These are public posts tagged with #NEISvoid. You can interact with them if you have an account anywhere in the fediverse.
I've been down rabbit holes of research pertaining to the CBS gene and how it plays a role in sulfur pathways and methylation. Is there anything you know about the CBS gene that you'd like to share? I'd love papers to look at! #NEISVoid #MedSky #Genetics #Methylation
Chronic illness things
Participating in public life while having chronic illnesses means you pretty regularly need to disclose what is happening within your body sometimes to a literally molecular level, and explain what that means in a way that doesn't anger people you like but is also threatening enough that they actually respond. And this one is a relatively common one with clear if sometimes difficult remedy.
Posting this for my #NEISVoid ppl but also in case anyone on here organizes conferences they want to be accessible, if someone says they have a dietary restriction, you need to a) make sure they have food, and b) tell them you have seen their request and what they should do about food
Well, not the happiest intro but I’ll cut/paste this here while I still remember then add a proper intro spoons allowing..
Please #boost and share to other platforms spoons allowing.
Seems I’m desperate enough to go to the media for help. Yes, the trapped woman in the article below is me.
My story: https://www.thecanary.co/global/world-analysis/2024/05/03/me-cfs-anna-australia/
More info on how to help:: https://buymeacoffee.com/halcionandon/
Beem: Halcionandon
I’ve tried every level of government and they simply won’t help.
- Please ask people if they have a spare room or somewhere to go. Maybe you have somewhere?
- Is anybody a #DisabilityAdvocate? #SocialWorker? Need help.
Please don’t give me contacts for domestic violence orgs. They don’t help disabled people with housing & only offer counselling. Also, that list of disability advocates going around for #Melbourne #Australia (where I am) is outdated - there aren’t any in my catchment. So I’m looking for volunteers with some background.
Thanks for reading
#PwME #LongCovid #MECFS #Hypothyroidism #ChronicIllness #Neisvoid #NacissisticAbuse ##Housing #Dysautonomia #SocialWork #MedMastodon #PWLC #MutualAid
#HumanRights #Press
@mecfs @chronicillness @neisvoid
@disability @disabilityjustice @socialwork @mutualaid
@chronicillness
Nobody tells you how quickly being in pain gets boring. Like oh, excruciating pain again? We did that yesterday, could you come up with something different? I’ve got plans.
#NEISvoid #ChronicPain
Me every month: oh cool, I think this month my sciatica isn’t as bad, maybe the birth control is finally helping.
Also me every month the next day: FUCK, never mind!
#NEISvoid #ChronicPain
Just finished another rabbit hole...
#NEISVOID #MCAS #HistamineIntolerance #DAO #Genetics
pmc.ncbi.nlm.nih.gov/articles/PMC...
Histamine Intolerance—The More...
The intake of food may be an initiator of adverse reactions.…
PubMed Central (PMC)"The doctors are not OK"
https://mecfs.substack.com/p/the-doctors-are-not-ok
Blogpost arguing that doctors may not be willing to admit in a consultation they don't understand a patient's condition/symptoms/etc & instead not treat them well (e.g. gaslighting them) because of the way they themselves were trained
@chronicillness
@spoonies
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
A protest guide from #MEAction for folks with ME/CFS, Long Covid, and other chronic illnesses that cause limited energy:
https://www.meactions.org/_files/ugd/b5886a_67f8935af3594508b1a7bcd86e6b7c58.pdf
"We hope this guide can help activism become more intersectional and enable those attending events to do so as safely as possible."
#USPol #MEcfs #LongCovid #POTS #Fibromyalgia #NEISvoid #ChronicIllness #Disability #Resist #Protest #WearAMask
PH, new medication get
Having fully weaned myself off of Pregabalin a little while ago now, I finally had my next appointment with my GP and he's decided to skip over Gabapentin and go to Duloxetine.
Apparently this is both good for pain management and for depression, so I'll be interested to see how my body reacts to all of this.
I took my first one earlier, and I'm feeling a little floaty...but that could just be because of the lack of sleep and the pre-existing pain and stuff.
Does anyone have any experience with Duloxetine for pain management? Anything I should be aware of?
This week’s game is apparently “how many of my chronic issues can flare up simultaneously?”
0/10, lots of notes.
#NEISvoid #ChronicIllness #ChronicPain
8/
“Sloan’s study similarly found higher rates of healthcare avoidance and of underreporting symptoms “from distrust and fear that symptoms would be disbelieved and misattributed again,” the researchers wrote.”
#neisvoid #longtermdisease #longtermillness
@lupus @eds @fibromyalgia @ibs @mecfs @longcovid @chronicillness @spoonies
Medscape (widely read by health professionals):
‘Symptom Invalidation’ in Clinically Uncertain Diagnoses Can Leave Lasting Mental Health Harms
https://www.medscape.com/viewarticle/symptom-invalidation-clinically-uncertain-diagnoses-can-2025a1000ewd
(may require free registration)
Thought this was good & interesting.
@chronicillness
@spoonies
#lupus @lupus #neisvoid
#chronicillness #hiddenillness #invisibleillness #ChronicIllnesses
#Spoonies #ChronicallyIll
#POTS @pots #IBS @ibs fibromyalgia@a.gup.pe
#Fibromyalgia #Fibro #FMS @longcovid #LongCovid @mecfs #MEcfs
1/
Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds
https://www.eurekalert.org/news-releases/1074887
Image is a screenshot from June 2025 AMMES e-newsletter
@chronicillness
@spoonies
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
News release 04 June 2025:
"Groundbreaking discovery of 'new' pain target brings hope for those with chronic pain"
https://www.abdn.ac.uk/news/24440/
Link to associated research paper:
https://www.science.org/doi/10.1126/sciadv.abc5219
#pain #ChronicPain @chronicpain @chronicillness #neisvoid
#chronicillness
#chroniclife
#ChronicPain life be like: when do I take this pain med so that I can help with pride set up but also enjoy being AT pride?
#NEISVoid
"One Red Leaf at a Time: an international art project"
https://theredtreeandme.substack.com/p/one-red-leaf-at-a-time-an-international
"The Red Leaf Creative Collaborative is excited to launch One Red Leaf at a Time: an international art project."
To contribute a creative expression on the theme of ‘One Red Leaf at a Time’ please register your interest at this link:
https://bit.ly/OneRedLeafArt
If you don't have a google account then send email to jo@theredtreeandme.com
#MEcfs #PwME #POTS #LongCovid #NEISVoid #ChronicIllness #Spoonie #Art
PH, A Day Out, London
In the build up to yesterday, I thought to myself "I'm going to spend the day being pushed around in my wheelchair, so I'll have more than enough energy left by the end of the day to do other things when I get home."
Turns out that's just not a thing for me.
London was *loud*, far louder and busier than it ever felt before I started unmasking and accepting my disabilities, which certainly did not help.
But it turns out being sat up all day, unable to lay down, barely able to eat or drink for fear of having to use a public toilet (which, tmi, did unfortunatelylead to a small accident), trying to navigate a world that is *not* accessible, and having a 2 hour long GIC appointment that I've been waiting for 7+ years for in which I basically bare my heart & soul to the Dr, all sort of combined together to destroy me.
Even just one of those would ruin me, so all of that together worked out to have me barely conscious by the time we got back to the train station.
If nothing else, yesterday was proof positive that I am no longer fit for work.
I'll write a thing about my actual experience with the GIC later, when I'm more awake/have more energy/etc.
#NEISvoid #Spoonie #Fibromyalgia #MECFS #ChronicPain #ChronicMigraine #ActuallyAutistic
Is anybody able to recommend a good, free app to go with a heart rate monitor for android?
One that pairs with an actual device, not one that uses my phone's camera.
I expected this one to come with an app, but it didn't, and every other app I can find is only willing to give me a few days free trial before charging me way too much.
Preferably not an exercise focused app, too. I'm not exercising, I'm just trying to be alive.
EDIT:
Nevermind. I'm returning the monitor.
EDIT 2:
Just in case anybody stumbles across this and would also like to know, I got pointed toward GadgetBridge, an app downloaded through f-droid, which helps access a lot of the functionality of smart devices without the need to sign up to a paid or data-harvesting service.
Check that for compatible devices, and from there, it is relatively simple to pair the device ^_^
I'm realizing today that this has been a particularly difficult breakup to fully get past because one of the things I used to do that I can't anymore for a variety of reasons ( #NoCovid #NEISVoid ) is to get to know myself again by having a bit of a renaissance. Take a bunch of classes, go to new places, just explore and learn and meet new people. Get to know myself again.
I ain't gonna take classes, at least not in person, because it's not worth the consequences anymore. I can't travel anymore - I can barely go further than 30 minutes in any direction. I did manage one concert, but that's a major production number, whereas when I was last single it was just something I did because it was right there.
So how do I have a renaissance from my couch, without just engaging in consumerism?