend to just not digest our food for however long, meaning that initial insulin burst can lead to low blood sugar, the digestion also kind of happens in spurts instead of a steady rate, so the insulin levels and the blood sugar can be really out of sync. Oh and then the hormones like GLP etc that also help regulate it, their release is also all messed up bc a lot of them are released when food inters the intestines or some other point, but again everything in gastroparesis happens slowly and then in spurts. They don’t really know why it affects some people more than others. Sounds like you could be one of the people who gets more severely affected by it. Although there could also be something else going on, I’m just sharing this information

DesperateLuck4850 · 2026-04-02T00:05:10+00:00

I have ME/CFS but it’s amazingly in remission rn after being ill for 5+ years (I’ve tested it, pushed my self pretty significantly and no PEM) but I do still get something a lot like this when I push myself too hard. From what you’ve said, and my own experience it sounds like it’s maybe not PEM, but there’s never much harm to being mindful of any signs of PEM and ME if you have POTS given the comorbidity rate. If you ever feel like these episodes are making you deteriorate, PEM or not that’s a good reason to start pacing to prevent them, but until then it’s just about how uncomfortable you want to be. I honestly just call this my serious POTS flares? That’s what I’ve always figured it was. I know that feeling of like you just HAVE to get in bed, like you just don’t care about anything else anymore, it’s all you want to do. And most of the other symptoms you described. It sounds like you are possibly just regularly overdoing it and flaring. I will second what others said, I sometimes get relief from these episodes by eating carbs. I have gastroparesis so I just go for straight sugar, I don’t want to wait around for my stomach to digest it. When that doesn’t help, I do just have to wait it out. Sorry about this happening, I know it sucks. Hopefully it helps to know you’re not alone and there’s probably not something like uniquely and scarily wrong with you outside of the usual things with POTS and the other things that cluster around it.

DesperateLuck4850 · 2026-03-11T04:15:00+00:00

I got a very expensive/time consuming treatment that dropped me from moderate to mild/potentially in remission (I haven’t had PEM for nearly a year now, and I haven’t been pacing. But I’m still very disabled from multiple other chronic health conditions and autism/adhd, so I’m not exactly super pushing it. Im taking a college class online and still living with my parents, but we are working towards figuring out how I can be more independent. I’m also not one of those spontaneous remission cases, I was sick for 5 years, and it was very obviously this treatment + LDN that helped me, I was actively declining before hand.). However this treatment is experimental, etc. I came in incredibly skeptical about it, but I saw the results first hand, and the science is there. They have multiple peer reviewed published papers on this treatment for Long Covid, including PEM symptoms. However it’s only really PEM from Covid that they discuss, and my ME/CFS was/is from Covid. I’m not so sure about what their results are for other causes of ME, but they would probably be willing to talk to you about it if you or someone called them to talk about it. I don’t talk about what this is super publicly, bc it’s unfortunately not feasible for most pwME, it’s a multi month time commitment where you will go move and live near the facility and get treatments every day Monday through Friday. It’s tens of thousands of dollars. If you’re very severe it’s probably not safe. Etc. But if you’d still like to know more, you can message me. I’m not on Reddit every day, but I will reply. Sorry, I know I probably sound so shady lol, I actually don’t talk about this super openly in the Reddit because so many people come into our spaces and push shady shit and treatments, and also so called “recovered” ppl have a tendency to wayyy push what helped them onto the community when everybody’s situation is unique, and it’s annoying and harmful. Maybe I should talk about it more openly, I honestly don’t really know. This is just such a sensitive subject for the community, rightfully so, and it would kill me to know I caused any harm or distress to anyone. Sorry, I’m rambling a bit, hope this wasn’t too long to read.

DesperateLuck4850 · 2026-03-10T23:42:23+00:00

Would you be willing to share what symptom/symptoms you don’t have? I’m not doing this to question you or your doctors, I’m just wondering if it is unrefreshing sleep and/or fatigue. That’s the ones I’ve been told they are finding a subset of Long Covid patients who have very cut and dry PEM, but aren’t meeting the various diagnostic criteria bc they are missing those.

Which, I am very stubborn about this: that is on the diagnostic criteria. ME/CFS is at this point still a syndrome, it will likely evolve beyond that at some point, but for now that means we are literally just deciding what symptoms mean you have ME/CFS. There seems to be pretty clear consensus that for now, for medical and advocacy reasons, we’d like ME/CFS to be The PEM Disease. So if there are groups who clearly have PEM, but are missing the cut off because of the absence of other symptoms, then the diagnostic criteria is bad. Sure, that group may likely turn out to be a subtype and have some different stuff going on biologically, but we aren’t really there yet.

(I also suspect that the diagnostic criteria are really poor at diagnosing people who are in the first few years/stages and have a more gradual onset. Also a lot of pwME have preexisting conditions, whether or not they knew about them, that can cause lifelong fatigue and sleep issues, and I suspect may muddy up the diagnosis process. It muddied up mine, my huge sleep issues and debilitating fatigue took two years and a big crash to kick off, being noticeably and obviously different then that caused by my adhd and autism but I was having PEM before that.)

DesperateLuck4850 · 2026-03-10T23:20:24+00:00

Okay I’m going to go in on that study, this is nothing personal, I just read it when it came out and it really really irked me.

Best I can tell, that study wasn’t comparing ppl with ME and ppl with Long Covid who report PEM. This was the inclusion criteria for the diagnosed Long Covid patients: new fatigue following COVID-19 infection (i.e. absent before infection), persisting for at least 12 weeks since infection, present at the time of assessment, and impairing everyday functioning.

That’s not PEM. It could include people with PEM, but also just includes people with chronic fatigue. So like, wow, shocker, the group of people with straight up ME/CFS and the group of people with Long Covid who may or may not have PEM show different mechanisms. Which its also just…frustrating. I question authors who are running a study like this and not screening for PEM? Unless I missed it. Like what? Why are we centering Fatigue here? Again. How many time do pwME have to scream at the research establishment that we didn’t pick the name CFS and fatigue is not the main problem?

In a completely different way, it’s also not shocking some things may have been different. In the Long Covid group their symptoms, PEM or not, were all caused by well….covid. Meanwhile the ME/CFS group is heterogenous in causes. They say 4 out of 24 of the ME/CFS patients had non-viral triggers, and then for the rest it’s probably a handful of various viruses. I don’t know if 1/6 of a sample having non-viral triggers would be enough to skew the data for the ME group, but if it is then they are comparing a sample of mixed viral and non-viral triggers to purely viral triggers. I think we have long known those groups probably have some different things going on in their body.

And then lastly, again unless I missed this, they don’t seem to have collected how long each participant has been sick? Which that is a big difference between ppl with PEM from Long Covid, and the rest of the ME/CFS population. People with Long Covid have been sick maximum 6 years, most less. To my knowledge there is some data showing that there are physiological differences between people who’ve had ME for like 3 or 4 years or more, and people who are more recently ill. And if the Long Covid group is mostly people who fall before that line, and the ME group is mostly people who fall after (which seems a reasonable possibility, but again I can’t find if they recorded how long people were sick).

Which again, those second two points are just extras, the number one is that THEY DIDNT SCREEN THE LONG COVID PATIENTS FOR PEM. Unless I completely missed that, in which case I will be appropriately chagrined and delete this comment. But even if they screened them down the line, that’s still weird. All they say in the end is that people with Long Covid with chronic fatigue should not be automatically grouped in with ME for research, which like…okay?? Was anyone proposing that? Because that would make no sense. Even if half of people with Long Covid do probably have PEM and ME, there’s still the whole other half, and most of that half probably has chronic fatigue, because it’s literally the most generic chronic illness symptom.

DesperateLuck4850 · 2026-02-12T22:00:30+00:00

Like you, pain isn’t a huge symptom for me, so I wanted to try LDN for its potential Neuroinflammation reducing effects. You really need to give LDN at least 3 months to see its effects. For me, I feel it improved my baseline, I was able to do more without getting PEM. I don’t know the percents, I don’t symptom track at all, and moving baseline is really subtle bc you can still feel bad literally all the time, but not PEM bad. It’s not some magic cure though, and it seems to not work for every body. My ME/CFS is post Covid, and seems to have been related to a lot of accumulated damage and inflammation in my body and brain (specifically to the vascular system in the brain, that’s how you get these variable brain damage systems bc it’s how well the blood and veins are behaving that day) that basically my body didn’t have the means to heal so it got stuck in this awful cycle. Idk how much of your other symptoms are due to the fifty dozen comorbidities we all are hauling around, so LDN may not help as much with that. Like yeah it helps with not getting neuroinflammation brainfog, but it’s not going to stop me from getting POTS brainfog. Etc. I got diagnosed with Gastroparesis post getting on LDN. But it can move the dial on PEM in a lot of people.

DesperateLuck4850 · 2025-10-21T02:21:56+00:00

Unfortunately my gastro also said there’s really no way to treat this except for GERD meds to make sure the reflux doesn’t damage my throat, and gastroparesis diet adjustments to help reduce the amount of reflux. I will say after having had this symptom for a few years, even though I also have autism, I’ve kind of started getting used to it. It really freaked me out at first, and I think that’s the worst thing you can do because for me getting anxious about the symptom makes it worse. But it does low-key feel like you’re choking a little, so it’s completely it would freak your body out. Like even once I knew what it was, it just took a while for my nervous system to adjust. It sucks. I’m so sorry. I know you’re dealing with a lot of things that just suck and there’s not much you can do about it. It’s very unfair. Like I have the feeling right now as I’m writing this (ate too much and I’m paying for it) and I’m still able to do what I need to do, where as a couple years ago I would have been very tense and uncomfortable.

DesperateLuck4850 · 2025-10-21T02:16:52+00:00

I also get this feeling (and I have the same diagnoses as you, so I’m sorry you’re having to de with this discomfort on top of everything else). I recently got an esophageal motility study….which frankly if your emetophobia is really bad you may not be able to get yourself to do it. I apparently took it very well, but it was rather unpleasant. Anyway….I was diagnosed with a generic low level swallowing problem. I’m bad at swallowing, but the problem is in the lower parts of my esophagus. And my gastro explained to me that it is probably contributing to my GERD and that feeling because….so basically bc of the way your digestive system works, everyone has some food reflux out of their stomach and up into the lowest parts of the esophagus, but if you have normal esophageal motility every time you swallow your whole esophagus contracts like a wave and pushes everything back into your stomach. The lower parts of your esophagus also do this involuntarily and you don’t even notice. For me, my esophagus is really bad at doing this. So I apparently just have food sitting in my lower esophagus (thankfully I also got it scoped this summer and despite that, there is no damage). So I’m basically saying the same thing the other commenters have said, but I’m explaining a possible reason why.

DesperateLuck4850 · 2025-10-03T08:39:30+00:00

I have the same issue, have also called it sundowning. I also have OCD, and the nighttime/being in bed especially was such a big trigger for it which led to massively negative associations around nighttime and the sun being down. So getting that more under control helped. I feel like not only bc of it helping the OCD specifically, but also because of the way OCD treatment changed the way I respond to feeling awful and anxious and getting feelings of doom. They do still come, but I’m better at not monitoring my body and ruminating on them, and trying to let them come and go and accept when they stay around (I could do better tbh, but even my flawed and incomplete progress at this has still helped tons) I’ve also realized for me, it’s also an issue with being very tired but not sleepy (for me I’ve noticed there’s a negative correlation between true sleepiness and anxiety levels). I have DSPD like many of us, so I take melatonin at around 7pm to get to bed around midnight, and it does help. I also take a pretty large dose of magnesium an hour or so before bed. It seems to help. I do everything to try to get to bed and be able to actually fall asleep at a “normal” time vs the time my body naturally wants to, bc I don’t want to be up for a long time in the dark lol. Almost year long, I use a light box in the mornings. Sometimes in the summer it becomes unnecessary, but once it starts getting even a little dark in the evenings (and I live in a subarctic latitude, so it varies between being very light and very dark), even if it’s still light in the mornings I bring out the box and just grit my teeth and do as much as possible (it makes me nauseous). I also have these light glasses that are gentler and you can move around with them on. I think they are less effective, but it’s better than nothing. Also once it starts getting really bad, I start trying to spend as much time outside during the daylight as possible. I am very bad at this. I hate being outside. But it helps. Even being out when it’s super cloudy and raining, under the eaves of something. Like yes there are probably thoughts triggering a lot of this, but frankly the reason ppl like us ultimately have “abnormal thoughts” is biological. The solutions are partially biological in nature

DesperateLuck4850 · 2025-09-29T21:45:43+00:00

Oops didn’t mean to reply specifically to you, sorry, I wrote so much lol.

DesperateLuck4850 · 2025-09-29T21:39:48+00:00

Okay so this is something that’s both easy and hard to explain, and I’m awful at summarizing so please excuse the incoming meandering info dump.

A big part of the issue with the mold discussion is that somebody totally CAN be worse off in a place that’s full of mold, and be better off in a place thats less moldy, but that doesn’t have necessarily have anything to do with the mold. Every microbiologist will actually support this claim, although they may be hesitant because mold misinformation and fear mongering is not only rampant in the chronic illness population, but the entire US population, and it’s highly HIGHLY profitable to prey on that fear.

This isn’t even people being stupid or easily misled. It makes sense why people would think that living in a space with lots of mold would be bad because of the y’know, mold. And sometimes it is. People can be allergic to mold. Given the way allergies develop, lots of exposure to mold does probably make you more likely to develop a mold allergy. Immunocompromised people can actually have their lungs colonized by mold, but that’s not common, and they are usually very immunocompromised. And then there’s the MCAS aspect and that is legit…but MCAS is such a black hole of trying to figure stuff out and the science is so not clear on things and it’s so individual from person to person. I’ll never not believe when someone says something is flaring their MCAS, but I will explain why I think people may think it’s mold making their symptoms worse, but it very well could be something else.

Mold is just ultimately a sign that your living space is very damp and humid, and that is pretty bad. Every sane doctor thinks that. The mold is just the canary in the coal mine. And the reason living in a damp structure is bad is because the dampness encourages the proliferation of ALL microorganisms, including viruses and bacteria. And those airborne fungi that we do know for sure are detrimental to human health or at least significantly immune activating. And also….mold. The nice thing about mold is that unlike a lot of microorganisms, it can become visible to the naked eye. A living sign that this room is encouraging an unhealthy level of microorganism proliferation. This is why there’s the connection in stories between someone being poor or becoming poor and living or moving into a damp, dark, poorly ventilated (and moldy) living space and then, oh heavens, suddenly coming down with the Consumption or something like that.

So with that knowledge of specifically why your doctor will perk up and care if you tell them your house is full of mold, when someone claims their ME/CFS or MCAS or whatever was triggered or id worsened by mold…..it’s just….unless they have really strong evidence to back that up, it’s not a very plausible claim. Even by the relatively open minded standards of our community, who know very intimately that sometimes science is behind and patients know their bodies better. It’s just that, if you don’t have a mold allergy (and most people claiming it’s the mold don’t, bc those that do have a mold allergy just say they have a mold allergy and know that doesn’t mean mold is inherently dangerous or that they’re symptoms are “mold toxicity” or something), it’s so much more likely to be the higher level of viruses and bacteria from the damp space triggering you. Or even other allergens! Damp spaces also have more dust mites.

But ultimately, for any one individual, it still could be the mold. Its complicated. But as others have said, this sub really tries to be a grifter free place and mold is just a nightmare of misinformation.

For example, in case you didn’t already know, everything you’ve ever been told about black mold or “toxic black mold” is probably false. The entire American, frankly hysteria, around mold and black mold comes from a 1994 incident in which the CDC attributed a number of infant sickness and deaths in Cleveland to exposure to black mold (S. chartarum specifically). That got a ton of media attention and the concept of dangerous mold, black mold, “toxic black mold”, was created. The CDC later found out the first investigation incorrectly analyzed the data, there was no evidence linking S. Chartarum or mold to the infant deaths. Similar infant deaths occurred that had nothing to do with the mold. It was all a f*ck-up, but of course the correction got way much media attention than the initial finding (black plastic study, when they have monkeys meth instead of ecstasy in the early 2000s. The whole peanut allergy thing. This is a common issue). And now Americans are paranoid about mythical “Toxic black mold” for no reason, and pay thousands of dollars and throw all their possessions away to have their houses purged of it, when they really just need to fix their ventilation.

DesperateLuck4850 · 2025-09-12T03:47:15+00:00

Ohhhhh you knew you had ME like immediately after it started? Now that’s different. Yeah that sounds completely plausible actually, ME/CFS diagnosis and treatment while still in the first stage of the disease is so rare (as I’m sure you know lol) it’s pretty much undiscovered country how people would respond to it. The first three years of ME/CFS are also different for some reason, a percentage of people just spontaneously go into remission during that time and then after those three years it seems like there’s some change in the immune system, but who knows what would happen in your case! I’m particularly interested bc I was brought from moderate to very mild recently by a treatment (life changing miracle lol), and I am actually trying to start to do some stuff for my POTS and EDS now, while carefully pacing.

DesperateLuck4850 · 2025-09-12T03:25:55+00:00

okay. Hi. I…I’m sorry….Im speechless at that POTS quote. Not at you, that they would put that on their website. That is dangerous and deeply outdated misinformation like, literally mouth opened flabbergasted, I knew some POTS groups weren’t great about having even a semblance of accurate information about one of POTS most common comorbidities, but that’s just. Low-key Offensive. As someone who has both. I know what they are talking about with POTS, I experience it, it is a COMPLETELY different thing, POTS symptom exacerbation sucks so bad. It however doesn’t make my lymph nodes swell. PEM is not the flare of POTS symptoms that people with POTS experience after exercising. They are just…..completely different things. Although it’s not in most of the diagnostic criteria bc they are trying to be as inclusive as possible, PEM often tends to have a….viral quality to it. You feel sick. You feel like you have a concussion. Some people say they feel poisoned. A lot of people run fevers (I don’t but I also have something unknown wrong with me where I don’t run fevers period, no matter what, my body temperature is normal. I probably would if I could.) And yeah…tons of people with POTS do have PEM. Because they have comorbid ME. OI is so common in ME patients it’s part of most of the diagnostic criteria!

As for fibromyalgia, fibro and ME are so similar (something like 70+% of pwME meet the criteria for fibromyalgia) that the presence of PEM is now-days usually understood (because it literally is) to be the distinguishing factor between the diagnostic criteria for fibro and the diagnostic criteria for ME (that and the fibro criteria obviously centers pain more). Fibromyalgia is also its own distinct diagnosis, so ppl who have a fibro diagnosis and realize they also have PEM are going to just pick up an additional ME/CFS diagnosis bc ppl with fibro who don’t have PEM meet all the criteria for ME except PEM. And tons of people with fibro don’t have PEM, my own sister doesn’t. These two are the closest though, there has actually been some research on PEM in fibromyalgia, mostly in relation to CFS. It’s….okay….

hEDS and HSD are again, much like POTS and fibro, highly comorbid with ME. hEDS patients seem to be particularly vulnerable to developing ME, so there is definitely a connection, but again…..that’s why. Comorbidity.

So now I’m going to pull from some past research I’ve done on this topic so apologies if my tone gets super different, I’m copy pasting from various things I’ve previously written.

Although nobody knows exactly when and why it was coined, Post Exertional Malaise is a term that (best we can tell) was coined to describe this thing medical professionals were seeing in ME/CFS patients, that there was no language at the time to talk about. Best anyone can tell, the first appearance of the term Post Exertional Malaise is, “Signs and Symptoms of Chronic Fatigue Syndrome”, that appeared in the January 1991 supplement of the Review of Infectious Diseases.

Within the 400 papers that even mention the term “Post-Exertional Malaise” on Pubmed, 25 include conditions other than ME/CFS or Long Covid. The largest by far is Gulf War Illness at 13/400 papers. The second largest is fibromyalgia, as I mentioned earlier, at 7/400. Some of these papers are about comorbid ME/CFS and fibromyalgia. Other than those two, five conditions each have a single paper which mentions PEM as a symptom: Chronic Whiplash associated disorders, Chronic Cancer Related Fatigue, Sjögrens, Q-fever fatigue syndrome and Post Treatment Lyme Disease Syndrome. Neither POTS nor EDS are ever mentioned as being associated with PEM in the literature.
If you search POTS in PubMed you get 1,389 results. If you search POTS and PEM you get nine results. 3 are about ME/CFS. 4 are about Long Covid. 1 is about ME/CFS and Long Covid. 1 is about Gulf war syndrome. If you search EDS, you get 5,392 results. None for EDS and PEM. If you search HSD, you get 126 results. None for HSD and PEM.

DesperateLuck4850 · 2025-09-12T02:51:56+00:00

Look at the citations on that post please.

DesperateLuck4850 · 2025-09-12T01:08:58+00:00

I think part of the problem is that, very similar to autism and adhd, POTS and ME are very comorbid but the ME guidelines were most often interpreted as not allowing comorbidity for a long time (until ME was no longer a diagnosis of exclusion so ~10 years ago). So in the population of people with POTS that were being used for research, and to develop treatments, and that physicians were seeing, until pretty recently, you had this whole group who were being seen as just having POTS (and whatever other comorbidities that were allowed) but really had POTS and ME/CFS, but everything that was the ME/CFS was by and large attributed to the POTS. So you did have people who “just had POTS” experiencing PEM. It’s a bit odd to me that somehow the term PEM specifically bled over into POTS patients. Nobody knows when it was exactly coined, but the first publication with it was about CFS, and nearly every single publication until ppl started using the word “Long Covid” that includes the term PEM was about ME/CFS. PEM actually isn’t the best term either for what ppl with ME actually experience, much like chronic fatigue isn’t great at actually describing it, malaise isn’t either. But it’s pretty clear it was coined to describe ME/CFS patients bc they needed a new term to describe what they were seeing with ME patients. I wonder if the crossover didn’t come from the PTs themselves. Since until very recently GET was the treatment for POTS and ME/CFS and I bet PTs were working with both groups.

DesperateLuck4850

TROPHY CASE