#Post viral

[realidadposts]

[vergess]

GOOD EVENING EVERYPONY LONG COVID FINALLY HAS AN OFFICIAL MEDICAL DEFINITION WOOOOO

Not sure why this matters?

It's the first step in creating accurate diagnosis which is critical on researching how to improve recovery outcomes.

You can read more here:

As always, remember to mask up and stay vaccinated.

[hellyeahsickaf]

"My body hates me" "Ugh I hate my lousy ass body always holding me back" "I'd hang out but my stupid body's too fucked up to let me" I know it feels like your body's working against you but it isn't- it's doing its best to protect you and keep you alive

If your chronic illness is post-viral and/or autoimmune your body's doing everything it can to fight a constant battle against what it believes to be a threat. Sometimes it develops because an infectious disease has interfered with the functions your body carries out. And some illnesses develop symptomatically as a survival response because your cortisol production indicates that constant fight or flight isn't working so it forces a freeze response. If you're in pain, fatigued, have brain fog, etc, you can't exert yourself and are forced to conserve your energy. That way you don't overdo things and possibly compromise your survival. It feels like a lousy survival response, it really sucks, but it's still an indicator that your body's doing its best

You can hate your symptoms and vent about how much they suck, I know they truly suck balls and some days I just wanna scream and break things while I'm in bed struggling to keep my eyes open. Just don't forget that your body doesn't "hate" you and you should treat it kindly. Many symptoms like pain are there to tell your brain something's threatening it- even if your nerves are misinterpreting sensations like strong temperatures and sending pain signals to your brain. Billions of little cells and microorganisms are working 24/7 to keep you going. Those little guys carry out so many functions and none of them are for the sole purpose of making your life harder. It always comes back to your body trying to survive

[myalgicencephalomyelitiscfstom]

[thvjkks]

⠀⠀⠀moodboard ; 🏁

[rodrigofut]

[ernestoednrec]

Pero nadie ve las cosas que uno ve más que el Caesar

[survival-of-the-chillest]

i finally did the thing!

woohoo ig

[amanayeon]

[realidadposts]

[angelskysposts]

𝙷𝚊𝚙𝚙𝚢 𝚗𝚊𝚝𝚒𝚘𝚗𝚊𝚕 𝚜𝚞𝚒𝚌𝚒𝚍𝚎 𝚊𝚠𝚊𝚛𝚎𝚗𝚎𝚜𝚜 𝚖𝚘𝚗𝚝𝚑. 🦋

𝙸'𝚟𝚎 𝚔𝚗𝚘𝚠𝚗 𝚜𝚘𝚖𝚎 𝚏𝚛𝚒𝚎𝚗𝚍𝚜 𝚕𝚘𝚜𝚝 𝚝𝚘 𝚝𝚑𝚎𝚒𝚛 𝚘𝚠𝚗 𝚋𝚊𝚝𝚝𝚕𝚎𝚜 𝚠𝚒𝚝𝚑 𝚝𝚑𝚎𝚒𝚛 𝚍𝚎𝚖𝚘𝚗𝚜, 𝙸 𝚔𝚗𝚘𝚠 𝚜𝚘𝚖𝚎 𝚝𝚑𝚊𝚝 𝚊𝚛𝚎 𝚜𝚝𝚒𝚕𝚕 𝚌𝚘𝚗𝚝𝚎𝚖𝚙𝚕𝚊𝚝𝚒𝚗𝚐 𝚝𝚒𝚕𝚕 𝚝𝚑𝚒𝚜 𝚍𝚊𝚢. 𝙼𝚎 𝚙𝚎𝚛𝚜𝚘𝚗𝚊𝚕𝚕𝚢 𝙸 𝚌𝚘𝚗𝚜𝚒𝚜𝚝𝚎𝚗𝚝𝚕𝚢 𝚏𝚒𝚐𝚑𝚝 𝚝𝚑𝚒𝚜 𝚋𝚊𝚝𝚝𝚕𝚎 𝚍𝚎𝚎𝚙 𝚠𝚒𝚝𝚑𝚒𝚗 𝚖𝚢 𝚘𝚠𝚗 𝚕𝚒𝚏𝚎 𝚒𝚗 𝚝𝚑𝚎 𝚙𝚊𝚜𝚝 𝚝𝚘 𝚝𝚑𝚎 𝚏𝚞𝚝𝚞𝚛𝚎.

𝙰𝚝 𝚝𝚑𝚎 𝚎𝚗𝚍 𝚘𝚏 𝚕𝚊𝚜𝚝 𝚢𝚎𝚊𝚛 𝚘𝚏 𝟸𝟶𝟸𝟹! 𝚠𝚊𝚜 𝚛𝚎𝚊𝚕𝚕𝚢 𝚛𝚘𝚞𝚐𝚑 𝚏𝚘𝚛 𝚖𝚎 𝚋𝚞𝚝 𝚏𝚘𝚛 𝚝𝚑𝚎 𝚙𝚊𝚜𝚝 𝚜𝚎𝚟𝚎𝚛𝚊𝚕 𝚖𝚘𝚗𝚝𝚑𝚜 𝙸 𝚖𝚎𝚊𝚗 𝚖𝚘𝚗𝚝𝚑𝚜 𝙸'𝚟𝚎 𝚋𝚎𝚎𝚗 𝚐𝚎𝚝𝚝𝚒𝚗𝚐 𝚋𝚎𝚝𝚝𝚎𝚛 𝚊𝚗𝚍 𝚋𝚎𝚝𝚝𝚎𝚛 𝚎𝚟𝚎𝚛𝚢𝚍𝚊𝚢. 𝚂𝚘𝚖𝚎 𝚍𝚊𝚢𝚜 𝚊𝚛𝚎 𝚠𝚘𝚛𝚜𝚎 𝚝𝚑𝚊𝚗 𝚘𝚝𝚑𝚎𝚛𝚜 𝚋𝚞𝚝 𝙸 𝚖𝚊𝚗𝚊𝚐𝚎 𝚝𝚘 𝚙𝚊𝚜𝚜 𝚝𝚑𝚛𝚘𝚞𝚐𝚑 𝚒𝚝 𝚎𝚟𝚎𝚛𝚢𝚍𝚊𝚢 .

𝙹𝚞𝚜𝚝 𝚔𝚗𝚘𝚠 𝚢𝚘𝚞'𝚛𝚎 𝚗𝚎𝚟𝚎𝚛 𝚊𝚕𝚘𝚗𝚎 & 𝚢𝚘𝚞'𝚛𝚎 𝚓𝚞𝚜𝚝 𝚊𝚜 𝚒𝚖𝚙𝚘𝚛𝚝𝚊𝚗𝚝 𝚊𝚜 𝚝𝚑𝚎 𝚗𝚎𝚡𝚝 𝚙𝚎𝚛𝚜𝚘𝚗.

𝚈𝚘𝚞 𝚊𝚛𝚎 𝚕𝚘𝚟𝚎𝚍 🩷 & 𝚒𝚏 𝚢𝚘𝚞 𝚏𝚎𝚎𝚕 𝚕𝚒𝚔𝚎 𝚗𝚘𝚋𝚘𝚍𝚢 𝚊𝚙𝚙𝚛𝚎𝚌𝚒𝚊𝚝𝚎𝚜 𝚢𝚘𝚞, 𝚋𝚛𝚞𝚜𝚑 𝚝𝚑𝚎𝚖 𝚘𝚏𝚏 𝚒𝚝'𝚜 𝚗𝚘𝚝 𝚠𝚘𝚛𝚝𝚑 𝚢𝚘𝚞𝚛 𝚝𝚒𝚖𝚎 𝚊𝚗𝚍 𝚜𝚙𝚊𝚌𝚎.

𝙹𝚞𝚜𝚝 𝚏𝚘𝚌𝚞𝚜 𝚘𝚗 𝚢𝚘𝚞𝚛𝚜𝚎𝚕𝚏.

𝚁𝚎𝚖𝚎𝚖𝚋𝚎𝚛 𝚝𝚑𝚒𝚜 𝚕𝚒𝚏𝚎 𝚠𝚒𝚕𝚕 𝚊𝚕𝚠𝚊𝚢𝚜 𝚐𝚎𝚝 𝚠𝚘𝚛𝚜𝚎 𝚋𝚎𝚏𝚘𝚛𝚎 𝚒𝚝 𝚐𝚎𝚝𝚜 𝚋𝚎𝚝𝚝𝚎𝚛.

[calystuf]

── eun bi ( lockscreen ) ✩

like or reblog.

[biniih]

˔　 ᴥ　minnie ɷ (g)-i-dle   ̷　 ꀾ　 

[myalgicencephalomyelitiscfstom]

[iammadelinepod]

While I have been on Tumblr for at least a decade as a nerd girl/nerdfighter I haven't been sharing what's been going on with me in a larger sense. I'm not sure if I'll connect up my personal Tumblr with this(so it won't look like I have followed you back but I probably have), I'll have to have a think about that as my personal Tumblr has been an oasis as I've been fighting to stay alive against ridiculous and seeming unsurmountable odds. I sum it up here in a article I wrote for the disability Alliance of British Columbia last fall

https://disabilityalliancebc.org/article-im-fighting-to-live-but/

Full story in the I am Madeline podcast

https://anchor.fm/i-am-madeline

As I did in the Twitter account in their pinned tweet I will include all of the media articles that have been done so far as well as the Reddit thread that included much kindness and a lot of stuff that made me want to bang my head against a wall. Also some articles about post viral syndrome and me particularly long covid as those are the new additions to the post viral syndrome community. I don't have a lot of energy probably because of my disease but because of the dyslexia textual communication can be quite difficult for me so I'm not going to try to edit the file that I kept the media links and the general medical articles and. So I hope you can make sense of it and that all of the links still work.

I think / hope that I should be able to pin this to the top of this tumblr

In no particular order here is the link dump

Gfm

https://gofund.me/cff39173

https://www.gofundme.com/f/MadelinesMiracle?utm_medium=copy_link&utm_source=customer&utm_campaign=p_lico+share-sheet

Citr ep April 6 2023

https://www.citr.ca/radio/all-access-pass/episode/20230406/

Petition

https://www.meaction.net/2022/03/01/you-can-still-help-madeline/

https://dir.gov.bc.ca/gtds.cgi?show=Branch&organizationCode=HLTH&organizationalUnitCode=MH

Dabc Nov 2022

Blog

https://disabilityalliancebc.org/article-im-fighting-to-live-but/

Pdf mag

https://disabilityalliancebc.org/transitionfallwinter22/

Tyee November 14 2022

https://thetyee.ca/News/2022/11/14/Chronically-Ill-Dying-Poverty/

Chatelaine

https://www.chatelaine.com/health/maid-assisted-death-poverty/

Podcast

https://anchor.fm/i-am-madeline/episodes/Ep--1---How-do-you-solve-a-problem-e110jks

https://anchor.fm/i-am-madeline

(https://www.iammadeline.com/)

City tv news Hana Mae change of by-line

https://vancouver.citynews.ca/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/

Media

News 11:30

https://www.citynews1130.com/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/

https://www.citynews1130.com/2020/11/24/vancouver-woman-me-covid-19/

Tyee article

https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/

Canada land podcast

https://www.canadaland.com/madeline-medical-assistance-in-dying-priced-out-of-life/

https://www.canadaland.com/podcast/723-the-high-cost-of-living/

Update

https://www.canadaland.com/podcast/741-updates-on-pretendians-porn-and-being-priced-out-of-life/

Millions missing simulcast

https://twitter.com/millionspod/status/1450838974864445440?t=tiE3pZtRLB9LiRVXIg4u8g&s=19

My Op-ed

https://quoimedia.com/canadians-with-disabilities-like-me-are-choosing-to-die-because-we-dont-have-the-financial-resources-to-live/

https://ipolitics.ca/2021/11/15/the-disabled-are-choosing-to-die-because-they-cant-afford-to-live/

Reddit post about op-ed

https://www.reddit.com/r/onguardforthee/comments/qul8c3/the_disabled_are_choosing_to_die_because_they/

are live on QUOI Media’s website.

https://quoimedia.com/canadians-with-disabilities-like-me-are-choosing-to-die-because-we-dont-have-the-financial-resources-to-live/

https://quoimedia.com/des-canadiennes-et-canadiens-en-situation-de-handicap-comme-moi-choisissent-de-mourir-parce-quils-nont-pas-les-moyens-de-vivre/

INFO

Gender bias in research

https://pubmed.ncbi.nlm.nih.gov/33232627/

Costs two to three times more to be disabled

https://pubmed.ncbi.nlm.nih.gov/31026771/ https://pubmed.ncbi.nlm.nih.gov/31026771/

Mayo

https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext

Bateman Horne PDF

https://twitter.com/BatemanHorne/status/1462907081686540290?t=MzYkyjZ_-QYAH4_td5zUFA&s=19

NICE COMM

https://www.nice.org.uk/news/article/nice-me-cfs-guideline-outlines-steps-for-better-diagnosis-and-management

Twitter link to various ME studies

https://twitter.com/CPrudhommeAQEM/status/1500854349442002951?t=U-DZG-DLNUqYVkz-Ygoewg&s=19

Pdf of studies

https://www.me-international.org/published-me-icc-studies.html

CDC

https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/etiology-pathophysiology.html

Disprove cbt

https://journals.sagepub.com/doi/full/10.1177/2055102919838907

Blog reply to above

https://blogs.bmj.com/medical-humanities/2021/03/23/the-concept-of-illness-without-disease-impedes-understanding-of-chronic-fatigue-syndrome-a-response-to-sharpe-and-greco/

Physio

https://www.physio-pedia.com/Myalgic_Encephalomyelitis_or_Chronic_Fatigue_Syndrome

Me from covid

https://meassociation.org.uk/2020/05/me-awareness-columbia-university-will-there-be-a-post-covid-19-form-of-me-cfs-26-may-2020/

Australia me study small town

https://www.bmj.com/content/333/7568/575

Percentage of doctors you understand me

https://doctorswith.me/poor-knowledge-of-me-cfs-among-doctors-puts-patients-at-risk-of-harm/

https://doctorswith.me/poor-knowledge-of-me-cfs-among-doctors-puts-patients-at-risk-of-harm/

https://www.hsph.harvard.edu/news/press-releases/epstein-barr-virus-may-be-leading-cause-of-multiple-sclerosis/

https://pubmed.ncbi.nlm.nih.gov/33232627/ gender disparity in research money and allocation by NIH

https://onlinelibrary.wiley.com/doi/full/10.1111/1753-6405.13139

Wiley Online Library

Australian and New Zealand Journal of Public Health

Volume 45, Issue 5 p. 424-426

Commentary

Open Access

Sex and gender gaps in medicine and the androcentric history of medical research

Lea Merone, Komla Tsey, Darren Russell, Cate Nagle

First published: 28 June 2021

Interrelationship between myalgic encephalomyelitis and long covid

https://www.science.org/doi/10.1126/science.abo1261?utm_campaign=SciMag&utm_source=Social&utm_medium=Twitter

Brain fog https://www.theatlantic.com/health/archive/2022/09/long-covid-brain-fog-symptom-executive-function/671393/

https://www.theatlantic.com/health/archive/2022/09/mecfs-chronic-fatigue-syndrome-doctors-long-covid/671518/

Forbes

https://www.forbes.com/sites/roberthart/2021/07/15/long-covid-has-over-200-symptoms-and-leaves-1-in-5-unable-to-work-study-finds/?sh=1f11766e5eb2

herpes simplex including Epstein-Barr latency and damage to genome tissue study sample including autopsies

https://www.frontiersin.org/articles/10.3389/fmolb.2022.1044964/abstract

https://twitter.com/loscharlos/status/1612196453258256384?t=C1UGoqR72JjmBeVRreJ41A&s=09

What #LongCovid continues to experience is a social medical phenomena know as the **Semmelweis Reflex** —

“the metaphor for the reflex-like tendency to reject new evidence or new knowledge because it contradicts established norms, beliefs, or paradigms.” 🧵

I was introduced to this term while reading @meghanor excellent, essential book “Invisible Kingdom”

As she shared, it was named after the doctor who said physicians assisting with childbirth should wash their hands to reduce maternal mortality & was exiled from the profession

https://www.scientificamerican.com/article/a-tsunami-of-disability-is-coming-as-a-result-of-lsquo-long-covid-rsquo/

https://fortune.com/well/2023/05/23/covid-deaths-one-person-every-four-minutes-vaccination-rates/

Protect BC

https://protectbc.ca/public-healt-scandal-failure-to-warn/

[pandemichub]

A wonderful segment on long covid. It mentions the ongoing deaths happening each week, unknown duration of long covid, it has physiological evidence and signs (and is not a psychological condition, though it certainly exacerbates or can cause them to manifest. Long covid is very distressing).

The healthcare and benefits bog people are mired in with this disease, which is extra important. Still watching to see if intersectional healthcare disparities and things like media abuse, gaslighting and biases are brought up. Still a very good piece of journalism.

That there is more than dying of covid to be concerned about and if appropriate attention and resources are given, research, treatment and preventing the spread and more people acquiring long covid, so much is possible/promising.