@eknight8.bsky.social
Mum to two amazing autistic sons (one has a PDA profile). Sadly one has ME, PoTS, hEDS and MCAS. Scientific background and interested in research in these areas. Avoiding Covid.
Reposted
@rthonwesstreeting.bsky.social
‘More like polio’ this article is on point and we have millions with long covid. A dismal vaccine offering, no advice on masking for an airborne virus with serious post infection risks and no lasting immunity, which is why Taiwan are offering 4 vaccines a year!
‘More like polio’ this article is on point and we have millions with long covid. A dismal vaccine offering, no advice on masking for an airborne virus with serious post infection risks and no lasting immunity, which is why Taiwan are offering 4 vaccines a year!
‘We haven’t learned anything’: Readers despair over UK’s Covid response in 2025
Many of the protections and behaviours that helped us during the pandemic — like staying home when sick, wearing masks, and improving ventilation – have quietly disappeared, say Independent readers
www.independent.co.uk
June 27, 2025 at 9:10 AM
@rthonwesstreeting.bsky.social
‘More like polio’ this article is on point and we have millions with long covid. A dismal vaccine offering, no advice on masking for an airborne virus with serious post infection risks and no lasting immunity, which is why Taiwan are offering 4 vaccines a year!
‘More like polio’ this article is on point and we have millions with long covid. A dismal vaccine offering, no advice on masking for an airborne virus with serious post infection risks and no lasting immunity, which is why Taiwan are offering 4 vaccines a year!
Reposted
Can I get an ETA on most media headlines going from “Mysterious malady isn’t all in your head” to the decades-overdue “The neglect & abuse of #pwME is a global health & human rights scandal”?
#GreatestMEdicalScandal #ExposeMENow #MEKills #MillionsMissing #JohnVsJonVsME #ME
#GreatestMEdicalScandal #ExposeMENow #MEKills #MillionsMissing #JohnVsJonVsME #ME
June 22, 2025 at 5:31 AM
Can I get an ETA on most media headlines going from “Mysterious malady isn’t all in your head” to the decades-overdue “The neglect & abuse of #pwME is a global health & human rights scandal”?
#GreatestMEdicalScandal #ExposeMENow #MEKills #MillionsMissing #JohnVsJonVsME #ME
#GreatestMEdicalScandal #ExposeMENow #MEKills #MillionsMissing #JohnVsJonVsME #ME
Reposted
Louder for the people in the back: "It has been a public health failure that the public does not realize how much organ damage #COVID infection can cause to things that aren’t your lungs (or throat or nose or taste buds)."
The image below is based on data collected from 80,071 kids and teens:
The image below is based on data collected from 80,071 kids and teens:
June 14, 2025 at 3:46 AM
Louder for the people in the back: "It has been a public health failure that the public does not realize how much organ damage #COVID infection can cause to things that aren’t your lungs (or throat or nose or taste buds)."
The image below is based on data collected from 80,071 kids and teens:
The image below is based on data collected from 80,071 kids and teens:
Reposted
“Over a third of COVID infections are asymptomatic… “Stay home [or mask up or take a test] if you feel sick” and “here’s a list of common COVID symptoms” are…pieces of advice that…won’t do much to contain or control a virus that is often asymptomatic.”
As NB.1.8.1 spreads, there’s only one thing spreading faster: misinformation. Here, I run down 5 of the most common errors I see circulating about COVID and encourage people to integrate airborne disease mitigation into their lives holistically.
www.thegauntlet.news/p/common-mis...
www.thegauntlet.news/p/common-mis...
Common Misconceptions about COVID Hold Strong as New Variant Spreads
Media has the public talking about the "razor blade" COVID variant, but years of inaccurate public health messaging have taken their toll
www.thegauntlet.news
June 5, 2025 at 10:42 PM
“Over a third of COVID infections are asymptomatic… “Stay home [or mask up or take a test] if you feel sick” and “here’s a list of common COVID symptoms” are…pieces of advice that…won’t do much to contain or control a virus that is often asymptomatic.”
Reposted
📢 Brain, Body, Burnout
The invisible impact of COVID19 on hypermobility & neurodivergence: how our bodies, brains & burnout are affected.
July 11th Royal Society of Medicine
#Autism #ADHD #EDS #hEDS #HSD #Covid #dysautonomia #gastro #fibro #ChronicFatigue
www.rsm.ac.uk/events/rheum...
The invisible impact of COVID19 on hypermobility & neurodivergence: how our bodies, brains & burnout are affected.
July 11th Royal Society of Medicine
#Autism #ADHD #EDS #hEDS #HSD #Covid #dysautonomia #gastro #fibro #ChronicFatigue
www.rsm.ac.uk/events/rheum...
The Invisible Impact Of COVID-19 On Hypermobility Syndromes And Neurodivergence -Bodies, Brains And Burnout
Discover the latest research on hypermobility, post-COVID syndrome, and innovative treatments at our expert-led event. Learn about neuromodulation, early diagnosis, and specialist care to improve pati...
www.rsm.ac.uk
May 28, 2025 at 8:47 AM
📢 Brain, Body, Burnout
The invisible impact of COVID19 on hypermobility & neurodivergence: how our bodies, brains & burnout are affected.
July 11th Royal Society of Medicine
#Autism #ADHD #EDS #hEDS #HSD #Covid #dysautonomia #gastro #fibro #ChronicFatigue
www.rsm.ac.uk/events/rheum...
The invisible impact of COVID19 on hypermobility & neurodivergence: how our bodies, brains & burnout are affected.
July 11th Royal Society of Medicine
#Autism #ADHD #EDS #hEDS #HSD #Covid #dysautonomia #gastro #fibro #ChronicFatigue
www.rsm.ac.uk/events/rheum...
Reposted
Our Sunday writing group is trying to find a way of explaining to the outside world what ME is like.
It’s co-hosted by Stuart who I think does a really good job with this well-researched piece.
pillowwriters.wordpress.com/2024/07/08/h...
It’s co-hosted by Stuart who I think does a really good job with this well-researched piece.
pillowwriters.wordpress.com/2024/07/08/h...
How Serious Can It Be?
“Myalgic Encephalomyelitis? (ME)? ’Chronic Fatigue Syndrome’? How serious can it be? An illness which makes you mostly rest in bed? It can’t really be all that bad. A little bit of extra time i…
pillowwriters.wordpress.com
May 23, 2025 at 8:47 AM
Our Sunday writing group is trying to find a way of explaining to the outside world what ME is like.
It’s co-hosted by Stuart who I think does a really good job with this well-researched piece.
pillowwriters.wordpress.com/2024/07/08/h...
It’s co-hosted by Stuart who I think does a really good job with this well-researched piece.
pillowwriters.wordpress.com/2024/07/08/h...
Reposted
I cried reading this letter to @rthonwesstreeting.bsky.social and @ashleydaltonmp.bsky.social. Please, please fund the plan, people with ME/CFS have waited too long already.
A huge thank you to Tessa Munt and the other 71 LibDem MPs for this much-appreciated and much-needed support.
A huge thank you to Tessa Munt and the other 71 LibDem MPs for this much-appreciated and much-needed support.
So delighted that all 72 LibDem MPs signed this letter to @rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social asking the govt to back the ME/CFS Delivery Plan with the resources it deserves. May this be a huge encouragement to the ME community and the start of meaningful change. #WorldMEDay
May 9, 2025 at 7:58 AM
I cried reading this letter to @rthonwesstreeting.bsky.social and @ashleydaltonmp.bsky.social. Please, please fund the plan, people with ME/CFS have waited too long already.
A huge thank you to Tessa Munt and the other 71 LibDem MPs for this much-appreciated and much-needed support.
A huge thank you to Tessa Munt and the other 71 LibDem MPs for this much-appreciated and much-needed support.
Reposted
University of Exeter:'Earlier diagnosis and better care needed for ME and Long COVID patients, report finds'
'Significant improvement in the diagnosis and care of myalgic encephalomyelitis (ME) and Long COVID is urgently needed across NHS...'
news.exeter.ac.uk/faculty-of-h...
'Significant improvement in the diagnosis and care of myalgic encephalomyelitis (ME) and Long COVID is urgently needed across NHS...'
news.exeter.ac.uk/faculty-of-h...
Earlier diagnosis and better care needed for ME and Long COVID patients, report finds
Significant improvement in the diagnosis and care of myalgic encephalomyelitis (ME) and Long COVID is urgently needed across NHS and social care services, according to a new report. The University of ...
news.exeter.ac.uk
April 3, 2025 at 12:31 PM
University of Exeter:'Earlier diagnosis and better care needed for ME and Long COVID patients, report finds'
'Significant improvement in the diagnosis and care of myalgic encephalomyelitis (ME) and Long COVID is urgently needed across NHS...'
news.exeter.ac.uk/faculty-of-h...
'Significant improvement in the diagnosis and care of myalgic encephalomyelitis (ME) and Long COVID is urgently needed across NHS...'
news.exeter.ac.uk/faculty-of-h...
Reposted
'… often the medical practitioner will not know about physical symptoms related to neurodivergence and diagnose "anxiety". The student is then either marked as engaging in Emotional Based School Avoidance or given unauthorised absence coding.' #SEND
‘researchers have more recently become aware of a mediating factor linking neurodivergence in many individuals to these more widespread chronic physical conditions -hypermobility’
@bendybrain.bsky.social @jgjanegreenmbe.bsky.social @researchdigest.bsky.social
#ADHD #Autism
tinyurl.com/4tm69d4t
@bendybrain.bsky.social @jgjanegreenmbe.bsky.social @researchdigest.bsky.social
#ADHD #Autism
tinyurl.com/4tm69d4t
Connective issues | BPS
Emma Barratt (Editor, Research Digest) on emerging links between neurodivergence, hypermobility and more.
www.bps.org.uk
March 31, 2025 at 8:36 PM
'… often the medical practitioner will not know about physical symptoms related to neurodivergence and diagnose "anxiety". The student is then either marked as engaging in Emotional Based School Avoidance or given unauthorised absence coding.' #SEND
Reposted
THIS IS HUGE! Researchers at Scripps Research Institute have developed a groundbreaking UNIVERSAL coronavirus vaccine that triggers STONG immune responses AND shows promise in neutralizing MULTIPLE coronaviruses, including those responsible for causing COVID-19, MERS, AND even the “common cold.” 🧪🧵⬇️
March 27, 2025 at 4:00 PM
THIS IS HUGE! Researchers at Scripps Research Institute have developed a groundbreaking UNIVERSAL coronavirus vaccine that triggers STONG immune responses AND shows promise in neutralizing MULTIPLE coronaviruses, including those responsible for causing COVID-19, MERS, AND even the “common cold.” 🧪🧵⬇️
Reposted
Absolutely shocking to see a Labour secretary of state stand at the despatch box and proudly announce slashing support for some of those who need it most - including removing the UC health top-up for young people, as if young disabled people don't exist?! #DisabilityBenefits
March 18, 2025 at 3:07 PM
Absolutely shocking to see a Labour secretary of state stand at the despatch box and proudly announce slashing support for some of those who need it most - including removing the UC health top-up for young people, as if young disabled people don't exist?! #DisabilityBenefits
This cause is close to my heart - please sign: you.38degrees.org.uk/petitions/in...
Invest in Long Covid & M.E. Research: Thousands of Children DISABLED, DISCHARGED, & HIDDEN FROM VIEW
• Five years after the start of the Covid pandemic, thousands remain severely ill - Many housebound or often bedbound, unable to attend school, work, or take part in daily life. Disabled, discha...
you.38degrees.org.uk
March 16, 2025 at 10:12 AM
This cause is close to my heart - please sign: you.38degrees.org.uk/petitions/in...
Reposted
Millions of lives on hold around the world with this dreadful illness. Decades of neglect. The UK has the opportunity to be a leader.
Please #FundThePlan
Please #FundThePlan
We’ve been so moved seeing the #FundThePlan videos over the past few weeks.
Now, we want to get our call to #FundThePlan out far and wide. Here’s a little something we’ve put together for the campaign.
We’d love your help making some noise with it 🙏
Now, we want to get our call to #FundThePlan out far and wide. Here’s a little something we’ve put together for the campaign.
We’d love your help making some noise with it 🙏
March 12, 2025 at 3:11 PM
Millions of lives on hold around the world with this dreadful illness. Decades of neglect. The UK has the opportunity to be a leader.
Please #FundThePlan
Please #FundThePlan
Reposted
Cardiologists seeing more cases of POTS since the start of the COVID-19 Pandemic.
"Dr Hong said the condition can be debilitating, with symptoms like dizziness, fainting, brain fog, shortness of breath and even gastrointestinal issues."
"Dr Hong said the condition can be debilitating, with symptoms like dizziness, fainting, brain fog, shortness of breath and even gastrointestinal issues."
Cardiologists seeing more cases of POTS since the start of the COVID-19 Pandemic
POTS is a condition that disrupts the body's ability to regulate blood flow while changing positions. Dr. Charles Hong says they have seen a sharp rise since COVID.
www.wzzm13.com
March 11, 2025 at 1:51 AM
Cardiologists seeing more cases of POTS since the start of the COVID-19 Pandemic.
"Dr Hong said the condition can be debilitating, with symptoms like dizziness, fainting, brain fog, shortness of breath and even gastrointestinal issues."
"Dr Hong said the condition can be debilitating, with symptoms like dizziness, fainting, brain fog, shortness of breath and even gastrointestinal issues."
Reposted
🆕 Full Article in the Times by Sean O'Neill #MECFS
If we can’t learn from errors, families relive tragedy for nothing
The inquest into my daughter’s death showed me that the system is almost entirely broken
archive.ph/2025.02.23-1...
If we can’t learn from errors, families relive tragedy for nothing
The inquest into my daughter’s death showed me that the system is almost entirely broken
archive.ph/2025.02.23-1...
archive.ph
February 23, 2025 at 5:51 PM
🆕 Full Article in the Times by Sean O'Neill #MECFS
If we can’t learn from errors, families relive tragedy for nothing
The inquest into my daughter’s death showed me that the system is almost entirely broken
archive.ph/2025.02.23-1...
If we can’t learn from errors, families relive tragedy for nothing
The inquest into my daughter’s death showed me that the system is almost entirely broken
archive.ph/2025.02.23-1...
Reposted
James shared his story of living with #MECFS in the Sunday Times today.
There’s now a fundraiser set up by his girlfriend to raise money for @actionforme.bsky.social
Please share if you can! Article below -
www.printfriendly.com/print?url=ht...
There’s now a fundraiser set up by his girlfriend to raise money for @actionforme.bsky.social
Please share if you can! Article below -
www.printfriendly.com/print?url=ht...
February 23, 2025 at 10:59 PM
James shared his story of living with #MECFS in the Sunday Times today.
There’s now a fundraiser set up by his girlfriend to raise money for @actionforme.bsky.social
Please share if you can! Article below -
www.printfriendly.com/print?url=ht...
There’s now a fundraiser set up by his girlfriend to raise money for @actionforme.bsky.social
Please share if you can! Article below -
www.printfriendly.com/print?url=ht...
Reposted
How to support your child with Long Covid : the importance of the family
danilobuonsenso.substack.com/p/how-to-sup...
If you find it useful, please like and share it wifely! free access.
Next episode will be on role of schools and teachers
danilobuonsenso.substack.com/p/how-to-sup...
If you find it useful, please like and share it wifely! free access.
Next episode will be on role of schools and teachers
How to support your child with Long Covid : the importance of the family
Here is the first in-depth analysis on how to support your child with long covid, not from a pharmacological perspective.
danilobuonsenso.substack.com
February 23, 2025 at 3:51 PM
How to support your child with Long Covid : the importance of the family
danilobuonsenso.substack.com/p/how-to-sup...
If you find it useful, please like and share it wifely! free access.
Next episode will be on role of schools and teachers
danilobuonsenso.substack.com/p/how-to-sup...
If you find it useful, please like and share it wifely! free access.
Next episode will be on role of schools and teachers
Reposted
Sympathetic 8-minute video on popular YouTube channel, SciShow, already has over 100,000 views in less than 24 hours.
"Exercise Actually Makes Chronic Fatigue Syndrome Worse"
www.youtube.com/watch?v=wxSw...
#MEcfs #CFS
"Exercise Actually Makes Chronic Fatigue Syndrome Worse"
www.youtube.com/watch?v=wxSw...
#MEcfs #CFS
February 21, 2025 at 2:46 PM
Sympathetic 8-minute video on popular YouTube channel, SciShow, already has over 100,000 views in less than 24 hours.
"Exercise Actually Makes Chronic Fatigue Syndrome Worse"
www.youtube.com/watch?v=wxSw...
#MEcfs #CFS
"Exercise Actually Makes Chronic Fatigue Syndrome Worse"
www.youtube.com/watch?v=wxSw...
#MEcfs #CFS
Reposted
‘No extra cash for new services or research’.
#ME #DeliveryPlan
The Times today.
www.thetimes.com/article/0612...
#ME #DeliveryPlan
The Times today.
www.thetimes.com/article/0612...
Plan to help ME sufferers will not include extra funding
Charities and MPs ‘incredibly disappointed’ at government’s decision, which they say will make it harder to support patients and find new treatments
www.thetimes.com
February 19, 2025 at 9:24 AM
‘No extra cash for new services or research’.
#ME #DeliveryPlan
The Times today.
www.thetimes.com/article/0612...
#ME #DeliveryPlan
The Times today.
www.thetimes.com/article/0612...
Reposted
Plan to help #ME sufferers has been delayed for too long 33months and 5 Health Secretaries
www.thetimes.com/article/ff2a...
www.thetimes.com/article/ff2a...
Plan to help ME sufferers has been delayed for too long
Ministers must show that care and research for these neglected patients is a priority
www.thetimes.com
February 19, 2025 at 9:50 AM
Plan to help #ME sufferers has been delayed for too long 33months and 5 Health Secretaries
www.thetimes.com/article/ff2a...
www.thetimes.com/article/ff2a...
Reposted
Are you signing the petition to SCRAP #SEND Safety Valve and write off council High Needs debt? www.specialneedsjungle.com/petition-scr...
Renewed petition to SCRAP SEND Safety Valve and write off council High Needs debt - Special Needs Jungle
Rachel Filmer has relaunched her petition to scrap the SEND safety Valve scheme and forgive LA high needs debts to stop more harm
www.specialneedsjungle.com
February 15, 2025 at 10:10 AM
Are you signing the petition to SCRAP #SEND Safety Valve and write off council High Needs debt? www.specialneedsjungle.com/petition-scr...
Reposted
Most people still unaware of asymptomatic spread and why wearing a mask even when feeling ok is what everyone should be doing.
February 4, 2025 at 3:41 AM
Most people still unaware of asymptomatic spread and why wearing a mask even when feeling ok is what everyone should be doing.
Reposted
I never thought a day would come when I would write a post this critical about the Cochrane Collaboration. But today was that day:
absolutelymaybe.plos.org/2025/01/24/w...
#mecfs
absolutelymaybe.plos.org/2025/01/24/w...
#mecfs
When Journal, Scientific Society, and Community Values Clash - Absolutely Maybe
A process I’ve been involved with at a journal recently exploded. It was meant to resolve a controversy about a publication, not…
absolutelymaybe.plos.org
January 24, 2025 at 5:17 AM
I never thought a day would come when I would write a post this critical about the Cochrane Collaboration. But today was that day:
absolutelymaybe.plos.org/2025/01/24/w...
#mecfs
absolutelymaybe.plos.org/2025/01/24/w...
#mecfs
Reposted
“I don’t consider myself COVID cautious. I consider myself COVID competent,” Zebrowski said. “Cautious would imply that I have an unreasonable fear of something. I do not have an unreasonable fear of this disease.”
Nailed it 🔥
Nailed it 🔥
Meet the Americans who still take COVID-19 precautions seriously
People with immune system health problems continue to take precautions against COVID-19 five years into the pandemic.
apnews.com
January 17, 2025 at 10:35 PM
“I don’t consider myself COVID cautious. I consider myself COVID competent,” Zebrowski said. “Cautious would imply that I have an unreasonable fear of something. I do not have an unreasonable fear of this disease.”
Nailed it 🔥
Nailed it 🔥
Reposted
Another reminder:
Respiratory infections spread mainly through the air. That’s why they affect the lungs.
Masks, worn correctly and consistently, reduce the spread of respiratory infections.
Respirators work better than masks.
Washing hands isn’t wrong, but it won’t stop airborne transmission.
Respiratory infections spread mainly through the air. That’s why they affect the lungs.
Masks, worn correctly and consistently, reduce the spread of respiratory infections.
Respirators work better than masks.
Washing hands isn’t wrong, but it won’t stop airborne transmission.
December 10, 2024 at 9:56 AM
Another reminder:
Respiratory infections spread mainly through the air. That’s why they affect the lungs.
Masks, worn correctly and consistently, reduce the spread of respiratory infections.
Respirators work better than masks.
Washing hands isn’t wrong, but it won’t stop airborne transmission.
Respiratory infections spread mainly through the air. That’s why they affect the lungs.
Masks, worn correctly and consistently, reduce the spread of respiratory infections.
Respirators work better than masks.
Washing hands isn’t wrong, but it won’t stop airborne transmission.