Nandini
@nandini0306.bsky.social
🇨🇦🍁Mother. Healthcare Professional. Advocate for Children living with Long Covid.
Founder, Children's Long Covid Network (CLCN)
Parent Advocate
Outspoken views on Children's Long Covid/Post Covid Condition research, care, and treatment.
Founder, Children's Long Covid Network (CLCN)
Parent Advocate
Outspoken views on Children's Long Covid/Post Covid Condition research, care, and treatment.
🚩This was recently shared with us by a parent and it's deeply disturbing. It appears that this hospital has a troubling pattern in its approach to children living with complex illnesses. Also reportedly being separated from parents for extended questioning- serious ethical & safeguarding concerns.
November 10, 2025 at 2:32 AM
🚩This was recently shared with us by a parent and it's deeply disturbing. It appears that this hospital has a troubling pattern in its approach to children living with complex illnesses. Also reportedly being separated from parents for extended questioning- serious ethical & safeguarding concerns.
To my fellow Canadian parents with children living with Long COVID: the Children's Long COVID Network submitted a complaint to the CBC Ombudsman. Please consider sending your own personal letters to CBC to amplify our collective voice.
November 8, 2025 at 5:00 PM
To my fellow Canadian parents with children living with Long COVID: the Children's Long COVID Network submitted a complaint to the CBC Ombudsman. Please consider sending your own personal letters to CBC to amplify our collective voice.
@cbcnews.ca @cbcnews-mirror.bsky.social Canadians living w Long COVID, especially children, deserve responsible journalism, not "braining training" pseudoscience on National TV. Whoever endorsed this should be ashamed. Appalling, @ianhanomansing.bsky.social. Complaint escalated to the CBC Ombudsman
@gilldeacon.bsky.social Respecting your courage in speaking on your Long COVID journey, but promoting a "recovery" narrative based on psychological and mind-body interventions in your CBC interview of Oct 26th gravely misrepresented Long COVID in public discourse.
Thoroughly disappointed in this LC media coverage that aired Oct 26, 2025 on CBC Canada completely misrepresents this life altering illness…extremely harmful.
Need community advocates to share far and wide & also reach out to CBC. 1/2
#LCisreal
#MEcfs
#pwME
m.youtube.com/watch?v=DXri...
Need community advocates to share far and wide & also reach out to CBC. 1/2
#LCisreal
#MEcfs
#pwME
m.youtube.com/watch?v=DXri...
November 8, 2025 at 4:57 PM
@cbcnews.ca @cbcnews-mirror.bsky.social Canadians living w Long COVID, especially children, deserve responsible journalism, not "braining training" pseudoscience on National TV. Whoever endorsed this should be ashamed. Appalling, @ianhanomansing.bsky.social. Complaint escalated to the CBC Ombudsman
Strong & credible study. Issue is when national outlets like @ctvnews-mirror.bsky.social keep turning to @isaacbogoch.bsky.social as the "default expert" even outside his field. This catch-all authority flattens complex science and sidelines those with real expertise.
www.ctvnews.ca/health/artic...
www.ctvnews.ca/health/artic...
Study compares heart risks of COVID-19 infection and vaccination, and the results may surprise you
The risk of children developing rare but serious heart complications is higher after a COVID-19 infection than after vaccination, according to a new study.
www.ctvnews.ca
November 8, 2025 at 3:38 PM
Strong & credible study. Issue is when national outlets like @ctvnews-mirror.bsky.social keep turning to @isaacbogoch.bsky.social as the "default expert" even outside his field. This catch-all authority flattens complex science and sidelines those with real expertise.
www.ctvnews.ca/health/artic...
www.ctvnews.ca/health/artic...
@spichaksimon.bsky.social thank you for holding @ianhanomansing.bsky.social CBC accountable on this. They have a lot to answer on this.
It's deeply disappointing when a National broadcaster watched by millions undermines its own credibility.
It's deeply disappointing when a National broadcaster watched by millions undermines its own credibility.
In a statement, CBC told me:
"After reviewing the interview, we concluded that it needed to be re-edited and re-posted to include further context and questions around the procedure and treatment Deacon experienced. That has now been done."
Will update the story with this soon.
"After reviewing the interview, we concluded that it needed to be re-edited and re-posted to include further context and questions around the procedure and treatment Deacon experienced. That has now been done."
Will update the story with this soon.
Earlier this week, the CBC broadcast an interview with Gill Deacon, discussing her Long COVID recovery using brain retraining.
They didn't tell you the specific brain retraining program, the Lightning Process, has been accused of exploiting patients.
simonspichak.beehiiv.com/p/cbc-flagsh...
1/n
They didn't tell you the specific brain retraining program, the Lightning Process, has been accused of exploiting patients.
simonspichak.beehiiv.com/p/cbc-flagsh...
1/n
November 8, 2025 at 12:44 AM
@spichaksimon.bsky.social thank you for holding @ianhanomansing.bsky.social CBC accountable on this. They have a lot to answer on this.
It's deeply disappointing when a National broadcaster watched by millions undermines its own credibility.
It's deeply disappointing when a National broadcaster watched by millions undermines its own credibility.
@carriemcginn.bsky.social @sabrinapoirier.bsky.social @icancmeresearch.bsky.social
On Jan 15th, 2026.
ow.ly/Fnhy50XiObM
On Jan 15th, 2026.
ow.ly/Fnhy50XiObM
Welcome! You are invited to join a webinar: From Mystery to Measurable: The Science Behind the New ME/CFS Blood Test. After registering, you will receive a confirmation email about joining the webinar...
Scientists have developed a simple, accurate blood test that can potentially identify Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) — a long-term, debilitating condition that affects m...
ow.ly
November 7, 2025 at 6:57 AM
Powerful piece by a pediatrician reminding us of a truth often neglected by Canadian school systems: accommodations aren't privileges-they are rights. Equity means meeting children where they are- but for those with complex illnesses like Long COVID, it often isn't.
kevinmd.com/2025/08/why-...
kevinmd.com/2025/08/why-...
Why accommodations aren't special treatment but essential for equity
Disabled students and professionals continue to face systemic discrimination and exclusion, especially in education and medicine, where outdated attitudes and resistance to accommodations hinder equit...
kevinmd.com
November 7, 2025 at 5:41 AM
Powerful piece by a pediatrician reminding us of a truth often neglected by Canadian school systems: accommodations aren't privileges-they are rights. Equity means meeting children where they are- but for those with complex illnesses like Long COVID, it often isn't.
kevinmd.com/2025/08/why-...
kevinmd.com/2025/08/why-...
Day3 reflection: "Keeping up with Long COVID and ME/CFS patients means keeping up with the emerging science of Complex Chronic illnesses"- adopting new ways of continuous monitoring, testing. Thank you @icancmeresearch.bsky.social for hosting a groundbreaking conference every clinician should hear.
November 7, 2025 at 2:40 AM
Day3 reflection: "Keeping up with Long COVID and ME/CFS patients means keeping up with the emerging science of Complex Chronic illnesses"- adopting new ways of continuous monitoring, testing. Thank you @icancmeresearch.bsky.social for hosting a groundbreaking conference every clinician should hear.
Day 2 reflections: "Who is driving and who is the passenger"- Symptoms don't exist in isolation; they collide, overlap, and amplify each other. For those living with ME/CFS, LC, managing life is about navigating the unpredictable system when the "driver" role constantly shifts
This is not just a conference. It's a meeting of scientific minds who are genuinely bridging the gap between lived experience & scientific inquiry.
Thank you @icancmeresearch.bsky.social for hosting such an incredible virtual conference. @chiefscican.bsky.social @thewhn.bsky.social
Thank you @icancmeresearch.bsky.social for hosting such an incredible virtual conference. @chiefscican.bsky.social @thewhn.bsky.social
1) The Canadian ME/CFS research network ICanCME is organizing a free and online conference from 4 to 6 November.
The main presentations take place at:
1 pm - 5 pm Eastern Time
6 pm - 10 pm London Time
7 pm - 11 pm Brussels Time
#ICanCME2025
The main presentations take place at:
1 pm - 5 pm Eastern Time
6 pm - 10 pm London Time
7 pm - 11 pm Brussels Time
#ICanCME2025
November 6, 2025 at 6:02 AM
Day 2 reflections: "Who is driving and who is the passenger"- Symptoms don't exist in isolation; they collide, overlap, and amplify each other. For those living with ME/CFS, LC, managing life is about navigating the unpredictable system when the "driver" role constantly shifts
1/A new report on children and youth. The alarming part is not in the absolute numbers - its the pattern!
Persistent vascular & inflammatory injury in a pediatric population following a virus that many still claim is mild in kids. 📢Major public health red flag
www.thelancet.com/journals/lan...
Persistent vascular & inflammatory injury in a pediatric population following a virus that many still claim is mild in kids. 📢Major public health red flag
www.thelancet.com/journals/lan...
Vascular and inflammatory diseases after COVID-19 infection and vaccination in children and young people in England: a retrospective, population-based cohort study using linked electronic health recor...
Children and young people have higher risks of rare vascular and inflammatory diseases
up to 12 months after a first COVID-19 diagnosis and higher risk of rare myocarditis
or pericarditis up to 4 week...
www.thelancet.com
November 5, 2025 at 4:46 AM
1/A new report on children and youth. The alarming part is not in the absolute numbers - its the pattern!
Persistent vascular & inflammatory injury in a pediatric population following a virus that many still claim is mild in kids. 📢Major public health red flag
www.thelancet.com/journals/lan...
Persistent vascular & inflammatory injury in a pediatric population following a virus that many still claim is mild in kids. 📢Major public health red flag
www.thelancet.com/journals/lan...
This is not just a conference. It's a meeting of scientific minds who are genuinely bridging the gap between lived experience & scientific inquiry.
Thank you @icancmeresearch.bsky.social for hosting such an incredible virtual conference. @chiefscican.bsky.social @thewhn.bsky.social
Thank you @icancmeresearch.bsky.social for hosting such an incredible virtual conference. @chiefscican.bsky.social @thewhn.bsky.social
1) The Canadian ME/CFS research network ICanCME is organizing a free and online conference from 4 to 6 November.
The main presentations take place at:
1 pm - 5 pm Eastern Time
6 pm - 10 pm London Time
7 pm - 11 pm Brussels Time
#ICanCME2025
The main presentations take place at:
1 pm - 5 pm Eastern Time
6 pm - 10 pm London Time
7 pm - 11 pm Brussels Time
#ICanCME2025
November 5, 2025 at 1:57 AM
This is not just a conference. It's a meeting of scientific minds who are genuinely bridging the gap between lived experience & scientific inquiry.
Thank you @icancmeresearch.bsky.social for hosting such an incredible virtual conference. @chiefscican.bsky.social @thewhn.bsky.social
Thank you @icancmeresearch.bsky.social for hosting such an incredible virtual conference. @chiefscican.bsky.social @thewhn.bsky.social
Phenomenal Canadian scientific conference on the emerging research on Long COVID & ME/CFS.
1) The Canadian ME/CFS research network ICanCME is organizing a free and online conference from 4 to 6 November.
The main presentations take place at:
1 pm - 5 pm Eastern Time
6 pm - 10 pm London Time
7 pm - 11 pm Brussels Time
#ICanCME2025
The main presentations take place at:
1 pm - 5 pm Eastern Time
6 pm - 10 pm London Time
7 pm - 11 pm Brussels Time
#ICanCME2025
November 4, 2025 at 8:57 PM
Phenomenal Canadian scientific conference on the emerging research on Long COVID & ME/CFS.
1. @ianhanomansing.bsky.social platformed the Lightening Process as Long COVID "recovery" on National Television -No evidence, No biomedical context, & Huge policy risks.
Long COVID is biological. Children deserves science, not illusion.
Long COVID is biological. Children deserves science, not illusion.
CBC’s Flagship Program Platforms “Quackery” for Long COVID
CBC's national broadcast aired an interview with Gill Deacon about her Long COVID recovery. Deacon used an unproven program called the Lightning Process that's been criticized for exploiting patients ...
simonspichak.beehiiv.com
October 31, 2025 at 11:01 PM
1. @ianhanomansing.bsky.social platformed the Lightening Process as Long COVID "recovery" on National Television -No evidence, No biomedical context, & Huge policy risks.
Long COVID is biological. Children deserves science, not illusion.
Long COVID is biological. Children deserves science, not illusion.
Recent data showing that re-infections increase the risk of Long COVID and serious complications in children.
🚩Profound fatigue, PEM, and cognitive challenges
www.medscape.com/viewarticle/...
🚩Profound fatigue, PEM, and cognitive challenges
www.medscape.com/viewarticle/...
Long COVID in Kids: What Pediatricians Need to Know
New research suggests that children and teens who get COVID a second time face twice the risk for developing long COVID.
www.medscape.com
October 30, 2025 at 4:38 PM
Recent data showing that re-infections increase the risk of Long COVID and serious complications in children.
🚩Profound fatigue, PEM, and cognitive challenges
www.medscape.com/viewarticle/...
🚩Profound fatigue, PEM, and cognitive challenges
www.medscape.com/viewarticle/...
@gilldeacon.bsky.social Framing Long COVID as psychological is propaganda! It misleads the public and harms patients- especially children (our future generation) still suffering without biomedical care. Please stop spreading this dangerous misinformation! Who is promoting you to spread this?
@gilldeacon.bsky.social Respecting your courage in speaking on your Long COVID journey, but promoting a "recovery" narrative based on psychological and mind-body interventions in your CBC interview of Oct 26th gravely misrepresented Long COVID in public discourse.
Thoroughly disappointed in this LC media coverage that aired Oct 26, 2025 on CBC Canada completely misrepresents this life altering illness…extremely harmful.
Need community advocates to share far and wide & also reach out to CBC. 1/2
#LCisreal
#MEcfs
#pwME
m.youtube.com/watch?v=DXri...
Need community advocates to share far and wide & also reach out to CBC. 1/2
#LCisreal
#MEcfs
#pwME
m.youtube.com/watch?v=DXri...
October 29, 2025 at 3:57 PM
@gilldeacon.bsky.social Framing Long COVID as psychological is propaganda! It misleads the public and harms patients- especially children (our future generation) still suffering without biomedical care. Please stop spreading this dangerous misinformation! Who is promoting you to spread this?
@gilldeacon.bsky.social Respecting your courage in speaking on your Long COVID journey, but promoting a "recovery" narrative based on psychological and mind-body interventions in your CBC interview of Oct 26th gravely misrepresented Long COVID in public discourse.
Thoroughly disappointed in this LC media coverage that aired Oct 26, 2025 on CBC Canada completely misrepresents this life altering illness…extremely harmful.
Need community advocates to share far and wide & also reach out to CBC. 1/2
#LCisreal
#MEcfs
#pwME
m.youtube.com/watch?v=DXri...
Need community advocates to share far and wide & also reach out to CBC. 1/2
#LCisreal
#MEcfs
#pwME
m.youtube.com/watch?v=DXri...
Her mysterious symptoms turned out to be long COVID
YouTube video by CBC News: The National
m.youtube.com
October 28, 2025 at 5:19 PM
@gilldeacon.bsky.social Respecting your courage in speaking on your Long COVID journey, but promoting a "recovery" narrative based on psychological and mind-body interventions in your CBC interview of Oct 26th gravely misrepresented Long COVID in public discourse.
The power of patient agency- physicians bring expertise, patients bring agency, lived experience, and questions. True partnership is key!
An insightful and timely read -
kevinmd.com/2025/07/why-...
An insightful and timely read -
kevinmd.com/2025/07/why-...
Why agency and partnership are vital in modern health care
Effective health care requires agency, responsibility, advocacy, and partnership to ensure humane, personal, and positive outcomes for patients and providers alike.
kevinmd.com
October 21, 2025 at 5:18 PM
The power of patient agency- physicians bring expertise, patients bring agency, lived experience, and questions. True partnership is key!
An insightful and timely read -
kevinmd.com/2025/07/why-...
An insightful and timely read -
kevinmd.com/2025/07/why-...
Canada lacks data on children & youth with Long COVID, unlike the 6M in the USA. This insightful and timely article shows how multi-site pediatric data sharing works with consent, governance, and secure systems.
ped-rheum.biomedcentral.com/articles/10....
ped-rheum.biomedcentral.com/articles/10....
A roadmap for navigating child health research data sharing across Canada and beyond – building on UCAN CAN-DU - Pediatric Rheumatology
Sharing health data within and across jurisdictions is important for research and improving healthcare quality; however, researchers, governments and funders must balance the benefits of data sharing ...
ped-rheum.biomedcentral.com
October 20, 2025 at 12:58 PM
Canada lacks data on children & youth with Long COVID, unlike the 6M in the USA. This insightful and timely article shows how multi-site pediatric data sharing works with consent, governance, and secure systems.
ped-rheum.biomedcentral.com/articles/10....
ped-rheum.biomedcentral.com/articles/10....
Being punished for being sick. Marked truant. Denied support. Misdiagnosed by our system.
New report out on how schools are failing a generation.
www.rollingstone.com/culture/cult...
New report out on how schools are failing a generation.
www.rollingstone.com/culture/cult...
Long Covid Is Real -- And It's Changing an Entire Generation
Long Covid is affecting hundreds of thousands of kids in America, and many doctors and schools refuse to recognize their illness.
www.rollingstone.com
October 17, 2025 at 2:22 AM
Being punished for being sick. Marked truant. Denied support. Misdiagnosed by our system.
New report out on how schools are failing a generation.
www.rollingstone.com/culture/cult...
New report out on how schools are failing a generation.
www.rollingstone.com/culture/cult...
4 years ago I took my daughter to Germany - she tested positive for microclots. I brought the results back to Canada hoping our peds docs would help- no! they refused to even dabble into the unknown.
Time for change! Sign the CLCN petition - c.org/m9pRcrhMBX
Time for change! Sign the CLCN petition - c.org/m9pRcrhMBX
Have you seen this petition yet?
Demand Federal Action on Biomedical Care for Children Living with Long COVID
c.org
October 12, 2025 at 1:34 PM
4 years ago I took my daughter to Germany - she tested positive for microclots. I brought the results back to Canada hoping our peds docs would help- no! they refused to even dabble into the unknown.
Time for change! Sign the CLCN petition - c.org/m9pRcrhMBX
Time for change! Sign the CLCN petition - c.org/m9pRcrhMBX
When bias becomes a diagnosis, care disappears!
Stigmatizing language in medical records can mean the difference between care & neglect.
For Children with #LongCOVID, these labels replace investigation with dismissal.
Sign & share the Petition:
chng.it/7ZSzLXnp5n
Stigmatizing language in medical records can mean the difference between care & neglect.
For Children with #LongCOVID, these labels replace investigation with dismissal.
Sign & share the Petition:
chng.it/7ZSzLXnp5n
Sign the Petition
Demand Federal Action on Biomedical Care for Children Living with Long COVID
chng.it
October 8, 2025 at 3:04 PM
When bias becomes a diagnosis, care disappears!
Stigmatizing language in medical records can mean the difference between care & neglect.
For Children with #LongCOVID, these labels replace investigation with dismissal.
Sign & share the Petition:
chng.it/7ZSzLXnp5n
Stigmatizing language in medical records can mean the difference between care & neglect.
For Children with #LongCOVID, these labels replace investigation with dismissal.
Sign & share the Petition:
chng.it/7ZSzLXnp5n
How do we create a culture clinicians feel safe recognizing complex symptoms - and believe their young Long COVID patients instead of dismissing them?
It's time to act.
Sign & share the CLCN Petition calling for safe evidence -based biomedical care: chng.it/7ZSzLXnp5n
It's time to act.
Sign & share the CLCN Petition calling for safe evidence -based biomedical care: chng.it/7ZSzLXnp5n
Sign the Petition
Demand Federal Action on Biomedical Care for Children Living with Long COVID
chng.it
October 6, 2025 at 2:50 PM
How do we create a culture clinicians feel safe recognizing complex symptoms - and believe their young Long COVID patients instead of dismissing them?
It's time to act.
Sign & share the CLCN Petition calling for safe evidence -based biomedical care: chng.it/7ZSzLXnp5n
It's time to act.
Sign & share the CLCN Petition calling for safe evidence -based biomedical care: chng.it/7ZSzLXnp5n
A parent's intuition is often a child's silent voice. It's time Our health care system starts listening.
Sign the petition: chng.it/T4yHRxPX6S
kevinmd.com/2025/07/why-...
Sign the petition: chng.it/T4yHRxPX6S
kevinmd.com/2025/07/why-...
Why listening to parents’ intuition can save lives in pediatric care
The article explores how clinicians can integrate intuition, particularly that of parents, with scientific reasoning to improve diagnostic care and strengthen human connection in medical practice.
kevinmd.com
October 4, 2025 at 7:13 PM
A parent's intuition is often a child's silent voice. It's time Our health care system starts listening.
Sign the petition: chng.it/T4yHRxPX6S
kevinmd.com/2025/07/why-...
Sign the petition: chng.it/T4yHRxPX6S
kevinmd.com/2025/07/why-...
Which is exactly why we stand united to bring to the forefront issues like Long COVID in children & youth that is NOT a mental health issue but a biomedical one. @cmadocs.bsky.social will be held accountable to respond.
If you are with me- pls sign & share: chng.it/T4yHRxPX6S
If you are with me- pls sign & share: chng.it/T4yHRxPX6S
October 3, 2025 at 12:42 PM
Which is exactly why we stand united to bring to the forefront issues like Long COVID in children & youth that is NOT a mental health issue but a biomedical one. @cmadocs.bsky.social will be held accountable to respond.
If you are with me- pls sign & share: chng.it/T4yHRxPX6S
If you are with me- pls sign & share: chng.it/T4yHRxPX6S
This is what I thought it was going to be. Sadly, it was a political agenda that was directed instead of listening to the public. I am ashamed to see @cmadocs.bsky.social who claim to be the Docs speaking in the interest of the people,instead taking orders from the minister.
CMA Town Hall: A Conversation with the Health Minister - a virtual discussion on Oct. 2nd at 6:30 pm ET
An important opportunity to raise awareness and advocate for Children living with Long COVID.
events.cma.ca/ereg/index.p...
An important opportunity to raise awareness and advocate for Children living with Long COVID.
events.cma.ca/ereg/index.p...
CMA town hall: A conversation with the health minister
<p><span style="font-size:14px;"><span style="font-family:Bliss Pro Light;">Please email us at <a href="mailto:registration@cma.ca?subject=CMA%20town%
events.cma.ca
October 3, 2025 at 12:40 PM
This is what I thought it was going to be. Sadly, it was a political agenda that was directed instead of listening to the public. I am ashamed to see @cmadocs.bsky.social who claim to be the Docs speaking in the interest of the people,instead taking orders from the minister.