u/DepartmentNo5227

Anyone has tried it while severe/very severe?

It's always the same: I have a specialist appointment. They suggests something. I get hopeful. Then I look into whatever it is and realize it has more potential harm than good to do.

Anyway, I take it ("what if this is what moves the needle?). Umpleasant side effects.

I tried ivabradine and ended up badly. I'm scared of trying fludrocortisone, I can't physically afford a trip to the ER.

I first thought it was temporary. I peed on a bucket. Two months in, I got a bedside comode.

"In max. 6 months I'll walk to the kitchen and bathroom". It's been 11 months.

Today I'm so weak I can barely eat. Rolling PEM.

I'm very scared.

I just can't.

I use my phone to avoid my thoughts. It makes me worse.

Just a heads-up for anyone in the EU considering NormaLyte. Their website says they ship to Europe, but European orders are currently fulfilled from the UK, which is outside the EU.

My €47 order was stopped by customs when it arrived, and I was asked to pay €50 in import taxes and customs/handling fees before it could be delivered.

Unlike some non-EU websites that collect VAT at checkout, NormaLyte currently doesn't collect these charges upfront, and I didn't see a clear warning at checkout that the order would be shipped from the UK and could incur substantial additional costs.

I decided not to pay, so I never received the product and therefore can't even tell you whether it works.

I'm not posting this to bash NormaLyte. I contacted them and they were transparent about being a small business and working on improving their international setup. I just wish I had known this before ordering, and I wanted to warn other EU customers so nobody else gets an unexpected customs bill.

Normalyte electrolytes. I’m posting this as a genuine warning because I really wish I had known this before placing my order.

NormaLyte’s website says they ship to Europe, but their European orders are currently fulfilled from a warehouse in the UK, which is outside the EU.

This means that when your package arrives in an EU country, it is stopped at customs and you are then asked to pay the applicable import VAT/taxes and customs/handling fees before the package can be delivered.

In my case, I ordered €47 worth of product, and the import taxes and customs/handling fees came to €50 extra, more than the value of the products themselves.

Many other websites outside the EU that collect the VAT at checkout through the appropriate system, so you know what you are paying upfront and don't get an unexpected customs bill when the package arrives. With NormaLyte, that isn't currently the case. The VAT/import charges are not collected at checkout, and there was no clear warning at the point of payment telling me that my order would be shipped from the UK and could incur almost another €50 in charges. I only discovered the actual cost once the package arrived and was stopped by customs.

I ultimately decided not to pay the additional charges, so the package was returned and I never received the product. As a result, I can't even tell you whether NormaLyte works or not, I never got the chance to try it.

I'm not posting this to attack NormaLyte. I contacted them directly, and they explained that they are a small business and are working on improving their international fulfillment and tax/shipping setup.

But I still think EU customers deserve to know this before placing an order, because finding out about a €50 additional charge only after your package has arrived at customs is a very different experience from knowing the total cost upfront.

TL;DR: If you're in the EU and considering ordering NormaLyte, know thar your order will be fulfilled from the UK (not EU) and import charges will apply in your country when it arrives at customs.

TL;DR: After becoming severe and bedbound with ME, my friends of 20+ years rarely reach out and give superficial responses to my reality. When I share the terrifying, isolating details of severe crashes or emergencies, they deflect with shocking answers ("we can't give you answers"), say nothing, or immediately pivot back to cheerful updates about their vacations. I'm grieving the loss of genuine connection and wondering if I am expecting too much, or if this profound emotional abandonment is a normal part of ME isolation. But I do have one friend who keeps reaching out, so...it *is* possible.

****************** (edited typos, fat fingers)

Hi everyone. I’m struggling a lot with this and need some outside perspective.

I have several friends I’ve known for 20+ years. Despite living far away, we used to be very close, saw each other at least once a year, and even took annual trips together before I became sick.

Now, I am severe, bordering on very severe, and 100% bedbound. Because I don't have the energy to communicate normally, I had to tell them I was withdrawing from social media and restricting WhatsApp. Since then, they rarely initiate contact. A couple occasionally send things like "don't forget that we love you," which I appreciate, but if I reach out (like wishing them a happy birthday), there's barely any conversation. Our shared group chat has essentially gone silent, and I sometimes suspect there's another group without me.

The hardest part isn't just the silence; it's what happens when I do try to share my reality (maybe after they ask "how are you" when I say happy birthday, or if I answer to their "dont forget we love you" very occasional comment):

• When I've said things like, "I don’t think I’ll ever leave this bed," or shared that I'm terrified in a crash because you never know which PEM episode might drop you to a lower baseline, there are no follow-up questions. No attempt to sit with it.
• When I had to buzz-cut my hair because I couldn't wash it for six months, they told me I looked beautiful, which was kind, but completely glossed over the profound grief and devastation behind having to do that.
• Most recently, during a brutal PEM crash, a sudden storm flooded part of my room while I was home alone. Just trying to grab a towel and close a window completely broke my body, and I was left terrified, lying in the sun (vurtains open to clise window). When I opened up about how scary and isolating that was, the response completely shocked me: I was told "We can't give you answers" and "Don't feel guilty" (when I wasn't even feeling guilty, just describing a disaster), immediately followed by cheerful updates about their vacation plans.
• One, only after I told her I dreamt about her, asked me how I was. I said worse. She said "oh, I did not think it could get worse" (wow, after I sent her A LOT of information on ME). I explained how some people can't even chew, are tube-fed, etc, and how scared I am. And all she sais was: oh, I'm so sorry.

It feels like talking to a brick wall. They claim to be there for me, to care, but the moment my severe illness gets "too real" or inconvenient for their mood, it seems like they they put up a shield.

I don’t expect my friends to be carers or therapists. I know they have their own lives. But these are people who have known me for over two decades. I am also aware of all the theory: "people can't understand, deep diwn they are scared of this happening to them, etc, etc". But I know I would reach out, send postcsrds or letters, or small presents...something to make them feel I'm still there.

And it seems that it is possible: I have a more recent friend who sends me little videos from her day, asks me how I am every few days, read everythung I sent about PEM, sent me a postcard, and makes an effort to stay connected without expecting anything back from me. That has made me realise how much I miss genuine initiative.

My question to you all: Am I expecting too much from long-term friends? Should I give up and let go? Honestly, I feel mad and bitter.

How do you cope with this kind of profound grief and disconnect?

Hey everyone. I feel like I'm going crazy and I just really need to know if anyone else has experienced something like this.

Since becoming severe, it feels like my brain has decided to unlock emotional "folders" that had been closed for 20 years. I am feeling those old pains and feelings with the exact same intensity as I did two decades ago, and I keep spiraling.

Honestly, I even feel a deep sense of shame about it. These old events are objectively nothing compared to what ME/CFS has taken from me (losing my kids' childhoods, my job, my career, and being isolated to the point where I barely feel like I exist anymore). Yet, my mind is stuck in this loop, trying to dissect the past, looking for "where things went wrong," or trying to make sense of things I buried long ago.

I feel like I'm going insane. I'm crying, waking up in the middle of the night, and completely trapped in my own head while my body is already drowning in this illness.

Has anyone else experienced old, unrelated trauma or memories resurfacing since becoming severe? How do you stop the spiraling when you already have so little energy to fight?

Any words or shared experiences would mean the world right now.

ETA: Thank you so much for your comments, I feel less alone. I can't answer all of you today (PEM + awake since 5am) but will as soon as I can!

Got the second one last Monday (monthly) and can't sleep since!!

Has it led to any meaningful progress? Better research priorities? New funding? Changes in clinical practice? Anything that's likely to improve our lives in the near future?

From a patient perspective, it feels like the results just stayed within the online ME community and didn't really translate into action. My GP has never heard of it. I'm guessing yours either?

I know the next step is a more in-depth genetic sequencing study, which sounds promising. But I'm wondering... is the same thing going to happen again? Will we get another valuable dataset that ultimately doesn't change anything for patients?

Please prove me wrong 🙏🏼. I'd love to hear from anyone who's been following the project more closely. Have I missed any important developments?

***
ETA: I'm not complaining or criticizing the study, this is a genuine question. I'm asking because I honestly don't understand what happened afterwards. I'm trying to understand what impact it has actually had and what the next steps are.

I felt there was a lot of excitement and hype around DecodeME, and so far it feels (to me) like it hasn't translated into anything tangible (maybe that was never the goal, again, I'm just trying to understand).

TL;DR: Called the ER with worrying new symptoms to rule out something urgent. They had zero understanding of severe ME, insisted I come in despite explaining the risks, and the whole experience made me realize just how invisible we still are. **Sad, not positive post.**

Edit: typos

******

Well... it turns out I don't actually want to die. Or maybe not just suddenly.

A couple of weeks ago I developed some worrying symptoms and called the ER because I wanted to know whether this was something urgent or whether I could safely stay home.

Horror story incoming.

I described my symptoms. Their response was basically, "Just come in."

I explained, several times, that I have severe ME and I'm 100% bedbound. I explained that leaving the house isn't just difficult, it can permanently worsen my illness. They kept insisting. At one point they said, "If you can get to the toilet, you can get in a taxi." I replied, "I have a bedside commode." For her, it was just IMPOSSIBLE to believe that I might be able to leave the house this once, and that will be it. That yes, I can seat *once* but won't make it a second time.

I wanted to shout: can you physically jump out of the window? You can. Why don't you? Because of the consequences!!! There, that is PEM explained for a 5 year old.

I also explained that when I stand up my HR goes up to 140 bpm. One of the nurses replied, "Oh... so you're monitoring your heart rate?" It wasn't what she said. It was the tone.

It felt like the moment I showed I actually know my illness and monitor my symptoms, I stopped being a credible patient and became someone who's just obsessed with their health. I wonder how many of you have had that feeling.

After almost an hour of being transferred from one nurse to another, repeating the same story over and over, being asked to sit up, do this, do that... they finally agreed to send a doctor.

I mentioned severe ME again.

He said, "Ah, ME... that's the thing where you get very tired after exercising."

...

Then I still had to go to the hospital.

Once there, I was questioned about why I was wearing an eye mask. Because the lights were unbearable. I was wearing ear protection too.

Severe sensory hypersensitivity... anyone? Hello?

The irony is that this is the same hospital where I was diagnosed with ME. It's literally in my medical records.

How is it possible that in 2026 there are still no basic protocols for ME / severe ME in emergency departments?

ME isn't even considered a rare disease. And even if someone has never treated/seen/heard of a patient with severe ME before, shouldn't they at least know about Long COVID or post-exertional symptom exacerbation?

I know: "Well, they weren't taught it at medical school." Sorry, but that's just not good enough. There should be a one-page protocol on the wall in every ER:

• Minimize light and noise.
• Minimize time upright.
• Avoid unnecessary exertion.
• Understand that deterioration can be delayed and long-lasting.

That's not asking for cutting-edge medicine. That's asking for basic awareness.

Who has to push for this? ME associations? Genuine question. Apart from the occasional demonstration in Germany, what else do we have? This should be somethIng at EU level at least! Every politician in Brussels should be hearing about this. (No idea how things work outside the EU, happy to learn).

I have my national ME association brouchure about PEM. I handed it to them. Still, they did not care. Do they believe it is a real thing? I don't think so. (I know, we knew).

Healthcare professionals know not to give gluten to someone with coeliac disease. They know not to expose someone with a severe peanut allergy to peanuts. They understand that certain interventions can directly harm patients with specific conditions. I mean, it is something that happens. Why do they don't think it's so bad if we tell them X will csuse Y, it's correlated, and it *will* be bad.

So why is it still acceptable to expect someone with severe ME to travel unnecessarily, sit upright for hours, tolerate bright lights and constant noise, and push far beyond their limits?

Do we even exist outside our rooms? Do we even exist outside this sub? I felt invisible. The rules that have been imposed to me by this illness, that I MUST follow, or else. The fear of that "or else". Is this real, am I just going nuts in this dark room all day? That's how I felt (It IS real and it IS ignored).

I always knew ME was invisible. We talk about it here. Experiencing just how invisible it is, even in an emergency, was something else.

I'm just... incredibly sad and hopeless. There is no help, there will never be help. We are on our own.

That's about it. I was wearing an eye mask and noise cancelling headphones and I smelled the grass!

I can't describe the feeling. 9 months in a dark room and out for some seconds on a summer night, smelling the grass!

I'll need to post about the trip to the ER itself some other day.

No one could understand this but you, amazing bunch.

Any encouragement words please, or promising research, or whatever...I just can't do this anymore.

Currently fighting for decent care. I'm too tired to fight. Too tired for applications, etc.

I love him, but I am currently sitting in the car, engine running, waiting for him to finish his "pre-trash-removal" shower.

My husband has a compulsion where he *must* shower before stepping out the door. It doesn’t matter how urgent or mundane the task is, he insists on getting squeaky clean first.

• Late for child pick-up? Doesn't matter. Shower.

• Running behind for a party? Shower.

• Need to take out the trash? Shower.

• Quick 5-minute run to the store? Shower.

Does anyone else live with someone who has this kind of weird time-blindness/obsession, or am I just married to a weirdo? Please tell me I’m not alone.

TL;DR: My husband showers every time we leave the house, even for the trash. We are always late. Send help.

​I missed my child’s graduation event today. He was the only one there without a parent, and he cried. I am absolutely devastated.

​I am just missing their entire childhood and causing them pain by being sick. I can’t stop crying, which is just making things worse (I will pay for it), and I feel completely trapped in this cycle.

I’m at my breaking point. I just can't do this anymore. I don't want to. Day in, day out, stuck in this bed, we might all be better off if this fucking illness would kill me.

ETA: Severe/very severe parents, how do you cope? Please give me some advice, or any words of support. This is by far my worst lost because of this illness. I can't even beguin to describe how shitty I feel.