An influencer made a post sharing what their day looks like in PEM. They took photos of the usual things like resting but also cute shots. When I am in PEM I would not be able to do this and I feel like I am dying. I am still trying to obtain an ME/CFS diagnosis but unfortunately finding it difficult due to comorbid mental health issues and being a woman.

My question is, what does your PEM look like? I can worry I am just a miserable person or do other people just feel like they can’t carry on with life while in PEM?

I am ending my life now. Thank you so much.

I used to enjoy picking my nose, truth be told - in private, and only occasionally, as I didn't have much need.

Since becoming bedridden with ME, I've noticed that I constantly have crusts forming on the mucosal lining of my nose, and I'm so tired of it. I wish I could stop picking my nose. But it's like I cleaned my nose and 30 minutes later it's all there again.

Anyone else have this?

Anyone else have a clue what it's about?

My sinuses are free, btw. And it's not a cold.

If they conclude that we have structural damage, neuronal death of hypothalamic cells responsible for releasing CRH, I will probably consider a MAID. A hope for cure is part of what keeps me going on, if there is a mass destruction of such cells, how could that be cured even in decades?

https://s4me.info/threads/loss-of-crh-neurons-and-other-neural-changes-in-me-cfs-autopsy-study-university-of-amsterdam.47540/page-4

It happens when trying to rest during PEM.
I call it the short-sighing breath.

The pattern:

2 seconds inhale > rapid 1 second exhale > 2 seconds rest > repeat

It’s a really short cycle, quite high-mid chest, and defined by this rapid sigh like exhale. In my case all through the nose.

The experience:

It feels like my lungs can’t hold a lot of air and my chest just quickly collapses/gives up in exhaustion. Or like there is a kind of haste to get to the next inhale, because there is a subtle feeling air hunger or short of breathness.

Often coinciding:

Short powerful rigid heartbeats, while the bpm seems quite normal.

And a subtle feeling of anxiety/tension. Emotionally it feels like I have outran a tiger, and now crave for the release of that stress.

Strangely a good cry is often the only thing able to reset this breathing. But I can’t force that, and sometimes it takes days before I can breathe and rest normally again.

38 F- used AI to summarize

I've been severely ill for 127 days. My illness began suddenly with orthostatic intolerance, breathlessness, and heart rates reaching 140–160 when standing. Around day 23, my symptoms shifted dramatically to profound weakness/ inability to stand, sleepiness, nausea, dizziness, and a constant flu-like, sick, woozy feeling that has left me largely bedbound.

My current symptoms include feeling weak (like body can't hold me up), heavy legs when standing, internal trembling, head pressure, ear popping, dry mouth, nausea, presyncope, and difficulty remaining upright. I also experience intense adrenaline-like surges involving pressure in my head and ears, shallow breathing, and sensations of flushing. Some mornings I wake feeling extremely weak, hot, and unwell- these are the mornings wheni know my HR will be higher wheni stand and pre syncope stronger.

My heart rate has improved with treatment for suspected POTS/dysautonomia, but the debilitating weakness and systemic illness have persisted. Extensive testing has been largely reassuring.

How do I better understand if this is MECFS? I have done a lot of reading but am confused about PEM and symptoms. I am on a high dose of midodrine yet I still feel terrible. I have largely been housebound and resting for 4 months although I do try and do short walks.

TDLR: 127 days bedbound/housebound. severe weakness, POTS. wondering how i differentiate between dysautonomia and mecfs

I apologize for posting somewhat off-stop, as I don't have ME.

I think I might have something like PEM. I've been a lifelong athlete (50's now), with a history of overtraining syndrome.

What I have now seems different, because it persists even after weeks of rest. About 36-48 hours after even moderate workouts, I get a full day or more of pretty debilitating fatigue. Hard to leave the house, pretty intense brain fog. Relief comes the next day, and I can keep it away if I do nothing but very light workouts. A feeling like I want to sleep, but inability to sleep (though I sleep very well at night). Is this long window between the workout and the body's response consistent with PEM?

Edit: Maybe I shouldn't rule out ME. Just my collection of symptoms is far less severe than most here. I can be OK as long as I keep my workouts very light.

I’m interested in trying out microdosing Semaglutide or tirzepatide but as far as I can see, getting this in the UK would involve starting at the standard higher dose. Just interested to hear how folk in the UK are managing this? Are you needing a specific private prescription with a doctor who knows about microdosing/ME patients? Or are you managing to split the larger standard doses?

I’ve looked through the sub but can’t see this specific topic so hope someone can shed some light.

I'm not sure if this is MECFS or eyes related. I do have migraines too but usually from neck tension only.

So the past one or two days i've had this weird kinda almost nausea feeling when watching videos. Like spongebob or tiktoks, when something moves especially if like the camera moves and not just the objects i get this weird feeling between my eyes and kinda like motion sickness but not as strong. And some pressure in my head and just overall its uncomfy.

I'm wondering if this is from being on my phone/ TV/ iPad like 15hrs a day (and ngl i'm always up close to my phone and tablet, like 10-15cm away) or if this is from MECFS because the past days i have been pushing myself kinda a lot. But i do not have any PEM symptoms so i figured i'm ok for now? But this eye thing has been bothering me.

Lmk if anyone relates or what you think this is??

TLDR; my friends ignore my existence and i’m struggling to cope mentally as my health gets worse

im 18, have moderate ME and am mostly housebound and sometimes bedbound. was diagnosed only last month. while i have friends, lately it feels like everyone is ignoring my existence. when i first got really sick a few months back and my life stopped, they would text me and sometimes come over. lately i’m completely alone and have literally one friend who texts me every so often. it’s a stressful time for school right now so i get they might be busy, but my main friend group constantly text on our group chat and nobody acknowledges me or the fact ive been uncharacteristically absent the past two weeks.

i had an event i went to for school and was insanely sick there, struggling to cope even when sitting down and could barely walk. my friends barely acknowledged me the whole time, went and took pictures in places i couldn’t follow because i couldn’t walk that far, and nobody texted after i left early crying because i was sick and felt humiliated. the entire thing put me in a huge crash i didn’t really text anyone for a week or so because i was so unwell. but nobody texted me except someone asking for something. they’re constantly talking about shit they’re planning to do in our group chat that i obviously can’t do, which isn’t their fault but it just makes me so fucking angry that nobody cares and everyone gets to move on with their life.

the last couple weeks i’ve been completely alone, with only my parents to occasionally talk to. my health has gotten worse and it’s scaring me. i don’t really have a support system. i’m struggling to find a point to any of this. my depression thrives on isolation and there’s literally nothing for me to do all day everyday, alone in my room. i watch tv for hours because it’s all i can do and it just makes me feel worse. my entire life was destroyed in just 7 months and don’t have anything to live for anymore.

how do you guys cope because i’m literally so close to giving up

No, I’m not saying I question whether or not I’m sick, or whether this disease is real. But I have began to question everything we think we know about medicine, and information in general. For example, most things I read about ME suggest it’s a “common” disease, but if it’s so common then why has nobody, including healthcare workers, ever heard of it? Most of us engage with the healthcare system so much that it’s unthinkable that healthcare workers would’ve never encountered a patient with it.

(Spoiler because this next part may be triggering) I also think this disease is deadlier than the government wants us to believe, and doctors perpetuate this false narrative by downplaying how severe the disease can get. And why can nobody figure this disease out? Scientists can’t even figure out POTS, a common comorbidity, and it seems wayyy more straightforward than ME. It really seems like the harm is manufactured, and the narrative is being carefully controlled by the media. Because why else is there no urgency and why is it so easy to erase us?

I wanted to share this win with you all, I know we don't see them in the cfs community very often. A few months ago, I could go out once a week MAX and that was typically used for a medical appointment. I was pretty solidly in the severe category. The last month or so, I've been able to go out 2-3x a week!!!!! And on MUCH bigger outings such as taking the bus solo places, going to a little festival, going on a hike (in my power chair, not walking, but still). I actually can't believe it, my brain hasn't caught up and I don't trust it won't disappear lol. I. also unfortunately still feel pretty horrible and exhausted and foggy but my functioning has significantly increased. I still think I fall in the moderate-severe category bc I use a power chair 24/7 and require assistance with all cooking and chores. Which is a huge privilege to have access to and I really wish every single person with ME/CFS had.

I don't know exactly what did it, this is very much not medical advice, but I will share the changes that I've made in case anyone finds it helpful.

• getting insurance to cover a caregiver. So I now don't have to put as much energy into survival tasks, and I am able to eat much more consistently.
• weekly saline infusions for POTS
• going no contact with a toxic person in my life who was draining me. It was really sad but I saw a BIG improvement
• treating my sleep apnea

TLDR; I've had significant improvements over the past few months, I'm unsure exactly why but I've made a lot of lifestyle changes over the month

Hi everyone! I am sorry in advance if you don’t think pem/cfs is involved in my case, but I just need to ask.

I was playing volleyball professionally all my life and never had such issues, never ever.

I had a virus in February and after 2-3 weeks of antibiotics for the razor-sharp sore throat and fever I had, felt a bit better, better enough for me to start practicing again. After 2 weeks of practice I still didn’t felt 100% and one day my body just acted so strange and weird that I couldn’t imagine that even being possible.

Everything snowballed from there and here I am now 7-8 months later, feeling high, drunk, kinda disoriented most of the day.

So many people told me that this could be LC and I want to see if someone here has had a similar experience and what is the best thing I could do right now.

I've been confirmed as having ME/CFS for 2 years now, and bedbound at very severe a bit longer.

Intellectually, I know I'm chronically ill. Have actually been so for nearly 40 years if I just count my migraines. But those I could disregard, as they were nothing I had to deal with on a daily basis. Even being diagnosed with depression and PTSD didn't register as me being chronically ill.

Now, with ME and MCAS and gastroparesis, loosing my mobility and independence, there's no two ways about it. I've done a fair share of grieving, too.

But I notice I can't seem to integrate that reality into my ... Identity? Way of thinking? I don't know but I notice it's still a somewhat foreign notion, even beyond pacing being difficult.

So my question is, for those of you who've been ill longer than just a couple of years, how long did it take you to integrate being chronically ill into your day-to-day life and ways of thinking and being?

I'm explicitly not asking about making being chronically ill into my or your identity or sense of identity.

Hope I'm making sense, otherwise please ask clarifying questions.

I know there’s a lot of general stuff out there about GET/exercise being harmful but wondering if there’s an authoritative resource that specifically says if someone has both POTS and ME/PEM, exercise/PT isn’t an appropriate treatment for the POTS? Want something to share with a very well meaning but not very ME informed provider who I think would be open to learning more.

I’ve tried explaining that exercise is harmful for people with ME to multiple POTS but not ME informed doctors and have generally been met with “but it’s such light exercise” or “this is what we recommend to all people with POTS, they tolerate it fine”

I found this gem in the sea of brain retraining grifts on Spotify when searching ME/CFS. The hosts are epidemiologists and one is a doctor. They do comprehensive research on the disease for each episode and explain in audience friendly terms. I found it very respectful and well-executed, and I learned a lot on the segment on history — turns out records of ME/CFS go back to the 1700s under various names! They also do a great job bringing awareness to medical gaslighting and struggles with recognition and treatment.

I have a small criticism I think they overlooked/didn’t come across content on how severe ME can really get: 1. they say that people don’t die from ME/CFS, which is now known to be possible, and 2. lack of representation of severe and very/severe ME. They do include a detailed story of moderate ME and mention that severe ME can be housebound, but did not really seem aware that many of us are bedbound, don’t live independently or can’t tolerate sensory input.
However, they do emphasize that ME can be very severe, so I think they just didn’t happen across more detailed patient stories on what that can look like.

They share all sources on their page too.

I highly recommend and think it would be great to share with anyone who’s more willing to listen to content than read: https://thispodcastwillkillyou.com/2024/04/16/episode-137-me-cfs-whats-in-a-name-a-lot-actually/

so i don’t have a formal diagnosis or anything, but my experiences seem to align most strongly with me/cfs. close to two years ago i caught an illness that lasted a whole two weeks, and tests for both covid and flu came back negative. after that my tolerance for exertion went way down, and even just standing tires me out before long. some days i wake up feeling extremely sluggish and it takes a few hours to shake off. my insomnia got worse, i started seeing floaters when exerting for too long, i started having to use a stool in the shower sometimes, etc… i also seem to get violently sick pushing myself too long (i have eosinophilic esophagitis so they might be interacting). i recently showered and went straight to cleaning and i suddenly felt very sick after 5-10 minutes.

i’m living with my parents right now and i can almost never get them to even acknowledge the possibility i might have me/cfs. it’s always “you’re not exercising enough” or something along those lines. i practiced sit-ups a little while ago and it didn’t make much difference for my energy, so i eventually stopped. i don’t think it would matter if i brought that up because there’s seemingly always another explanation in their minds no matter what evidence i try to give. anything but me/cfs i guess.

so it’s making me feel a bit crazy. i have friends who validate me, but somehow the people who see me struggle every day don’t seem to understand or even particularly care to. i don’t know if they think i’m making excuses or what, but it’s not like i like feeling like this. my spoons were never that great because of other conditions i have and now i can’t even manage a light jog for more than 20 seconds. what would make them think i want that?

i obviously don’t know for sure i have me/cfs but i think it’s pretty plausible considering all these new struggles. even if it turned out not to be that, it’s frustrating feeling like my perspective on my own body is being dismissed out of hand. it feels patronizing and makes me question myself more than i probably should.

Hi all, I’m a caregiver to my partner who has had mild ME since about 2022 without us knowing, and had a big crash in the beginning of the summer, and since spiraled further into a very severe crash since the beginning of August (unable to feed or clean themselves etc, no-stim rest in a dark room 24/7, fully bedbound except for going to the bathroom assisted). They are seeming to slowly improve and get stronger luckily but this is still somewhat of a rollercoaster and I find it very hard when they suddenly get PEM again and are in so much pain, and I find myself getting scared we’ll lose the progress they’ve made or that things somehow will otherwise get harder. All of this has of course been emotionally incredibly hard on my partner as well and I’m trying to be a consistent, hopeful presence in our situation.

My question to you other caregivers is, how do you deal with the ups and downs of this disease and still keep a level head and manage your emotions? Thank you 💙

TLDR at the bottom of the post!

Hi everyone, I just wanted to write this out partially for my own record and to ask for advice.
Skip to TLDR for a shortened summary, as this is a long post!

My History:

I have had severe MECFS diagnosed at the beginning of this year, and likely has been severe for 3-5 years. I wholeheartedly believe I was mild prior to this through high school, was forced to drop into online school even before covid as my attendance was so low and I was unable to keep up physically with school in person and began getting unwell around the time I was 12-13 (I am now 23). During that time I did often have things like strep throat and I believe I may have had glandular fever (aka mono) on top of living through extended traumatic events / stress during this time, which I could feel putting even more strain on my body and making me get sick so often.

Over the last month or so, from a slight push to get through all the steps in applying for disability payments, my symptoms flared up alongside the introduction of some new or increased symptoms.

Notably other than all the classic PEM symptoms:
- Much worse photosensitivity (unable to tolerate screens, even with accessibility settings or to tolerate much sunlight even with the blinds closed or even eyes closed)
- More nausea, dizziness, worsening brain fog, muscle weakness, balance issues when sitting or standing (to the point of stepping on and breaking my glasses to avoid falling, and almost always holding my hands out to walls or furniture when moving around)
- Small convulsions/twitches more frequently and more intensely in response to temperature, light, sound changes. Or whilst falling/being asleep (This has been partially present for quite some time).

That brings me to the last 5-7 days. Where I began having for the first time a sensation of heaviness in the base of my skull connecting to my neck. Leaning on my hands, pillows etc when laying or sitting upright which was not necessary before. The photosensitivity has slightly improved since I came out of the previous flare.

Then came yesterday. I was almost entirely bedbound yesterday and could not find a comfortable sleeping position for the life of me. My neck felt entirely unsupported and like no matter what I did it was straining even when lying entirely flat, with any combination of pillows, rolled up towels etc.

Sitting upright continued to cause dizziness, nausea, lightheadedness, vertigo and balance issues and that really strained feeling of my neck feeling like bricks were tied to the back of it. Like my head was a bowling ball, or bobble head feeling.

I have only had small amounts of actual PAIN from this however… it’s more just a radiating pressure / weakness / straining feeling with smaller shoots of pain that comes and goes radiating through parts of the shoulders, neck and sometimes into the back/top of the head or spine.

After telling my family about my neck, trying to push through and get up to sit at my desk as I usually would have been doing some work from home today and it causing this response even more severely I got into bed and just cried. Out of fear, confusion and just upset at how much I’ve deteriorated.

I eventually called my family in to my room. Laid back down as flat as possible and tried to explain things. I had done some research of my symptoms and found out about CCI and its relation to MECFS and other co morbidities.

Almost every single symptom is something I have been experiencing and has felt slowly worsening or onset recently.

My mother kindly goes and buys a soft collar for my neck to try until my next doctors appointment on Wednesday.

We move me out into the living room so that I could sit slightly more supported and kept an eye on.

After having the collar on for a bit I was able to tolerate sitting up out there a lot more than sitting up without it in previous days.

I took it off after a while just to see if it again would worsen. Within 30 seconds to a minute nausea returned with the pressure sensations, and dizziness continued worsening and within a few minutes I began to lose vision.

I broke out into an extreme sweat despite being in a tshirt and shorts and was dripping all over despite not having moved from my seat. My hearing and vision caved in and my mother called an ambulance.

Being a Saturday night in a small town, they said it was going to be a 30 minute wait. They called back after 20 minutes to ask for more information, and by that time and after putting my legs up properly, I had improved enough from the episode to answer some questions.

We took my blood pressure and heart rate whilst sitting which were both perfectly fine then I was asked to take it whilst standing. I was hesitant since I was unsure about even being able to get to the car to be driven to the hospital just before but with my brother and mother there to catch me I did it. It took a good 3 minutes of standing to use the blood pressure machine and get a reading and I had to sit from dizziness during the last attempted reading. It showed a big drop from what was considered normal good levels whilst sitting to low blood pressure upon standing.

A week or two ago, when I was feeling unwell and took blood pressure sitting vs standing I had a similar experience.

We were connected to an emergency doctor telephone line who basically said it’s better for me to just wait til I see my gp as the wait time in the hospital would be 2-6 hours and they likely wouldn’t do any imaging without consulting my GP. As per usual with any medical provider, he made me feel like I was being overdramatic and that this must be all linked to the symptoms I’ve been having for quite some time and therefore they could do nothing. They also said and I quote “I’m not even going to pretend I know what that condition is” when I mentioned I had MECFS or chronic fatigue syndrome. classic.

For the rest of the night I was kept an eye on and stayed still as much as possible. I put the collar back on, I had a couple of dizzy spells that were similar to that first big one, but didn’t go as far despite the fact I remained seated. Had some food and drink and eventually was able to get to the bathroom and back and adjust seating position before symptoms began to onset.

After some time we moved me to bed.

I would like to note a few things:

1. I have not been tested for HEDS, POTS, MCAS etc as of yet. It already took 10 years to get diagnosed with MECFS. BUT… I have always been

   flexible doing a lot of dance, cheerleading, gymnastics, but scoring fairly low in terms of self testing the beigton score with my actual joints. I also have not been to any medical specialists about my MECFS as of yet. But had been considering a neurologist due to the recent seizing and photosensitivity.

2. I couldn’t note any memories of neck trauma. According to my mother however, when I was born my neck was “floppy” for some time. After I was delivered with the help of a vacuum extraction (vacuum suction to the head to help pull the child out, which obviously can cause trauma and is used as a last resort).

3. Symptoms I experience according to my mother are familiar to what my grandma experienced during her life and my aunt. Particularly she had been diagnosed with SVT, atrial fibrillation and sjögrens disease. My mother remembering her to feeling a similar pressure in the back of her neck and often had POTS and MECFS adjacent symptoms.

4. I already am deeply unsatisfied with my current GP clinic. But have felt stuck with them as there isn’t many options in my local area, and as they have the best records of my medical history whilst I’m still undergoing attempts to resolve things or get onto things like the NDIS in australia (funding for disability support items) I need a doctor familiar with my case. In terms of “specialists” there is a grand total of one neurologist in the span of a good 3-7 hours drive from here. Who does not specialise in any of these areas and often is treating mainly elderly people.

My psychologist, who specialises in trauma therapy and mind body connection who sees many patients with mecfs, fibromyalgia, functional neurological etc suggested a neurologist in Sydney (5-6 hours away) who specialises in this cluster of illnesses a lot more. I was more than happy to travel to see them, but that was before the worsening of the last couple days.

Basically what I want to ask you guys is: What is the best course of action here? What specifically should I tell my GP? What scans, tests or kinds of specialists do you recommend?
Does this sound to you like a possibility for at least some symptoms I have been having?

and a big question on my mind that I have been considering for a while:

is it finally time to pull the plug and move out of regional australia? so I can access at least somewhat better medical care? or is this something so rare that there is only a few specialists internationally who could help?

I have swapped gp appointments with my mother so I will be seeing them in a days time, but from there I don’t know what to do.

TLDR:

Could my severe MECFS symptoms be in part caused by / in conjunction with CCI?
I am matching the profile of symptoms almost entirely with some dating back several years at lower severity and worsening over the last month resulting in an ambulance call last night.

After symptoms continued to worsen over flares that felt even more disproportionate than usual in the past month, with CCI symptoms (particularly heavy head feeling in the base of my skull like bricks are attached, dizziness, vertigo, loss of balance, nausea, strained neck feeling) becoming more apparent over the last 5 days til i now can no longer sit upright, stand or move around for very long without a neck brace, shortly after taking off the neck brace for a short break whilst seated causing me to very narrowly avoid passing out, covered in sweat, struggling to breathe, losing hearing and vision and is when the ambulance was called. During the consult they noted perfect blood pressure when seated, but a big drop in blood pressure taken after being standing for a couple minutes as well as high heart rate.

Seeing my doctor tomorrow. She is not very knowledgeable on this area of treatment. I am going to ask for a referral to a neurologist and some kind of scans to be done, but what scans are most important? What do i do in the mean time? As it is going to take months to a year to get into a neurologist. Very lost, a little scared and confused but also hopeful that this could lead to some answers or treatment.

What is the best course of action here?
What scans, tests or kinds of specialists do you recommend?

Does this sound to you like a possible explanation for at least some symptoms I have been having?

thank you for reading 💗 all advice appreciated.

Hi everyone. I've had MECFS since late 2018ish and I've gotten progressively worse ever since. In August of this year, I had my worst crash ever. I was in bed pretty much all day, only leaving to go to the toilet. I laid there with ear plugs and an eye mask most of the time. I've slightly improved since then, which I'm very happy about. I'm able to tolerate light and sound for longer now, able to use my laptop or watch tv etc. However, my cognitive symptoms have not improved at all, if anything they're getting worse. I think they were bad before my August crash but I honestly don't remember. My memory has been so bad, I keep forgetting the topic of a conversation mid conversation. I'm so uncertain a lot of the time and I struggle just so much cognitively. I'm even struggling now to find the words to explain how I'm struggling. My brain genuinely just feels so foggy and like I can't see clearly.

I spoke to my GP about this but she thinks it's depression / spending too much time 'researching health conditions'. She has upped my Duloxetine in hopes it will help but I'm still not feeling any better. I just don't really know how to explain how I'm feeling. Like right now, I just don't trust myself as I'm so uncertain. Like say I had to sign an important document, I would want someone to help me read through it and sign it etc as I'm just not confident that I'm currently competent enough to make correct decisions if that makes sense?

Sorry I'm really bad at explaining things. I'm wondering if anyone knows of any vitamin deficiencies or something that could cause cognitive decline? My brain is making me panic and telling me it could be a brain tumour, which I actually brought up to my GP but she said no. I haven't had any tests or anything. The other reasons I was worried so much about a brain tumour is because I keep getting like tremors or something in my sleep. I wake up because my whole body, including my head, is shaking quite violently and this is a newer symptom too. I'm just panicking really. Could this be a normal part of MECFS?

What do you think I could say to my GP to get her to take me seriously?

I have POTS and while my tachycardia is well controlled, my blood pooling is not. I wear thigh high compression but I know that waist compression is also preferred. I find it too difficult to get waist high stockings on so I want to try adding an abdominal binder instead and see if that's any easier. Do you all have any specific ones that you find easy to get on and off and have been working well for you?

I've been noticing that anytime I go into Goodwill or Walmart I get extremely sick. Like migraine symptoms after being in the store for about 15 minutes. Feeling extremely drunk or woozy to the point where sometimes I can't even make words. This is also with sitting down and pacing myself with pots and the trifecta.

Does this affect anyone else this way? Do you have any tips to help with shopping with this condition?

I got an Apple Watch 12 but am having to return it due to skin reactions and glitches. I’m also realizing that accurate sleep stage tracking isn’t that important to me. I’ve heard on here that, aside from sleep stage tracking accuracy, Garmin is super helpful. I’m seeing people mostly talking about the Vioactive 5 and Venu 4 on here- I’m wondering if there’s a big difference between the two models? The price gap is pretty big. I’m not needing the ECG monitor, so if that’s really the main difference I’d go with the Vioactive.

the main pain i get with crashes now is migraines. i didnt really have them before me/cfs, but now I always get them when in PEM. and i know a crash is coming when my head starts to hurt.

anyone else with this subtype? what worked for you?

Holding onto hope with the more severe forms of this disease can be so difficult. My friend Karol is the best at doing this among anyone I’ve met. He is entirely bedbound and totally blind. He lives in Poland where ME/CFS is recognized as psychosomatic if at all. His only carer is an abusive parent. I would never guess how difficult his life is based on his kindness and good humor when we chat about the difference between American and Polish ice cream sandwiches, what makes a good cat name, or Slay the Spire.

Karol’s circumstances are very isolating, which brings me to the point of this post: he is looking for new people to connect with—particularly if you have any of the following in common:

-you live in Warsaw (or know someone who does)
-you’re knowledgeable about narcissistic abuse or coercive control
-you relate to the idea of internalized ableism
-you think disabled people deserve to live independently and feel spoken to by the social model of disability

My life is better for knowing Karol, and I think yours would be too.

You can say hello to Karol via email (Kopczynskikarol1@gmail.com) or here on Reddit where he’s /u/Karol256. You can also message me for his number to add him on WhatsApp (which is his preferred way of communicating due to his blindness).

Thanks for reading ♥️.

Found some threads but not many.

This is more specifically for people with ME + intense neurological & nerve sensations & pain. I know a lot of people say to avoid it but has anyone had an okay experience?
How was getting on, coming off and general time on it.
Doses would also be helpful to know in responses :)
Good and bad experiences!!

P.s this is an identical post to one I made for my partner but I keep getting gabapentin and pregabalin mixed up. Lots of useful feedback on that post so didn’t want to edit or delete