#NEISVoid

RE: https://bsky.app/profile/did:plc:2b3ldl5iw5gua4ihkyzuzurn/post/3m7ni2ephss25

Are you a #pwME / #pwLC / #NEISvoid, desire to be involved in advocacy or community in some capacity, but unsure how to get started or where to go? Please feel free to reach out / DM me anytime if applicable [asterisk being for US residents] #MillionsMissing #MyalgicEncephalomyelitis #LongCOVID

so I slept for about three hours and now my body is totally confused because it’s bedtime and my pain is saying don’t you dare move & my fatigue is saying the same thing but I don’t imagine I’ll actually go to actual sleep anytime soon. #NEISVoid

autoimmune/chronic pain flare today and I always wonder if maybe I'm just getting sick rather than I'm in a flare and neither case is good but one I know will likely be short-ish lived (sick) and one could go on for a long time (autoimmune) fuhhhhhhh health issues blow #NEISVoid

ME/CFS is UNBELIEVABLE levels of bullshit. #NEISvoid

SO MANY people I want to tag so they can have a little schadenfreude reading this fraud case "For example, the two researchers’ data showed people with a 'cancer-prone' personality were more than 120 times as likely to die from the disease as were those with a 'healthy' personality" #NEISVoid

RE: https://bsky.app/profile/did:plc:rgrtvrwpqyin6z365lx7pr3y/post/3m73yjxhspk2p

Like, I don't need anything specific. I don't even need an immediate solution unless it's life-threatening. I just need confirmation from a professional that "yes, something is wrong, you're not making things up." I am not a professional, I can't lift that weight on my own.

probably shoulda tagged this whole thing, so: #chronicillness #neisvoid

#NEISVoid seems to be be back up and running

Opinion piece on the word "journey" as a problematic euphemism for chronic illness.

"Sugarcoating my bitter pill, a chronic disease, by calling it a “journey” might sweeten it for you, but not for me."

https://www.statnews.com/2025/11/25/chronic-disease-journey-long-covid/

Screenshot from latest Science for ME weekly update

#LongCovid @longcovid #neisvoid
#chronicillness
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

Irish Examiner letter from one of our members

She highlights

-difficulty she had in obtaining a payment

-she gets less money because she is means tested both her and her husband's income/assets
(sadly this issue is not specific to Ireland)

https://www.irishexaminer.com/opinion/yourview/arid-41749731.html

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #Disabled
#Disability
#neisvoid
#chronicillness
#chroniclife

Do I know anyone on here with Thoracic Outlet Syndrome?
#NEISvoid

I don't even remember now how many weeks it's been since I had the plumbing re-piped, but I've been trying since then to catch up on household tasks that I couldn't do while I was holed up in my bedroom to stay out of their way. I've been trying to cram in a lot of tidying and cleaning tasks after work the last few days in particular. And I've had early meetings the last couple of days to boot.

I can definitely see how my sleep is suffering because I've been overdoing it. Sleep registers as higher stress than when I'm awake.

Today I was just feeling gross, trying to get through as much of my work as possible because next week's just going to be a lot. I paused for a moment, and woke up two hours later. Well hell. Guess I needed that.
#NEISVoid

Reminder: the Bateman Horne Center has online support groups twice a month for folks with with ME/CFS, Fibromyalgia, Long COVID, and co-existing conditions.

Next session is Tuesday, Dec. 9, and the topic is "Freedom from Thinking Traps Amidst Chronic Disease"

https://batemanhornecenter.org/event/online-support-group-108/

Advance registration required

@mecfs
@longcovid
@pots

#MEcfs #LongCovid #POTS #Fibromyalgia #ChronicIllness #NEISvoid #Support

Today's excitement: am I feeling crappy because of the weather, or because I got both doses of Xolair in one arm instead of two the other day?
#NEISvoid

That EEG took me the hell out and I’m still tired..

Ironically, I had to miss an epilepsy themed open mic because of it. Still no results that I can see. -Allēna

#medicalDiary #neisvoid

#chronicillness #mecfs #neisvoid #cfs #chronicfatigue #chronicallyill #autoimmune #healthcare

Oh yeah...migraine time, on a day when I'd planned to run many errands.

That checks out :(

Took a muscle relaxant, we'll see if it helps. It might mean no driving but there's not point in sitting around in pain. I can't drive in this much pain anyways.

#NEISvoid #ChronicPain

I have had a migraine/spinal pain for over a week that I just cannot shake. Some days are better than others, but overall it's just terrible.

Sent hubby out to the drugstore to try some muscle relaxant as every other kind of pain med I have attempted hasn't worked.

It's not often, every few months or so, that I get this specific kind of pain that just lingers.

Hopeful this might give me a smidge of relief.

(no suggestions unless you've lived with pain for 10+ yrs)

#NEISvoid #ChronicPain

I saw this posted to a private FB group but I'm not sure who the creator was?

Hashtags:
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #POTS @pots