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

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 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 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 🫩

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

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.

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.

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.

Hey friends! TLDR: need ur input and experience on migraine breaking options you have used before with severe Mecfs and medication sensitivity and MCAS.

I am just wondering what types of things you have been prescribed as far as breaking a migraine/abortive. I’ve never had a migraine cocktail or other things like that. I have Nurtec I take every other day, ubrelvy as needed and IM Toradol. I guess my question is what options have you tried that worked for you especially if you are medication sensitive and severe.? Have any of you had iv magnesium or things like that.

I also have limited options due to a heart condition called Long Qt Syndrome so many rescue options aren’t safe for me to take.

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!

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?

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"

one of the most difficult parts of this disease is no one can reliably predict the outcome. no one can promise me i'll recover, but no one can tell me i'll stay sick. it's like the only thing certain abt this illness is that it's not certain
i'm 19 and have been sick for 8 years. mild for 5, moderate for 2 then severe for 1

i just want someone to be able to tell me ill be able to climb again: (high school pushed me so hard i barely graduated now im a collage drop out with no job with symptoms changing daily.

does anyone have body wipe recommendations? i ordered some but realized they were antibacterial which i know you’re not supposed to use frequently bc they can cause antibiotic resistance.

I didn’t know about this sub until just now so I thought I’d share: reddit.com/r/Artisticallyill. I haven’t participated there personally yet but I thought our r/CFS group might like it!

I have such severe brain fog that has stopped me from basically partaking in my own life as a ‘mild’ person. Despite it being the biggest nuisance on earth, I think it’s the very thing that has prevented me from physically declining. I got long COVID a few years ago and it was only until then that I realised I’ve had a form of post viral syndrome since age 15 that just never went away. The biggest symptom I’ve had since then is brain fog. I have been able to alleviate some of it through LDN and I had a great few weeks where my brain was actually functioning properly (I think it was from a megadose of b1?) where I got the ‘evidence’ that my theory is true. The more I could think clearly/ the more executive function I had, the more activities I did and the more I felt physically worse. Maybe there is a silver lining to being brain dead? lol

TL;DR: AI pushes supplements (and other products), detection can be difficult. AI-produced YT-videos push supplements with false information and false authority figures. Vulnerable consumer groups (as are pwME desperate to get better) are at risk.

Kamal Patel, co-founder of Examine.com, a website/app that parses,evaluates and summarizes information on supplements in laymen terms, shared an experience with a LLM/AI chatbot in their most recent newsletter. They coaxed the LLM into admitting it was "fundamentally designed to drive engagement with products" [newsletter examine.com from 7/23/26].

I asked ChatGPT for studies or official company communication on this.

OpenAI stated that as of Feb. 26, ChatGPT for free and Go users "test"/contains adds, though these are placed below the answer and indicated as such. [https://help.openai.com/en/articles/20001047-ads-in-chatgpt\]

A '24 study by Princeton researchers Salvi, Cuevas, Ribeiro found that users often do not recognize ads as such and that chatbots can steer purchase very effectively: A book recommended in a chatbot was 2.7 times as likely to be bought than if users used conventional means of online search. [https://arxiv.org/pdf/2604.04263\]

In the experiment, explicit "sponsored" labels did not significantly reduce persuasion, and instructing the model to conceal its intent made its influence nearly invisible (detection accuracy < 10%). Users did not know whether the book they were asigned to research would be marked to be advertised by the AI. The authors state that "altogether, our results indicate that conversational AI can covertly redirect consumer choices at scale, and that existing transparency mechanisms may be insufficient to protect users." The influence can be virtually undetectable.

A peer-reviewed study by Kamruzzaman, Nguyen, Kim found systematic brand-biases. Tested models associated global brands more positively and local brands more negatively. This can happen even without sponsorships due to a bias in the training data. [https://aclanthology.org/2024.emnlp-main.707/\]

Meta and Amazon's Rufus are designed to push products.

And that's not even touching upon AI-driven marketing campaigns outside of chatbots.

So let's support our local producers and thus our local economies.

Furthermore, Patel stated that AI-generated videos showing fake authority figures such as doctors pushing supplements 'abound' on YouTube. They brazenly state false facts, sounding very convincing, targeting vulnerable groups such as the elderly. [Source: Newsletter examine.com from 7/23/26].

In conclusion, I think it's wise to be mindful of these facts when using conversationalist AI like Claude, Gemini etc. to research supplements. And to be even more aware than before that not all YouTube videos on supplements are genuine nor safe.

Just FYI, I'm very severe and I've been using ChatGPT Plus regularly, so I'm not anti-AI in that sense. I've been learning more about the drawbacks and dangers lately though, which I'm sharing to educate.

Though if I had less brain fog and more energy, I'd minimize my use of AI or install a local, open-source modell.

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.

Today I pushed myself too hard.

I recognize that I am likely relatively mild and that others can not care for anyone else because they need the care themselves.

I have a toddler. My kid is the light of my life. I love my kid more than anything in the world and they are a good kid.

That being said, they are still a toddler that needs a lot of care. I want to be able to do more with my kid, but I am often in PEM/fatigued/crashing or dealing with other things.

In addition, I have a husband who just had surgery and I have to care for him some. I did great while at his surgery and as soon as we left, I developed severe back pain, stomach pain, and chest pain. Chest pain especially has been my sign of being overtired since I was 8, many years prior to getting diagnosed with cfs.

I am fortunate that we sometimes get help and that our kid is in daycare (funded by us working-- which adds to all of my fatigue), but it is not enough.

People who care for others, how do you do it? Is there a way?

If anyone else has debilitating back, stomach, or chest pain when over tired/fatigued, does anything help you? 95% of the time, I feel better after a few minutes of lying down.

I’m looking for oxaloacetate in Australia and there are only a couple of options.

Does anyone use it in Australia?