Hello, this is a temporary post that I'll likely delete soon.

I am moderate (on the worse end), but really craving socialization right now and needing some community. I am a follower of Christ and have had to skip church in person for a couple of months now as well as my small group. But today I desperately want to make it to church and need it badly

I actually don't feel as unwell as I usually do. I've been in rolling PEM for a long time, but the most recent episode I can somewhat separate has been specific for about 4 days now. I've rested decently and felt somewhat recovered today.

Unfortunately, according to all 3 apps I use for HRV and stability levels-- Visible, Welltory, and Fitbit, I'm in bad shape today and need to rest. HRV is very low compared to usual. Still a 1 on Visible. Etc.

I'm not sure why I feel okay, but I'm guessing it's a bad idea to go out with all my scores today and that I will definitely pay for it later. Especially given that my church is high energy and large, so high stimulation.

Should I stay home regardless of how I feel right now and listen to the apps? Usually I hage the opposite problem -- when I feel terrible, sometimes my scores are okay. So I'm torn. Is it worth it to get the human contact and community and risk a worsening crash?

I’ve been ill for 2.5 years now. It started with just cognitive problems, but recently I’ve gotten POTS or it has worsened a lot. I used to be able to do everything physical, but not mental. Now I can’t even stand for 2 minutes without symptoms.

I think now is the time people finally realize I’m really sick, because I sit down all the time, can’t leave the house by myself and need to be pushed in a wheelchair (hoping to get a good wheelchair but then they have to believe I’m not getting better anytime soon).

I’m doing okay mentally. I laugh a lot and enjoy the little things, like seeing a bird in our garden. However I think a lot of this is just being lucky I’m not depressed.

A lot of people (even doctors) say how brave I am for not being depressed and that they’d be depressed. Don’t get me wrong, I am really grateful I’m not depressed and I’d say I’d rather be like this than depressed. But it makes me really uncomfortable. I have no idea if it’s supposed to be a compliment? And how do I respond to this?

I have heard that some people with CFS/ME, even in the severe stages, do not have depression. How is that possible?

TLDR: Improvement with ME is possible, and I am proof of this

In the general ME community, there are a lot of very unwell people and this leads to a lot of very sad people. I know, I’ve been there. I do, however, fear that sometimes the positive stories get drowned out. I think having a space for people to be sad is very important, but so is hope. For a long time I was under the impression that I’d only ever get worse. That’s not the case, at least not for everyone and certainly not me.

Improvement with this illness is often spontaneous, and I really wish I could give advice, but it honestly just sort of happened for me. I crashed really badly, then recovered above baseline and have been consistently better than I was before. That was in February, and since then I have been able to go out in my wheelchair multiple times, use a computer, and even went on a small ‘holiday’ with some friends, with every possible precaution, and didn’t crash badly afterwards. I’ve done more in the last few months than I had in the previous few years combined. It’s a really odd feeling; being able to do so much, but it still only being a fraction of what I could do pre ME.

I’ve been properly diagnosed with ME (and PoTS… and MCAS) now, by a specialist, so I feel able to participate in the ME conversation now. I hope I can bring some hope. This illness is so lonely, and I was in the depths of it for a quarter of my life before this small improvement. I’m still very much ill, and there’s a lot I can’t do, but my world is so much bigger than it was a year ago.

The very first symptoms I ever noticed was back in 2014 I was 21 and I had what was like intense panic attack episodes but it didn't actually feel like I was panicking over anything it felt physical. I would get intense tingling in my brain and I would get confused and feel like I might faint or have a seizure this would then make me want to stand up and I would panic looking for somewhere to feel safe. But I would feel so lightheaded and cold and I would get tremors my body would shake. Then eventually it would pass and I could finally go to sleep. These intense symptoms have only happened a handful of times. But the consistent symptoms are always there in the background. Anyway I went 6 -8 months of these symptoms being really intense. This all happened while I was living in Australia.

Then I moved back to the UK and slowly my symptoms involved over time to the point where I started to feel normal. I would still get minor feelings of dizziness, lightheaded, fatigue and sensitivity to light at times, especially the day after. Hard exercise or anything where I pushed my self my body always felt Extra tired. My hangovers were always so much worse than other people and when I got a common cold I would be so exhausted.

So then fast forward 8 years I managed to cope with my symptoms for a long time it felt like I would never get bad again. Then after last year buying my house and getting sick a lot over winter and working overtime my symptoms just triggered after my 30th birthday again. The intense episodes were back I was of course really anxious at the same time because I had no idea what was going on and I was convinced I was dying. Anyway over the last 8 months I have paid privately to see a cardiologist and a neurologist to check my heart and brain both of which early on tried to diagnose me with anxiety. I have been prescribed duloxetine and sertraline both of which I haven't taken because I didn't think it was psychological. I have had numerous blood tests CBC and inflammation markers and I'm sure I have had plenty of other blood tests. Everyone thought I had major health anxiety and that was what was wrong with me, so once I had my heart and brain checked I should just feel better. Noone was listening to me when I said the symptoms are giving me anxiety. It's normal to feel anxious when you feel like you might faint or if you are always dizzy.

I did manage to reduce my anxiety anyway and it did help with feeling better because I wasn't panicking about my symptoms as much.

But they are still there. I have tried going back to work a number of times this year and never managed to stay because i just felt terrible. The dizziness or nearly feeling like pre syncope and fatigue was terrible. So I went back off work about a month ago and completely rested and my symptoms did reduce. I hardly did anything literally just layed around doing the bare minimum but I had another blood test tro check my adrenal function. I thought my cortisol would be high since ever doctor and specialist was saying I was anxious and stressed so then my result came back low. It's supposed to be a minimum of 6.0 at 9 am and mine was 2.4. which was considered low and I was referred to a endocrinologist and for a short synatchen test which is in December.

But my symptoms still confuse me so much like I doubt whether I actually have adrenal insufficiency at times.

I wake up so exhausted like my eyes ache so much and I feel off balance, my neck pain is so intense at times it's horrible. I feel double my age. I feel like whatever underlying condition I have is really taking my life from me now.

I miss having energy and I miss my life force.

My work recently reduced my sick pay and it's coming up to Christmas I'm just so worried about my family now. But noone really seems to know what's wrong with me.

From the outside looking in and with your experience what do you think it could be ? Sorry I'm not anxious anymore I'm just confused about what I'm experiencing.

Also my name is Oliver by the way and I'm in the UK

Questions for fellow very severe ppl

Do you have sleep problems?

How many hours of sleep do you usually get a night?

Do you sleep in one go or in little chunks during the day?

What are the things that disrupt your sleep and the things that help you sleep better?

Is an apple or another brand good for monitoring when you over exert yourself so you can stop before a crash? Does it let you know how long before you’re fully recovered. Hopefully other features are helpful for monitoring your cfs as well.

Pacing failll 😩 I’m learning just very slowly.

My first neurology referral was denied because my one MRI without contrast was mostly normal. The only strange thing they found was something that was assumed to be congenital and asymptomatic. However, once I brought up my concerns about intracranial hypertension to my primary care doctor, I quickly got an ophthalmology appointment and found out I have papilledema which points to intracranial hypertension. The ophthalmologist ordered an MRI + MRV and sent me to the neurologist. I am now being treated for IIH. The MRV with contrast showed a vascular condition that is commonly comorbid. On top of that, I found out I have low vitamin B6 which probably explains my symptoms of peripheral neuropathy. Whether this is all related to my ME/CFS is unclear, but many doctors and even I could have easily assumed that my symptoms didn't matter since the vast majority of them could probably be explained by my CFS.

It should be noted that because ME/CFS research has been underfunded for such a long time, many tests don't have enough research behind them just yet, or are risky or difficult/extremely expensive to access. Many primary care doctors seem to just run the same handful of basic tests over and over and then give up. If you have one like that and you can switch, that would probably be the best thing to do. But progress is being made, especially now with the surge of Long Covid research. I hope all of you who are struggling with normal result after normal result despite countless symptoms (or confusing results that leave doctors scratching their heads) can find ways to access the tests, specialists, and treatments you need without crashing.

muscle pain ✔️

chronic fatigue ✔️

poor concentrate ✔️

word slurring ✔️

PEM a little bit

headaches ❌

fast or irregular heartbeats ❌

Swollen or tender lymph nodes  ❌

Chills and night sweats ❌

Hello Long Hauler fam,

☀️ Here are 4 research findings, 1 thought, and 1 question to consider this week (plus 🐶 pic)

4 IDEAS FROM RESEARCH

I.

Researchers at Griffith University have focused on "immune exhaustion" as a shared yet distinct feature in LC and ME/CFS.

This is the first analysis of immune gene expression in both ME/CFS and long COVID patients at the same time, spotlighting specific immune pathways and markers that could differentiate these conditions.

Basically, the immune system in people with ME/CFS and long COVID seems to get "tired" or lose some of its ability to work properly over time. This could explain the long-lasting symptoms people experience, like fatigue and brain fog.

​II.

I really enjoyed listening to this podcast on how AI is changing how we do drug discovery.

The key takeaway is that we usually try to reduce very complex systems and problems into things we can understand, whereas AI doesn’t need to, and so has a much better chance at actually solving things and inventing new drugs.

This also removes the attachment that researchers might get to individual ideas, which might actually lead nowhere (happens 9/10 times in drug discovery), since the AI is able to test lots in a simulated environment at first (dry lab), which brings up totally unexpected treatment possibilities that human researchers have not looked at.

It’s early days and it will take a while but this is undoubtably the start of a new era for drug discovery…

III.

Scientists at the University of Alberta have discovered two proteins that could help in identifying and treating long COVID. These findings help pinpoint what’s happening on a biological level in long COVID. If the proteins (galectin-9 and artemin) are playing a major role, then treatments could be developed to target and reduce these proteins.

Galectin-9 is linked to inflammation and brain fog.

Here’s how it works: when your immune system is stressed (for instance, from a COVID-19 infection), certain immune cells called neutrophils (a common type of white blood cell) get overworked and start releasing extra galectin-9. This protein ramps up inflammation in your body and is thought to worsen brain fog and similar cognitive issues. Essentially, galectin-9 might explain why you feel like you’re “in a fog” and struggle with clear thinking or memory.

Artemin is tied to severe pain and cognitive problems.

Researchers noticed that people with long COVID often have a lot of immature red blood cells circulating in their blood—something that usually only happens in bone marrow, where blood cells are made. These immature cells seem to raise levels of artemin, which in turn may worsen pain and contribute to mental fatigue or difficulty concentrating. Additionally, these immature red blood cells can suppress the immune system, potentially making it harder for your body to fully recover.

The researchers also challenged the theory that lingering traces of the virus itself cause long COVID. The team found no signs of the virus in the blood of long COVID patients a year after their infection. This points instead to chronic inflammation as a possible cause, fueled by proteins like galectin-9 and artemin.

IV.

This study published in Nature suggests that treating COVID-19 early with on nirmatrelvir-ritonavir antivirals reduces the chance of developing LC, although more study is needed to figure out just how effective they are.

1 THOUGHT

I.

If you are very noise sensitive, the Soundprint app is a great way of finding out where quiet cafes or other public places are. It’s crowdsourced, people report how noisy a place is for the benefit of others. Love it

1 QUESTION FOR YOU

A friend of mine, Makaira, is really good at treating himself when he needs it. What are your favourite bucket-filling treats? (doesn’t have to be edible)

puppy p.s. The Original Whisky!

Meet Archie, who is the same breed as Whisky (toy poodle x lowchen cross) and inspired us to get the same type of pooch due to his lovely companionable nature.

[alt: An older man sits at a table with a small grey dog resting its head in front of him, set against a scenic outdoor backdrop.]

Wishing you a peaceful week,

Tom and Whisky

Does anybody else's body clock if unchallenged goes to bed 1 hour later every night and wake up 1 hour later?

I try and sustain human waking hours 5-11am for as long as possible and then go to bed about 2-4 hours later every night once my sleep cycle becomes 'problematic' until I return back to 5am wake up.

Bed time ends up being 3 hours later if I've burnt out just to add to the exhaustion. Heard someone describe it as wired and tired.

This happens every 4-6 weeks.

If anyone else experiences this how do you manage the transition to nocturnal life and the disruption this causes? Feels very frustrating and lonely a lot of the time.

Currently 3am and can't sleep so will be able to enjoy the world to myself for the next couple weeks at least.

What are the odds? I read there is a Golden Girls CFS episode here this week. I decided to rewatch some Golden Girls episodes tonight (I loved that show 20 years ago). I decided to watch Season 5. And the first episode in that season was the CFS episode! Very good episode.

I did some digging: « The decision to include the Chronic Fatigue Syndrome storyline in The Golden Girls came from the show’s head writer and creator, Susan Harris. Harris herself had suffered from CFS-like symptoms around that time and experienced the frustration of being dismissed by doctors who couldn’t provide a clear diagnosis. Her personal experience inspired her to write the episode “Sick and Tired,” where Dorothy deals with similar struggles. »

Context: I'm severe. I have been sick for 10 years. My ME/CFS started with a mono infection.

TLDR: I'm wondering how people get quality rest during the daytime when they're "wired but tired."

Longer Version:

During a crash, I'm utterly exhausted, but I have trouble falling asleep (at night and during the daytime) because my body cranks out adrenaline. I seem to be stuck in that "tired but wired" state.

I have tried meditation, calming music, reading, aromatherapy, Holy Basil, chamomile, audiobooks, therapy, cuddling with my dog, and other things... but it's really hard to get rid of the tension and hyper-arousal.

Anxiety may be partly to blame (I'm worried about my illness getting worse). And I'm also guilty of having an "overactive mind." I seem to crave stimulation (even when I'm exhausted).

ADHD medications can calm down my mind, but they also make it harder to sleep at night (just like coffee). I would like to spend less time looking at screens, but it's hard when you're stuck in bed and bored.

Either way, this cycle of "exertion->crash->adrenaline->inability to sleep" is driving me crazy. How do you calm down your body so you can fall asleep during crashes?

I find that with recovery. There's a lot of skipping days . What I mean is having one thing on the schedule without much flexibility.

For most of us... it's just rest.

An able person can exercise and feel instantly gratified with energy and can furfill many obligations on the same day...

I have rest on this day to have the energy for that appointment. I need to fill out this form but my brain is too Foggy.

I'll just rest. The waiting game is necessary. Don't get me wrong... But it looks horrible when looking at your life in third person.

Especially if you get worse again before interacting. There's this big absent hole in your life

I. Am. So. Exhausted. It’s still bringing up memories of so many times in the past I felt this exhausted and out of it. Teen young adult years, missing pieces or entire chunks of memories from moments that should’ve been lifelong meaningful core memories (so many examples from being a photographer, going to events, junkyard run for my vintage car, all a wobbly fog instead of mindful present joy I would expect based on my personality). And as an elementary kid too. Just foggy and exhausted and dissociated even as a young kid. Now it’s just most regular days instead of in times of stress… which were also most days.

But nothing like this daily repetitive exhaustion. At least I could fake and force my way thru when I was younger in bursts… then crash. Vs one constant crash now of varying intensity.

I could at least kinda care for myself with skills I learned in ED treatment, work a mentally demanding but emotionally rewarding part time job, clean my apartment and THEN crash.

But that is no more. Now it’s constant crash, basic needs not getting met let alone living by my values to build some kind of life. Just crash vs very bad crash, just saving up the energy to do the bare basics. No more friends or fun or goals.

TLDR this disease has sucked all the meaning and hope out of my life. And I’m realizing how much of even my younger years were spent in the fog of symptoms… but blamed it on other things ig.

I was a high achiever, enjoyed work though it was stressful, singer, loved to dance and engage in conversation with others. I traveled extensively, lived in other countries.

In Feb 2020, I celebrated my 37th birthday big time, danced on a cube, did a small gig, had an amazing time. That was my last real party. A year before CFS I bought a house. I was happy doing it up, working in the garden. I lived with two amazing dogs.

I got CFS during the pandemic, possibly mid 2021, not sure how or why.

Life is so different now. Quit work, can’t dance, it’s hard to sing, can’t have good conversations without crashing, no parties, no gigs. Can’t look after my dogs. Had to rent my house.

What was your life like before you got ill?

For those that have benefited from amitriptyline for headaches/pain what dose are you on?

I upped my dose from 10 to 15 a week ago and feel so awful. Was told to aim for 20-30mg for pain but I doubt I’ll be able to tolerate it.

I was just wondering if anyone gets pain relief at lower doses like 10mg? I’m not sure if it’s worth staying at 10 for a while (was on it for 2.5 weeks and didn’t feel great but it wasn’t as bad as 15mg) or ditching it all together? I don’t have a lot of other options that I haven’t already tried.

Thanks

I work one day per month for 3-4 hours and then have a PEM/crash that usually lasts 3-4 days of being bed bound afterward. I'm been pretty good at avoiding PEM otherwise.

Recently I worked my normal 3-4 hour shift and had a 10 day bed bound PEM episode. It was scary and reminded me of when I was more severe and in constant rolling PEM because I didn't have caretaker support.

Well I recovered from that crash and had 2 very "normal baseline" feeling days and decided to go out on halloween. It wasn't a very demanding evening. I put on some makeup and an easy jumpsuit costume and was pushed in a wheelchair to a bar where I remained seated and drank a sprite and listened to music for an hour and a half. I didn't talk to anyone.

Less than 24 hours later PEM hit again. I'm having trouble holding my head up again and have been in bed. I'm confused why so little exertion is causing this kind of PEM.

I don't feel like my baseline lowered from the 10 day PEM episode because I felt back to my normal level of energy for a couple of days. It is possible to cause a permanently lowered PEM threshold?

I've been on LDN for a long time and it seemed like it was helping my PEM be less severe but now I'm not so sure.

Just trying to figure out what's going on and how I can make this better. Any suggestions or advice is appreciated, thank you

Just curious.. It's been ridiculously hard for me to get prescription meds to try... Do you have an ME doc who tells you what you can try next (like reading from a list), or do you have a doctor you can go to with some proof that another drug could help when it's your own research?

My title is pretty self explanatory... I'm tired and groggy all day, but can finally do some work in the evening and usually then im super agitated... I know this is pretty common here, but I was wondering if anyone has found anything that helps? Or any sort of explanation as to why? My current theories are cortisol or histamine but neither seems quite right... For reference im on a low histamine diet

Edit: Thank you thank you 🙏 everyone! I found an old dishpan and some activated charcoal. Heating up the water for some oatmeal.

Now, out of context that ☝️ could sound like a crazy experiment about to go wrong.... We shall see 🙈😄

*******"

Loperamide and Pepto are not working. I hurt my knee and am using a walker, so all these trips to the bathroom are killing my energy envelope. I am alone this weekend. Drinking coconut water (no added sugar) for hydration (better than Gatorade). Chicken noodle soup, saltines, toast. I have sensitivity to bananas, so can't do those. It's like as soon as I lie down, I have to get back up again. I'm so tired.

Maybe MCAS (getting my first blood test for that on Wednesday) or my autonomic system. Or maybe it's just the Long Covid. I don't know. But I don't know what to do.

TIA 🌹

This came up in my YouTube feed just now.

https://youtube.com/shorts/ksJabu7oTqY?si=assioS03xaxIEuBU

Hey.

I’m 95% sure that my ex gf gave me mono, as a result of the girl she cheated on me w. It fits perfectly with timings, makes sense in regards to her levels of fatigue she was experiencing at the time too. Lots of things add up to me to make me believe it was passed onto me via that. We split up shortly after, and thats when my symptoms got a lot worse + i got diagnosed.

7months later i still have bad fatigue. I’ve learnt i have PEM , a big symptom of CFS - I am pretty sure its developing into CFS.

This ex of mine doesn’t know any of this. The way she cheated on me/left me for this other girl was pretty rough; i was v hurt. - she’s v aware of that consequence, but now i might have a chronic illness as a result - she isn’t aware of any of that.

Part of me wants her to know.

Shes tried contacting me these last 7months on 3 separate occasions and i’ve never responded.

Part of me wants to reach out to her, to have a conversation about all of this - but i don’t know if i’m being silly. I think i want her to know, to know that her silly action has led to all this.

But i also know its not her fault, it was just a silly unconscious consequence as a result of one of her actions - i also went back to her after she cheated so that responsibility is equally just as much on me.

Maybe i just want some acknowledgement? (that i probably won’t even get), i don’t know. I fear i’m probably not going to get much out of a conversation but at the same time i want her to know - to know that this is my life now -

i felt anger, i felt frustration, those feelings are gradually fading but they are still a lil there, and they come in waves, and i want her to know what my reality is, as a result of all that happened so long ago.

Any advice would be loved - do i reach out? or do i leave it?

Edit: i think part of me is curious as to whether she’s been fatigued / suffered w it too ? - but maybe thats just me finding a way to justify reaching out eek

Did infections make your MECFS worse?

I’ve been mostly bedbound for 3 years now and I think maybe it didn’t hit me before that I am… actually profoundly traumatized? But I think i am. You see, I was very severe in 2022 but in the last year and a half or so i have been able to write and read again, not as much as when I was healthy but I can do a significant amount of writing and reading. (I can also listen to music!)

So OF COURSE I am now terrified of losing that again. I have this feeling of utter dread — a premonition feeling if you will — that I will lose it and become very severe again or worse. Like “my life is too good right now, this can’t be right, I am obviously going to get worse again.”

That could happen from anything. From another reinfection of course (Covid kicked all this off for me in the first place) but also I am scared of getting locked-in syndrome. It’s the worst case scenario for me, death would be preferable, which is why I know on some deep level that it will happen.

I just got a Rx for birth control pills (because the luteal phase of my cycle makes me crashed, depressed and insane) and even though it’s the progesterone-only pill, it still apparently carries a risk of blood clots — which can cause stroke — which can cause locked-in syndrome! Great! There is no escaping it!

Btw, i had a similar feeling of dread the entire year that I was getting sick (and I didn’t know what was happening to me yet). So in that case, my feeling of premonition, of “something very bad is going to happen to me”, turned out to be ABSOLUTELY CORRECT. You can see why I’m internally losing my shit now. Like OF COURSE the same thing is going to happen to me again that happened in late 2021 (aka I lost literally everything that made my life worth living) ….except worse. And this time I will not recover.

(Btw when I say “recover” I just mean recover my ability to read and write again, which is what gives my life meaning. I am still 90% bedbound and very disabled, and ironically I feel like my current life is still too good to be true and it has to get worse)

I'm asking this here because i want to get more information and see that there are a few actual researchers in here. i'm interested in both research an theorys and i'm not judging ANY form of theory, based on actual evidence or just personal experiences/thoughts.

My partner recently gave me a cane that they found. It's adjustable, folds up and is quite lightweight. I wanted to see if it helps with my fatigue, especially when walking for longer periods. I was wondering if anybody has any tips for using a cane?

For context, I'm mild and fairly independent as a result. I'm also only recently diagnosed after 3 years of asking for an assessment. I was hoping to use the cane when I do things like walking to the shops or going out, but probably not all the time.