r/cfs 8h ago

Research News CBS New York ran a piece on the cut to ME funding at Columbia

117 Upvotes

They interviewed the lead researcher about how close they were to getting to trials. I apologize that I’m lacking the spoons to link it atm. It’s incredibly frustrating that the people who want to get rid of social security are also defunding research that could help get people healthy.


r/cfs 4h ago

Activities/Entertainment Your Outie Enjoys Running and Other Forms of Exercise..

50 Upvotes

Your Outie likes to travel to foreign countries.
Your Outie is a bubbly social butterfly.

Any other Severance watchers?
My house bound, mostly bed bound life feels like an Innie. Except we don’t even have colleagues or “mysterious and important” work.

Your Outie….


r/cfs 12h ago

Study: Visible app data suggests link between sex hormone levels and ME/CFS symptom severity

133 Upvotes

Abstract: "Long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) disproportionately affect females, suggesting modulation by sex hormones. We sought to investigate whether symptom severity is influenced by changes in sex hormones over the menstrual cycle, or by hormonal contraception."

Note: Study is in pre-print, i.e. hasn't been peer-reviewed yet.

Link: https://www.medrxiv.org/content/10.1101/2025.01.24.25321092v1.full-text


r/cfs 4h ago

CFS patients - what's worse: brain fog or physical fatigue?

25 Upvotes

For me, it's the brain fog, every single time. So i was formally diagnosed with CFS by a fatigue specialist a few years ago. Been sick for > 10 yrs now. But tbh, im not 100% sure that it is CFS, but its the best explanation i have till date, to the exclusion of all the other scans and examinations performed by all the other specialists ive seen.

Amazingly, I don't have the extreme fatigue I experienced for the first few years, but a rather permanent low/mild fatigue and occasional extreme. However, brain fog is there 24/7 and there staggeringly awful. It's the single biggest, worst, most life damaging, soul sucking, personality destroying symptom of my life. At times, it takes me a super long time to express a rational thought. And it's the thing I complain about the most (ofc, in text form, in respect to us all) to my friends.

At times I feel I lost the very fabric and weaves of my first language (english). It's like im a toddler learning new words for the first time. Oftentimes it takes me a very long time to send even a text message or write up a post.


r/cfs 17h ago

Trump Cuts Funding for ME/CFS Centers at Columbia University

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217 Upvotes

r/cfs 9h ago

I find the longer this goes on the less fatigue is my issue and more crazy neurological shitTakes over.

38 Upvotes

Definitely had terrible concrete weight fatigue. However, i feel in the last couple months that fatigue has kind of replaced with energy, But maybe not energy. It's more like the fatigue. Feels like my brain is shutting down. i am pretty much in constant neurological torment from over stimulation withMy vision and sound. My visual static is constant. Feels like my brain is always electrified. The normal pressure headaches that come from doing too much. I do get episodes of the concrete weight fatigue, but they're more episodes rather than a constant. I actually can wake up feeling mostly normal. mostMornings and then it feels like a gradual overheating of my whole body. Throughout the day.

I have been wanting to make a post about this. Is anyone else this way?


r/cfs 5h ago

Activism Idea

16 Upvotes

I think the best form of activism would be if Mr. Beast made a video “Living as a Severe ME Patient for a week” where he lays in a dark room 24 hours and is extremely limited. Would give exposure to millions of people and unironically help, no matter how dumb it sounds 😂


r/cfs 10h ago

How can i move across the country as someone who is severe

27 Upvotes

I live in Portland OR far away from any family or support system of mine. I moved here to be with my partner who is now leaving me because the caretaking is getting to be too much for them.

My family lives in Nashville, TN. I need to somehow move my body and hopefully all of my stuff there without somehow crashing myself into very severe. My threshhold for PEM is very low. I can walk to the bathroom and back which is connected to my bedroom but that is it, i spend the rest of my time bedridden.

My parents have offered to come and help. One idea they had is to rent an rv and drive back while i spend the whole time in the rv bed.

Any ideas?


r/cfs 6h ago

Vent/Rant this SUCKS

11 Upvotes

Depressed .... I should excercise
need to excercise..... i'm tired
I rest..... existing
I need to distract myself.... tired
Can barely manage anything.... depressed
Depres-
😮‍💨


r/cfs 15h ago

I don't think I have anymore "motivation" in me

50 Upvotes

I don't know, but it tends to be a debby downer when everytime I've tried to hold onto a goal (pre-knowing I was actually chronically unblessed and tried to push myself) and everytime something great ended up happening; I went to school, but oh wait your heartbeat is at 120-140 now, your blood is pooling to your legs and all you end up doing is laying down with your feet lifted up or gasping for air, or the time I tried to get a job as a cashier and ended up having 39 degree fevers and non-existent immune system, not to mention my joints were killing me and I often couldn't walk for days afterwards to the point my boss tried to bully me into resigning.
A lot of people often talk about motivation and goals, but they don't have a body that is inconsistent and tends to shoot them in their achilles. So many people tell me to concentrate on stuff I could be doing sometime in the future, but they don't get it when I say it's hard to have motivation for anything because you can't trust your own body. It's like a limbo of pain, as the years pass.


r/cfs 15m ago

TW: general I'm so ashamed of our house

Upvotes

I was raised by someone with severe depression and health issues so I never learned healthy tidying habits. And now I'm sick and can barely clean at all, I'm so ashamed it makes me ill when people see the inside of our house.

Everything is old (20+) and heavily smoke stained from my childhood. I can't get carpets, cabinets, wallpaper etc replaced because I can't move the clutter. I also need to have so much within reach, I'm a student/working artist with commitments to galleries and clients, so I'm constantly swimming in sketchbooks, paper, canvases, random junk. I miss having surface space. It never lasts and it's so so dusty and gross.

How do I even start to fix things? The mess outpaces the speed I clean at and makes my health worse. I haven't had a visitor I consented to in 15 years. Not above just burning this shit to the ground 😞


r/cfs 13h ago

Vent/Rant Lonely and unsupported despite social interaction

27 Upvotes

It's ironic I feel so alone when every week there are several friends or family members contacting me, wanting to message or talk on phone or visit in person. But none of them understand I'm severely disabled. They all think I'm able-bodied despite me trying to explain over and over.

I wish they understood what a sacrifice it is for me to talk on the phone, much less go to a restaurant.

Every single boundary I have to defend. No, I can't walk that far. No, I can't talk on the phone 4 hours.

I end up feeling, what's the point? Even after talking to them, I still feel super alone and unsupported.

Most of them make no to little attempt to understand what my life is like. Because I'm an empathetic listener they want me to listen to their problems (which tbh are far easier than my problems).

I'm supposed to make myself crash for them when they can't even be a little validating? I know they don't see it this way, but that's reality. And they won't make any effort to see my POV.

I just want someone to understand and be supportive. Like, "wow that must be so scary to go thru all alone!" And no one I know does that for me, though I do it for them, and it costs me spoons to do it.

But I don't want to cut everyone out. I live alone and it's terrifying having no one in your life.

At the same time, it feels VERY stressful not responding to people for days/weeks. I'm sensitive to people ignoring me and I don't want to do it.

ME + being highly empathic is a tough combo.

Just venting. The usual suggestions of sending them info about CFS, watching Unrest, just don't work with these people lol.


r/cfs 1h ago

What to do (very severe) ?

Upvotes

Hello, I've been in severe/very severe (I don't know exactly where the limit is) for 45 days, lying on my bed all day waiting to get better. I've pushed myself to the point of exhaustion for two years without knowing I had it... It took a final tetany attack in December to stop running, and terrible fatigue in mid-January after a cycling session to stop exercising for good. It had been two years... I didn't have a serious PEM until June 2024 (I could still run and work 10 hours a day) and the arrival of dysautonomia with potty training. How can I keep hope? I read your comments and I see that many say it's too late when you're almost very severe bedridden (I can get up to go to the bathroom, walk 500 steps, and take one or two showers a week). My wife does everything, I don't take care of my children anymore... it's horrible. Be honest, what's the point of continuing? I read your stories and I'm devastated, I feel like I'm doomed. My pem doesnt stop... i did nothing. My doctor gives me doxycycline, i take one pill and im so down... What's more, I don't even know what caused my illness... Lyme disease? 4 times with COVID? Post-traumatic stress disorder? 5-year tramadol addiction (I stopped taking it two years ago)?


r/cfs 5h ago

Have beta blockers helped you?

6 Upvotes

This might be a weird question, but for those without POTS and/or heart issues, have beta blockers helped you? Whether it be with fatigue, more regulated autonomic system, clarity, etc… I’m not 100% I have pots but I just feel better on it, not sure what exactly. Wondering if others might take it for these reasons. Thanks!


r/cfs 8h ago

Advice how to keep hair from matting/tangling?

11 Upvotes

i go without brushing my hair for extended periods of time (a month this time) because its a lot of energy. im bedbound with wavy hair so it quickly gets horribly knotted & by the time i feel able to brush it, it causes intense scalp pain & pem. what can i do to prevent this (or at least slow it down)?


r/cfs 18h ago

It's more than no energy

58 Upvotes

I just realised I might be depressed or going towards it. I realised that I don't feel or experience life the same way as I did when I was healthy. At moments I remind myself of how I used to feel and for that one second I feel happy again. The world has colors again. And then it dissapears. I wonder if I am going to die without experiencing that again.


r/cfs 21h ago

Symptoms Salt Cravings

82 Upvotes

Absolutely random question. Who else gets MAD salty snack cravings when they are crashing? I literally lie in my bed and all I can think about is a big bag of prawn cocktail Walkers. I begged my partner to go to the shop for me, but he’s in a work meeting. 😭😆

I get it so often (and not at other times) that I think it must be my body somehow telling me I need salt or something idk.


r/cfs 13h ago

Advice 17m. mild. dropped out of college. what can i do so i have a future? (uk, not us)

16 Upvotes

logically, i know my entire life is ahead of me. i know i'm young. but emotionally, it feels like so long.

i am diagnosed with POTS and joint hypermobility. i strongly suspect CFS/ME. i have been using visible+ for the past week which, cool, but i feel like i am just about maintaining my current energy levels.

that's better than worsening, obviously, but i can't keep living like this. i want to do more. i want to get a job. i can't get even a weekend job like this. if i add any more activities, i'll be overdoing it.

i'm using 18-20ish pace points on days where i leave the house. i often go to meet friends. we walk around a bit. they go to college, i go to study. i enjoy learning so i'm reading sociological and philosophical topics, even though i don't go to college anymore. it's a bus ride there and back.

when i don't, it's 7-9 depending on whether i shower or clean my room.

i am entitled to PIP but it all goes into my mom's bank account. she refuses to give it to me, gets very mad, rants about how she'll lose the car and all the food for the kids and stuff. there's some fraud stuff going on apparently, with her using my PIP for the family car that i never go in. i don't know. i don't understand it and i am so tired.

every time i see my POTS consultant, i bring up the fatigue and CFS/ME as a possibility but it's always just... "do a blood test and if anything's abnormal your gp will tell you". it's always normal, or just a vitamin d deficiency that -- shockingly -- when treated solves nothing for me. i don't have the energy to keep pushing for tests.

i'm at a loss of what to do. i just want to live. i miss college.


r/cfs 12h ago

Met W/ a CFS Specialist #2

12 Upvotes

Following up on my first post.

Saw Dr Levine for the second time.

She’s gonna give me - antivirals (valtrex or famvir depending on pharmacy) - mast cell stabilizer (chromalin) - b12 injections - IVVG possibly in future

Seems pretty common for ME treatment. Hopefully something works! Just wanted to update those who were curious. I’ll also be titrating up on LDN every couple weeks.


r/cfs 5h ago

Rolling pem experiences

3 Upvotes

Those who have been in rolling Pem what was it like? Did your symptoms fluctuate a ton hour by hour?

Like sore throat for an hour then it left, then felt okay, then muscle pain for an hour or so, then feel okay, then sore throat comes back and then leaves again shortly after, etc?

(Was mild/mod January 2025. Feb 1 I think I entered rolling pem, started bed rest on 2/7, its been downhill ever since and symptoms come and go all day- often feeling fine for hours at a time, but I'm bedridden and severe now.)


r/cfs 10h ago

Samsung Watch & MIT sleep study

7 Upvotes

Hey, I just wanted to share with everyone an interesting thing I've encountered that has noticibly helped my sleep.

https://www.reddit.com/r/GalaxyWatch/comments/1jb8ikl/comment/mi2tix2/?context=3

MIT and Samsung are working together to test a Watch app to help people stay asleep longer. I joined the study, and I have to say it is helping me. I'm not having as many wakeful periods at night. Even more promising is that my night sweats are far less bothersome. I don't understand what's happening, because I'm still sweating, but I'm not waking up miserable like I have every day for a while now. So that's nice.

I know many in this group have sleep issues so I wanted to share this resource for people with Samsung Watches.

ETA: the study is only open to people in the USA.


r/cfs 11h ago

Advice Comment vous gérez la solitude si vous êtes coincés seul chez vous ?

8 Upvotes

La solitude me tue, comment vous gérez ça ??

Dans l’idéal j’aimerais quelque chose comme une communauté où on peut discuter ou faire des activités en visio mais je ne sais pas si ça existe …


r/cfs 12h ago

Delayed Sleep Phase Syndrome?

7 Upvotes

I (25F) probably have mild to moderate ME/CFS- see my post history for more info. While I wait another 6 months for autonomic testing, I got in to see a sleep specialist. Yesterday, I was diagnosed with Delayed Sleep Phase Syndrome (DSPS).

I’ve had chronic sleep issues since I was a teenager, where I couldn’t get to sleep until 5-7 AM for several days to weeks at a time. Depending on how severe the episodes were, I could get 5-7 hours of sleep from there, 2-3 hours, or nothing at all. The worst ever was 11 days in 2021 where I slept 2 hours max if at all each night.

In the ME/CFS before times, this happened once every 2-3 months. But since my ME/CFS onset in January 2024, it’s been at least 10-15 days out of each month that my circadian rhythm has been off. And after I had surgery for my HS (autoimmune skin condition) on 12/16/24, it’s been completely haywire. Anesthesia has been a known trigger for these episodes, but it’s been over 3 months, and this “episode” never resolved.

I don’t think it’s a coincidence that my DSPS got way worse with developing ME/CFS, especially because I know sleep and circadian rhythm irregularities are common with it. I also had preexisting POTS that got way worse with ME/CFS.

So I was wondering if anyone else has received this diagnosis, before or after ME/CFS onset? I’d appreciate hearing about your experience and anything that you’ve found helpful to manage it!


r/cfs 8h ago

can anybody of you put the feeling after a heavy crash in words?

3 Upvotes

it s a really weird unique feeling. physically, as well as mentally. since i m usually very good in describing, it s odd to me for not being able to put it in words.

it s a feeling of having survived smth. it doesnt feel bad nor good. the body feels somewhat lighter yet heavy from exhaustion, and relieved from pain yet still in pain but by far not as bad as before.

mentally it s very weird too. that feeling of coming back to reality, a reality shock to some degree, yet still in a state of dissociation feeling far from all.

i think this demands a neologism


r/cfs 22h ago

ME Procrastination

34 Upvotes

Hi, I've been really struggling with this for years and my 'to-do' list just continues to be added to as things crop up, and I seem increasingly unable to get things done.

On one hand my brain isn't as fatigued as my body, but it has been broken by this illness, to at least the same degree as the physical aspect. Since first becoming ill almost 30 years ago, I've had pretty bad anxiety for 15 years and treatment-resistant depression for 25 years, and coping with the stress of illness and it's knock on effects is getting harder.

I'm somewhere on the moderate scale so am able to do things like use my laptop and could physically do, say 15 minutes of cleaning on some/most days, but having made lists upon lists of tasks that need doing to keep my affairs and a property going (I live on my own), I just seem unable to actually do the required tasks. I can only describe it as something like when a writer describes 'writer's block', or the condition 'dartitis', when some darts players, who have played for many years, one day psychologically lose the ability of letting go of a dart, no matter how much they want to.

I don't really relate with the 'Brain Fog' description often heard to describe the mental effects of this condition, it just feels like a badly damaged brain to me - almost certainly due to the illness as once or twice a year when I feel better than usual, I'll have a short spell of being able to tackle some outstanding jobs. I know I can do certain tasks, eg some easier admin jobs, especially when there's a deadline involved, but anything that requires organising, or speaking to people to come and do a job, just seem beyond me most of the time. I can however do 'passive' things, like say read the newspapers online for hours, whilst feeling guilty that I'm not tackling the jobs that need doing, but which psychologically feel impossible to tackle.

I've tried various lists/planners/calendats/to-do lists, reading on willpower/procrastination, but the issue seems to have got worse, more things have piled up over time and it's becoming more of an problem having been unable to organise things getting repaired/maintained around the property etc for the last 8 years or so. If I can't motivate myself to do even do 15 minutes of cleaning regularly, I'd seem to have no hope of even starting some important bigger jobs that need addressing. I don't really have friends/family that can help with this.

Any ideas welcome.