The news summary includes articles, videos, research, advocacy, coming events, and more.
⭐️ One highlight: The Time100Health list includes several people working on ME/CFS and Long Covid (Jaime Seltzer, Avindra Nath, Ziyad Al-Aly, Akiko Iwasaki, and others) ⭐️
I’ve tried every level of government and they simply won’t help. Ask people in real life if they have somewhere for me to go. Is anybody an #advocate? I need help.
I’ve tried every level of government and they simply won’t help. Ask people in real life if they have somewhere for me to go. Is anybody an advocate? I need help.
Super happy to see Jaime Seltzer in the #timemagazine 100 Health List. Used to occasionally interact with her on the bird site about #MECFS She is always generous with likes, shares & comments. The information she posts is the advice I trust most. One of the first to discuss #LongCovid in 2020. Congratulations Jaime! #meawarness#chronicillness
If you are able and would like help me escape abuse and pay for all the necessary services, I have a crowdfund at: https://www.buymeacoffee.com/ halcionandon
People with Australian bank accounts can use https://www.beem.com.au and pay to @halcionandon. It is fee free and anonymous both ends (so Visa, Mastercard and the platform charge no fees for me unlike Buy Me a Coffee)
I’m also registered at https://www.Prezzee.com.au for e-gift cards which help keep govt out of my finances. Any digital gift card for use in Australia is very appreciated. There’s plenty out there if Prezzee is not your thing. Universal or Amazon cards are best.
People help is also more than welcome - I need a place to stay, an advocate, social worker etc too. There are barely any resources allocated to my catchment area so I’m pretty much on my own. Have been trying almost 2 years to get an advocate!
Albanese’s Escaping Violence package shows no signs of including the #disabled and people with #ChronicIllness so we’re still on our own. Yes the government forgot to ‘forgot’ to include us. Current DV and family violence services won’t help us. I’ve tried them all.
Ask questions if you’re interested or need clarification. I’ve posted a lot too.
A fun #medical story from my past week… I’m trying to share the positives.
I had a surgical procedure Monday and had 4 nurses involved during various steps. My 2 surgical nurses knew what POTS was and treated me so well - they gave me extra fluids. :)
My last nurse in recovery… her 16 year old daughter has #POTS. What did I do? Of course I talked to her and answered questions and was an advocate… on my surgical bed… because that’s what I do. 💜☺️
So, here’s some personal and professional news… I’m going to be leaving my job pretty soon. 😬
It’s a bit of a wrench, because this job has been a big and exciting thing, for lots of reasons. But, you know, I have been having a shit of a time with the old #CFS and #POTS lately, and…
Hey Fedi friends! It's the end of the month again which means it's time for a new mutual aid request. (This ended up being a little longer than I expected but bare with me! CashApp & PayPal links at the end! :floof_Heart:)
To try and keep this short and since many of the folks who have known me or seen me around the Fediverse know or have an idea of what the current situation is like.
I'm a minor with no source of income outside of coding which does not bring nearly enough in for me to even buy lunch most months so I have to resort to mutual aids or theft (Which got me in a lot of legal trouble, but fuck the corporates.). I need at least enough fundings to support me (Age 16, turning 17 this year) and my younger sibling (age 15).
I am a high school student living in a crappy situation with divorced parents. Where one house, the main house, I am refused basic needs such as, but not limited to, food, water, hygiene, clothing, proper medical care, etc. While the other house, my mothers, is a hoarder mess with little to no food, and when there is non expired food that has not been gotten into by animals, months, mold, maggots, etc, it is often times one of the following: Chocolate, cookies, Twinkies, hostess foods, etc. My mother hoards much more than just garbage but indeed, animals also. (With over 70 animals in the house and dogs who are not potty trained along with more animals, outside of the house).
Neither houses include proper medical care. I have a chronic skin disease that causes me severe pain and if it gets bad enough, it becomes an open wound that tunnels often times on my chest or on my legs. My parents do not supply the proper medications I need for these, and when asked or mentioned needing the medications, I get told "Get a job". (Which I am also not allowed to have.)
I'm constantly at risk of being kicked out of the house at any time without warning, a couple of months ago I was locked out of the house in regards to being trans and using my chosen name tho thankfully this was after a school play and I had a safe place at the time.
CPS does not listen. The cops do not listen. I cannot speak up about any of these issues even to trusted adults as this causes more issues at home and gets CPS involved.
Cost breakdowns for the month! Any extra fundings will be put towards getting my parrot a new urn (His last one unfortunately broke).
MEDICATIONS: $50 (4x meds for chronic disease (3 prescription + 1 one reg), anxiety/insomnia meds, pain killers)
CAT FOOD: $20
TOTAL: $500
NOT URGENT BUT STILL NEEDED: I will be doing commissions in regards to funding for this stuff, it might take a little bit but I'll do it o7
URN REPLACEMENT: $160 (I know this is expensive but it was the cheapest urn I could find that was made with a decent quality that would work better for traveling with him, as this bird means a lot to me, even in death. If you've known or seen me around within my past year and a half ish on Fedi you'd know how much my beloved Leo was worth to me<3)
(We attempted to fix the urn but it didn't work very well as it proceeded to keep breaking and at this point it's cheaper just to replace it)
LAPTOP FIX: $20
(Keyboard had an incident where one of the keys broke and need to be replaced, this was a rough estimate on the price it should cost from a friend. - The laptop doesn't have a warranty 😹 but I need this for personal use + school + studies)
@blogdiva
I was ready to post a gift link then saw this isn't behind a paywall!
For those who don't know, POTS is one form of orthostatic intolerance. There are also other kinds.
Folks with ME/CFS often have some form of orthostatic intolerance. It's one of the optional features in CDC diagnostic criteria, meaning it's common, but not required.
Roughly half of Long Covid patients meet ME/CFS diagnosis so no surprise that many of them have it, too.