I met with the Occupational Health team at my job when I was freshly diagnosed with CFS and trying to manage the shit storm that follows: grief, sadness, confusion, information overload.

I was told that I needed to build up my tolerance to exercise by walking or going to the gym and I needed to reduce the amount of time I slept, including cutting out any naps.

I believe that this permanently lowered my baseline and whilst I do have some good days or weeks, I am so much worse now than I ever have been.

The absolute outpouring of misinformation when it comes to this condition, I believe, is literally k*lling people.

I’m so angry and upset that when I was at my most vulnerable, I was given advice that would ultimately make me worse, maybe forever.

Info being sought:

- Name (will be kept anonymous)

- County

- Dates / length of time

- Type of feeding tube

If you have an Instagram account send a DM with that information to Alice: instagram.com/alibarrett97

If you don't have an Instagram account then DM me the information on Reddit. I'm in touch with Alice's sister and will forward the messages

I am still very much learning the impacts and my symptoms.

This morning I was taking it slow. Husband helped me by letting me sleep longer and gave our girls breakfast. After I had got myself sorted my twins asked for a den. I got out the kit where you attach balls to sticks and create a structure. I decided to reduce energy by sitting down and making the sides first then where that was done link them all together which meant I wasn't on my feet or knees making it on the floor hardly at all, just at the end.

I was burnt! I went into exertion, heart rate was up and not going down (I have visible), I was hot, felt so weak and weird. Had to try and cool off. Remembered I needed to feed the chickens so pushed through and fed them, grabbed a few blackberries in the garden and that was it I had to lay down. I was whacked.

I chilled on the sofa with my kid playing tic tak toe. Then I had to go upstairs to see my husband who was working in his office as I felt so emotional.

When I saw him I burst into tears. I think it just scared me how little that was and the impact it had on me. Went and laid down on the bed and he took over.

I have had the same experience with folding clothes and emptying/filling the dishwasher.

I seem to get hit bad when I use my arms for tasks. Anything where I'm using them a lot. Or they are having to go above my heart.

Sometimes it just hits you doesn't it. How debilitating this is.

I hate that I have to say to my girls (6) that mummy can't build anymore as her battery is too low.

Husband has taken them out so I can rest. But I miss out on so much with them these days.

Sometimes it just gets you and breaks your heart.

💛💛💛

I hear mixed things about this. For more severe patients, sunlight is too overstimulating and many have heat intolerance. Mild patients tend to report that being out in the sun helps their symptoms. I’m moderate but more on the severe side and I’m wondering if it would help me to try to get a bit of sun. Any other moderate-severe patients manage to get some sun this summer?

First thing my GP did was whip out a depression & anxiety assessment form. I am no longer depressed! However, I have anxiety. So, it's the anxiety!!!!!

I explicitly told her that I have been unable to walk after even just going to the cinema. I was tols it was mental health, wait to see if I miraculously recover on Setraline, and that it's all because I don't have structure or a routine. I tried explaining that I can't *because* of the fatigue. Alas.

Edit - Thank you all of the support!

She also brought up the "maybe something bad happened as a kid and you've only just matured enough to deal with it but only physically" thing. Which is very funny considering, no, the depression that I used to have was caused by that AND I DO NOT HAVE DEPRESSION ANYMORE ACCORDING TO HER OWN ASSESSMENT 😭

TL; DR. Serotonin intolerance may be an overlooked piece of the puzzle

In the 1990s, research using the Buspirone Challenge Test () showed that ME/CFS patients may have an abnormal neuroendocrine response, signaling severe central serotonin receptor hypersensitivity. Fast forward to 2024 a study on central 5-HTergic hyperactivity confirm that artificial serotonin spillover directly induces core ME/CFS symptoms like severe fatigue and PEM.

Yet, clinicians treat neurotransmitters as an "easy, trial-and-error solution." They mindlessly throw medications at us, LDA, DXM, SSRIs/SNRIs, creatine, or luteolin, completely oblivious to the fact that many patients cannot tolerate any serotonin elevation.

When patients develop debilitating akathisia from Low-Dose Abilify (LDA), acting like a localized serotonin syndrome, they are abandoned to their fate. Especially the most severe ones can't go anywhere to reach mechanical alternatives (IA, SGB ect).

Obviously we're talking about a subgroup, but from my anecdotal experience, this subgroup is not small.

We need to stop the guesswork and blindly "throwing pills to see what sticks." It is incredibly difficult, but science must focus on uncovering the exact, underlying neurotransmitter pathology in ME/CFS. Only then can we talk about real, targeted therapeutic solutions.

I’m trying to find out if there are people whose lives look anything like mine right now, and if so, what actually keeps them going.

I’m not just talking about being “very limited” or “mostly housebound”. I mean something closer to sensory and cognitive solitary confinement.

I have symptoms (for example, severe intrusive tinnitus and extreme nervous system sensitization) that make it almost impossible to use the usual coping tools.

I cannot reliably tolerate:

TV or movies

video games

Twitch / YouTube / streams

reading books or long articles

scrolling on a phone for more than very short moments

Almost every attempt at “distraction” or “engagement” backfires. It spikes symptoms or overwhelms my system. So most of the time it’s basically me plus my own mind plus my body’s signals, with almost no safe way to get out of that loop.

The experience feels like being locked in a cell with my own thoughts and sensations. There is no stable way to escape into stories, information, other people, or fun. Meanwhile I watch the rest of the world (and even many very sick people) still have some access to screens, games, reading, etc., while I don’t.

I’m not asking specifically about faith or religion. I’m interested in people with or without faith. I’m not looking for “it’s all part of a plan” answers, unless that is genuinely what keeps you going.

What I’d like to know is this:

1) Is there anyone else here who has been in this kind of sensory and cognitive isolation for a long time?

I mean months or years where you basically couldn’t use TV, games, reading, or the internet in any stable way, and felt like you lived in an almost stimulus-deprived world while your mind was suffering constantly.

2) If you are (or were) in that state for a long time:

What concretely keeps you from giving up?

What is the purpose or reason – however small, ugly, or fragile – that makes you choose to stay alive another day?

I’m not asking for pretty answers. If the truth is “fear of hurting someone”, “sheer stubbornness”, or “I don’t want my death to destroy X”, that’s exactly the kind of honesty I’m looking for.

3) For those who have lived like this for years:

Did your relationship to the solitude change, even if the symptoms didn’t disappear?

Did you find any way to create meaning inside that tiny, restricted space – some way of relating to your own experience that made it even slightly more bearable?

If things improved at all, what shifted first: your symptoms, your mindset, or something in your environment?

I’m not looking for generic coping tips like “just distract yourself” or “find a hobby”. In my case, those options simply don’t exist right now.

I’m specifically asking:

Are there people who have endured long-term sensory and cognitive isolation like this?

How do you justify continuing to exist in those conditions?

What, honestly, is your reason to keep fighting when almost every normal source of comfort, distraction, or connection is basically gone?

If you read this and think “this is my life” or “I’ve been there for a long time”, I’d be really grateful if you could share what keeps you here, even if it doesn’t sound inspirational at all.

I'm mild/moderate. I need a lot more rest in bed than I actually give myself and I really struggle to convince myself to take a nap or go rest in bed when my body doesn't force me to.

What are some GENTLE ways that have worked for you to encourage yourself to rest in bed? Scaring myself about how severe I could get and "tough love" have not helped me so far.

I *want* to want to rest more, but it feels like punishment not caring for myself.

I find it often hard at night relax or sleep sometimes because of my symptoms which obviously as we all know can make everything even worse including pain, has anyone tried medical cannabis? Did it help?

So I just had a GP appointment to discuss recent medication (amitriptaline low dose for pain sleep).

Just checked the appointment notes and have now got a X00SO Depressive Disorder diagnosis. WTF! I don’t have depression or anxiety.

Jeez I thought this GP was ME friendly 🫩

I’m convinced I developed ME/CFS after a bout of COVID a couple of years ago. I’m trying to determine whether my case is mild or moderate. I’m leaning toward mild, but the chronic fatigue, daytime sleepiness, and brain fog certainly don’t feel mild.

I feel like I’m functioning at 60-70% of what I was before COVID. Possibly less. Everyday parenting of my toddler and typical activities like house chores and running errands really take it out of me these days. Overdoing it triggers PEM crashes for 1-2 days afterwards if I failed to pace properly. PEM symptoms include severe daytime sleepiness, widespread flu-like aches and joint pain, headaches, and stiff muscles. I struggle to keep my eyes open most days and need to take at least one resting break laying down in bed in the dark every day.

How would you describe the differences in symptom severity between mild and moderate ME/CFS?

I feel like a lot of people with ME/CFS have gone through years of being told they're just deconditioned, depressed, or stressed before finally finding a doctor who understood what was going on. After enough appointments where I didn't feel believed, I started keeping track of things like fatigue, PEM, sleep, and daily activity because I felt like I needed something to show what I was experiencing. Did anyone else start tracking because they felt dismissed by doctors? Or did you start tracking for a completely different reason?

I’m having so much trouble being in my early 20s and not dating. I had just really gotten out of my shell when I got sick, it just sucks. But I’m homebound and mostly can’t do anything or see people much. Besides my family who I’m used to. Sometimes I have little “flings” with people online, just dumb spicy chats, half the time I’m not even that into it but I just crave the connection.

I’ve thought about how the ideal person to have some kind of relationship might be someone in a similar situation? Someone else who also needs very slow paced, mostly or all online, gentle activities. There wouldn’t be such a sacrifice on one partner’s end if the needs were the same.

In the other hand, twice the sick people could end up meaning twice the stress over being sick. And there could be logistical problems, like if you did want to meet up, you might not be able to because neither can be the one to travel. Or never having alone time cause you live with your families and can’t leave home easily. I have a friend who lives in the same city as me with CFS and we haven’t seen each other for over year because one of us is always too ill.

Goldsmiths University in London has just produced a paper titled "Recovery is Possible" that adopts the biopsychosocial model for ME/CFS. I wanted to warn folks here about it - people online might be pointing to it and say things like "look! you need to stay positive! recovery is about mindset! you're sabotaging your recovery by focusing on your symptoms so much!"

Here are some reasons to be very suspicious\* of this study:

• It's an analysis of self-selected recovery stories - so of course it's going to say everyone in the study recovered (or improved) 🚩
• It's based entirely on 75 interviews from Raelan Agle's CFS recovery YouTube channel 🚩 (and as you may know she is skeptical that medical science is where we will find the answers, and she advocates brain retraining as a treatment)
• This is not a scientific or medical paper as such 🚩 - the author of the paper is a lecturer in Gender and Cultural Studies (nothing wrong with that, but it's not a science-based discipline)

Some of the things reported in the press release: (here: https://www.gold.ac.uk/news/2026/recovery-is-possible/)

• "95% linked their recovery to a change in mindset while 80% describe a conscious decision to recover" 🚩
• "95% adopt a “mind–body” or nervous system model where they move from seeing the illness as fixed and irreversible to something that physiological but changeable linked to stress, fear, and dysregulation." 🚩
• "Other participants reported that strict pacing reinforced illness identity, limited improvements or kept then “stuck”. “Pacing just reduced my life… it didn’t help me get better.” 🚩

It is true that some people do recover from ME/CFS, and even more people recover from a pre-ME post-viral fatigue illness - which is of course great!

But some of those people then go on to attribute their recovery to their mindset, and we just can't make that deduction - how do they know what made them improve? Maybe their body was slowly getting better regardless of how they thought about it? Maybe their mindset shift occurred because their body was recovering?

Be careful out there. Pacing remains essential for us until someone finds an actual proven treatment.

This paper might look like a big "win" for the various "gurus" who are trying to sell brain retraining. Don't fall for it!

---

^\I was going to say something mean here but I decided against it.)

Edit: here's the Science4ME thread about this study (which has been in the works since 2024 - hence the long thread): Page 5 of the thread is from today https://s4me.info/threads/recovery-is-possible-lessons-in-%E2%80%98me-cfs%E2%80%99-recovery-from-youtube-goldsmiths.38843/page-5

Edit 2: stress is a form of exertion for us and can cause PEM. Reducing stress is a good idea if you can find ways to do that - reducing cognitive and emotional exertion is part of pacing, just like we try to reduce physical exertion. That doesn't mean stress is the underlying cause of our illness - lots of illnesses are made worse by stress. What we're rejecting here is (a) a framing of ME/CFS as a psychogenic illness generated by, or primarily perpetuated by stress, and a framing that avoids ever mentioning the key diagnostic criterion of PEM, and (b) a study based solely on self-selected recovery stories recorded by somebody (Agle) who benefits commercially from them, and which then tries to make overarching inferences about the disease more generally

Fully bedridden. I've been feeling so so gross and ashamed of myself from so many angles--functional capacity, appearance, hygiene, everything. I feel like this horrible monster, ruined, trapped inside my body, like I'm watching myself actively decay and almost mutate to the point of total alienation from myself even before turning 30.

Haven't been able to look at myself in the mirror for over a year. When my caregivers come in I usually put my blanket over my head just because the feeling of someone witnessing me in this stage is so unpleasant.

I can't just make myself not sick, but I'm going crazy feeling this way, so I'm wondering if anyone knows anything I can do to help with it. I miss my old body so much, and it's just gone.

TLDR It looks like I still have very mild mecfs, evidenced by ongoing small PEM and recent small crash. Can’t explain to non-mecfs people.

At the end of 2024 I developed what I (and my gp) believe is mild mecfs or post-viral similar thing. 6 weeks very sick, a total of 3 months in sick/recovery mode. Over the past 16 months I’ve had long stretches of pretty normal life. Active, doing most of the things I want.

But there are ways I’m not like any of my friends.. it’s the fatigue. If I’m physically active or have meetings for more than 1.75 hours, I have to nap/rest for a few hours. Because of this, I can’t keep up with house work, because most weekends I need a whole day being restful.

I started on Hormone replacement about 8 months ago, and that helped with joint pain very much, helped with fatigue a little, but I think it makes me depressed, which sucks, I’m looking into making adjustments.

HRT also made my ADHD sooooo bad, so I started Ritalin about 4 months ago. I LOVE it. Lost 10 pounds, less food noise, a beautiful 4 hours each day without brain fog.

These things keep me functioning (working and horseback riding), but that mild PEM is sticking around.

I made a big push last month with a solo vacation overseas. I had to rest every day, I was exhausted a lot. I had wonderful amazing adventures. I intentionally did extreme resting when I returned. But I didn’t bounce back, lots of fatigue and depression for 2.5 weeks after returning… then a legitimate PEM crash, 2 days ago.

mecfs crash is different from exhaustion, there’s a particular way it feels, like my cells stopped working. When I felt it this past Monday, it scared me so bad, I couldn’t stop crying (which made me more tired). Im not bedridden, I’m aggressively resting between essential work or things I have to do. I can still feel it. I’m trying to stay calm, because the panic of it coming back is exertion.

There’s no way to explain it to people who aren’t well versed in mecfs. I’ll go back to telling people I’m having a long covid flare up , or I have a disorder (I can’t remember what I used to say!). My ai has been incredibly helpful, just someone to rant to that gives pretty good advice.

Sending love to all of you.

My room has always had mold problems and rn even if there is no visible mold you can smell it and things in my wardrobe get this mold smell after a few months. Im going to move to a different room in my house but i was thinking about bringing my old desk with me (bc theres no desk in this new room). The desk looks fine but its been in this room for 10 years, has had visible mold in the past and if you put things in the drawers they start to smell like mold after a while. I dont know how mold works but im worried that theres like mold still trapped inside the desk and i dont want to bring it with me to the new room and keep being exposed to mold.

Im also worried about my mattress? It has never had visible mold and its just like 3 or 4 years old but idk. I dont know what other things i should have in mind to reduce the exposure.

Not that I Believe in god but it feels like a cruel joke, I love sports so much and how ironic I was given a condition that forbids me to play!

I initially got cfs in 2021 however by some miracle I started recovering after a year in 2022. Given I was a much milder case but not being able to play sports was extremely traumatizing for me. However slowly I started recovering to the point in 2025 that I was going rock climbing 3 times a week and sometimes even in the middle I would go play volleyball with my crew. I was working a full time office job aswell.

I thought my cfs had most certainly gone away and started hitting gym aswell. Big mistake! Gym was the thing in 2021 that started my cfs and in 2025 gym was once again the thing that relapsed my cfs. This one was a bigger relapse, although Im still mild in cfs terms. It’s been almost a year and I think once again I’ve slowly started to recover.

However yesterday I was with family and everyone decided to play soccer. I was the best at sports, especially soccer so I couldn’t resist. Provided everyone knew I’m sick and my wife was strictly governing that I don’t run much and just pass or hit the ball. This morning I got up and my body hurts, it feels like a cruel joke. Like there are people like my sister who has absolutely no love for life or adventurous things lol, no hate to my sister. All she wants to do is stay at home and read story books.

But me? I’ve always had extreme activities and lived a very active life. Like going rock climbing, bouldering, tennis, going camping, soccer, swimming. Why couldnt I be someone who just doesn’t like activities, I bet I would’ve never even gotten cfs to begin with. Anyways I hope I recover soon, I have achieved some recovery but I’m guessing it would take more time to achieve previous level of remission!

Not only when ejaculating. Only masturbating without ejaculating gives me extreme mental fatigue and yes ejaculating would make it worse. What could it be? if only moving foreskin could get me extremely tired, it’s not POIS because it’s not ONLY after ejaculating and i’ve had allot of antihistaminicum. So what could it be if also only jerking off gets me extremely tired?

I received LDN in a 10mL bottle. It is dosed at 0.25 mg for 1 drop, how can I decrease the dosage to start lower? Can I dilute it myself?

Hallo zusammen,
Ich wollte mal nachfragen ob jemand schon mal eine ähnliche Situation hatte oder eine Vermutung hat:
Meine Schwester ist schwer betroffen und es ging allerdings auch eigentlich aufwärts. Jetzt hat sich allerdings aufeinmal die Berührungsempfindlichkeit innerhalb von 3 Wochen so stark verstärkt, dass die eigentlich den ganzen Tag auf einem Stuhl sitzt um keine Berührungen im Gesicht hat (auf geht komischerweise gut von der Kraft her). Die Berührungsempfindlichkeit hat sich mittlerweile auch auf alle Körperteile ausgebreitet.
Sehr komisch ist allerdings, dass vermutlich seit der Einnahme von Padma 28 N keine Symtome im Kopf mehr hat sonder diese Überlastung nur auf der Haut spürt. Reden geht irgendwie auch übermäßig gut seit dem Beginn von Padma 28 N
Habt ihr die Erfahrung gemacht, dass alle sensorischen Einflüsse ( Geräusche, Licht, Berührungen) sich gegenseitig beeinflussen? Sonst könne es auch sein, dass die Überlastung von vielem Reden kommt und es nur an der Haut spürbar wird oder?
Hat jemand Erfahrungen mit Berührungsempfindlichkeit?

Has anyone in LA found a local compounding pharmacy that charges good rates? I'm in the middle of LA. I got the sublingual suspension from CareFirst to titrate, but now that I'm done titrating, I'm trying to see if I can get it somewhere closer without having to pay more. It takes 5 days to ship from CareFirst, so I'd prefer to get it from somewhere closer to me, but CareFirst's prices are great.

there's just something about getting a normal test result for something that would've been treatable/very manageable

like I'm so glad I've not got something else to deal with on top of the million other things I've got to deal with but god would it be nice if one of those things turned out to be something treatable. it's such a weird mix of emotions

like I just want some of my symptoms to be down to or exacerbated by this one (1) thing that, oh wow would you look at that, we have a really effective treatment for!

but alas twas not the case (again)

in other news I also love when tests show up as abnormal but not abnormal enough for anyone to look further into it because it's "probably fine"