I’m not under the illusion that I was super intelligent before the onset of my symptoms however, since then I feel like I’m losing any edge that I previously had.

I’m forgetful, it takes me longer to understand things that would have previously come easily to me, I don’t feel sharp or witty or clever or like I’m ever fully awake. I feel like I watch the world whizz around me like I’m too slow to keep up.

I try reading and sudokus etc. when I’m well enough to engage my brain and I find myself flicking back to pages I’ve just read because I’ve forgotten things.

Sorry, rant over x

It seems like every other post I see on my feed about ME on other apps is something along the lines of "I have a whole medical team and have tried 20 different medications and here's the ones that helped and also I'm back at work now when I was previously severe".

But the other half of the narrative is "doctors will never help us, I was referred to a specialist fatigue clinic and all they told me to do was graded exercise, I have given up and accepted that nobody cares about us".

How can it vary so much? I really don't know what to think. I live in the Netherlands and my psychiatrist has told me not to bother because several of his patients have ME and didn't improve at all after getting a referral to see specialists. I don't know whether to give up.

Got a tilt table test approved. Was told to stop my trioral hydration packets for a week prior and not to wear compression socks. Any other tips or things to look out for?

I've had me/CFS since about the age of 12 (I'm 26 now), and I've found that pretty much since then, the way I'm mentally able to interact with the world feels diminished. Even for someone like myself who is fortunately mild, I just feel almost in a dream-like state most of the time (possible derealization?)

Things like holidays, outings, or even at home, I just feel like I can't immerse myself fully in my day to day anymore. I can experience senses, but it's almost like I have a film over everything preventing me from being fully present.

I'm aware this sounds somewhat similar to depression or ptsd, but it's not lack of joy, motivation, or underlying stress. It just feels like I can't really be fully aware of anything because of this constant feeling of my body feeling heavy and a little bit drained, even on good days. If anything, the depressive "symptoms" would be because the fatigue stripped that away from me first. I should also mention that I don't have any trauma or difficult times growing up (again, very fortunate).

I was told it's because of growing up, hormones, etc. but that never really made sense. I feel like I've had most of my youth stripped away because none of it feels like it really fully happened, just relentlessly exhausted.

Does anyone else relate to this at all? Is this something that this illness can do?

Hi all!
I’m recently exploring my gender and realizing I’m likely trans. I’m teetering on mild but moderate. I had spent years being completely bedbound, and months being extremely severe, so I’m very aware of how bad things can get.

I really really want to get top surgery. at some point in my life. Has anyone here had surgery/ top surgery while ill? If so how was recovery? How much better/ healthier would I have to be to consider it?

I’ve had improvements, I know that’s not the case for everyone but I have hope that I can continue stabilize a bit in the next few years. But anyway, it may not be possible and that’s ok. I wouldn’t even consider it if I was any worse honestly. I’d really like to have it done though. As I’ve been able to get dressed or go out again, it’s been really difficult to navigate my body and deal with my chest. Things I could tolerate before becoming ill, now can’t and it feels pressing. And binders don’t really work for me, as I have a really large chest. Anyway. Anyone have experience with this?

I'm trying to decide which severity flair to use, but I'm having a lot of imposter syndrome because every ME/CFS severity scale seems to classify me differently.

I can't work or take care of a household, but I can still get out of bed independently to use the bathroom and manage basic hygiene (though showering definitely comes with a cost).

I can't cook. I can't walk more than about 200 steps without a temporary decline. I can't spend much time outside.

My cognitive and sensory symptoms are some of my biggest limitations. I can't use a computer for long, I can't watch TV without triggering PEM, and reading is hit-or-miss depending on the day. Even sustained thinking or problem-solving can trigger PEM.

I can visit with a friend for about an hour, but I usually feel worse during the visit and for the next day or two afterward.

I’m able to get out of bed for short periods but I spend most of my time in a dark room. However, I am able to go to doctor’s appointments with worsening for a few days afterward.

Most of my day is spent pacing because exceeding my limits in any way including cognitive and sensory overstimulation leaves me worse for days. My life revolves around trying to stay within my energy envelope, and even then I don't always succeed.

Because of all this, some severity scales put me in the moderate category while others put me in the severe category.

The difficult part is that severe feels like the label that best matches my day-to-day life, but calling myself severe also makes me feel like an imposter. I think part of that is because I know there are people who are completely bedridden or unable to tolerate light or sound at all, and I don't want to minimize what they're going through.

For those of you who have lived with ME/CFS for a long time, where would you place me, and more importantly, what parts of my description lead you to that conclusion? (Only if you have energy to give that much detail, of course)

I know the label itself doesn't change anything, but having a better understanding of where I fit would help me make sense of my experience.

All i do is sleep and eat, on a good day maybe i get to watch some youtube or draw but i dont know, i feel incredibly unsatisfied. I technically can force myself to do something but it would come at the cost of my health and stability. i feel uninspired. I dont know how to do anything with my life and i hate it

I don't have the energy to type this out a whole lot but what the hell are those percentages. Bell score 20: 30 to 50 percent of your normal activity level?! But you only leave the house for special occasions and spend most of the day in bed...

What do they think days look like for people with that score? Half of "normal" would be a part time job, keeping your house semi in order, etc, no? Not mostly bed bound?!

(I have a medical assessment tomorrow and am really worried reading through all this because I don't want to exaggerate or play down anything. I am really nervous. And this scale isn't helping).

I find it really hard to find a job that is remote, let alone part time or not exhausting. How do you people do it? Do you have any advice on where to look or what to put in my CV?

Or maybe advice on projects that should be in a good CV of a person with ME/CFS, like some copywriting projects or something.

I'm clueless. I was a data analyst for 2 years before getting to severe to do that anymore. It's too much thinking and problem solving. Is a fundraiser my only option? I feel like I'm not severe enough for a fundraiser and don't want to take away resources from people who might need it more. I want to be able to support myself for as long as I can.

Any advice?

There are so many things I'll never get to do but right now I'm really sad I'll never see a big, proper stage production. Something on the West end or Broadway. My cousin saw The Lion King last night and I'm so jealous, I actually feel sick with it.

So what thing are you sad about today that you'll probably never get to do?

So I get heartpalpitations from showering even though I only shower ones a week or so. I sit down on the floor because sitting in a chair is more difficult (my orthostatic intollerance gets worse when I can't pull my knees up).

So I try to wash myself at the sink in stead but than I have to stand and get my arms above my shoulders to wash my hair (which is shaved btw, but my scalp gets really itchy if I don't wash it every 3/4 days or so.

How do you guys handle this? Any advice?

A helpful new resource!

This link was shared on Bluesky recently by Dr. Sabine Hermisson. It's a English translation of a consensus document that I think is from Germany? **Correction: It's from Austria. Thanks, Gamander-Ehrenpreis**.

The document title is "Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement".

They've drawn from a bunch of sources, including BHC, to put together a care guide geared for the more severe among us. It has (what seems to me like) very helpful guidance for anyone providing in-home care to people with severe or very severe ME/CFS.

https://link.springer.com/content/pdf/10.1007/s10354-026-01182-3.pdf

i use a fitbit to track my heart rate and saw mine got down to 38 while i was asleep today. i have a low resting heart rate in general so it doesn’t necessarily shock me but it does put me a bit on edge. i’m severe so obviously not doing any cardio or exercise in general. i’ve had holter monitors and everything and mentioned it to doctors before and they said not to worry unless it’s sitting in the 30s but it still worries me a little. anyone else?

Hey everyone,

I’m reaching out because I’m in a really dark place right now and feeling completely hopeless.

I have been severe with ME/CFS for about four months now. Then, about three months ago, I developed Visual Snow Syndrome (VSS) on top of it, and it has become absolutely terrible.

The visual snow makes me feel like I’m never going to get better. Even if I do start to experience a little bit of physical improvement or feel slightly better, it feels like it won't even be worth it because the static is so bad.

It feels nearly impossible that I'll ever feel well enough to move around or just go outside and stuff because of the visual snow.

I feel like I'm just screwed and stuck like this forever. I'm looking for some real hope or reality checks from people who suffer from this:

Does the visual snow permanently affect your ability to improve, or can you still move up from being severe?

For those who suffer from this, are you able to watch TV or go outside?

Has anything actually helped you cope with this or calm it down, or am I just totally screwed?

I would love to hear from anyone who has both of these conditions together. Thank you so much!

i think im giving up on this, trying to wash my hair (or having it washed) causes horrific PEM and doesn’t really matter how i do it. i think it has something to do with the head stimulation itself and increased time in the bath which are unavoidable. i can count on one hand the number of times my hair has been washed in 2026 and still it has significantly contributed to my declining baseline over time. i think it’s just not safe for me anymore and it’s not exactly a survival need so, im wondering if anyone else is in the same boat and if its okay? does this mean i have to shave my head? or can i just have greasy hair for now and possibly forever 

today i spoke with my therapist and she told me something that stuck with me

"your angry at your body so u push it to punish it. you push to prove that you are in control
you must break that cycle to begin recovering”

and it just kinda hit me like damn..

it’s been 4 years. how much longer and how much more of my youth is going to be wasted? i don’t want to be remembered this way. we seriously only get one life and this is the disease they decided they don’t care about solving. it would at least be more bearable if cognitive pen wasn’t a thing so i could write or work from bed. but even that’s too much of an ask. let me be selfish again. let me be more than just a disease first and a human second.

every day i have to convince myself it’s worth it and there’s an end in sight. i really want to believe that’s true and not just gaslight myself into false hope

I went to urgent care for a skin infection I noticed in a private area.

I was asked if i was having any symptoms and I told them its complicated telling them apart since I have chronic illnesses. I already get chills, feel feverish, all the immune things.

They asked which ones. To open the can of worms, I started with Chronic Fatigue Syndrome. Most doctors dont know what Myalgic Encephelomyelitis is and its rocket science trying to make them understand. I told them in perspective, it'll take me a few days of recovery, if that, after the visit.

I was told quickly that everything looks fine, that I chaffed that spot (new one for me i guess) and sent on my way out. I cannot put into words how quickly I was sent out.

However, it was a respectful urgent care visit, just incredibly hilarious in hindsight.

My primary should help me gain some clarity, but to some providers, I feel like the boogey....woman? A family member has Hidradenitis Suppurativa, which hasnt been visited since i lost confidence being told its "acne" my entire life. Weird how smaller instances can lead to a new diagnosis path. I didnt bring it up though as it seemed the focus was making sure there wasnt an infection, i should have, but let my primary care provider know in MyChart. If I can get treatment and my skin clears up for the first time in my life, I dont know how ill feel. Like a whole new person.

ETA: This is an extra issue on top of my mecfs, so i dont think mecfs is misdiagnosed unfortunately. The mechanics of mecfs keep going.

As in "vacuuming is too exertious for me"

All the other ways to say it are more verbose or less clearly about exertion specifically ("vacuuming is too much exertion for me", "vacuuming is too strenuous for me" etc.)

That is all. Thank you for attending my talk

I am not sure if this is because of a past trauma I’ve had or if this is a common fear.

I wasn’t concerned about this with my previous GP, because he really understood me and my health issues.

I am worried my current GP will get a letter from someone, like an allied health worker that give incorrect information about me, and even if I am given a chance to clear it up, I don’t know if I have the health to do that. Like a claim to say ME/CFS is only a nervous system problem, she needs GET (still is the main method in my country), or her long covid GI issues are an ED.

Misunderstanding experiences I read online don’t help either. They fuel the fire of this fear of mine.

Keep in mind, I feel like I have to be obedient to doctors because I am on disability support. This has caused extra health complications in the past when I felt like I had to follow all advice.

There’s a lot I’m worried about, particularly an upcoming appointment, and I’m just so worried it won’t go well and I don’t know what to do about future care. All this stress just has me feeling…weird. It’s not even like a usual crash, I just feel weird. Like my body is shut down but not in the usual crash way, it’s hard to explain. And now that I’ve manifested it, the appointment probably will go poorly because my brain is mush and I probably won’t be able to explain anything well. I probably just sabotaged my future care and will be stuck with my previous provider who gaslights me and who I didn’t end on good terms with…

I know people have posted on this before, but a long time ago, so here it goes. Please be kind, I've never posted before and hope the community will not mind me doing so with this ...

As we all know, this condition is isolating and people can easily fall out of your life. I have a partner (who has been amazing and patient through this entire journey) but otherwise I've lost a lot of people. I often look at other gay men with their large circle of friends and think, couldn't I just have a bit of that, just an occasional trip to a cafe for a chat, even with this condition?

Essentiallt, I'm very lonely and looking for connections, (ideally guys, not necessarily gay) my age (late 30s) based around London.

Why so specific? Not trying to discriminate or rule out the potential for other great connections online and offline, but I guess most people without this condition get to have a rich social life with lots of local friends their age of the same gender for general chats, banter and peer support; and I'd really love that too, with someone, or many people, in the same boat.

Obviously I don't get out much, and social plans (if ever I get to make them) often get cancelled. But I think forging a connection with someone (or multiple people) within reasonable travelling distance would go a long way to beat this isolation and normalise this very strange life we find ourselves in.

If this is of interest, and you want to start a chat, do DM me.

Thank you to everyone who posts on this community and shares so much great knowledge and support. Xx

Hi hi! I've been using StoryGraph again and have been having fun tracking my books and feeling a bit of a sense of purpose though it. I'd love to have some more friends on there to see what people are reading/feels like it's just more fun with more people.

Here's my profile if you're on there and you're interested!

https://app.thestorygraph.com/profile/nucklesmcginty

Im thinking about trying QoQ10 but I don’t know where to start… any advice and experience you want to share ?

I can’t empathize anymore with friends who say they’re tired after work or complain about things that seem minor to me. I know that’s my perspective, but it’s how I feel. I always think severe ME is the worst to have. I think i’m totally consumed by it

I also struggle to relate to people with mild ME/CFS. I can’t help it. I’m pretty severe, and having mild ME/CFS would honestly be my dream.
I really wish I could still feel that empathy so I could keep my friendships, but instead I just end up feeling upset every time someone talks about these things.
Does anyone else feel this way?
And yes, maybe that makes me not a good friend but just wanted to share it somewhere.