Alyssa Erin
@alyssaaerinn.bsky.social
chronically ill/disabled writer, poet, idea-haver, former Physio | LongCovid, ME et al 😷 ADHD
divest, dismantle, do better, land back
Treaty 7 | she/her
Pfp:white♀️blonde hair gaze down @ teacup. "Keep Masks in Healthcare" Cvr: snow-covered, Rocky mtn lake
divest, dismantle, do better, land back
Treaty 7 | she/her
Pfp:white♀️blonde hair gaze down @ teacup. "Keep Masks in Healthcare" Cvr: snow-covered, Rocky mtn lake
Reposted by Alyssa Erin
How to support Crips for eSIMs for Gaza, which is STILL sending eSIMs and has seen a big increase in requests due to the criminal situation in the north:
🔗 bit.ly/eSimsRUs
USD : bit.ly/venmo4esims
GBP : www.paypal.com/donate/?host...
cc: @pipagaopoetry.bsky.social @sfdirewolf.bsky.social
🔗 bit.ly/eSimsRUs
USD : bit.ly/venmo4esims
GBP : www.paypal.com/donate/?host...
cc: @pipagaopoetry.bsky.social @sfdirewolf.bsky.social
BREAKING: Internet services have been cut off across large parts of Gaza City and northern Gaza due to ongoing Israeli airstrikes, QNN correspondent reports.
September 17, 2025 at 8:25 AM
How to support Crips for eSIMs for Gaza, which is STILL sending eSIMs and has seen a big increase in requests due to the criminal situation in the north:
🔗 bit.ly/eSimsRUs
USD : bit.ly/venmo4esims
GBP : www.paypal.com/donate/?host...
cc: @pipagaopoetry.bsky.social @sfdirewolf.bsky.social
🔗 bit.ly/eSimsRUs
USD : bit.ly/venmo4esims
GBP : www.paypal.com/donate/?host...
cc: @pipagaopoetry.bsky.social @sfdirewolf.bsky.social
Reposted by Alyssa Erin
one of my contacts in G has been profusely thanking me for our diligent support because we've been keeping their eSim active since last summer. we are almost at 3 million CAD!
anyway this is what i've been thinking about rather than charlie kirk.
bit.ly/eSimsRUs
anyway this is what i've been thinking about rather than charlie kirk.
bit.ly/eSimsRUs
Crips for eSims for Gaza
Crips for eSims for Gaza is a collaboration between Jane Shi, Leah Lakshmi Piepzna-Samarasinha, and Alice Wong.
bit.ly
September 12, 2025 at 12:46 AM
one of my contacts in G has been profusely thanking me for our diligent support because we've been keeping their eSim active since last summer. we are almost at 3 million CAD!
anyway this is what i've been thinking about rather than charlie kirk.
bit.ly/eSimsRUs
anyway this is what i've been thinking about rather than charlie kirk.
bit.ly/eSimsRUs
Reposted by Alyssa Erin
The collab recommends exercise for people with #LongCOVID without PEM.
However, this presumes the average physician knows what PEM is and can explain to a patient how it differs from fatigue. (Unlikely.)
PEM & pacing, for the curious: www.meaction.net/resource/pac...
However, this presumes the average physician knows what PEM is and can explain to a patient how it differs from fatigue. (Unlikely.)
PEM & pacing, for the curious: www.meaction.net/resource/pac...
Pacing and Management Guides
Find #MEAction's original Pacing Guide and Pediatric Pacing and Management Guide for ME/CFS and Long COVID, with translations.
www.meaction.net
July 11, 2025 at 5:39 PM
The collab recommends exercise for people with #LongCOVID without PEM.
However, this presumes the average physician knows what PEM is and can explain to a patient how it differs from fatigue. (Unlikely.)
PEM & pacing, for the curious: www.meaction.net/resource/pac...
However, this presumes the average physician knows what PEM is and can explain to a patient how it differs from fatigue. (Unlikely.)
PEM & pacing, for the curious: www.meaction.net/resource/pac...
Reposted by Alyssa Erin
I gave feedback on the McMaster/Cochrane Canada #LongCOVID guidelines (Canadian Guidelines for Post-COVID Condition (CAN-PCC)) and therefore thought this news was more of the same.
Well, there's a bit more and also I have Thoughts about consensus & credentialism 🧪
thesicktimes.org/2025/07/08/e...
Well, there's a bit more and also I have Thoughts about consensus & credentialism 🧪
thesicktimes.org/2025/07/08/e...
Experts call new Canadian Long COVID guidelines “contradictory” and “deeply concerning” - The Sick Times
Guidelines recommend exercise and therapy as treatments, following attempted influence from Paul Garner.
thesicktimes.org
July 11, 2025 at 5:39 PM
I gave feedback on the McMaster/Cochrane Canada #LongCOVID guidelines (Canadian Guidelines for Post-COVID Condition (CAN-PCC)) and therefore thought this news was more of the same.
Well, there's a bit more and also I have Thoughts about consensus & credentialism 🧪
thesicktimes.org/2025/07/08/e...
Well, there's a bit more and also I have Thoughts about consensus & credentialism 🧪
thesicktimes.org/2025/07/08/e...
Reposted by Alyssa Erin
The UN defines solitary confinement as torture when it exceeds 22 hours a day for more than 15 days.
Many people with severe ME are years or even decades into that level of isolation.
It’s a humanitarian crisis.
Many people with severe ME are years or even decades into that level of isolation.
It’s a humanitarian crisis.
July 17, 2025 at 7:48 PM
The UN defines solitary confinement as torture when it exceeds 22 hours a day for more than 15 days.
Many people with severe ME are years or even decades into that level of isolation.
It’s a humanitarian crisis.
Many people with severe ME are years or even decades into that level of isolation.
It’s a humanitarian crisis.
Reposted by Alyssa Erin
Think long COVID can't affect you or your family?
It affected Jonathon Toews, an elite hockey player.
This is why I continue to try and protect myself against infection
www.youtube.com/watch?v=KGRi...
It affected Jonathon Toews, an elite hockey player.
This is why I continue to try and protect myself against infection
www.youtube.com/watch?v=KGRi...
Jonathan Toews set for NHL comeback with Jets after long COVID
YouTube video by CBC News: The National
www.youtube.com
July 5, 2025 at 3:16 AM
Think long COVID can't affect you or your family?
It affected Jonathon Toews, an elite hockey player.
This is why I continue to try and protect myself against infection
www.youtube.com/watch?v=KGRi...
It affected Jonathon Toews, an elite hockey player.
This is why I continue to try and protect myself against infection
www.youtube.com/watch?v=KGRi...
Reposted by Alyssa Erin
I’ve lost so many people to #SevereME and #VerySevereME
Will remember you, Bridget 💙🕯️
Please read this last piece from Bridget about how governments have failed MECFS and Long Covid patients
Please take the fury we feel into your heart and use it to help us 2/2 open.substack.com/pub/bridgeto...
Will remember you, Bridget 💙🕯️
Please read this last piece from Bridget about how governments have failed MECFS and Long Covid patients
Please take the fury we feel into your heart and use it to help us 2/2 open.substack.com/pub/bridgeto...
Buried Alive by Government “Experts”
The Betrayal of the Worldwide Health Institutes’ Passivity in Erasing a Deadly Plight
open.substack.com
July 20, 2025 at 10:17 AM
I’ve lost so many people to #SevereME and #VerySevereME
Will remember you, Bridget 💙🕯️
Please read this last piece from Bridget about how governments have failed MECFS and Long Covid patients
Please take the fury we feel into your heart and use it to help us 2/2 open.substack.com/pub/bridgeto...
Will remember you, Bridget 💙🕯️
Please read this last piece from Bridget about how governments have failed MECFS and Long Covid patients
Please take the fury we feel into your heart and use it to help us 2/2 open.substack.com/pub/bridgeto...
Reposted by Alyssa Erin
Very sad to report that longtime mutual journalist and author Bridget O’Shea of ME/CFS Evolving Awareness on Substack and a longtime Twitter mutual passed away July 16 after a heart attack following a years-long struggle suffering from #MECFS
www.dignitymemorial.com/obituaries/c... 1/2
www.dignitymemorial.com/obituaries/c... 1/2
Bridget O'Shea Obituary - Chicago, IL
Celebrate the life of Bridget O'Shea, leave a kind word or memory and get funeral service information care of Drake & Son Funeral Home.
www.dignitymemorial.com
July 20, 2025 at 10:17 AM
Very sad to report that longtime mutual journalist and author Bridget O’Shea of ME/CFS Evolving Awareness on Substack and a longtime Twitter mutual passed away July 16 after a heart attack following a years-long struggle suffering from #MECFS
www.dignitymemorial.com/obituaries/c... 1/2
www.dignitymemorial.com/obituaries/c... 1/2
Reposted by Alyssa Erin
Special episode dropping soon: “But my therapist said”— 3 mental health professionals chat about the importance of being informed about COVID as a practitioner & how “COVID anxiety” is a tool used to dismiss legitimate concerns about a damaging virus
www.publichealthisdead.com/episodes/spe...
www.publichealthisdead.com/episodes/spe...
SPECIAL: “But my therapist said…” COVID-Informed Therapists Chat — Public Health is Dead
Three mental health professionals speak on collective care and the importance of being informed about COVID as a practitioner.
www.publichealthisdead.com
June 27, 2025 at 3:07 AM
Special episode dropping soon: “But my therapist said”— 3 mental health professionals chat about the importance of being informed about COVID as a practitioner & how “COVID anxiety” is a tool used to dismiss legitimate concerns about a damaging virus
www.publichealthisdead.com/episodes/spe...
www.publichealthisdead.com/episodes/spe...
cookie art to feed your queer dreaming & resistance 🌈✊🏼❣️
Sam Nordquist Tahiry Broom Sumaya Dalmar Chevranna Abdi Marsha P. Johnson
Sam Nordquist Tahiry Broom Sumaya Dalmar Chevranna Abdi Marsha P. Johnson
June 26, 2025 at 6:31 PM
cookie art to feed your queer dreaming & resistance 🌈✊🏼❣️
Sam Nordquist Tahiry Broom Sumaya Dalmar Chevranna Abdi Marsha P. Johnson
Sam Nordquist Tahiry Broom Sumaya Dalmar Chevranna Abdi Marsha P. Johnson
Illustrated illness experiences for Myalgic Encephalomyelitis (ME) Awareness Day, May 12th
#MillionsMissing #MECFSAwarenessDay #pwME #MyalgicE #MyalgicEncephalomyelitis #LongCovid #ChronicIllness #Disability
#MillionsMissing #MECFSAwarenessDay #pwME #MyalgicE #MyalgicEncephalomyelitis #LongCovid #ChronicIllness #Disability
May 12, 2025 at 5:23 PM
Illustrated illness experiences for Myalgic Encephalomyelitis (ME) Awareness Day, May 12th
#MillionsMissing #MECFSAwarenessDay #pwME #MyalgicE #MyalgicEncephalomyelitis #LongCovid #ChronicIllness #Disability
#MillionsMissing #MECFSAwarenessDay #pwME #MyalgicE #MyalgicEncephalomyelitis #LongCovid #ChronicIllness #Disability
"We do things because they're right not because they're easy" - PM Mark Carney He also said he'll make mistakes and commits to admitting & correcting them.
Demand he keep his word! Canada must cease support of genocide, incl forced famine. Don't let up the pressure!
#FreePalestine #CdnPoli
Demand he keep his word! Canada must cease support of genocide, incl forced famine. Don't let up the pressure!
#FreePalestine #CdnPoli
May 6, 2025 at 4:22 PM
"We do things because they're right not because they're easy" - PM Mark Carney He also said he'll make mistakes and commits to admitting & correcting them.
Demand he keep his word! Canada must cease support of genocide, incl forced famine. Don't let up the pressure!
#FreePalestine #CdnPoli
Demand he keep his word! Canada must cease support of genocide, incl forced famine. Don't let up the pressure!
#FreePalestine #CdnPoli
Reposted by Alyssa Erin
PLRC member Beth Stelson spoke with @hsph.harvard.edu about her work and the HHS LC Office's closure:
“#LongCovid is very much a real public health concern today, as it was at the very beginning. It affects hundreds of millions of people around the world.” hsph.harvard.edu/news/a-long-...
“#LongCovid is very much a real public health concern today, as it was at the very beginning. It affects hundreds of millions of people around the world.” hsph.harvard.edu/news/a-long-...
A long COVID researcher continues to search for answers | Harvard T.H. Chan School of Public Health
Postdoctoral research fellow Beth Stelson, a long COVID researcher, and herself a patient, discusses her research and the ramifications of the closure of a federal office focused on long COVID researc...
hsph.harvard.edu
May 5, 2025 at 10:13 PM
PLRC member Beth Stelson spoke with @hsph.harvard.edu about her work and the HHS LC Office's closure:
“#LongCovid is very much a real public health concern today, as it was at the very beginning. It affects hundreds of millions of people around the world.” hsph.harvard.edu/news/a-long-...
“#LongCovid is very much a real public health concern today, as it was at the very beginning. It affects hundreds of millions of people around the world.” hsph.harvard.edu/news/a-long-...
Reposted by Alyssa Erin
The U.S. government encouraged people to report on doctors in Canada who provide gender-affirming care to children—signalling a chilling new cross-border reach in its anti-trans agenda
breachmedia.ca/trump-admin-...
breachmedia.ca/trump-admin-...
Trump admin anti-trans snitch site targeted Canadian doctors ⋆ The Breach
Canadian jurisdictions were included on a U.S. ‘whistleblower’ form targetting trans care providers—and then were quietly removed after media enquiries
breachmedia.ca
May 5, 2025 at 3:50 PM
The U.S. government encouraged people to report on doctors in Canada who provide gender-affirming care to children—signalling a chilling new cross-border reach in its anti-trans agenda
breachmedia.ca/trump-admin-...
breachmedia.ca/trump-admin-...
Reposted by Alyssa Erin
We’re calling it: a white male will be the next Prime Minister of Canada
BREAKING: Polls have yet to officially open but Walking Eagle News is projecting that a white male will be the next Prime Minister of Canada
April 29, 2025 at 2:16 AM
We’re calling it: a white male will be the next Prime Minister of Canada
Reposted by Alyssa Erin
Terrific #MEspine article in @thesicktimes.bsky.social !
Craniocervical instability is such a complex topic (literally: neurosurgery!), and I’m so grateful to the whole TST team for their work to give such a nuanced account.
Craniocervical instability is such a complex topic (literally: neurosurgery!), and I’m so grateful to the whole TST team for their work to give such a nuanced account.
This surgery fuses people’s skulls to their spines to treat a condition overlapping with myalgic encephalomyelitis - The Sick Times
A growing number of doctors agree that a minority of people with severe ME are like Brea: Some of their symptoms are caused by cranio-cervical instability linked to connective tissue disorders. Viruse...
thesicktimes.org
April 23, 2025 at 6:24 PM
Terrific #MEspine article in @thesicktimes.bsky.social !
Craniocervical instability is such a complex topic (literally: neurosurgery!), and I’m so grateful to the whole TST team for their work to give such a nuanced account.
Craniocervical instability is such a complex topic (literally: neurosurgery!), and I’m so grateful to the whole TST team for their work to give such a nuanced account.
"I am 36. I am 12. I am one entire bruise."
-from the novel Pomegranate by Helen Elaine Lee
Such powerful prose in this book from start to finish!
#BookSky 💙📚
-from the novel Pomegranate by Helen Elaine Lee
Such powerful prose in this book from start to finish!
#BookSky 💙📚
April 23, 2025 at 9:29 PM
"I am 36. I am 12. I am one entire bruise."
-from the novel Pomegranate by Helen Elaine Lee
Such powerful prose in this book from start to finish!
#BookSky 💙📚
-from the novel Pomegranate by Helen Elaine Lee
Such powerful prose in this book from start to finish!
#BookSky 💙📚
Reposted by Alyssa Erin
#HigherEd #AcademicSky: with news of proposed registries and work camps for ADHD and autistic folks, are we ready to release the accommodations model of disability? Like for real? Not a rhetorical question!
April 23, 2025 at 3:55 PM
#HigherEd #AcademicSky: with news of proposed registries and work camps for ADHD and autistic folks, are we ready to release the accommodations model of disability? Like for real? Not a rhetorical question!
Reposted by Alyssa Erin
Now if only we as a society could move from the “study it even further” phase to the “actually implementing UBI” phase instead of commissioning yet more studies to add to the massive trove of data we already have that shows UBI is a critical component of a truly healthy and equitable society
"Recipients, especially women, reported feeling a greater sense of autonomy in their lives. Despite working the same hours as before, they felt there was more time in the day for activities like sleeping, volunteering, and spending time with their loved ones." #UBI (same findings as usual: it works)
A German experiment gave people a basic monthly income. The effect on their work ethic was surprising
(Or not surprising at this point. The people with UBI didn't quit working. They felt healthier and happier. The women, in particular, felt greater autonomy. UBI works.)
www.cnn.com/2025/04/11/h...
(Or not surprising at this point. The people with UBI didn't quit working. They felt healthier and happier. The women, in particular, felt greater autonomy. UBI works.)
www.cnn.com/2025/04/11/h...
April 22, 2025 at 11:53 PM
Now if only we as a society could move from the “study it even further” phase to the “actually implementing UBI” phase instead of commissioning yet more studies to add to the massive trove of data we already have that shows UBI is a critical component of a truly healthy and equitable society
Reposted by Alyssa Erin
And now that paperwork will be inherently used to target and harm disabled students. We should have moved beyond the legal accommodation compliance process years ago. Now it is more important than ever to do so. 3/3 #Academia #Disability
April 22, 2025 at 10:53 PM
And now that paperwork will be inherently used to target and harm disabled students. We should have moved beyond the legal accommodation compliance process years ago. Now it is more important than ever to do so. 3/3 #Academia #Disability
Reposted by Alyssa Erin
When I talk about the importance of granting students accommodations WITHOUT relying on formal paperwork this is why it matters. It is DANGEROUS for some people to have diagnoses on their medical records. 1/3
We're learning more about NIH's plans for Secy Kennedy's new autism studies
NIH Director Bhattacharya says they're amassing a swath of confidential medical data to link together for first time, ranging from broader access to CMS records to smartwatch data
www.cbsnews.com/news/rfk-jr-...
NIH Director Bhattacharya says they're amassing a swath of confidential medical data to link together for first time, ranging from broader access to CMS records to smartwatch data
www.cbsnews.com/news/rfk-jr-...
RFK Jr.'s autism study to amass medical records of many Americans
The autism study is planning to link confidential data "with broad coverage in the U.S. population" in one place for the first time.
www.cbsnews.com
April 22, 2025 at 10:53 PM
When I talk about the importance of granting students accommodations WITHOUT relying on formal paperwork this is why it matters. It is DANGEROUS for some people to have diagnoses on their medical records. 1/3
"Jesus is the Palestinian who is killed again and again, but who rises up again and again...Jesus was not a silent receiver of oppression and injustice. He was a liberator." - @letstalkpalestine.bsky.social
#Easter
www.instagram.com/p/DIocNdgtQM...
#Easter
www.instagram.com/p/DIocNdgtQM...
April 20, 2025 at 9:17 PM
"Jesus is the Palestinian who is killed again and again, but who rises up again and again...Jesus was not a silent receiver of oppression and injustice. He was a liberator." - @letstalkpalestine.bsky.social
#Easter
www.instagram.com/p/DIocNdgtQM...
#Easter
www.instagram.com/p/DIocNdgtQM...
Reposted by Alyssa Erin
"A society seeing itself as democratic needs to talk about COVID-19 because not doing so risks harming the levels of democracy already under attack by fascist and neo-liberal influences."
By: @teachrprecarity.bsky.social
By: @teachrprecarity.bsky.social
When we stop talking about COVID-19, policymakers can stop caring
Calling COVID-19 “over” is factually incorrect and a form of gaslighting when about 15 per cent of infections lead to long COVID.
www.therecord.com
April 19, 2025 at 12:43 PM
"A society seeing itself as democratic needs to talk about COVID-19 because not doing so risks harming the levels of democracy already under attack by fascist and neo-liberal influences."
By: @teachrprecarity.bsky.social
By: @teachrprecarity.bsky.social
Reposted by Alyssa Erin
The final four paintings of the passion series by late deaf Korean artist Kim Ki-Chang, reimagining Jesus in the Joseon era. Painted in 1953 while Kim was grieving the Korean War.
Shown: the eclipse over the cross, the carrying of his body, the emptied tomb, & ascending home.
#Easter #resurrection
Shown: the eclipse over the cross, the carrying of his body, the emptied tomb, & ascending home.
#Easter #resurrection
April 19, 2025 at 1:30 PM
The final four paintings of the passion series by late deaf Korean artist Kim Ki-Chang, reimagining Jesus in the Joseon era. Painted in 1953 while Kim was grieving the Korean War.
Shown: the eclipse over the cross, the carrying of his body, the emptied tomb, & ascending home.
#Easter #resurrection
Shown: the eclipse over the cross, the carrying of his body, the emptied tomb, & ascending home.
#Easter #resurrection