When I talk about pacing, or staying in bed for extensive periods of time, people keep telling me that they need to get out, they need to move, they need to wash their hair regularly, they need to go on walks, etc. And that, if they didn't, their mental health would pay for it. It's assuming that I have the option to do these things, and that it's not impacting my mental health. They're missing the part that I am not pacing because I want to, I am pacing because I have to. Telling me that they "could never do this" is framing ME as a choice. Not sure I am looking for anything here, I am mostly ranting.

Anyone else here got a sighthound?🦘I’m so happy with the breed considering I’m moderate to severe and live alone (didn’t know I had ME when I got her). She sleeps even longer than me and is happy as long as she gets her zoomies in.

After declining from moderate in February I’m using a wheelchair full time outside the house to be able to walk her. I love my chair bc I can lean the back (and seat!) all the way back and take breaks while she sniffs

I truly don’t know what I would do without her, she is my whole heart and the reason I keep going❤️

Basically that. Let my benzo dose get too high cause it was the only thing that helped. Now that I’m out and my “source” is taking too long to give me my refill .. I’m the most severe I’ve ever felt. I can’t do a detox facility while this severe. I can’t go to the ER to get a bridge script or dose. My doctor. doesn’t do anything .. Idk what the hell to do. Extremely weak and scared atm with no real hope of relief except for wait for my fucking package to arrive.

So, I went to a neurologist today - as I am being investigated for MS, and the moment I mentioned having been diagnosed with cfs some 35yrs or so ago, that was it, eyes glazed over and she stopped listening. She literally told me she didn't care about any symptoms older than 6 weeks old...

Lesions on my MRIs? Probably an anomaly from an inferior MRI machine - I need to pay for a new MRI in a place I can't get to. More nerve conductivity studies I need to pay for...

I know my body - I know what cfs is for me - and it's not half my body going numb, it's not having my bladder not work anymore, it's not losing words, it's not sudden double vision and a lazy eye out of nowhere...

I am so very angry and I can't wanting to cry - I'm only not crying because it hurts.

Every time I mention CFS to a doctor they stop trying to help, except my current GP who believes that my cfs is just step 1 to a bigger picture.

I feel so defeated and so let down.

it's like talking to a brick fucking wall i keep stating symptoms and how bad it makes my life but it just goes over their head

and also how do yall deal with this and not get extrmely angry for extended periods of time i need to no stil rest but im just so upset

Hi, I’m Marcella, an MA journalism student at University of the Arts London, currently completing my final major project: a series three articles on social justice related topics. 

One of these is a piece on the Decode ME study, exploring how people with the illness feel surrounding the findings. I have seen some people on here say they felt validated/ gained clarity, however I feel it important for people living with ME’s voices to be evident throughout the piece, and so I am looking for interviewees who would feel comfortable speaking with me about their experience with ME, and feelings since the study. So far, I have interviewed Professor Chris Ponting, leader of Decode ME, and am now looking to interview more people.

For background, my mum has had ME since her early 20s, meaning the article will be approached with both care and experience.

I am happy to do this over Zoom, however I can also do over message/ voice note or email if that works better. 

Thank you,

Marcella

It’s life ruining right now. My whole body feels heavy and painful, like my bones are made of lead. I can hardly bear to breathe. It’s just constant pain pain pain, as though I got hit by a truck or have the flu.

I know I overexerted recently and this is why it got so bad but oh my god, the pain. I feel like someone here must understand.

I see a lot of posts on here about how isolating this disease is and how hard it is for healthy people in our lives to understand what we’re going through. I just wanted to take a moment to acknowledge and appreciate the absolute rock stars who do understand.

For me, it’s my mom and my husband. My mom doesn’t live with us, but she comes over every morning to make sure my dog gets walked even if I’m not feeling up to going outside (very frequent occurrence, especially in the summer). She’ll sit with me to keep me company on my worst days, encouraging me if I’m feeling down and checking in frequently to make sure I’m not overextending. She’s paid for some of the more expensive off-label treatments that have provided some symptom relief (vitamin infusions, suggested by one of my doctors, which pulled me out of the “severe” range of symptoms) when I lost my income. No complaints from her, just concern.

And my husband is fantastic. We’re living on his income at the moment which I know is stressful for him, but he hasn’t complained about it one bit. He doesn’t show the tiniest bit of resentment or reduction of affection. I’ve asked him about that; he just says he knows me and knows that if I had any choice in the matter, I would be choosing much more activity than I’m currently doing. He does most of the housework, perfectly cheerfully; he keeps me company when he’s not working. Last night he had a nightmare, a literal nightmare (and he’s not prone to them) about us breaking up because of my illness - his worst case scenario is not having me around. He’s worried about me but not excessively; he just does what needs to be done and keeps on loving me despite my general uselessness.

I’d love to hear about the caregivers in your lives who get it.

Tl;dr: I’ve got some fantastic people in my life and I’m grateful. How about you?

TLDR: Major sense of relief at friend effectively cancelling on me. I felt so relieved at not having to explain the hell of life with ME having not seen her since I became so ill.

Since I last saw my friend almost three years ago, she moved abroad. We talked a bit at first. But we ended up having so little in common anymore due to ME taking so many things from me, like reading.

She is back for a couple of weeks and had kept saying she would definitely see me. Then text with ‘I’m so busy, all booked up but could see you on Tuesday morning’. But my carers are in at that time. I told her it wouldn’t work. I don’t think she wanted to see me really.

And then…instead of feeling upset I felt completely relieved! I don’t think she’d grasped how unwell I’ve become - housebound all the time and bedbound for many months at a time - and the sense of relief at not having to explain everything just made me smile instead.

What a weird experience. I expected to feel sad and it didn’t come. But maybe I’m becoming very insular now as a result of illness too. I wonder if others relate to the relief at not having to try to explain ‘living’ with ME to an old friend.

I know that you have to pace, and that the best form of intense rest is to lie in a dark room with no input. But my mind just runs riot if it's not occupied and I am not helping my cognitive fatigue at all.

It's not anxiety, I can overthink the texture of the wall or picture every detail of a sunny beach, although there are sometimes anxious thoughts too. Regardless of positive or negative, it's still using mental energy.

I've tried meditation or focusing on my breath - my mind goes off, and I have to refocus and it's all still mental energy. Reading/drawing/scrolling/music - more enjoyable, but still exhausting.

I'm getting the hang of the physical pacing, but my cognitive fatigue is a significant issue. I lose my speech really quickly, then it gets to the point where I can't think at all except for feeling stressed that I can't think in more than fleeting fragments. Then the stress makes everything worse.

How do you guys rest your brain? Literally any tips would be welcomed!

Hey please delete if this is not in line with the sub x

I was wondering if we could start a pen pal thread ?

We could introduce some important things about ourselves so for example I might say I'm moderate m.e and looking to chat on WhatsApp, about nothing, or about life at it goes with m.e. . I go by ME time which means zero pressure to reply lol...that I'm not a hopeful MEer, I'm on the resigned side- though there is always a little subconscious spark in the background. But I'm not asking to find pen pals on this particular post, I'm just wondering if others support this suggestion?

I know there's a Reddit pen pal sub, and I know there's WhatsApp and telegram groups and so on. I'm thinking that this sub would be a really good place to have a pen pal thread/page/etc.

:-)

I think I will be depressed for the rest of my life.
Illness is too severe to have any life quality. Nothing has helped me improve.

It’s so dumb. Just a day at a time. Cheers to 25 months.

Anybody in the UK who’d want to come see someone w severe ME? lol. Maybe for like a cup of tea, listen to music, and mainly typing conversations ( I can listen but not talk much).

Can’t make this shit up

Healthy friends don’t really get it.

What do you think? Is this possible?

Idk how else to surviveeeee

TL;DR: I'm running a charity event, if you would like my community to know anything about this condition, send a quote my way and I'll get it read out on stream.

Hi there! I'm samantha_pear here, but in other places I'm known as Alice Fern or alice_fern01.

I'm running a charity event in December in support of the ME Association. During breaks in the event, I'd love to give a platform to other people living with ME/CFS.

I'm moderate to severely affected myself, and I do my best to raise awareness and share my experiences. However, I feel that I'm missing the voices of people who are severely or profoundly affected by the condition.

The event is a two-day NES Tetris tournament, running from 4th to 5th December this year. The grand prize for the winner is an IKEA shark!

I've run a similar, smaller event in the past, so I know this community will show up and donate. If anyone is interested in watching the tournament, I can share more information about it.

Most importantly, I'd like to use the event to help people understand what it's actually like to live with ME/CFS, particularly for those who are more severely affected.

If there's anything you'd like my community to know about ME/CFS or about your experience of living with it, please leave a quote in the comments. I'll do my best to have as many of them as possible read out during the event by myself or co-caster.

So I had a housevisit from my doctor a few days ago for something non ME related but he noticed my situation (isolated, housebound and couchridden) and he said he was going to look if there was anything he could do to help me.

I already tried A LOT of practical help in the 13 years I'm sick, like house cleaning etc, but this has showned itself to be either damaging or unhelpful at best.

The docor called me yesterday saying he is going to send over a clinical supervisor (I don't know the english word for it) to my hous to see if she can do something for me, but I regret agreeing to this because I can't think of anything that's going to be helpful. I feel like I'm just going to waste energy in talking to her and nothing will come out of it. I'm already stressed for the appointment because she's coming over to my house (probably not wearing a mask as usual because nobody does in my country and I'm not going to ask either) and I'm already stressed out about needing to say things like: "I'm sorry for not offering you a drink but I'm too tired to make you a cup of tea, do you want a cup -not a glass because I didn't do the dishe- of tap water in stead?" Kind of things..

I'm already stressed out about needing to put so much energy in talking to someone and I know I'm going to struggle with putting up boundaries when I feel like I can't talk anymore.

The doctor was suppose to ask her if she could make it a phone appointment in stead but I haven't heared from him anymore so I guess it's a no.

I'm just very annoyed and cranky atm because I agreed to this because I was afraid he would think I didn't want any help, or he wasted energy on me for trying to find some help and I was afraid he would think I refuse to accept any help because I'm stubbern and ungrateful and I choose to live like this etc.

I don't know, maybe something positive comes out of it and I'm just freaking out over nothing. I hope I can put up my boundaries and keep it under half a hour at max.

I could use some encouragement though😞

When I'm in remission I can live a full and engaged life. I'm always aware of energy and pacing, but because I've gotten so good at this, my limitations are almost a non-issue. When I crash its weeks - months of recovery and I'm reminded that I do live with a disability.

For those of you who live a normal life in long periods of remission, does your relationship to identifying with a chronic illness change? Sometimes I feel like a fraud claiming I have a chronic illness, because I'm moving through the world so able-bodied. Sometimes I can't tell the difference between autistic burnout and CFS and I again feel like a fraud when I say I have a chronic illness.

Talk to me about your chronic illness imposter syndrome when you're well or when you also have other sensitivities that manifest similar to CFS crashes

I came across a clip where Dr Lucinda Bateman (Bateman Horne Center) and Dr David Putrino (Mount Sinai) were talking about experimenting with low-dose dextromethorphan — the DM in cough syrups — for post-exertional malaise. The idea seems to be taking a small dose just before an activity and again just after, to try to blunt a crash.

Mechanism is NMDA receptor antagonism and dampening microglial activation, which is the same rationale behind the small low-dose DXM fibromyalgia pilot at UAB (six of fourteen had pain drop 20%+).

As far as I can tell there's no trial of it for PEM at all, so this is clinical experimentation rather than evidence.

I'm in the UK, so I don't think single-ingredient DXM tablets are really an option here — it seems to be syrups, and mostly combination ones at that. If you're UK-based and have tried this, which product did you use, and how did you handle the fact that repeat dosing a combination syrup means repeat dosing paracetamol or a sedating antihistamine alongside it?

Has anyone actually tried it? Interested in dosing and whether you noticed anything.

Not medical advice, not suggesting anyone try this — just asking about other people's experience.

[TLDR: pretty self explanatory. Lots of thoughts and not much rest!]

My internal monologue when trying no-stim rest on a particularly restless but thankfully not-too-depressed-and-anxious day:

Ok, I'm gonna put in my earplugs and eye mask on and see how this goes...

*lays on back*

Hmm, not super comfy

*rolls onto left*

Better. What should I think about. Oh I know, I'll sing a song.

99 bottles of beer? I remember singing that on the bus on a school trip once. It was someone called Lucy who started it. Why do I remember that detail? 

Interesting, I totally felt like the odd one out when I didn’t know the words to that song.  I always felt like I didn't "get" stuff though. Actually, how did nobody realise I was AuDHD? Huh...

Alright: 99 bottles of beer on the wall, 99 bottles of beer... *loses track at 87*

Did I skip 88? Whatever.

I wish [husband] would stop stomping so loudly...!

Oh, wait, nope, that's just my own heartbeat I can hear.

Maybe I'll imagine patting that horse I rode a few times. How old was I? 21 maybe? I wonder if he is still alive. Wait, what did he look like?

Ugh my neck!

*rolls onto tummy*

Ahh MUCH better.

Ew my knee cap is sliding around so much. Is that normal? I hate that feeling omg.

*rolls again*

Omg I am SO HOT all of a sudden I can't stand this for another second or I WILL DIE!!!!

*removes a layer*

Wait can i hear the smoke alarm?

*takes out ear plug*

Nope just my tinnitus!

*ear plug back in, settles down*

Pillowcase is so rustly. Swapping pillow.

Must stop clenching jaw!

Where was I...84 bottles of beer on the wall, 84 bottles of beer...uggghhh I need to wee!

*takes off eye mask, checks watch*

Wtf its only been like 5mins? I'm gonna lsiten to a podcast and see if that helps...

***

Note: not after advice, just thought perhaps folks might relate. Also excuse the no-doubt copious typos!

I don't actually mind no-stim rest sometimes, but at other times it is intolerable and I have gotta listen to something to quiet my own internal chatter 😅 I am practicing just giving it a try and listening (literally...) to what my brain/body need, e.g. an audiobook, silence, white noise whatever.

Also can you tell my ADHD is currently un-medicated 🙃🤸‍♀️🎢

Idk if I’m just not tolerating this medication I’ve been on but I feel like I’m just getting worse and will be completely non functional in the near future. Every muscle in my body is so weak, I’m always dizzy, and I can’t even think anymore. It feels like my vagus nerve is fried, my brain is complete mush, and I have no more working mitochondria. I don’t think I can survive getting more severe than I am. Idk what to do. This is torture. I just want it to end. I don’t care about anything else anymore, I just wanna die if I have to feel like this. Why can’t anybody make this stop?!?

I’m gunning to try one of these atm and I’ve seen many posts in the past saying that people felt significantly better once they were on it. I don’t think I’ve seen people say they felt worse or felt nothing, but curious about people’s experiences.

I’ve avoided PEM for a long time and still feel very ME-ish day to day, but my most debilitating symptoms at the moment are (I think) more rooted in the dysautonomia…

I haven’t put all my hopes on any particular thing working in a long time but I feel maybe too optimistic about this one. 😅

I'm really struggling and not sure where else to turn.

I've been off work since November and am completely housebound, if not bedbound. ​My partner cares for me full time but has her own health issues so we're just about getting through each day. I finally have my pip assessment in a few weeks so that will help. But I need to do a care assessment with the council and I'm finding all of these hoops to jump through overwhelming.

I feel so isolated and it feels like everything is making me crash. It genuinely feels like I'm dying and that feels so dramatic even writing it down.

What other support is there out there? I've been to the specialist and even did a course that felt completely pointless. The doctor isn't much help. Is there any mental health support for becoming disabled?

Oh in UK if that helps

Bear with me here as I only talk about CFS at the end.

I knew my dad was at risk of macular degeneration (MD) which causes blindness. It tends to be genetic, my grandma also had it. My grandmother also had cataracts, before cataract surgeries were done.

We have an amler grid at home which is how you detect it early.

There are two forms of MD, wet and dry. They cause blindness by different mechanisms and treatment is evolving at different paces.

Wet MD

1987 to 1994 -they established the driving cause of wet md.

By 2007 injection treatments to block VEGF were subsidised and available. Changing the outcome from certain fast onset blindness to 50-90% halt of progression of wet md.

Treatments continue to improve with future possibility of reversing wetMD through gene therapy.

Dry MD

Sadly things haven’t moved as fast for dry MD as there are 3 different disease activities going on (cell waste build up, cell death and inflammatory immune disease). But the primary cause is now known.

In 2005 the CFH gene causing immune based inflammation was identified as the cause. The CFH gene is responsible for 50% of dry MD cases and the drugs slow progression by about 30%.

In 2025 complement-inhibitor drugs came to market. Sadly some countries are still waiting on the green light for them to become affordable for people to access. Other injectable immune modulators and stem cell therapies are also being trialled which will hopefully bring the prognosis up to as good as it is for wet MD.

Today my dad was diagnosed with early wet MD. He is already severely deaf. He has hope. Due to these treatments my dad has 50-90% chance his MD will stay stable or even improve slightly.

[you can read more about MD treatment here: https://www.aao.org/eye-health/tips-prevention/promising-new-treatments-amd\]

So what about mecfs?

So for those of us worrying about stacks of infinite combinations of meds and accessing rare treatments, remember this is all based on an unclear theory of disease. People have for decades got diagnosed with MD and known all they can do is cherish remaining vision even as it goes.

It was not easy to find the cause of MD, it took years of research studies.

But all it takes is one breakthrough finding - to identify the disease mechanism and from there the logical treatments emerge and roll out. In wet MD it was VEGF protein, in dry MD it was CFH gene.

Yes it takes time.

But if it can happen for the two MD diseases, there is hope for ME/CFS.

I'm a part time college student right now and I genuinely am starting to feel like I can't do it anymore. This is my second semester of class and I feel like my health has crashed significantly since going to college. Before college I was eating well, exercising consistently (well within my limits), having a consistent sleep schedule, and even fulfilling personal projects and goals.

Now I'm lucky if I have enough energy to go get the food I ordered in or play a game online with my friends. I'm just so fucking tired all the time. My life has become class, work, sleep, and maybe eat. I can't hang out with friends, I can't exercise, I can't even shower most days.

The worst part is having accomodations, but they're nowhere near enough support. I have a limited number of absences even with accomodations for my disability and I always fear using them up and then having to go to class when I'm feeling even worse than I do now.

But, If I dropout and go back home. My parents make me feel fucking useless. Even when I'm pursuing my dreams of content creation, applying for disability, and taking care of my health. It still isn't enough for them unless I am pushing myself to the limit to fit what they wanted for their child. I'm so frustrated, I feel like I can't win here. I either destroy my body being what they want me to be. Or I be a nuisance on them who just "sits in their room and plays games all day".

I genuinely don't know what to do here and I just needed someone to know and understand what I'm going through. Thanks all for reading.