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madelinenerd.bsky.social
Madelinenerd
@madelinenerd.bsky.social
160 followers 510 following 170 posts
IamMadelinePOD #podcast: https://anchor.fm/i-am-madeline
#myalgicE #disability

Fb/inst/X @madelinenerdfighter
LATEST https://www.thecanary.co/global/world-analysis/2024/12/20/marcia-mecfs-canada/

WORLDWIDE PETITION pls sign https://bit.ly/Marcia_petition
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madelinenerd.bsky.social
Madelinenerd @madelinenerd.bsky.social · Mar 31
It's eating my brain that even though I'm fully public now no #Canadian news source has done a story about the petition bit.ly/Marcia_petit... or what's happening to me attempting to gfm survive month to month without even minimal disease supports for my #longviral EBV #myalgicE here in #Canada
PETITION: Prevent Marcia's Avoidable Death.
International and across Canada signatories welcome and encouraged. What happens in one part of the world affects all parts of our world. Marcia Doherty (known publicly online as Madeline) is a 45-yea...
bit.ly
madelinenerd.bsky.social
#DaoftheDead, #Halloween and #Miracles; new #podcast episode open.spotify.com/show/0oNLwzI...
#Halloween2025 #dayofthedead #whimsy #Halloweencostume #MyalgicEncephalomyelitis #healthcare #canpoli #disability #MyalgicE #pwME #MECFS #fibromyalgia #MEAction #Canada #Vancouver #pumpkin
November 2, 2025 at 10:39 PM
madelinenerd.bsky.social
I talk about #LIFEAFTER @sundancefestive is on @CBC's @IndependentLens Mon Nov 3rd 9:59 pm PST. So check your listings/time zones so you can PVR it.

My Podcast ep re @VIFFest viewing open.spotify.com/episode/0Sd2...
#canpoli #disability #MyalgicE #pwME #fibromyalgia #MEAction #Canada
October 30, 2025 at 5:50 PM
madelinenerd.bsky.social
Podcast episode where I talk about using whimsy as a survival tactic open.spotify.com/episode/7iqA... #halloween #dayofthedead #whimsy #MyalgicEncephalomyelitis #healthcare #canpoli #disability #MyalgicE #pwME #MECFS #fibromyalgia #MEAction #Canada #humanrights #mcas #mcs #disautonomia
October 30, 2025 at 8:30 AM
madelinenerd.bsky.social
Brain fog has me trying to do an update but I can't put my thoughts together. Running out gfm$ in Nov. Try not to freak out about it. Friendsgiving this weekend I hope will raise my spirits cuz I'm scared #myalgicE #longcovid bit.ly/Marcia_petit... petition; worldwide signatures
PETITION: Prevent Marcia's Avoidable Death.
International and across Canada signatories welcome and encouraged. What happens in one part of the world affects all parts of our world. Marcia Doherty (known publicly online as Madeline) is a 45-yea...
bit.ly
October 10, 2025 at 9:02 PM
madelinenerd.bsky.social
SATURDAY, OCTOBER 4TH
6:45pm in Vancouver -- Catch a screening of LIFE AFTER at the Vancouver International Film Festival, followed by a Q&A. Open captions and descriptive audio are available. Also playing Sunday October 5th 11:30am w/ Q&A #lifeafter
October 1, 2025 at 1:59 AM
madelinenerd.bsky.social
Extra hard 7 days after finding out my friend who's been doing my laundry for past 2 years will be stopping in Nov when they retire. Feels like a cold nail in my coffin. Today; again begged MLA staffer for housekeeping & disease supports #myalgicE #bcpoli #disability #longcovid
October 1, 2025 at 1:57 AM
madelinenerd.bsky.social
madelinenerd.bsky.social Madelinenerd @madelinenerd.bsky.social · Sep 25
New #podcast ep: POWER open.spotify.com/episode/1BgM...
Hard day. Found out That help with laundry from a friend will stop soon. Plus stink from ductwork issue extra bad. And larger ideas of not having supports due to problematic forms of power all in pod ep
#myalgicE #disability #MECFS
POWER
open.spotify.com
October 1, 2025 at 1:57 AM
Reposted by Madelinenerd
tomkindlon.bsky.social
From Germany:

Anti-neuronal and anti-mitochondrial autoantibodies are associated with lower functional status and more severe respiratory symptoms in post COVID syndrome

www.frontiersin.org/journals/imm...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC
Anti-neuronal and anti-mitochondrial autoantibodies are associated with lower functional status and more severe respiratory symptoms in post COVID syndrome — Vogelgesang et al. "The present exploratory study showed an association between the auto-Abs and the disease without implying a causal relationship"
October 1, 2025 at 1:08 AM
Reposted by Madelinenerd
tomkindlon.bsky.social
Variant connective tissue as a risk factor for long COVID: a case-control study of data from a retrospective online survey of adults in the USA and UK

bmjpublichealth.bmj.com/content/3/2/...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC
Variant connective tissue as a risk factor for long COVID: a case-control study of data from a retrospective online survey of adults in the USA and UK — Regina A Torok et al. "findings suggest that people with variant connective tissue (manifest as joint hypermobility) disproportionately experience long COVID." "the measure of extreme hypermobility is novel and not yet validated, and both the measure of GJH and the measure of extreme hypermobility rely on patient responses to survey questions"
October 1, 2025 at 1:12 AM
Reposted by Madelinenerd
madelinenerd.bsky.social
New #podcast ep: POWER open.spotify.com/episode/1BgM...
Hard day. Found out That help with laundry from a friend will stop soon. Plus stink from ductwork issue extra bad. And larger ideas of not having supports due to problematic forms of power all in pod ep
#myalgicE #disability #MECFS
POWER
open.spotify.com
September 25, 2025 at 1:47 AM
Reposted by Madelinenerd
bhanlon15.bsky.social
'Characterization of Postural Orthostatic Tachycardia Syndrome in Long COVID: Self-reported Data From the LISTEN Study'

By Akiko Iwasaki, Harlan M. Krumholz et al.

www.sciencedirect.com/science/arti...
Characterization of Postural Orthostatic Tachycardia Syndrome in Long COVID: Self-reported Data From the LISTEN Study
Postural orthostatic tachycardia syndrome (POTS) has emerged as a significant cardiovascular phenotype among individuals experiencing postacute COVID-…
www.sciencedirect.com
September 25, 2025 at 7:20 PM
madelinenerd.bsky.social
New #podcast ep: POWER open.spotify.com/episode/1BgM...
Hard day. Found out That help with laundry from a friend will stop soon. Plus stink from ductwork issue extra bad. And larger ideas of not having supports due to problematic forms of power all in pod ep
#myalgicE #disability #MECFS
POWER
open.spotify.com
September 25, 2025 at 1:47 AM
Reposted by Madelinenerd
renesugar.bsky.social
Marcia Doherty ( @madelinenerd.bsky.social ) noticed her #MECFS symptoms improved while taking Paxlovid but still cannot get antivirals prescribed in BC.

She has access to MAiD (already approved) but not antiviral medications at least one of which she knows works.

bsky.app/profile/made...
madelinenerd.bsky.social Madelinenerd @madelinenerd.bsky.social · Sep 12
New #podcast ep, #Hope Is Tricky Business
open.spotify.com/show/0oNLwzI...
The Atlantic article link expired so here's a new one for you to be able to read (Or listen cuz it has a audio version at the top) www.theatlantic.com/magazine/arc...
#disability #myalgicE #myalgicencephalomyelitis #Canada
Hope Is Tricky Business
open.spotify.com
September 13, 2025 at 2:42 PM
madelinenerd.bsky.social
New #podcast ep, #Hope Is Tricky Business
open.spotify.com/show/0oNLwzI...
The Atlantic article link expired so here's a new one for you to be able to read (Or listen cuz it has a audio version at the top) www.theatlantic.com/magazine/arc...
#disability #myalgicE #myalgicencephalomyelitis #Canada
Hope Is Tricky Business
open.spotify.com
September 12, 2025 at 1:01 AM
madelinenerd.bsky.social
@TheAtlantic article link expired so here's a new one for you to be able to read(Or listen to-has a audio version at the top) & share. Link's in GFM update In case you want to share for you can't post news articles on FB/Insta gofund.me/6d981312 #disability #myalgicE #Canada #mecfs #longcovid
Donate to Marcia aka Madeline Petition I WANT TO LIVE, organized by Marcia Doherty
Who Am i? I definitely will tell you more below as well as some media links… Marcia Doherty needs your support for Marcia aka Madeline Petition I WANT TO LIVE
gofund.me
September 6, 2025 at 10:59 PM
madelinenerd.bsky.social
I'm struggling right now with what feels like disability hate & of course knowing I'm about a month away from running out of $ always does my head in. So it's a bit of a one to punch. I talk about it in this mini podcast ep open.spotify.com/show/0oNLwzI... #myalgicE #Disability #Canada
Disability Hate(And how I'm trying to keep afloat)
open.spotify.com
September 6, 2025 at 10:52 PM
Reposted by Madelinenerd
itsbabs.bsky.social
LongCovid is "not rare...In addition to its health burden...economic estimates show...longCOVID could result in billions...in productivity losses. The FDA should consider policies that adequately embrace this new reality&allay the legitimate concerns of the American people."
doi.org/10.1016/j.va...
Vaccine Volume 63, 17 September 2025, 127676 Commentary COVID-19 vaccinations in America: Don't forget long COVID and the post-acute sequelae by Peter J. Hotez https://doi.org/10.1016/j.vaccine.2025.127676 My concern is the new FDA guidance does not consider COVID’s post-acute sequelae. In 2025, researchers at Penn Medicine and the U.S. National Institutes of Health (NIH) Researching COVID to Enhance Recovery (RECOVER) Initiative (to understand, treat, and prevent the post- acute sequelae of COVID-19) reported their findings on almost 400,000 children and adolescents. They found that the Pfizer mRNA vaccine was greater than 95 % effective against long COVID among adolescents during the delta wave in 2021, and more than more than 60 % effective against long COVID in children and 75 % among adolescents during omicron wave in 2022 [7]. Similarly, a Department of Veterans Affairs Health Care System study of more than 400,000 veterans with COVID-19 and over 4 million non-infected controls found significant reductions in post-acute sequelae events among those vaccinated [8]. Additional studies support the benefits of booster vaccinations to prevent long COVID in the omicron era [9]. For now, the decision to receive an annual COVID-19 for groups not considered to be at the highest risk for death or hospitalization should remain between the patient (or the patient’s caregivers) and their doctor. This practice is consistent with the health freedom tenets of the Make America Healthy Again (MAHA) philosophy and is very much in line with “a balance of regulatory flexibility and a commitment to gold- standard science,” which in fact has always been the philosophy and practices of the FDA and CDC and their advisory committees. Along those lines, the FDA, CDC, and NIH should redouble their commitment to support research into the molecular, cellular, and immunological mechanisms of COVID’s post-acute sequelae, and how vaccines prevent these serious complications. Instead, we are just learning about the cuts to the budget of the National Institute of Allergy and Infectious Diseases (NIAID), and a potential dismantling of government support for infectious disease research in America. The simple reality is that gold-standard science simply cannot be maintained should MAHA dogmas replace scientific research and development.
September 5, 2025 at 10:25 PM
madelinenerd.bsky.social
New Atlantic article link(gift link expired). I'm only a small part in it, But I am hoping it might precipitate some legacy media coverage that really focuses in the illogic & human rights atrocity of what's happening to me
Twitter link that has it x.com/Madelinenerd...
#disability #MyalgicE
Madelinenerdfighter from the @IamMADELINEpod on X: "New Atlantic article link(gift link below expired). This will let you read it. I'm only a small part in it, But I am hoping it might precipitate some legacy media coverage that really focuses in theologic and human rights atrocity of what's happening to me https://t.co/oI0R3lYcf1" / X
New Atlantic article link(gift link below expired). This will let you read it. I'm only a small part in it, But I am hoping it might precipitate some legacy media coverage that really focuses in theologic and human rights atrocity of what's happening to me https://t.co/oI0R3lYcf1
x.com
September 6, 2025 at 1:09 AM
Reposted by Madelinenerd
madelinenerd.bsky.social
Still fighting!

petition really needs to get 2000 signatures before we present➡️ bit.ly/Marcia_petit...
below is the Atlantic article.

This is the @Canaryuk article that came out with the petition www.thecanary.co/global/world... #MyalgicEncephalomyelitis #disability #MyalgicE #Canada
August 30, 2025 at 1:28 AM
madelinenerd.bsky.social
No s*** Sherlock

Le sigh

*Bangs head softly against wall that we are still even having conversations and or studies around the psychosomatizing of what has already clearly been proven to be a biochemical and biomechanical disease*
#myalgicE #myalgicencephalomyelitis
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · Sep 4
Reframing beliefs about their illness does not lead to recovery of tube-fed patients with very severe ME/CFS. Analysis of the BMJ article by Miller et al. by @huisarts-vink.bsky.social

papers.ssrn.com/sol3/papers....

Image from AMMES Sept Newsletter

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis
Reframing beliefs about their illness does not lead to recovery of tube-fed patients with very severe ME/CFS. Analysis of the BMJ article by Miller et al. What has happened over the last 35 years is that severely ill patients have been ridiculed, gaslit and ignored by the medical profession. These patients have lost hope in the part of the medical profession which has been instrumental in doing and promoting that. They have not lost hope to recover and they are all hoping to get effective pharmacological treatments sooner rather than later as changing their mindset does not lead to recovery. And if it does, then the diagnosis of ME/CFS was simply wrong. Read more here>>
September 4, 2025 at 1:00 AM
madelinenerd.bsky.social
Still fighting!

petition really needs to get 2000 signatures before we present➡️ bit.ly/Marcia_petit...
below is the Atlantic article.

This is the @Canaryuk article that came out with the petition www.thecanary.co/global/world... #MyalgicEncephalomyelitis #disability #MyalgicE #Canada
August 30, 2025 at 1:28 AM
Reposted by Madelinenerd
madelinenerd.bsky.social
#theAtlantic article just came out that includes me www.theatlantic.com/magazine/arc... by @elainaplott I'm so grateful that they linked to my podcast. For Atlantic readers open.spotify.com/show/0oNLwzI... #myalgicE #MyalgicEncephalomyelitis #Canada #canpoli #bcpoli #disability #disabilityawareness
Canada Is Killing Itself
The country gave its citizens the right to die. Doctors are struggling to keep up with demand.
www.theatlantic.com
August 21, 2025 at 12:00 AM
madelinenerd.bsky.social
madelinenerd.bsky.social Madelinenerd @madelinenerd.bsky.social · Aug 2
Petition needs to get 2000 signatures. It currently has 1300. we welcome signatures from around the world! bit.ly/Marcia_petit... pls share!

hopefully enough gfm donations will help give me the time I need to see petition presented to BC gov #myalgicE #pwd gofund.me/6d981312
August 22, 2025 at 9:54 PM
Reposted by Madelinenerd
killedbyproxy.bsky.social
"Dr Jayadeva, who co-authored the study, added: 'We found that people with #longCovid are often led to fend for themselves in a system that isn't adequately informed about their condition and doesn't offer them appropriate medical support.'"
Long Covid patients gaslit by GPs, Surrey study finds
The University of Surrey study says patients faced "gatekeeping" of medical treatment from doctors.
www.bbc.com
August 22, 2025 at 12:28 PM
Reposted by Madelinenerd
elhopkins.bsky.social
into school or work you are at increased risk again of #Longcovid by not resting. Somehow this research is just not filtering through or being ignored by our government.
Here it is for those who would like to take a look. www.thelancet.com/journals/lan...
Long COVID: a clinical update
Post-COVID-19 condition (also known as long COVID) is generally defined as symptoms persisting for 3 months or more after acute COVID-19. Long COVID can affect multiple organ systems and lead to sever...
www.thelancet.com
August 22, 2025 at 5:55 PM