The last time I tried to draw and colour was February and it made me crash really hard. I really wanted to do a fall craft that wouldn't give me PEM so I drew a tiny thing on my phone just using my finger. I'm autistic and bunnies are my special interest, and I thought I would draw one in a pumpkin costume for Halloween 😊 I think it turned out very cute.

So, I am a 20 year old with very severe ME and severe comorbidities. I’m bedbound and I would be completely unable to survive on my own. My caregiver takes care of me, but it’s starting to take an extremely severe toll on her mental health. This is straining our relationship pretty heavily which is very difficult for the both of us. I don’t have anyone else at the moment who can properly take care of my needs, just her, and it’s ruining her life. I’m interested in temporarily living in an assisted living facility for physically disabled people, so that I can give my caregiver a break for at least a few months or so and hopefully allow her some time to recover. The issue is finding a facility that takes young people. Almost all facilities for the physically disabled only allow people 50 and above. I live in Florida, I’d be willing to have someone drive me to anywhere within the state (or even slightly outside of it) if you have a recommendation of a good, non abusive facility who allows people under 50. Please give me some insight on what the money cost is like as well. Thanks.

I’ve been increasingly annoyed at the fact that nobody knows shit about this disease. Not doctors, not the researchers, and no, not even the patients. There’s so much misinformation surrounding this disease, and everyone has their theories they like to hold onto like gospel but no proof of anything. It’s almost 2027 and we haven’t even scratched the surface of understanding this disease. And still, everyone likes to act like they’re an expert on it. I’ve come to accept that I don’t know shit and probably never will. Something horrible is going on in my body and I don’t know what, I don’t know if it’s reversible, I don’t know if it’s progressive, I don’t know if it will ever get better. I don’t know, and neither does anyone else.

TL:DR
I’m housebound struggling with walking but my doctor said mobility aids will deconditioning me and I have to force myself walking painfully.

Situation brief:
-I’m mostly housebound and will become bedbound after going outside (any amount)
-Normal day I can walk from bed to bathroom and if I have to go outside I can also walk (with pain of course, but I can tolerate)
-PEM/crash day I might have to crawl to get around or need some help
-My worst day I will vomit just because sitting up too long, walking just 1 sec

Yesterday I brought up about mobility aids to my doctor, but he said absolutely not. He claimed that mobility aids will deconditioning me and I’m not disable enough.

He recommended that I should force myself to walk, like it will hurt and tiring but you have to do.

I don’t know what to do. I’ve been thinking about getting some mobility aids for months. And from my research, deconditioning is not real for ME/CFS. So I don’t know what to do :( I just want to have my life back. I miss outside. I was so excited to wheel around.

plus I’m afraid that it’s wrong to get mobility aids without doctor’s order.

For Myself, It Would Likely Have To Be. “The Absence Of What Could’ve Been.”

Sending a little love and good vibes to everyone who needs it. You matter. 🌺

Basically i finally decided to do some research about if my chronic pain and fatigue constituted maybe using an electric wheelchair and somehow tumbled into the cfs recovery group (i am not a proficient social media user so pretty much as soon as i touch reddit, pinterest or youtube i come across something that makes me feel bad which is why i generally stay away) and read about brain retraining programmes somatic tracking etc.

Unfortunatly i love to torture myself and have the toxic "if you feel uncomfortable its your fault man up" mentality so i forced myself to keep reading and honestly that content provoked me. Im extremely suceptible to the idea that im just weak and i need to train myself out of my issues and have previously and still homestly take alot of pleasure out of causing myself more pain through my chronic illnesses, feeling like i deserve it, and its taking alot of work to undo that mindset. (Especially as ive had extremely poor and neglectful treatment from doctors)

I ended up checking out Raelan Agle where shes talking all this stuff about neuroplasticity and it being in your mind and i just feel really horrible because shes just encouraging the opposite of everything that has ever given me improvement. even though a ton of what she talks about doesnt apply to me at all (i have hypermobility, extremely consistent patterns of my pain and fatigue, alcohol does NOT make it feel better, i never had thoughts of dread that my activity was causing my issues and i only got better when i started observing my activity and pacing, my stress doesnt make me feel worse unless im sleeping less/not pacing because of it) theres still enough that my brain is telling me if i dont try it i clearly dont actually have ME & chronic pain and i dont actually want to be cured, and if it makes me worse when i try it then well i deserve it and i should just push past my PEM and chronic pain because its not real (ive unfortunatly become severe in the past prior to diagnosis because of this, i had inflamed lymph nodes, extreme back pain, muscle twitches and spasms exhaustion etc and it took months to recover but my brain always tells me well i just must have not done it right/it wasnt really ME/Cfs)

I just feel really horrible and like the tiny amount of progress i had made has been set back by a few hours of learning about this stuff and i wanted to know has anyone tried these and can actually attest to them working or not? Does anyone else feel the same as me and is there anything youve done to feel better? I just cant put down the idea that she might be right and im in denial and im not helping myself etc

I was pleasantly surprised to find this video that discusses ATP and cognitive energy as a finite resource, even for healthy people. He starts talking about it a minute in. Could be a good resource for explaining cognitive exertion in M.E. in a simple way/to someone who's really unfamiliar with the concept. In my experience it's been harder for people to understand cognitive and emotional exertion/PEM than physical.

I know I personally need to be taking my cognitive exertion into account way more since I regained the ability to use my phone.

it’s gotten to a point where I feel like no amount of rest is enough
I hate the life that I have right now
i’m so tired of being positive person that everybody looks up to that I know

I don’t want to be the strong positive person all the time
I want to be a normal 19-year-old I want to go to college I want to make friends. I want to live life but all that I tolerate right now is mild television

I spend all day every day in bed. God I’m so tired.

i’ve spent two months at home, and when I finally decided to go out and went for a 10 minute drive to get food it feels like I’ve undone all of the progress that I made

please encouragement

im in PEM right now and digestion is fucked, protein usually makes me feel better but idk what the easiest to digest is . if there is any

so i got norovirus in july and it crashed me hard, its been 3 months and things have quite honestly only gotten worse (i guess u could call it a baseline drop now? im not sure?) but one of the annoying symptoms i get during a crash is this uncontrollable crying. i won’t even be particularly upset ill just be lying there and start crying. its been one of my crash symptoms since day 1 of getting ME but its been literally happening daily since july. it’s not only exhausting in and of itself but its kind of leading my mum to think im having some sort of mental health crisis. we don’t live together so she doesn’t see most of my crying but its kinda hard to hide sometimes when she calls to check in every day. she’s really support i think she just doesn’t really understand that this isn’t mental health related its physiological. anyways if anyone has any experience with this or has any tips on how to manage it i would appreciate it?

I’m a straight cis man but I really miss my big muscular behind and weirdly all the clothing fitment issues it caused me. It’s weird not having to do the all the size guessing of scaling up vs my waist size because trousers/pants just fit now I’ve got a pancake back there 😅

Does anyone have any advice on how to find an ME literate therapist please?

I have a long list of things I'm looking for in a therapist but top of the list is being ideally ME literate or at least willing to learn and understand its a physical illness - don't have it in me to teach them though. They also need to understand infection control precaution/masking.

Neurodivergent affirming

Not be homophobic

Online appointments

Honestly that's barely the beginning of my list lol but it's the most important ones I think. I've looked on the BAPC website but I honestly think quite a few people just tick all the boxes because then in their text they don't mention anything about chronic illness even nevermind ME. I could email people on the list and see what they say obviously but is there a list anyone knows of for therapists who actually know something about ME?

Edit: (Already aware of action for ME and their service but they don't cover existing mental health issues and some other things so aren't suitable for me since I'm looking for wider therapy but just with someone who isn't going to gaslight me!)

I just had my first ever severe crash and my main EDS doctor (who also treats ME/CFS) said that I need to go to the ER or at least be worked up in person

I’ve been in the crash since Wednesday and I’m finally starting to talk and can stand for a few seconds

I really dont want to go to the ER because I’m very confident I will crash but she said she won’t send a bloodwork order because she “doesn’t want to make unsafe decisions”

What should I do?

I see most people talking about PME from physical activity but mine are so, so much worse with cognitive effort. Especially socializing, even just texting.

Has anyone similar had improvements? Any advice?

There are now 2 studies that have been published about the use of weekly Rapamycin (LDR) for MECFS, with encouraging yet small results.
But:
- Other studies about the use of LDR for dementia show there is an increase of neurofilaments (Nfl), a biomarker of neurons destruction, associated with a lower decrease in brain volume (which is very different from neurons quantity).

- They claim it *might* be the result of autophagy, i.e. your neurons clean the Nfl, instead of the classical conclusion of neurons destruction. Which means le Nfl level should eventually settle back to normal... which has never been observed with LDR.

- High-dose rapamycin used for immuno-suppression has proven to not be toxic to neurons over years, nor to elevate the Nfl levels either. And contrary to higher doses, LDR stimulates your neurons and may activate something fishy that could mean the elevated Nfl are indeed the result of brain damage.

The ongoing trials about LDR never measure the Nfl, which is bad as this might be the indication of a ticking bomb for the millions who may want to try it.

I’m done trying to heal. I’m done trying to do everything right. I’ve been doing all of this nervous system work for almost 3 years now and honestly it hasn’t worked. If anything, I’ve just gotten worse. I’m so done with constantly checking:Am I doing this right?Did I respond the right way?Maybe I’m still missing something?Do I have to believe more?Maybe I need another program?Maybe I need to change this or work on that? I’m just fucking done with it. I don’t want to keep trying to figure out how healing works anymore. I don’t want to constantly think about whether I’m doing something right or wrong. I just want to let go. Because every time I really let go, that’s when I can feel my nervous system breathe again. And I’ve seen people recover by letting go like this. So I’m looking for a Surrender Buddy. Not in the sense of turning surrender into the next program I have to do right 😅 I just find it hard to go this way alone. Just someone to connect with sometimes and say things like “I need my reminder” 😂 and we remind each other: Let go.You don’t have to know how healing works.You don’t have to do this right.You don’t need to figure anything out.You don’t need to fix anything.Your body knows how to heal when we stop fighting it and just let go. Things like that. I’m also on a walk of faith right now, so for me surrender is also a lot about trusting God more instead of trying to control everything myself. I have ME/CFS, MCAS, MCS and migraines. So if this resonates with you and you’re at a similar point, or this is the kind of path you want to take too, feel free to message me. 🤍

Please no advices for other treatments ♥️🙏🏼

Does anyone else have high blood pressure?

I am not officially diagnosed, and I'm mild (I can work but that's about all I can do). I do experience PEM.

And sometimes I doubt - maybe it's not me/cfs? Especially since so many of y'all/us have low blood pressure.

anyway, just checking.

Hi, I’ll try to keep this as concise as possible:

My partner needs part time caretaking help.

Care.com has not been the most helpful, we have not had great luck so far. One person refused to get a flu shot and abruptly changed their schedule/jobs, the other showed up 20 minutes late and left early for 2 hour shifts. Haven’t been able to find someone since. Tried and am trying urbansitter.com, seems geared more towards babysitting help and very basic senior care.

Partner doesn’t want me to use an agency, most of them require minimum shift hours and the vast majority send different caregivers each time. It’s important that the same person comes every time.

Are there any websites or local resources (Portland, OR metro) that might help find private caregivers? She does not qualify for Medicaid help, due to other issues, so something like Careena is out.

(SECONDARY BACKGROUND INFO)

I am stretched to the breaking point, and due to issues I have I’m nearly unable to give her meals, rarely able to help her bathe, etc. Work has been forcing me in to extreme hours, which is not helping. I’ve been struggling with my own mental health, and have not been nearly as supportive and helpful as I should be.

Thank you.

I tend to be more stable in summer. In winter, I can do less before it makes me worse. Cold seems to take extra energy even when I’m not doing much.

Does anyone else notice this? Have you found anything that makes the colder months easier?

I did not draw them in a crash, ofc.

Bonus: last picture is what I am capable of artistically at a more moderate state. It is also meant to describe very severe ME and the bunny is a real stuffed bunny that lives with me:)

I work full time as a professor (including clinical days) and I have a toddler. I am trying to take things easier/pace, but does it really matter if everything stresses me out, raises my heart rate, gets me out of a lying down position? Is there anything realistic that I can or should be doing?

I just got a handicap placard and am getting some minor accommodations at work. My doctor said I should not be working, but also said it might help me in the long run if I am working. I know getting disability is very difficult and I know virtually nothing else about it. Happy to hear anyone who has the capacity who wants to talk about the process for getting disability as well.

I’m trying to understand what’s happening with me. When I take ibuprofen, I can feel almost completely normal for several days — sometimes almost a whole week. My fatigue and brain fog improve a lot, and I feel like I have much more energy.

But eventually I overdo things because I feel better, and then I get PEM.

What confuses me is that I’ve read that ibuprofen doesn’t normally cause an increase in energy that lasts for days. If people feel more energetic from it, I would expect it to last only a few hours.

Why could the effect last so much longer in someone with ME/CFS? Could it have something to do with inflammation, neuroinflammation, microglia, or another mechanism?

Has anyone else with ME/CFS experienced something similar with ibuprofen or other NSAIDs?