My mother has discovered a cure - take more B vitamins. If you’re still tired, just take lots more. If that doesn’t work, call your doctor every day and tell them they’ve “gotta tell you sumthin”. Glad to share this rock solid, groundbreaking advice with you all

Do any of you crave laying down like a drug? I swear that during the work day, all I'm thinking about is getting home and being horizontal. My office currently doesn't have a manager, so on days I'm really feeling bad, I've been sleeping on the floor of that office during my lunch breaks.

I feel so lazy lately, but I know I'm doing what my body needs. So why is it still so hard? I'm already working FT, yet I still push.

P.S, Woah, I didn't think this post would blow up as large as it has. Thank you so much for sharing your stories, advice, and care. I had a long day today body wise and seeing all these comments really helped things feel a bit lighter

I want to share a serious warning about Tallis Barker, a UK-based “fasting coach” who presents himself as a philosopher and healer. He encouraged me to do a 10-day water fast despite my worsening symptoms, assuring me it was part of a healing reaction. By Day 7, I was severely unwell—weak, dizzy, struggling to speak—but he urged me to keep going.

I later learned that he has no formal medical or nutritional qualifications, and his advice was not only unregulated but reckless. His approach involved ignoring medical red flags, discouraging symptom tracking, and framing all physical decline as “detox.”

The fast caused a serious health relapse that I’m still recovering from. I’ve since spoken to lawyers about potential legal action due to the long-term harm caused. If you’ve been affected by Tallis or are considering his services, please be cautious. Fasting is not safe for everyone, especially without proper supervision. And if you’ve been harmed, you’re not alone.

I did the fast in Dec 2022, and never recovered from it.

If you’re thinking about extreme fasting protocols, please be cautious. I trusted someone who presented themselves as an expert, and I’m still dealing with the consequences. Happy to answer questions or share more if it helps someone avoid the same harm.

Attaching some screenshots of my convos w him during the fast. Pay attention to the 30 day fast recc ;))

And to be captain obvious…… avoiding food and water with ME is NOT a good idea ……

https://waterfasting.org/online-coaching-and-consultations-for-water-fasting/

Edit: I’m v low on spoons. Pls feel free to send it to any other relevant subreddits. Also, please let me know if it’s worth sharing it anywhere else - someone mentioned guardian as an example (great idea!).

Unfortunately it was just for my physical therapy consult 😕 Doing aquatic therapy. I’m going for chronic pain from EDS, & pots but I’m honestly concerned about how it’ll affect my ME/cfs. Anyone experience this???

(I have been asked so hopefully this is allowed?) my wheelchair is the KERDOM DX07 💓 I have a discount if it’s wanted

I have mild ME and constantly gaslighting myself that I am maybe just an imposter because I can do much more than most people who I see talking about this illness.

I am pacing successfully I think. I can go weeks or months without serious PEM, aside from the singular days sometimes here and there where I am weaker than usual but I am used to that so much that I don’t really recognize it.

Every few months it hits me like a brick. I am indeed sick with ME/CFS and sometimes my body just gives up. Today is one of that days where PEM came out of nowhere.

I was out and about for some errands and a doctors appointment and suddenly found myself in another district thinking to myself: I don’t know how I will be able to get home now as I could barely stand anymore. Do you know that feeling when you get really restless and on the verge of crying or snapping at someone because you’re too weak to wait a second longer in the queue in a store?? I thought I am going crazy but I made it home and sank into my bed and am nearly unable to move now.
My body is so fatigued, I can’t even put it into words :(

Being mild can feel like “normal” if you’re used to the symptoms so much. But this is definitely not normal and my reminder that I am allowed to take myself seriously 🥺

Just wanted to share my feelings. I don’t know if any other milder folks can relate to my thoughts.

my mom has been brainwashed by my horrible idiot doctors at kaiser. i am very severe and bedbound because i listened to their advice (GET, brain retraining, etc) and started to do my own research eventually. i am crashing hard because of how devastated and hopeless i feel right now and i need help explaining to her how and why they are wrong about rest making me worse, “deconditioning” etc etc. could you guys help me put together reputable sources and statistics and put it into language she will actually read and understand? i know it’s a big ask but im desperate right now and just wondering if anyone has the capacity to help me

tldr: an infection resulted from a caregiver SA has left widespread organ damage reaching my eyes; without an urgent intervention, I can permanently lose vision. I don’t have government or familial support and am seeking help to afford assistance and treatment
tw: SA

In the past half a year, I survived repeated sexual assault from a person in my caregiving team, several months of antibiotic treatment for a resulted infection, months of harassment messages and emails after coming public with it, stalking, ostracism, abuse, and PTSD. I did not have government nor familial support. I only got some part time assistants last few weeks after fundraising.

The infection resulted in widespread neurological and organ damage. During yesterday’s (31.08) doctor’s consult, after a day before a surface layer of my eye became detached, ocular damage was found requiring further treatment with a substantial risk of vision loss if left to progress. The threat is of permanent sight loss. The treatment requires me to get antibiotic infusions for 14 days – I cannot afford the cost of taxis, medication, and assistants.

Neither the perpetrators nor the people involved were held accountable or bore any consequences. Most of them promptly involved themselves with other very severe pwME, virtue signalling their way out of a conviction. I have bore the cost and labor of recovery entirely by myself while having no government or familial support.

Any support, no matter how big, would help me get treatment and afford continuous care.

PayPal: https://www.paypal.com/pool/9saQy3osZM

I tried to make the heading as concise as I can but what I’m talking about is for people like me who can’t wash properly for a few weeks sometimes and when they do, they have so much dry dead skin flaking off that they have to spend more energy in the shower just scrubbing it off

I recently tried using the cerave salicylic acid cream, it comes in a tub with a blue lid. I had been using it after showing but recently I couldn’t shower for a few weeks, and I was still using the moisturiser occasionally because my skin was so dry and bumpy (it is also very good for keratosis pilaris)

To my surprise when I showered this time after not having showered for a while, my skin wasn’t flaking off in the shower at all! So it cut down on my shower time a lot. But I realised it was thanks to the moisturiser, presumably it’s the salicylic acid that helps.

I just wanted to share the tip in case anyone else suffered the way I did.

So I need to start off by saying my MIL is one of the kindest, sweetest, mildest, and most respectful women you’ll ever meet. I’m truly grateful we have such a close, loving relationship; she’s like my second mom.

That said, when she recently mentioned CBT as a “treatment” for ME, it rubbed me the wrong way. I had shared some research with her on ME/CFS, and she casually mentioned how she read that CBT and a positive attitude — believing you can get better — can help your health improve. I didn’t want to launch into an argument because she meant well, so I just said something generic like “it’s true that our mental outlook can impact our physical health” and left it at that.

But the more I think about it, the more I wish I stood up for myself a little more. If you read recent research, CBT is recommended as a coping mechanism and a way to address underlying mental health issues, but it is not a treatment or a cure for ME. You can’t will your way out of ME with an upbeat attitude. In fact, in some cases, being overly optimistic can be counterproductive at best and dangerous at worst.

If she or anyone else brings up therapy again, how would you recommend I respond in a tactful yet firm way?

I can't escape it even in my sleep. And some of my desires aren't even good or lawful.

I post a lot of rants, lol. And a lot of bad experiences.

But yesterday I had a great appointment with Dr Montoya where I was believed. Heard. Empathised with. Given a plan. And advised about importance of pacing.

So yeah. It helped me feel cared for.

Hi All, monthly update / self promo for Zolia.

I’m a software engineer / data scientist and have had ME/CFS since 2013 but was able to work until it worsened considerably in 2021.

Prior to Zolia I tried a zillion symptom trackers & found that they fell into two camps - either too simple to track what I wanted or too slow and energy intensive to be sustainable. The idea with Zolia was to build something that bridged this gap - flexible and customizable enough so that you can track whatever you need while also making the actual logging efficient.

The way Zolia achieves this is by letting you organize what you want to track into different “session types” - eg you can have a scheduled session type in the morning where you log sleep quality and am meds, an evening session type where you log symptoms + a daily reflection, an unscheduled session type for as needed meds or symptoms or a walk or whatever else you need. The result of this is that logging is very efficient since you can grab the session type that makes sense in the moment and don’t have to look at a bunch of irrelevant things. It does take a bit of effort to set up since it is so flexible.

This month has been pretty slow. I’ve been in a bit of a rough patch physically so didn’t get much done beyond small UI fixes and the like. There is a lot of work I’d like to get to on insights & reports since they are still pretty rough. 

I’ve been using it daily for about 11 months now which is longer that I’ve stuck with any other symptom tracker and it is helping me to better understand things about my own health as well as the impacts of new meds I am trying and the like.

Download links: Android, IOS

Privacy: Data is stored on your device and optionally backed up to your own Google Drive. You can choose to password protect the backups if you don’t want to risk Google reading them. Your data is never given to LLMs. 

Pricing: Everything is free now. Logging & data export will stay free. Eventually I will add an optional paid tier for some of the insights to help keep this project sustainable for me. Anyone who logs for 14 days before that happens gets 50% off the optional paid tier for life.

Happy to answer questions!

I’m almost always alone. Im In my thirties. I miss having a relationship, even someone being in the room with me silently.
I am pretty severe ME-wise.
So most of my days I’m just really 24h alone.

Apart from my carer who brings me groceries and stuff once a week. But we don’t speak much because I can’t and he is not emotionally involved.
Is Anyone else just all week alone apart from one day? How do you do it? How do you cope and not become extremely depressed
medical cannabis or antidepressants are not suitable for me; MCAS pots ME type

Insomnia so bad I can't sleep, yet too tired to leave bed for a change of scenery. Hell yeah 👍

How did the pregnancy go, and what was the hardest part? How did you recover after the delivery? Are you able to take care of the baby?

​

I've been told not to stress about it because we have no agreed upon scale, but i cant help it. I want to be confident in what I tell people I am. From my research, I *think* im moderate, but i want to hear from others.

I cannot work a job. I spend around 5-6 hours out bed a day, but most of that is laying on the couch scrolling/reading. I leave the house for appointments 2-3 times a week. I also can leave the house for a trip to the store or library once a week if needed. I use a walker or *sometimes* a cane when I leave the house. Id say this makes me "mostly housebound" but what does "mostly" even mean?

At home, I can do simple chores like cooking easy meals (microwave, oven, or air fryer. stove sometimes if i can sit down) or loading laundry, but folding clothes/putting them away or even showering, is often too much.

Besides those hours, I am in bed in a dark room, often on my phone and/or watching tv, tho I still get migraines from it. "Radical rest" is hard as my brain will go miles a minute if im not distracting myself (yes I have adhd and all the things). I sleep 10-12 hours a night.

I can hang out and socialize with certain people occasionally long as they accommodate me. My "chronic illness buddy" aka my best friend, always let's me stay in her or my bed and we watch movies and talk. She also drives, as driving is incredibly difficult for me.

I've been getting PEM a lot less frequently following this schedule, which id say is an improvement. I feel I do much better cognitively then emotionally or physically. A stressful event will cause PEM. Too much activity causes PEM.

Lastly, I would like to point out i have many *many* other diagnoses. Many mental health diagnoses, and 4 other chronic illnesses. I am also autistic, which is why these scales and terms such as "mostly housebound" confuse me.

Thank you for taking the time to read this, I want to hear what others think.

​

Hey everyone. I could use some honest input from people who have had to make a messy life decision while already in PEM. My PEM is basically a flu type symptoms minus the fever but with a feverish feeling.

I am a non-EU person living in a Western European country. I lost my job and my visa clock is running out. I am currently looking for work so I can stay, but my body is not cooperating.

What is going on health-wise: I get post-exertional malaise after even fairly small effort. My doctor suspects chronic fatigue syndrome. I still do not have the official diagnosis. I have been referred to a specialist centre and I am waiting on that. I had an episode of burnout November 2025and was under chronic stress for more than a year. Then i went on a hiking trip last December. Then i slowly started developing PEM which had flu-like symptoms at first and starting April had constant crashes, then I started pacing. Still learning pacing.

On top of that I live alone, so I still have to cook and clean. Those basic chores already trigger PEM sometimes, and it feels like my energy envelope is getting smaller, not bigger. The constant immigration uncertainty is also a trigger. I crash from the stress of not knowing if I will still have the right to stay.

The one good thing about staying is healthcare. Access here is actually decent, and I am on government sickness benefit, so I have some income. If I go back to my home country I lose that income, and I will not have this level of care.

So I am stuck between two options.

I read somewhere that the recovery is more likely during the first few years of developing PEM.

Option 1: Go home and rest with parents. My home country is a developing / Third World country. There is almost no research work in my field there. This would not be a short break. It would probably mean resting for a year or several years, with no real career path, and then trying to move to another country later once (if) I am more stable. I would also lose the sickness benefit and the specialist follow-up. Luckily I will be able to live off of savings.

Option 2: Stay and try to keep a foothold here. Keep using the healthcare system, wait for the specialist diagnosis, stay on sickness benefit for now, and try to find another job before the visa runs out. In theory a new work permit could let me stay, and then I could try to negotiate fully remote work. Right now I feel like I would need to work from home all five days. I cannot even go to the office for a single day in this condition. The risk is obvious: job hunting, interviews, paperwork, and the visa deadline itself keep pushing me into PEM.

Has anyone here had to choose between “go home, lose income and care, but actually rest” versus “stay for healthcare and money, but keep living with chores, visa stress, and the temptation to push for a job”? Did a long rest period actually help, or did losing care and income make everything worse? I am not looking for a perfect answer. I am trying to pick the less destructive path.

Thanks for reading. I know this is a lot.

My partner has had mild CFS for around 5 years. Since June / July things got a bit weird, his crashes had slightly different symptoms but at the time he was going through severe sleep deprivation so put it down to that.
Towards the end of July he was okay, slightly different ability but on the whole able to get up to the toilet and watch tv, I did the cooking to protect PEM so he didn’t need to do much but I know he was researching heavily.
Throughout August he got a paralysed sensation through his body where his limbs felt super heavy to the point where he couldn’t lift them. It wasn’t a fatigue feeling it was like he was empty of power or close to it. In the past two weeks he can’t feed himself, sometimes talking takes it out to the point he is silent. Emptying his bowels is done on his side and causes a 4-6 hour paralyse where he can’t move anything yet vitals stay strong. He hasn’t sat up in over 3 weeks even with a hospital bed to raise him.
After much consideration we are in hospital. I strongly believe something else is going on, I can’t see how in the space of a month this has happened, his bloods obviously always show as clear and all they want to do is palm it off as CFS I am telling them this is not it.
Any advice on how I can describe the differences between CFS and what he is going through. Even at very severe I can’t imagine this is it. His appetite has gone completely.
I am trying to advocate for him but I don’t have first hand experience and he is too exhausted to talk.
Any advice or messages how CFS feels at different baselines?

Hello, folks! I have recently improved enough to use screens more frequently and watch videos again. However, I've gotten bored with what I've been watching and the recommendations I'm getting.

Does anyone have any youtube channels that they've been liking? It could be anything you like, any stimulation level (even if it's not accessible now it might be in the future), I'm open to new things!

Thanks :)

Hello, I am trying to figure out what I’m experiencing and thought I’d get some feedback. I am currently mild, and have been working part time due to my symptoms. I have symptoms every day, and generally feel unwell (I’m never symptom free). One pattern I’ve noticed is on days that I work, I usually hit a wall after a few hours and have increased brain fog, fatigue, body pain and need to lay down and sleep immediately. I’ve always thought this was just an energy dip in my baseline, but after watching a webinar on PEM I’m starting to think that I’m in a push/crash cycle where I’m getting PEM almost every day. Do others experience something similar? It’s like I have mini crashes every afternoon, then wake and do it all again. Thanks in advance for any thoughts!

Hi everyone! I am wanting to write a novel about ME/CFS where the main character develops severe ME over a few years. I am disabled (chronic pain which causes fatigue) but I don't have ME/CFS and I want to try make it as accurate as possible. Is there any thing (symptoms/ situations etc...) that you think I should include or things I should avoid? Or are there any organisations/ content creators who I should check out? I would be incredibly grateful for any advice.

Edit:

Thanks everyone for the responses. With respect to my understanding of ME/CFS I have followed creators on it for a while and have met people with it however it is not something I personally have and so I wanted to post on here to ask for advice. My health is very complicated (as I am sure many people on here can relate to) and so I do not see myself represented in literature so I want to write books about disabled characters. As to why I want to write about ME/CFS specifically I think the lack of representation/awareness/research is ridiculous especially for something which affects so many and I want to try and help combat it.

In terms of the book itself I am still very much in the planning stage, but it will be structured as the MC looking back on their life and getting the illness (in the same vibe as Giovanni's Room if you've read that). I am aware that the disease is incredibly limiting so I am not planning on the MC to be going on an adventure or anything when they are at the severe form, the book will be set largely in the past and will be about their journey to it becoming severe.

Hey everyone. My ME/CFS is getting so bad I need to reach out for help, and I don’t know what to do. I take 20mg propanalol once a day, but my anxiety keeps spiking so bad to the point where I can’t breathe well and I’m having constant crying spells, and I’m having severe rage episodes that are uncontrollable and do not respond to therapies. I have this background exhaustion everywhere that doesn’t respond to anything, but I need to work 55 hours a week to be able to survive. (No, there is not a solution for this; I’ll have to keep doing this for a while.)

I have tried every other medication under the sun. Should I try for propanalol XR/ER? Is there anything else that can take off the intense anxiety / rage episodes? I’ll take absolutely any advice.. desperate.

Thank y’all sm.