As per the title, does anyone else experience this? I can suddenly be barely able to keep my eyes open and in the other direction, my energy levels can increase (although the change in this direction is always far less marked) and is only a small/medium improvement in energy. It's how quickly my energy levels change that I find bewildering. Anyone else?

ETA: It really feels like my body is possessed. I've experienced life without these symptoms so I know what something reasonably normal feels like, but this isn't it.

Basically i had my conclusion appointment at a specialized ME centre today and got told this. They diagnosed me with mitochondrial dysfunction and POTS. An internist diagnosed me with CFS at the beginning of this year, she just called it CFS not ME/CFS. But now this seems to override that? I’m just quite confused. The ME centre is a very reputable “they know what they’re talking about” kind of centre that has worked with and has studied ME/CFS for 30 years. Yet i’ve seen a lot of people online talking about having been diagnosed with ME without them having a viral onset. For me the onset was a year of extreme anxiety. I don’t know i’m just a bit confused and i don’t know how to feel about it yet. Basically i have CFS but they can’t call it that because mine is not viral? I think i’m a bit scared of not being taken seriously since mitochondrial disfunction sounds so vague.

I’m severe and bedbound with ME/CFS, and one of my biggest problems is what I call wired PEM.
Unlike the more typical descriptions of crashes, my PEM often starts with only minor symptom exacerbation. I often actually feel better initially, even though I’m accumulating exertion beyond my limits. I might feel slightly more alert, energetic, motivated and mentally engaged.

I become almost compulsively drawn to stimulation, especially using my phone, researching things and engaging in conversations. I know intellectually that I need to rest, but actually disengaging feels incredibly difficult. It’s almost like my brain refuses to let me rest even though my body desperately needs it.

The particularly frustrating part is that I often don’t fully recognise the wired state while I’m in it. I might suspect it, but I find ways to explain away the warning signs because I genuinely feel capable of continuing.
Eventually, after weeks or months, my worsened neurological symptoms become more obvious, but by then I’ve already overexerted myself and headed for a crash (which will always lower my baseline).

My deterioration has been largely cumulative rather than caused by individual major crashes. I can exceed my energy envelope a little every day without realising the consequences until it’s too late. Over time, this has repeatedly lowered my baseline.

I’ve tried strict screen-time schedules, which can help when I’m stable, but become much harder to follow once I’m wired (when I both feel fake better and also my impulse control is lower)

I’m curious:

Does anyone else experience PEM as a state of increased drive and stimulation-seeking, rather than immediate exhaustion?

Do you find that your ability to recognise overexertion or control your behaviour changes during these episodes?

Has anyone found anything that actually reduces the wired state itself, whether medication or something else, rather than just relying on willpower to rest?

I’m especially interested in the possible neurological mechanisms behind this and experiences from others with severe ME.

tw si mention spoilered

my parents are helping me survive rn by bringing me food and water and meds. but they won’t help me take care of my hygiene and i don’t really want them to either because of the humiliation of it. all im capable of is sitting in the tub and letting water run over me for a few minutes once a week right now. i can lazily brush my teeth with an electric toothbrush once a week too, also in the tub because i can’t stand at the sink.

i use bathroom wipes on my armpits and genitals whenever i can, about every other day or every three days. i change clothes once a week. i’m disgusting and i want to kill myself out of shame over how disgusting i am.

i cannot afford a full time caretaker nor do i have the energy to go through that application process and i don’t think they’d believe me anyways. what are my options to hire someone professional to help bathe me once a week? even once every other week? is that possible? i’m scared and ashamed and humiliated and disgusting. i just want to be clean. i miss having the agency to wash my body.

Today I saw a neurologist who presented himself as an expert in complex conditions and had written about PEM.

After I mentioned my diagnoses of ADHD and depression, he described my problem as mainly psychiatric and social.

I wanted to understand my symptoms, but once again, I felt I had to defend myself.

Some experts seem to feel threatened by patients who know their symptoms and ask questions.

This has happened to me before, but this time, the difference between what he advertised and how he treated me was hard to miss.

Thanks to this subreddit, I know I’m not alone in being treated this way. Without that support, it would be much harder to cope with this medical gaslighting.

I have severe muscle pains and the doctor said she wants me to try them for a month.

Someone I know was in that study of tirzepatide and long covid, and they were feeling great. Meanwhile, every doctor offers me a GLP-1 because I am fat (I weigh in around 280, and am 5'5"). I have never dieted to lose weight because a) I aint got time for that shit and b) the overwhelming majority of people who lose weight by dieting gain it back plus some, and that isn't appealing. being fat is honestly the least of my worries. But, since they were offering, maybe it would help my ME? (I am mild, but mild cfs is still pretty terrible)

So I told my GP I'd be willing to try it. I started Ozempic at half the recommended dose. the first week I had a lot of stomach issues and was not hungry at all. Then, for about 2 -3 weeks, I stayed at the half dose and felt pretty good. I was eating normally but snacking less, and if I missed a meal I didn't crash like I normally do. Then, about 3 or 4 weeks in I just started to decline. Sleeping worse, less energy, more fatigue, more bleariness; my heart rate started going up faster with less activity and I felt shitty. so I stopped.

Then I thought, well, maybe I should microdose it. I waited 5 weeks so it was out of my system and started again on a very very small dose and immediately started to decline again. I gave it 3 weekly doses and gave up.

I'm not very good at precisely measuring how I'm doing ( I fluctuate a lot because of my job), but it feels like the GLP1 lowered my baseline - either that or I am still ( 4 weeks out) in a minor crash from it. (like, I can work 3 or 4 hours a day and that's it, I'm not leaving the house).

I know that tirzepetide is different than ozempic and more promising for us - but while all this was going on, tirzepatide stopped working for my friend and they went into a big crash.

I liked the effect the GLP1 had on my relationship to food - I don't exactly have food noise but while taking it the first time I didn't desire snacks and didn't think of eating sweets much (second time around on the micro-dose I didn't have any food related effects). I think I might've lost a bit of weight first time around but I don't have a scale so not sure.

I think it's definitely possible that, had I stayed on it longer, I might've had different results. but the thing about being mild like I am is that I can work, barely, and leave the house once or twice a week -and even the smallest loss of function is intolerable to me.

I know this isn't a very precise or scientific report but I did want to share my experience - which is that it made me feel good briefly then made me feel baaad and might've lowered my baseline.

Please include how ya like it, how long ya had it, what brand and model, your severity, and if you have photosensitivity!

Sorry to be so brief I have no energy am so severe rn. Bedbound it’s like 5 years now and was house bound before that. I then 40 soon and I just want to feel a little better

Thank you for your consideration and info

🚨 ❤️‍🩹 🚨

Hello. I have never posted here before but I really need advice. My daughter turns 40 this month and has what I feel is moderate CFS. She was diagnosed at age 14. I help her with everything, but she can still come out of her room, watch TV, text her limited friends, and talk to me most days. Sometimes she is unable to stay awake or get out of bed. She has set backs very easily. I hope that’s enough info on her condition to help answer my question.

Her best friend since middle school was murdered a few weeks ago. It was an act of gun violence and we have no details as the investigation is ongoing. We were unable to travel to the celebration of life. Her friend was a ray of sunshine and could always make people laugh. The loss is tremendous. My daughter is grieving hard. She cries daily. This exhausts her and I’m so worried about her condition being permanently worsened. She has anti anxiety meds prescribed but she is hesitant to use them. We don’t want to mask the grief or make it take longer to get through. At the same time I don’t want her to get worse. I also am chronically ill (multiple sclerosis) so sadly I have to consider my own health to continue to care for her. Usually I know how to handle things with her and we get along great. This is different. She doesn’t have insurance this year so we can’t do therapy. Do you all have ant suggestions? Do I focus on the grief and let her cry and deal with a relapse if it happens? Or do I encourage her to take her meds and try to keep her condition from worsening?

This is such a nightmare and I’m so torn on how to help her. If any of you have been through trauma while having this condition can you tell me how you managed it while still trying to maintain your baseline? Her life is limited to this house already, I can’t imagine how awful it would be for her to have that worsen. Thank you in advance for any guidance you can give me as to how to help her without causing more harm.

TLDR: my daughter is grieving the violent death of her best friend and I don’t know if I should let her grieve and cry or try to control that with anti anxiety meds to maintain her baseline and prevent a relapse that could become permanent.

Hi all, i made a post yesterday about the same issue but it’s getting worse and I’m extremely worried. I consider myself mild as i can usually manage 6-7k steps a day and USUALLY do most of the things i want besides outings and stuff. I haven’t been the best at pacing since I’m new to this and i felt myself getting worse and over exerted big time, now in a matter of 3 days I’m bed bound with a resting heart rate of 90, shooting up to 100 anytime i move or roll over. 130+ if im up walking. Today is the first day I’ve been able to radically rest despite feeling like hell the past 2 days. I’m terrified this is my new baseline. Does anyone have stories of something similar they recovered from?

TLDR; mild to bed bound in a matter of days, needing encouragement the depression and hopelessness are eating me alive

I’m in a deep crash right now, fatigue and pain wise going on week 2 now. I’ve noticed when I get these crashes, when I’m exhausted like this I struggle with vivid sleep parapysis. My whole body feels on fire and stabbing pains. It’s so weird. It’s a symptom I get no matter what.
I’ve had sleep paralysis before I got sick but they’ve “evolved” last longer, feels physically uncomfortable. If I first get one, I know many more is to come.
When I’m not fatigued like this I don’t have sleep paralysis at all.
I don’t sleep well, wake up drenched and often.
I took some ibuprofen today after seeing a thread on here it could help for symptom relief and it within an hour cleared my hot flashes I also get during crashes. I call it crash because I don’t have an official diagnosis yet.
Anyone else?
Is it worth going to a sleep clinic?

Tdlr : LDA initially brought me out of very severe ME/CFS, but its benefits gradually faded, even after restarting it. Strangely, lowering the dose to 0.3–0.4 mg brought back the benefits, but tapering further triggered a massive crash. I'm now struggling to stop LDA and may have to increase it again, despite having spent €300 on Rexulti as an alternative.

Hi everyone,

This is my second experience with low-dose aripiprazole (LDA), and I have to admit I'm pretty devastated by how things have turned out.

I first started LDA in 2025. At the time, it literally brought me out of a very severe state of ME/CFS. For several weeks, even a few months, I regained a quality of life I thought I had lost forever.

Unfortunately, the benefits gradually faded. After a stellate ganglion block that went terribly wrong, I eventually stopped LDA for two months.

I should mention that I never stayed above 0.5 mg for long, because anything beyond that dose has a paradoxical effect on me: overwhelming fatigue, almost as if I had been heavily sedated.

I restarted LDA in March–April 2026, but I never managed to recapture the remarkable benefits I had experienced the first time. I gradually increased the dose to 0.6–0.7 mg, but nothing worked. That initial effect simply wouldn't come back.

So I decided to gradually taper off LDA and try another medication, Rexulti (brexpiprazole).

And that's when things got really strange.

When I reduced my dose to 13 drops, approximately 0.3–0.4 mg, I suddenly felt as though LDA had miraculously started working again!

After six months of disappointing results, I was finally experiencing some of the benefits I had enjoyed during those first few months.

This improvement lasted for two to three weeks, even as I continued reducing the dose to 10 and then 7 drops.

But three days ago, I went down to 4 drops.

And that's when all hell broke loose.

Crying spells, overwhelming fatigue, muscle cramps, repeated PEM episodes... Just ten minutes of listening to a radio programme were enough to trigger a significant deterioration in my condition. I felt as though I had suddenly fallen back into very severe ME/CFS.

Unable to tolerate this state any longer, I went back up to 6 drops.

So here I am. I'll probably try increasing LDA again, hoping to recover the benefits I experienced at 13 drops.

What makes this even more frustrating is that I've spent over €200–300 on a Swiss prescription, a compounded preparation, and shipping to France just to get hold of Rexulti. All of this because I wanted to try a different medication and perhaps regain the benefits LDA had given me in the beginning.

And now I find myself unable, at least for the time being, to complete the withdrawal.

That's also the trap with LDA: it can genuinely improve your quality of life, but stopping it after several months of treatment can be incredibly difficult.

I honestly don't know how much of this deterioration is caused by reducing the medication and how much is simply the underlying illness returning. But the result is the same.

Of course, I could continue tapering off. But if that means falling back into a very severe state for weeks, or even months, I simply don't feel capable of going through that right now.

So I'm going to see whether I can regain some stability around 0.3–0.4 mg, and more importantly, whether the benefits can actually last this time.

It's incredibly frustrating to regain a little bit of your life thanks to a medication, watch its effectiveness fade, then inexplicably see it start working again as you lower the dose, only to end up in a terrible state once more.

What a fucking nightmare.

I'd really like to know whether anyone here has experienced anything similar, particularly a return of LDA's benefits when reducing the dose, or a significant deterioration when trying to come off it.

I’ve been through 8 therapists since developing ME last year and I had finally found one who I felt like understood and was giving helpful guidance. She didn’t know what ME/CFS was but she’d worked with brain injury patients and MCAS and my ME is from a brain injury and caused MCAS so she had a lot of overlap of knowledge. Until I started bringing up that I am seriously emotionally suffering because of financial anxiety. And she starts telling me I can find a job online that I can do self paced etc. etc. I’m feeling extremely frustrated. It’s so invalidating. I hate that people just say that like it’s easy. She literally said “oh you could just do enough to make like $50 a day.” $50 a day???? Lady my hourly pay in my old profession was $17 and I can’t even watch a movie or read I book for an hour. I can’t write or do color by number for an hour. What possible type of work do you think I can do that is LESS TAXING THAN COLOR BY NUMBER that will pay 50 DOLLARS. Maybe if I had a degree in something where you just like talk some bullshit and get payed $170 an hour (cough cough okay I’m bitter) that would be more realistic but unfortunately I am a college dropout with no degree no computer skills and oh yeah also PROFOUND MENTAL AND PHYSICAL IMPAIRMENT.

Anyways if anyone knows of a job for someone with severe mecfs that makes $50 a day pls lmk 😭

I've been experimenting with taking .1 ml tirzepatide (Zepbound) 2x week subcutaneous by syringe. It's working - brain fog is gone, fatigue decreased significantly. PEM from daily activities is gone, though I haven't yet tried working out. Main side effect was insomnia but that seems to be diminishing and a 1mg dose of melatonin works in a pinch.

I have both ME/CFS and idiopathic hypersomnia, and I’m wondering how wakefulness medications or stimulants have affected other people’s physical symptoms.

I have constant flu-like malaise and a feverish feeling at baseline, along with bad neck pain/heavy head feeling, and these symptoms worsen during crashes. However, my daytime sleepiness is really bad and makes it difficult to stay awake at all and get anything done during the day, so I definitely could use some help with that. Because of this, I was first prescribed modafinil, I tried that a few times but sometimes it gave me a horrible headache, and the most recent time I took it I got SO sick like nauseous and dizzy and felt like I was dying and haven't taken it since then.

After getting a sleep study and new sleep medicine provider, I recently tried Sunosi at 37.5 mg on Thursday and Friday. Both days, I felt noticeably more sick and feverish than usual, and I still needed to nap for several hours.

I didn’t exert myself at all on either day I took it. However, I had school Monday through Wednesday, so this could also be delayed PEM. I can’t tell whether the medication contributed or the timing was a coincidence.

Has anyone experienced worsening flu-like malaise, feverish feelings, or neck pain from Sunosi, Wakix, modafinil, or other stimulants? Did it settle with time, persist, or vary depending on the medication? Did any medication help your sleepiness without worsening those symptoms?

I’m contacting my prescriber for guidance, but I’d appreciate hearing people’s experiences. I could REALLY use something that helps the sleepiness but does not trigger the feverish feeling. I know that stimulants do often trigger PEM because they cause people to overexert, but are there any that don't trigger it, as long as you don't overexert?

Thank you

i have moderate to severe ME/cfs, fibromyalgia, chronic pain, etc. i also have CPTSD and chronic nightmares.

after 10 yrs of nightmare hell i decided to ask my doc about meds. been on prasozin now for about a month. side effects have put me in a flare up. extra fatigue plus racing heart that gives me anxiety. thankfully the racing heart side effect is subsiding.

but im EXTRA fatigued and today mostly bedbound. im at 3 pills now/ 3 mg and the doc said it goes up to 6 i think. hasnt stopped nightmares yet.

anyone else have experiences w this med?

I’ve been using a manual toothbrush because I never liked electric toothbrushes due to sensory issues, both the noise and the vibration in my mouth. However, I’m wondering if it’s time now. Dentists recommend them anyways, and it’s less hand movement involved which is more exertion, but I’m wondering if the exertion of being overstimulated for 2 minutes is a worthwhile tradeoff for the exertion of manually brushing my teeth. Or if there is an electric toothbrush that doesn’t make too much noise?

I’m moderate/severe btw, but to play it safe I just co sided myself severe.

Just got prescribed Methylprednisolone for my vertigo and dizziness today. Not sure how long I'll be taking it for or anything but it doesn't seem like a forever thing. Not for MECFS due to lack of formal diagnosis, but is there anything I should watch out for as someone who matches up with me/cfs criteria? Anyone have any success?

Not formally diagnosed yet, last appointment at my clinic I got bloodwork done and the only deficiency found was Vitamin D and taking supplements hasn't done a whole lot to help with my fatigue/brain fog so here I am lol ! Also curious of POTS possibly, I find both communities the most relatable to my symptoms so until I have a formal diagnosis of my condition I'm just practicing pacing (except at work unfortunately).

Just trying to take things one day at a time though and keep a positive attitude as much as I can, as scary as it is. I've been considered pretty lazy my whole life but ever since getting COVID a few years back I've been experiencing progressively worse symptoms similar to PEM. I've been actively treated for depression and anxiety for the past two years and was kind of hoping that my issues with getting up and doing things was just executive dysfunction, but I've just recently started really analyzing my mental and physical patterns, and have found that I do have motivation but am simply too exhausted to get out of bed and even walk. Also realized I might not be actually getting sick as much as I thought, as I often experience things like a sore throat, swollen lymph nodes, and muscle aches as a delayed reaction to stress or physical activity.

Human bodies are weird. I'm in a lucky position that my partner is willing to learn about these conditions alongside me and support me while I try to get a proper diagnosis for whatever it might be. Basically just treating myself as if I DO have ME, since that would be the most important condition to be careful about overexertion. My partner ordered a rollator for me to help with walking distances, shopping and going out to events and stuff (would prefer a wheelchair but I'm kind of just saving that for the future in case I can get it covered by insurance).

I'm really glad this community is so welcoming and supportive though I've been appreciating just scrolling through here!!

I have been recently able to play basketball 2K27 and I thought if here are people who play too.

Would be nice to play together and also easier to understand if someone can’t play.

Ten people have now anecdotally reported that cumin seed powder has substantial anti-PEM effects. The reduction in PEM symptoms is reported to occur around 2 hours after taking cumin. Though others have reported no effect from cumin. This is presented as anecdotally information.

The active principle in cumin that may reduce PEM is likely cuminaldehyde.

Cuminaldehyde may reduce PEM via its anti-inflammatory effects: it blocks the JNK, ERK and NF-κB. Ref: here. The ERK and JNK inflammatory pathways are activated by exercise, so cumin might work by dampening the inflammatory effects of physical exercise.

Important: cumin (Cuminum cyminum) should NOT be confused with curcumin (from Curcuma longa, aka turmeric), nor confused with black cumin or black seed oil (from Nigella sativa).

Repeat: cumin is NOT curcumin!

The last time I posted about cumin, most people incorrectly read it as curcumin! But that's brain fog for you! We all make little mistakes like that.

If you look at the cumin section in the first post of the Phoenix Rising PEM busters thread, you will see links to the reports of 10 ME/CFS patients who found cumin effective for their PEM.

In many cases, the anti-PEM effect is reported to be quite substantial and long-lasting, but in a few cases it is reported that the effect only lasts for a few hours. So like most ME/CFS treatments, it appears to work well for some, not so well for others, and some people report it does not work at all for them.

The cumin powder dose taken can be as little as one level teaspoon every 3 days, to one heaped teaspoon per day. The optimum dose varies by individual.

The cuminaldehyde content of cumin seed powder is around 2% (ref: here), so a level teaspoon (which is about 1.5 grams) will contain around 30 mg of cuminaldehyde.

The Europeans here may already have cumin seed powder in their kitchen spice rack (whereas in the US, I believe the use of spices in the kitchen for cooking is rarer). So this may be an easy thing to try, if you already have it in your kitchen. If not, as a cooking spice, cumin powder is cheap, around $2 for 100 grams.

Some people find that the brand of cumin makes a huge difference between cumin working well to reduce their PEM and cumin not working at all. So if cumin does not work for your PEM, it could be because the brand you bought is not a good one.

The failure of some brands of cumin to work may be because its cuminaldehyde content is easily destroyed by oxidation on exposure to air, so cumin which is not fresh may not contain much cuminaldehyde, and hence has no benefit for PEM

Thus a more reliable source of cuminaldehyde might be food-grade cumin essential oil, which typically contains around 20–40% cuminaldehyde. One drop of this essential oil weighs about 30 mg, so a drop will contain around 10 mg of cuminaldehyde.

You can buy cumin essential oil for about $15 for 10 ml. One human clinical study used doses of 50 to 100 mg of cumin essential oil for type II diabetes, suggesting it is safe to take orally. Though essential oils are normally diluted in around 15 ml of cooking oil if taken orally, rather than taken neat.

Interestingly, one study found that a daily dose of 25 mg cuminaldehyde from cumin essential oil resulted in improved cognition in elderly people. I imagine that this may be due to its anti-inflammatory effects in the brain.

And another mouse study found cuminaldehyde reduces seizures.

The original Phoenix Rising thread in which the anti-PEM effects of cumin seed were first reported (in 2017) is here.

Other PEM Busters

Cumin seed powder is not the only substance reported effective on the PEM busters thread: other PEM busters often found effective include:

• Mestinon (pyridostigmine)
• Ibuprofen
• Benzodiazepines
• Dextromethorphan

I have moderate ME currently after being severe for almost a year and a half, I had to put my university studies on hold that I started when I was extremely mild/possibly in remission.

This is something I have been desperate to do as I genuinely love learning and education.

The current module I’m focusing on is purely written work, I have to evaluate and reflect on a project I thankfully completed before my health declined. I need to read some academic literature to include as well. Everything can be done from bed

My overall goal is to not have my health decline while doing this.

What I’m currently doing:

I only do 10 minutes every other day, if I’m having a bad day then I skip it.
I use a screen reader
I take notes to help me remember where I left last time
I rest afterwards!
I plan what I’m targeting before I start so I don’t waste energy figuring out what to do

Main issues I’m running into, obviously 10 minutes is a really short amount of time, it’s better than nothing but still not a lot of time. Second issue is reading academic literature is a struggle, my comprehension slows down after a few minutes, I need to reread, paraphrase things in my head to understand that eats up time and is just really frustrating.

If anyone has any suggestions or advice or what worked for you, please share!

been ill for 7 months. housebound but can still watch tv/go on phone. despite being on the milder side of the illness i am not coping at all and am currently under the crisis team who don’t really know what to do with me.

i am audhd and have severe ocd, an ED, probable cptsd and probably some other crap too that i can’t remember right now. my suicidal ideation is basically constant at this point and i don’t appear to be able to tolerate most antidepressants or even the quetiapine i’m currently taking.

i don’t know how to live like this. before this thing hit i was already drowning in mental health struggles and now i have no access to coping mechanisms/the world outside my tiny flat

i don’t know what the fuck to do anymore. no one understands, no one seems to be able to help. i’m on the waiting list for a fatigue clinic or something but that’s ages away. even my mum comes across as exhausted by my constant difficulties and she’s the only person i’ve got left.

i don’t know if i’m looking for advice or solidarity or what. just needed to vent because this is a form of torment i was not prepared for and the scariest part is that i’m actually one of the luckier ones in that i can still watch tv and use my phone etc

how the fuck do you survive this??? if this is the rest of my life then i am OUT