episode done at a hospital treatment. kind of a recording in the wild lol

Links I mentioned

Petition

https://bit.ly/Marcia_petition

Canary opted December 19th 2025

https://www.thecanary.co/opinion/2025/12/19/me-void/

Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis

https://www.mdpi.com/1648-9144/57/9/885

photo is of first blossoms that I saw yesterday! That usually lifts my spirits Because I love spring. But it's the wee hours in the morning where pensive and melancholy seem to be emotions that I'm experiencing. So in this episode I've had to puzzle out why I am feeling this way. I think it's partly because all that's ahead of me right now is fighting without anything to look forward to Because I don't know how far the current GoFundMe money gets me into January. And it's unfortunate that that impeded my ability to enjoy my friends this evening. But hand to mouth like this tends to even blot out the good things sometimes. And that's frustrating and it seems to be amplifying my melancholy. often focusing on things like an upcoming MP constituency appointment can lift me with that purpose. But that's not working right now. ultimately I think I just feel alone even when with people because of what's happening to me

I talk about the op-ed https://www.thecanary.co/opinion/2025/12/19/me-void/

and Petition

https://bit.ly/Marcia_petition

My op-ed is out! https://www.thecanary.co/opinion/2025/12/19/me-void/ (Linkbio)

If you could share the op-ed everywhere you can that would be amazing. Posts I've made for easy sharing

Insta https://www.instagram.com/p/DSc6ciGiQv0/?igsh=MXFnemtrd3Y3eGx6eA==

Fb https://www.facebook.com/share/p/1AKdjYyQ72/

Twitter https://x.com/i/status/2002061384209867072

Blue sky https://bsky.app/profile/madelinenerd.bsky.social/post/3mae64ynmms2l

It getting published so close to Christmas means having it shared by people like you is extra extra important for I'm not sure how much of an impact it has on the petition and the GoFundMe(which currently runs out mid-January which means I would have to stop life maintaining supports. that's kind of eating my brain).

For anyone you are sending it to who doesn't know about my situation, the op-ed does link to 2 articles that this publication wrote last December about my situation which gives a pretty good sense of what's the what. and of course That also means I've been verified six ways to Sunday about these things

I don't have the brain power to read this last op-ed edit, so I'll be interested hearing what you think

I got to have a flyby encounter with David Eby yesterday, who's my MLA, and once again ask for a constituency appointment which I've been begging for for the better part of almost 2 years now. Cuz that's the only way I get proper supports and can stop begging for my life on the internet🤞

I did tell him about the petition hoping that might speed up the constituency appointment process https://bit.ly/Marcia_petition . Also I did my best in a crowded loud environment to express that the petition encapsulates easy solutions. I didn't have the rain power to say how much they save the system money both directly in people like me not slamming into the ministry of Health but also indirectly by the The 36%-37% ( https://academic.oup.com/ofid/advance-article/doi/10.1093/ofid/ofaf533/8244677?login=false )of the population getting long covid having correct instruction and support so they don't unnecessarily become disabled get removed from the tax base.

Oh well. Hopefully I'll get a chance to say it in person at a constituency appointment. 🤞

Warmest holiday wishes

Marcia AKA Madeline

#MyalgicE #meaction #christmas #longcovid #christmastime

My op-ed is out! https://www.thecanary.co/opinion/2025/12/19/me-void/ (Linkbio)

If you could share the op-ed everywhere you can that would be amazing. Posts I've made for easy sharing

Insta https://www.instagram.com/p/DSc6ciGiQv0/?igsh=MXFnemtrd3Y3eGx6eA==

Fb https://www.facebook.com/share/p/1AKdjYyQ72/

Twitter https://x.com/i/status/2002061384209867072

Blue sky https://bsky.app/profile/madelinenerd.bsky.social/post/3mae64ynmms2l

It getting published so close to Christmas means having it shared by people like you is extra extra important for I'm not sure how much of an impact it has on the petition and the GoFundMe(which currently runs out mid-January which means I would have to stop life maintaining supports. that's kind of eating my brain).

For anyone you are sending it to who doesn't know about my situation, the op-ed does link to 2 articles that this publication wrote last December about my situation which gives a pretty good sense of what's the what. and of course That also means I've been verified six ways to Sunday about these things

I don't have the brain power to read this last op-ed edit, so I'll be interested hearing what you think

I got to have a flyby encounter with David Eby yesterday, who's my MLA, and once again ask for a constituency appointment which I've been begging for for the better part of almost 2 years now. Cuz that's the only way I get proper supports and can stop begging for my life on the internet🤞

I did tell him about the petition hoping that might speed up the constituency appointment process https://bit.ly/Marcia_petition . Also I did my best in a crowded loud environment to express that the petition encapsulates easy solutions. I didn't have the rain power to say how much they save the system money both directly in people like me not slamming into the ministry of Health but also indirectly by the The 36%-37% ( https://academic.oup.com/ofid/advance-article/doi/10.1093/ofid/ofaf533/8244677?login=false )of the population getting long covid having correct instruction and support so they don't unnecessarily become disabled get removed from the tax base.

Oh well. Hopefully I'll get a chance to say it in person out of constituency appointment.

Warmest holiday wishes

Marcia AKA Madeline

#MyalgicE #meaction #christmas #longcovid #christmastime

where I talk about pushing my energy envelope so that I can have some good experiences in the face of all the hardship I'm going through. yeah it's making my pain and exhaustion dramatically worse but it's really nice feeling to to have a sense of that accomplishment and to be able to use my talents to do something that helps other people feel good in the face of the difficulties they're going through

where I talk about The fine art of distraction, a particularly bad episode of pain, the perils of not having housekeeping supports, fear around running out of the GoFundMe money that I use for treatments, and the holiday season and my birthday which are both highly emotional times

I talk about the petition https://bit.ly/Marcia_petition

and the GoFundMe https://gofund.me/6d981312

where I talk about an op-ed I'm in the final edit stages (Yes I'll post it the minute it's up in a new episode)

And I talk about Sinterklaas, celebration of the name day of St Nicholas, December 6th. He comes on the eve, December 5th, to bring presents to children

https://www.dutchready.com/blog/traditions-in-the-netherlands-sinterklaas/

And here's the video I talked about *Marcia's Very Beary Folkfest Adventures* https://youtu.be/DBxf-osYOYI?si=tO6sLbhiAU04TK1O

and the other video I mentioned that was made by the youth volunteers of the khatsalano days festival with the teddy bear project https://youtu.be/g_ZSBiPy4ZY?si=QPdMn8lNZHO2oyd4

note: The photo is from the internet and is not copyright to me. here's where I found it https://3.bp.blogspot.com/-ms27JJEPgf4/UKpQ8OUgbYI/AAAAAAAAKq4/DYx2ckFOzvY/s1600/ANP-21230297-475x735.jpg

to borrow part of a quote and replace discretion with preparation, hence preparation is the better part of valor when it comes to myalgic encephalomyelitis deterioration. So today I talk about some of those strategies and the pros and cons of the energy spent trying to figure them out at at the best price to factor in running out of money which is the whole reason I have to do the strategies

also where I update you on what's been going on since the last couple of episodes I melted down.

I mentioned the petition so here's the link https://bit.ly/Marcia_petition

I also mentioned a recent GoFundMe update so here's that link https://gofund.me/6d981312