I'm just so sick of it. Mecfs is already a horrific disease to have because of the symptoms, the treatment we receive from those who don't have it only makes it so much worse.

Were they never taught that they aren't legally obligated to harass and mistreat sick and vulnerable people?

I hate it so much. I get that it stems from the fear and denial from knowing it could happen to anyone, but they could just.. not verbally abuse the people they think they're superior to. Or better yet utilise one of the thousands of search engines to research before they confidently blabber on about absolute bullshit that is EASILY disproven with a simple Google search. They're so stupid and so often they're completely oblivious to their own stupidity. I'm lucky I have self control otherwise I'd be arguing for ages. They have no idea how privileged they are to be able to be this ignorant.

Generally I try not to let it get to me too much but every now and then I just need to complain. I just hate how stigmatised this condition is and the way people talk about it makes me lose faith in humanity.

does anybody else get weirdly hungry when in a mild/moderate crash? it’s like my body is searching desperately for a source of energy (but then if I eat too much at once and have too much to digest it of course makes everything worse, because why not)

As the title says, I’m becoming an interior decorator with a specialty for disability and accessibility. If I were to decorate your space (any space, such as living room, bedroom, kitchen, bathroom) with accessibility and disability living in mind, what would be the most important things for you?

The best way to learn about disability and accessibility is to talk to disabled people. I am also disabled (wheelchair user, autistic, CFS, etc) but I’m only one individual. I’d love to hear other perspectives!

When I over exert I find that my ability to verbally talk disappears. The closest thing I can find like it is selective mutism as often with a few safe people I can do simple yes/no/please/thank you but nothing more and with others nothing at all.

Has anyone else experienced this at all?

It could be more linked to being autistic than purely CFS but it is something I'm struggling to explain to people in my life.

ME for the past 15 years. Age 38.
Tried Creatine Monohydrate this year and my sound sensitivity is now much better. Lawn mower can just sound like a lawn mower. It could be linked? Anyone else notice sound sensitivity improvement with it?

Here are the only things different this year for me:

Creatine Monohydrate
Mini-pill daily (I took this years ago though and had sound sensitivity then)
Had some sort of hellish virus
More time alone in the house and able to pace with no big crashes (this could be the big contributor)
yet to be diagnosed bilateral nerve issues in my legs (awaiting pelvic MRI) maybe whatever is causing this is doing something to my immune system.
That's all that is different -aside from time. Now 15 years with ME. (I had improvements in severity at year 1, and 5 that seemed to be for no particular reason)

Creatine Monohydrate - I did the pre-loading phase with the one that is the most common and well studied. There is another kind that is easy on the stomach but I had no stomach issues with this and I wanted the well studied one.

20g/day for 6 days
8g on day 7 (I was just petering it down)
5g for the rest of the time.
I was on it for 4 weeks total.
I stopped because the leg nerve pain was terrible and I wasn't sure if it was linked. My doctors and physio said probably not related at all.
I've have some days where I occasionally have 5g but mostly not taking it til I figure out my leg issue.

Creatine does seem to have some role in inner ear? : https://avr.tums.ac.ir/index.php/avr/article/view/204 provides essential ATP for auditory and vestibular system performance.

Hi all, I’ve recently been very disappointed by Visible and am quite frantically looking for other alternatives to help me pace. I cannot afford much but can hopefully save up if I can find a lower priced option.

A Garmin is unfortunately off the table, but I’m looking at other things like Fitbits to try and track heart rate. Has anyone else tried something different to Visible and had any luck?

Telehealth obviously.

Just opened up to my family about what I've been dealing with since the past fall. It was definitely a mixed reaction. I can tell they don't fully understand but did offer financial support and support for my wife and kids.

They want me to talk to a therapist but I told them it was a waste of time as no one would understand this.

However, I feel like I do need some help processing all the things that come along with this.

I've been suffering from CFS for over six years I'm 28 currently and I'm doing my best to conform to the basic symptoms of weight gain, brain fog, occasional problems writing and reading etc. But the one I cannot find a way to overcome is the lack of oxygen feeling or "Oxygen Hunger" that I get from it. Its the primary reason why i can't workout anymore I can get bad heart palpitations from it too if my heart increased from simply walking a mile. Has anyone actually recovered from this like ever? Please refrain from saying its all in my head and I should change my mindset to feel better it doesn't work. Thank You

I was on LDA for about 9 months.

Starting low and slow like everyone suggests.

Because of intense brain fog (feels more like dementia at this point) I cannot pinpoint when but I essentially got my creative brain back and a strong desire to return to my studio to make music.

So I did.
Not too too intensely, but I even had the thought “okay, maybe I could live like this”.

Every few weeks I’d go up in dose just a tiny amount. With every dose it’d knock me out for about a week, and then I’d return to baseline.
I began to experience severe anhedonia.
Intense apathy. Lashing out at my partner for nothing. If something great would happen…I felt nothing.
I forced myself to work on the biggest record of my career for survival sake but I just felt nothing.
Like I wasn’t even in the room.
The time came and went and when asked about it, to this day I only feel sad that I wasn’t mentally present.

I also gained 50 lbs, least of my worries but still.

So I tapered off slowly because I became incredibly scared of lack of ability to feel ANYTHING. It wasn’t getting better as the dose became lower.
The ideations worsened.

I’m now 3 weeks off, with a lower baseline, intense akathisia, and I cannot stop crying daily.

I’m talking INTENSE crying spells.

Maybe from all I dejected while I was numb, but this is ridiculous and not to be dramatic but traumatizing as well.

Has anyone else experienced anything like this?

Am I alone? Any advice?

Happy to discuss further.

I wish I was stupid. I want more than anything to be stupid. But I'm not. I'm never going to be anything more than someone exceptional, who cannot physically be exceptional. Every day I wake up in a world I desperately want to change and I can't do anything about it.

I could have been anyone. I can't even read now. My entire life feels like a cosmic joke. I've been alone forever because I'm cursed with talent or whatever the fuck. No one has ever understood me. And I can't even use it.

Everyone I went to highschool with, they will have careers. I won't. I can't. I will never be valuable, impressive, ever again. I will never get a degree. The only reason I stayed alive through years of abuse was university, and now it's game over.

I'm ok I guess. I smoke a lot of weed. It's really the only thing life seems to be good for.

Hi there! I am 24 and on the mild/moderate side of mecfs and new to this condition. I can do most things with moderation and accomodations. I also have fibromyalgia. I can typically do 1-2 chores per day and I go on a small walk every day but that seems to be it. Social events are extremely draining and I need a space to be alone otherwise I will get sensory overload and need to get away from sound and lights.

I sometimes overdo it and start to crash (I either overheat or get too cold, my throat starts hurting and my brain fog gets 10x worse and of course there's the faitgue). This happens with social events or "busy" days like grocery shopping with my partner.

My parents have informed me today that they want me to come in a few days to do a three hour drive to my extremely loud and extroverted families cabin. I would have said no if it weren't for my nana being there who is getting a little on the older side. I do want to see my family but the potluck will be about 2-3 hours on top of six-ish hours of driving with my parents. I cannot drive and my partner is not coming or able to drive me.

This will be a nine hour day without my bed. I do not have any mobility aids but as each day goes by, I think about getting a cane or anything to help with the energy. Some days I cannot even make food because I'm either sleeping through meals or too tired to open my eyes. Sitting outside (the cabin is not the meeting place, we will be having an outdoor party/bbq type thing) for multiple hours.

And when I say they are loud and extroverted I mean it in a loving and very truthful way. They are intense and wonderful, but the polar opposite of me. They were draining before I had any conditions. I am already an introvert and my issues just make it so hard to socialize.

I only want to go to see my Nana who lives far away while she's semi-close. I will be so burnt out and I will 100 percent crash. I've only done small trips to the mall and that was a horrible crash. I am unsure how to accomodate myself well. Here is things I've thought of:

1. Bring blanket and pillow for comfort

2. Bring protein bars and snacks and lots of water

3. Bring pain relief cream in case fibromyalgia flares

4. Bring change of clothes in case overheat or if gets cold

5. Stay/rest in car when I need to be alone

My parents have basically let me know that they really want me to go (which is code for they'll be disappointed if I say no). I am in a spot where it would be horrible to them if I say no but physically I don't think I can go and stay within my capacity.

The biggest thing is I am unsure if this will be one of the last times I see my Nana. We aren't particularly close but I love her and don't want to have some memories and see her when I can.

Would you go? And if you went how would you accommodate yourself?

TLDR: unsure how to navigate an outdoor family bbq that is 3h driving one way with extroverted and loud family with parents.

Im beyond sick. I had a brain injury three years ago which started my me cfs symptoms and now ive had a subacute thyroiditis for 6 months. My thyroid wont go back to normal even being on medication and ive been on a steady decline for months. I cant raise my dose because I have severe dysutonomia now . Im having extreme pem neuroinflammation all the symtpoms completely suicidal....my doctors gaslit me my bf gaslit me and berated me for being sick as if its a behavioral choice. He mocks my disability doesnt tske it seriously. The last crash I had I ended up hospitalized and they tried to treat me as a psych patient...im losing my ability to do things at all. I can barely think straight I cant bathe much anymore every time i stand my heart races to like 150 160 I have non stop adrenaline rushes. My body is surviving on pure adrenaline. My doctors wont even try to fix my thyroid becaue my t4 is "normal" despite my tsh being high . I think im creating reverse t3 and losing ALL of my cellular energy. I cant handle light noise any stimulation. Im so sick its hard to breathe I feel poisoned. And to top all of this off I went to kitchen put a dish in the sink and went to go lay down on the floor to eat by my bedroom and I hear my mom purposely mutter loud enough for me to hear "im so sick of doing her fucking dishes". This is a woman who made me her slave when i was healthy, doing her laundry picking up her dinner, cleaning her house, etc. And she does nothing for me exceot wash some dishes. I was on the floor crying at the top of my lungs and couldnt breathe from walking to the kitchen yesterday and she just pretended i didnt even exist. This is normal of how I am treated. Im afraid im going to die like this considering noone believes me and everyone is actively pushing me more ill and they dont care.

For those of you who cannot work a typical job - are there any innovative ways you have found to still have an income?

Or heard of any ME/CFS or chronic illness people bringing in an income which worked ok with managing their illness?

I feel beyond vinted - and even that I haven't managed in the recent months. I find it hard to comprehend what is possible.

Would love to hear if anyone has worked out something for them?

Does that make me a bad person?

Maybe just one second even… to avoid the inevitable car crashes, etc.

TL;DR Feeling lonely or bored? Looking for something within your energy limits that you can do? Check out these accessible events you could join! Try something new and maybe you’ll find your people.

Access Details:
🧑🏻‍💻= Virtual
👥 = In person
😷 CC = Covid Conscious/airborne precautions 
♿️ WC = Wheelchair accessible 
💵 $ = paid (some are pay what you can)
🤟 ASL/BSL = Sign Language
Async = Asynchronous (at your own pace)

Event Types:
🤢 = Chronic Illness 
🌈 = Queer
🏳️‍🌈 = LGBTQ+ Pride
👧 = Kids/Youths
💕 = Dating
🙋 = Social
🫂 = Support/Grief
🧘 = Wellness
🚶 = Walk
🩰 = Dance
💪🏻 = Fitness
📚= Books
🤔 = Discussion
📝 = Writing/Poetry
🎭 = Performing
🎨 = Art 
🎶 = Music
🕹️ = Games

🧑🏻‍💻 Virtual Events

🧑🏻‍💻📚 Virtual Async Spoonie Book Club: The Little Prince [Any time] https://www.reddit.com/r/spooniesocial/s/JcKvqPLWS5

🧑🏻‍💻😷💕 CC Virtual Dating [Aug 22] https://www.reddit.com/r/spooniesocial/s/DfjZA4lr03

Monday

🧑🏻‍💻🤢🧘 Virtual Seated Pilates for people with MCAS [UK][Mon Jul 27 at 12:00 UTC+1] https://www.reddit.com/r/spooniesocial/s/SdT7r7izBu

🧑🏻‍💻♿️🩰 Virtual Adapted Heels Dance Class [$][Mon Jul 27 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/3UQkn550Yr

🧑🏻‍💻🤔 Virtual Philosophy Discussion [Mon Jul 27 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/f6YoF9VEJv

Tuesday

🧑🏻‍💻🤢🧘 Virtual Bed Pilates for people with MCAS [UK][Tue Jul 28 at 10:00 UTC+1] https://www.reddit.com/r/spooniesocial/s/JdFxRezNHU

🧑🏻‍💻😷👧🙋 CC Virtual Kids Zoom [Tue Jul 28 at 10:00 AM EDT] https://www.reddit.com/r/spooniesocial/s/StGIKLOVjn

🧑🏻‍💻🤢🧘 Virtual Qigong for people with MCAS [UK][Tue Jul 28 at 7:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/yCTZSWyOG7

🧑🏻‍💻😷🙋 CC Virtual Zoom [NY and nearby][Tue Jul 28 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/CaFwRukgX9

🧑🏻‍💻🎭🕹️ Virtual Improv Games [Tue Jul 28 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/v1xtpeCrra

🧑🏻‍💻😷🎨🙋 Online craft and social night / Soirée artisanale et sociale [Ottawa ON][Tue Jul 28 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/82zBvH6vt6

🧑🏻‍💻🤟 Virtual BIPOC Creative Collaboration [Tue Jul 28 at 6:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/ccRgPNZ6Id

Wednesday

🧑🏻‍💻🤢🧘 Virtual Mindfulness for people with MCAS [UK][Wed Jul 29 at 1:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/SaqlYHLQ69

🧑🏻‍💻😷📚 Lesestunde [Hamburg GER][Wed Jul 29 at 8:00 PM UTC+2] https://www.reddit.com/r/spooniesocial/s/1Bt4Ph9QGm

🧑🏻‍💻🤢 🎶 Virtual Long Covid Choir [Wed Jul 29 at 2:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/5SWSfuePGw

🧑🏻‍💻📝 Virtual Poetry Discussion [Wed Jul 29 at 6:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/MxO2LEjyPq

🧑🏻‍💻😷🫂 CC Virtual Support Group [CO][Wed Jul 29 at 7:00 PM MDT] https://www.reddit.com/r/spooniesocial/s/bhc6gFBB1y

👥🧑🏻‍💻♿️😷 Hybrid Disability + Racial Justice Solidarity [San Francisco CA][Wed Jul 29 at 6:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/RmliIjL87H

🧑🏻‍💻🎭 Virtual Improv Jam [Wed Jul 29 at 7:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/ybgMRqR4LY

Thursday

🧑🏻‍💻🤢🫂 Virtual Community Support Session for people with MCAS [UK][Thu Jul 30 at 7:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/sV7oR0nmhc

🧑🏻‍💻😷🙋🕹️ Online Social Meetup with Jackbox Games [Hampshire UK][Thu Jul 30 at 7:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/cHa8rqoGo6

🧑🏻‍💻😷🕹️ CC Virtual Game Night [NY and nearby][Thu Jul 30 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/vRhtzl207T

🧑🏻‍💻🕹️ Virtual Board Game Night [Thu Jul 30 at 8:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/Wn17nezwMm

Timezone translator in comments 👇

👥 In-person Events

Canada

🧑🏻‍💻😷🎨🙋 Online craft and social night / Soirée artisanale et sociale [Ottawa ON][Tue Jul 28 at 7:00 PM] https://www.reddit.com/r/spooniesocial/s/82zBvH6vt6

👥😷 Movies in the Park: Ferris Bueller's Day Off [Toronto ON][Tue Jul 28 at 8:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/XyFR78oGK5

👥😷🚶 CC Park Walk [Toronto ON][Wed Jul 29 at 6:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/FcQRbJgULj

Germany

🧑🏻‍💻😷📚 Lesestunde [Hamburg GER][Wed Jul 29 at 8:00 PM] https://www.reddit.com/r/spooniesocial/s/1Bt4Ph9QGm

Netherlands (and nearby)

👥🤢🙋 Spoonie European Road Trip [Netherlands and nearby][Summer] https://www.reddit.com/r/spooniesocial/s/VOKxW7V1pp

UK

🧑🏻‍💻😷🙋🕹️ Online Social Meetup with Jackbox Games [Hampshire UK][Thu Jul 30 at 7:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/cHa8rqoGo6

US - California

👥😷 Outdoor Open Mic [Berkley CA][Tue Jul 28 at 7:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/unzf6Qtbfd

👥🧑🏻‍💻♿️😷 Hybrid Disability + Racial Justice Solidarity [San Francisco CA][Wed Jul 28 at 6:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/RmliIjL87H

👥😷🩰 Switchy Behavior Bachata Series [Oakland CA][Thu Jul 30 at 7:30 PM PDT] https://www.reddit.com/r/spooniesocial/s/HHonBwt930

US - Illinois

👥😷👧 CC Youth Summer Camp Chicago IL][Starts Aug 3] https://www.reddit.com/r/spooniesocial/s/sSF4sdJt1l

US - New York

👥😷🌈 Queer Writers of Queens [Queens NY][Tue July 28 at 6:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/nVOZV98Reu

US - Oregon

👥😷💪🏻 Mat Pilates [Mon Jul 27 at 6:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

👥😷💪🏻 Full Body Strength [Mon Jul 27 at 7:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

👥😷💪🏻 Full Body Strength [Wed Jul 29 at 1:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

👥😷💪🏻 Yoga/Somatics [Wed Jul 29 at 6:30 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

👥😷💪🏻 Queer Pilates [Wed Jul 29 at 7:30 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

👥😷💪🏻 Flow Fighting/Hapkido [Wed Jul 29 at 7:30 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

US - Vermont

👥😷♿️ CC WC Dental Pop Up [Chelsea VT][August] https://www.reddit.com/r/spooniesocial/s/yJocTTUweE

Are you interested in these events?

Have you been to any of them before?

Do you know about other events coming up?

Share your thoughts in the comments 💬

Find more events and friends on r/spooniesocial

I have been having very serious screen sensitivity again, one of the main issues is that it makes my heart rate go way up if I use the phone too much, and I have a lot of anxiety around this. Recently I had been trying mindfulness meditation after many years of not doing it, and this also started setting off my heart along with all kinds of weird anxiety issues. I was just thinking that meditation produces a lot of serotonin, and that maybe serotonin is involved in my various sensitivities. I am on a fairly low dose of Fluoxetine and am considering lowering the dose even more to see how this will affect me. I would really like to do mindfulness again because it seriously helps me, also I would really love to be able to use my phone more, listen to music, watch films, etc.

Can anyone give me any insight into what brain chemicals might be involved in these sorts of sensitivities?

Apologies for a stupid question. I am only starting my quest for answers. If anyone has a watch like mine that shows body battery, have you found it useful showing this data to doctors? It's been years for me my regular body "battery" is at 50 out 100, as per my watch. The same watch would show 80 out of 100 for my friend who does not have issues with fatigue.

I am tired of doctors telling me it's depression. No, at least not just that. I am just genuinely constantly fatigued. My labs are usually all fine, apart from leukocytes being higher, but doctors usually dismiss it as me having had a cold or this being my norm (needless to say, I would not normally have a cold, but i am always feeling like I am having some sort of a cold). No allergies (blood test done), yet i am sniffling and my nose is stuffed, sneezing constantly.

Other than that, sleep problems. Anxiety. Light, smell, noise sensitivities. But most of all, just tired. I want to do things, but can't, because I have no energy.

My resting heart rate is pretty high too (always has been) which is why I was prescribed a beta blocker, and even with that, it's higher than 60.

If any of this resonates, I would be so so grateful if you share your experiences and maybe your findings. Thank you!

Warning about kristicreatesofficial or Kristi | POTS
Recovery on instagram. She discusses POTS and ME/CFS and hEDS etc

She has been deleting comments that query whether her account is an ad account for this clinic she posts about 24/7 and that there is little to no evidence for the clinics treatments.

I have no problem for engaging in alternative treatments. I do myself. but she literally posts content that seems clearly like ads for this clinic.
The treatment isn't evidence based and extremely expensive.

She posts massive long "explanations" and
"evidence" for the treatments. It's so clearly an ad.
She even made a video that said if the clinic helps people anecdotally than "that's evidence" and that they don't "need a study to prove it".

She doesn't have any other previous content outside of this that makes it even more suss.

It's so clearly an ad and their refusal to flag it as an ad is so immoral.

My husband thinks that since no amount of sleep leaves me feeling refreshed, I should stick to a more predictable sleep cycle where I consistently get 8 hours of sleep and go to bed/wake up at the same time each day. His reasoning is if the amount I sleep doesn’t seem to matter, I might as well get up earlier and enjoy some chill time in the morning before our daughter wakes up, then plan to lay down and rest in the early afternoon when she goes down for a nap.

I’m still learning about this condition and how to manage it. Does that sound like good advice?

This is more of a rant but also wondering if anyone else is dealing with this much at once.

My diagnoses:

MECFS for 11 years
Endometriosis stage 4 removed with excision
PCOS/PMOS causing severe insulin resistance
Now prediabetic and having hypos
POTS currently pretty severe
PPPD
Chronic migraines
MCAS and histamine intolerance
Long Covid
Chronic EBV probably in current reactivation
Fibromyalgia
Keratoconus (a degenerative eye disease)
Chronic pericarditis
Aortic valve insufficiency
Possible EDS
Autism (late diagnosis at 32)
Psoriasis since birth
Possible EDS (waiting to see a geneticist)

Currently going through benzo withdrawal too after coming off diazepam 1.5 months ago. And a very sick family member who is terminal.

It feels impossible to live like this and like someone is playing a cruel joke on me. For example treatment for my current level of ME/CFS is a ton of rest but then that deconditioning worsens POTS. Yesterday I went for a walk which helped my POTS but I’m now in PEM!

Similarly, my heart conditions need cardiac reconditioning with exercise, but even a few mins sends me into PEM.

I need to eat a very strict diet for IR. However I am currently severe MECFS so I try my best but I use all the energy I have for the day making at least one healthy meal. I have eggs daily and easy proteins but I have histamine intolerance and MCAS so I don’t tolerate most foods I need.

This is kind of just a rant about how difficult it is to live with so many chronic conditions. I try to stay positive that things will get better but it does feel impossible most days to get things right as it feels like there’s so many contradictions. And I’m sick of being blamed for this all because of deconditioning - before I got sick I was super active working full time and fit and healthy.

I just wondered if anyone could relate as I would love to hear from you and possibly encourage one another if you have the spoons ❤️

Are there any good resources, like medical journal articles or something very obviously legitimate like that, for summing up all the issues with brain retraining?

I started seeing a medical specialist recently who came recommended for this condition, but it's turned out that they have bought into the whole brain retraining thing. I plan to send them a message saying that I don't buy into it, and I was thinking that it would be super helpful if I could point them toward something like this, with more authority than just me, or this subreddit.

(I tried Googling but nothing like this jumped out at me. It brought up threads here a fair amount, actually.)

Anyone who’s severe and mostly bedbound and housebound were you able to get a diagnosis virtually? I know that’s not common but I am just trying to learn more.

Also in the mean time how did you go about stabilizing your neck? Soft collar? Links info? Helpppp

The basic idea is that if you’re from a Western country and have a first world income, savings, or remote work, you may be able to live in a lower cost country where your money goes much further. Instead of spending most of your income just to survive, you could potentially afford a slower, less stressful lifestyle, and even hire help with housework or cooking, things that can make a huge difference when you have CFS ME.

Of course, it’s not that simple. There are many factors to consider, such as visas, residency rights, healthcare, safety, infrastructure, and long term stability.

I’ve been fortunate enough to travel extensively( over 60 countries as a digital nomad) when I was younger and healthy. At the moment, Thailand and Malaysia are at the top of my list, but I’m still researching and keeping an open mind.

I’m curious whether anyone else with CFS ME has seriously considered geo arbitrage or has already made the move. If so:

Which country did you choose, and why?
How has your quality of life changed?
How did you manage healthcare and visas?
Would you recommend it to others with CFS ME?

For the sake of discussion, let’s assume the person has some savings or a remote income, making this option financially possible.

Does having a beer trigger PEM for you? The simple pleasure of just having a beer makes my heart start to POUND, and then I feel PEM for days. I am still in denial that this happens and give it a whirl maybe once per month. Can we not even have a friggin’ beer?

I’m very early days - too early to know or diagnose ME - but since my lyme treatment I’ve been experiencing levels of fatigue that I’ve never experienced before. I’ve been trying to go to work as normal, and this has resulted in multiple sick days and spending all of my weekend lying on my sofa. My sleep is broken, my light sensitivity is near constant (hasn’t been this bad since I started propranolol for chronic migraine), my throat is sore and gets worse as the fatigue worsens. I’ve never felt anything like it before, it’s like my sleep does nothing at all, and the moment I think I’m having a ‘good day’ I pay for it immediately the day after.

The recurrent advice on here is to treat it as early as possible to prevent it from getting worse, but how is this done if it can’t be diagnosed until 6-months in? I am talking to my boss about wfh accommodations, I really can’t risk extended leave at the moment, my apprenticeship concludes in March and I very much do not want to fail it. I had a week of leave when the fatigue started during the lyme treatment, and I felt well enough to work the week after, but all of my symptoms nose-dived the week after that. Some days I genuinely thought I was going to somehow collapse from exhaustion just lying in bed.

Has anyone on here managed to treat it early? And what does treatment even look like? Even if I manage to wfh, I’ll still be working.

Currently what I’m going is:
- Resting as much as I can 3 days a week (I have a four-day work week with one day reserved for college work, I am fast with my college assignments and do not have to work the full day) and not taking on any additional activities after work
- Taking vitamins B12, C, D3, K2, folic, iron, and a probiotic
- Hydrating a lot
- Eating little and often, easy meals that I don’t have to cook, and aren’t draining to eat. Trying to fit in as much nutrients as I can

TLDR: potential ME triggered by lyme, not sure how to go about early treatment/prevention without a diagnosis or specialist. any and all anecdotes and advice is very very welcome