Loulou
@loulou05.bsky.social
I'm a self employed designer, mum to one brilliant, beautiful boy and wife to my college sweetheart.
Powerful #LongCovidKids video: Invest in Long Covid & M.E. Research: Thousands of Children DISABLED, DISCHARGED, & HIDDEN FROM VIEW
youtube.com/shorts/6JRF4...
youtube.com/shorts/6JRF4...
Don't Shut The Door On Us
YouTube video by Long Covid Kids
youtube.com
March 25, 2025 at 5:01 PM
Powerful #LongCovidKids video: Invest in Long Covid & M.E. Research: Thousands of Children DISABLED, DISCHARGED, & HIDDEN FROM VIEW
youtube.com/shorts/6JRF4...
youtube.com/shorts/6JRF4...
Reposted by Loulou
More media coverage of our #LongCovid research..
Thanks to Ryan for his time and energy in helping with this piece!
www.bbc.co.uk/news/article...
Thanks to Ryan for his time and energy in helping with this piece!
www.bbc.co.uk/news/article...
'I've had long Covid for years, but I'm hopeful again' - BBC News
Ryan Cawley, who was diagnosed in 2021, has taken part in an anti-viral drug study.
www.bbc.co.uk
March 21, 2025 at 6:35 PM
More media coverage of our #LongCovid research..
Thanks to Ryan for his time and energy in helping with this piece!
www.bbc.co.uk/news/article...
Thanks to Ryan for his time and energy in helping with this piece!
www.bbc.co.uk/news/article...
Reposted by Loulou
"While the risks of myocarditis have been highest in teen boys and young men regardless of cause, the severity and outcome of myocarditis was much worse at the 90-day mark when it stemmed from COVID-19 infection or other viral diseases."
theconversation.com/what-the-res...
theconversation.com/what-the-res...
What the research shows about risks of myocarditis from COVID vaccines versus risks of heart damage from COVID – two pediatric cardiologists explain how to parse the data
Parsing the risk of myocarditis from viral infection versus vaccination is challenging, and researchers are intensely studying the various factors that are at play.
theconversation.com
March 21, 2025 at 6:47 PM
"While the risks of myocarditis have been highest in teen boys and young men regardless of cause, the severity and outcome of myocarditis was much worse at the 90-day mark when it stemmed from COVID-19 infection or other viral diseases."
theconversation.com/what-the-res...
theconversation.com/what-the-res...
Reposted by Loulou
"The Welsh Government said it had increased funding to support people living with the long-term effects of Covid to £8m, which would be repeated"
Recent research reports 1 in 10 believe they have Long Covid.
The current population in #Wales 3,107,500?
8 million ÷ 3,107,500 🤔
#UnmetHealthNeeds
Recent research reports 1 in 10 believe they have Long Covid.
The current population in #Wales 3,107,500?
8 million ÷ 3,107,500 🤔
#UnmetHealthNeeds
March 22, 2025 at 7:39 AM
"The Welsh Government said it had increased funding to support people living with the long-term effects of Covid to £8m, which would be repeated"
Recent research reports 1 in 10 believe they have Long Covid.
The current population in #Wales 3,107,500?
8 million ÷ 3,107,500 🤔
#UnmetHealthNeeds
Recent research reports 1 in 10 believe they have Long Covid.
The current population in #Wales 3,107,500?
8 million ÷ 3,107,500 🤔
#UnmetHealthNeeds
Reposted by Loulou
A spokesperson said: "The services that the GPs are referring into are mainly paediatric, so there are no doctors who are familiar with #LongCovid, no Dr's who are able to put the pieces of the jigsaw together."
#PatientCare #PatientSafety
@rhunapiorwerth.bsky.social
www.bbc.co.uk/news/article...
#PatientCare #PatientSafety
@rhunapiorwerth.bsky.social
www.bbc.co.uk/news/article...
Long Covid: Young people describe 'battle' to access NHS care
Kaylee, 17, who experiences dizziness and shortness of breath, says she has not seen an NHS specialist for two years.
www.bbc.co.uk
March 22, 2025 at 7:36 AM
A spokesperson said: "The services that the GPs are referring into are mainly paediatric, so there are no doctors who are familiar with #LongCovid, no Dr's who are able to put the pieces of the jigsaw together."
#PatientCare #PatientSafety
@rhunapiorwerth.bsky.social
www.bbc.co.uk/news/article...
#PatientCare #PatientSafety
@rhunapiorwerth.bsky.social
www.bbc.co.uk/news/article...
Reposted by Loulou
Kaylee, vividly recalls being bed-ridden for 3 days when she was 12 after a sudden dizzy spell caused her to fall & hit her head.
She said doctors initially failed to identify the cause of her illness- she was not diagnosed until she was 13.
@longcovidsupport.bsky.social
@longcovidsos.bsky.social
She said doctors initially failed to identify the cause of her illness- she was not diagnosed until she was 13.
@longcovidsupport.bsky.social
@longcovidsos.bsky.social
March 22, 2025 at 7:36 AM
Kaylee, vividly recalls being bed-ridden for 3 days when she was 12 after a sudden dizzy spell caused her to fall & hit her head.
She said doctors initially failed to identify the cause of her illness- she was not diagnosed until she was 13.
@longcovidsupport.bsky.social
@longcovidsos.bsky.social
She said doctors initially failed to identify the cause of her illness- she was not diagnosed until she was 13.
@longcovidsupport.bsky.social
@longcovidsos.bsky.social
Reposted by Loulou
I’ll be joining Asthma&Lung UK alongside @sheencr.bsky.social today to talk about how we can clean up Greater Manchester’s air.
Event is open to the public, come down if you can! Manchester Art Gallery 12-2pm ⬇️
Event is open to the public, come down if you can! Manchester Art Gallery 12-2pm ⬇️
March 22, 2025 at 8:36 AM
I’ll be joining Asthma&Lung UK alongside @sheencr.bsky.social today to talk about how we can clean up Greater Manchester’s air.
Event is open to the public, come down if you can! Manchester Art Gallery 12-2pm ⬇️
Event is open to the public, come down if you can! Manchester Art Gallery 12-2pm ⬇️
Reposted by Loulou
#Spring brings new hope.
Please sign and share.
Patients can’t fight alone.
New research shows 1 in 10 believe they have LC.
Anyone can develop LC, we want services to be there for those who need them now, and in the future.
#LCandME
you.38degrees.org.uk/petitions/in...
Please sign and share.
Patients can’t fight alone.
New research shows 1 in 10 believe they have LC.
Anyone can develop LC, we want services to be there for those who need them now, and in the future.
#LCandME
you.38degrees.org.uk/petitions/in...
March 22, 2025 at 9:21 AM
#Spring brings new hope.
Please sign and share.
Patients can’t fight alone.
New research shows 1 in 10 believe they have LC.
Anyone can develop LC, we want services to be there for those who need them now, and in the future.
#LCandME
you.38degrees.org.uk/petitions/in...
Please sign and share.
Patients can’t fight alone.
New research shows 1 in 10 believe they have LC.
Anyone can develop LC, we want services to be there for those who need them now, and in the future.
#LCandME
you.38degrees.org.uk/petitions/in...
Reposted by Loulou
hi hello it might not happen to you, but if you aren't masking at least some of the time YOU could do this to someones child.
health.clevelandclinic.org/asymptomatic...
health.clevelandclinic.org/asymptomatic...
March 22, 2025 at 3:57 PM
hi hello it might not happen to you, but if you aren't masking at least some of the time YOU could do this to someones child.
health.clevelandclinic.org/asymptomatic...
health.clevelandclinic.org/asymptomatic...
Reposted by Loulou
“I think we need to look hard at how we make things better for children in schools. I think it needs to be a holistic approach, and certainly an inclusive approach,”
www.theguardian.com/education/20...
#Education #Inclusion
www.theguardian.com/education/20...
#Education #Inclusion
March 22, 2025 at 1:49 PM
“I think we need to look hard at how we make things better for children in schools. I think it needs to be a holistic approach, and certainly an inclusive approach,”
www.theguardian.com/education/20...
#Education #Inclusion
www.theguardian.com/education/20...
#Education #Inclusion
Reposted by Loulou
Help us highlight the growing need for urgent action on Long Covid and M.E.
Please, sign and share with your networks, every signature counts.
#LCandME #FundOurFuture #FundThePlan
you.38degrees.org.uk/petitions/in...
Please, sign and share with your networks, every signature counts.
#LCandME #FundOurFuture #FundThePlan
you.38degrees.org.uk/petitions/in...
March 22, 2025 at 7:36 PM
Help us highlight the growing need for urgent action on Long Covid and M.E.
Please, sign and share with your networks, every signature counts.
#LCandME #FundOurFuture #FundThePlan
you.38degrees.org.uk/petitions/in...
Please, sign and share with your networks, every signature counts.
#LCandME #FundOurFuture #FundThePlan
you.38degrees.org.uk/petitions/in...
I just signed the petition urging the Government to invest in research to help those suffering from Long Covid. Will you sign too? 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 22, 2025 at 8:56 PM
I just signed the petition urging the Government to invest in research to help those suffering from Long Covid. Will you sign too? you.38degrees.org.uk/petitions/in...
Reposted by Loulou
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 by Loulou
💕Sometimes it's the simplest of things
We cover this & more in our SPLASH Guide on 'How to help someone with #longcovid'
🖇️ tinyurl.com/muw6e9uw
We cover this & more in our SPLASH Guide on 'How to help someone with #longcovid'
🖇️ tinyurl.com/muw6e9uw
February 14, 2025 at 9:52 AM
💕Sometimes it's the simplest of things
We cover this & more in our SPLASH Guide on 'How to help someone with #longcovid'
🖇️ tinyurl.com/muw6e9uw
We cover this & more in our SPLASH Guide on 'How to help someone with #longcovid'
🖇️ tinyurl.com/muw6e9uw
Reposted by Loulou
North Dakota introduce bill to criminalize the morning after pill.
It uses the “fetal personhood” argument which if passed, will have far reaching consequences for contraception, IVF and more.
This forced birth policy must be challenged. Our body, our choice.
www.newsweek.com/morning-afte...
It uses the “fetal personhood” argument which if passed, will have far reaching consequences for contraception, IVF and more.
This forced birth policy must be challenged. Our body, our choice.
www.newsweek.com/morning-afte...
Morning-after pill ban proposed by Republicans
Republicans in North Dakota proposed a bill that would make taking emergency contraception a criminal offense.
www.newsweek.com
February 14, 2025 at 9:54 PM
North Dakota introduce bill to criminalize the morning after pill.
It uses the “fetal personhood” argument which if passed, will have far reaching consequences for contraception, IVF and more.
This forced birth policy must be challenged. Our body, our choice.
www.newsweek.com/morning-afte...
It uses the “fetal personhood” argument which if passed, will have far reaching consequences for contraception, IVF and more.
This forced birth policy must be challenged. Our body, our choice.
www.newsweek.com/morning-afte...
Reposted by Loulou
this was a great and strong positive response to IVIG, even unexpected to me.
well, it keeps going well
well, it keeps going well
February 14, 2025 at 7:24 PM
this was a great and strong positive response to IVIG, even unexpected to me.
well, it keeps going well
well, it keeps going well
Reposted by Loulou
with a rational step by step approach, when you find the medication that best fits with the specific sub-phenotype of #longcovid, adolescents and young people with this disease can really and return to enjoy life ❤️
chats taken from my blog chat where people can directly communicate w me
chats taken from my blog chat where people can directly communicate w me
February 10, 2025 at 12:47 PM
with a rational step by step approach, when you find the medication that best fits with the specific sub-phenotype of #longcovid, adolescents and young people with this disease can really and return to enjoy life ❤️
chats taken from my blog chat where people can directly communicate w me
chats taken from my blog chat where people can directly communicate w me
Reposted by Loulou
Hard to believe this was a month ago!
Thanks to everyone who has watched and shared the Guardian video about my life with #LongCovid.
I've been overwhelmed with messages of support over the last month.
Thank you to everyone that has been in touch - it means a lot 🙏 ❤
Thanks to everyone who has watched and shared the Guardian video about my life with #LongCovid.
I've been overwhelmed with messages of support over the last month.
Thank you to everyone that has been in touch - it means a lot 🙏 ❤
The Guardian have documented a year in my life living with #LongCovid.
Please watch this short documentary to learn what it's like living with this debilitating disease and why we need urgent treatments.
www.theguardian.com/society/vide...
Please watch this short documentary to learn what it's like living with this debilitating disease and why we need urgent treatments.
www.theguardian.com/society/vide...
‘The pandemic isn’t over’: my year of long Covid – video
Darren Parkinson is one of about 2 million people living with long Covid in England and Scotland. The illness is having a detrimental impact on his life, stopping him from being the kind of active and...
www.theguardian.com
February 14, 2025 at 8:08 AM
Hard to believe this was a month ago!
Thanks to everyone who has watched and shared the Guardian video about my life with #LongCovid.
I've been overwhelmed with messages of support over the last month.
Thank you to everyone that has been in touch - it means a lot 🙏 ❤
Thanks to everyone who has watched and shared the Guardian video about my life with #LongCovid.
I've been overwhelmed with messages of support over the last month.
Thank you to everyone that has been in touch - it means a lot 🙏 ❤
Reposted by Loulou
The Department of Defense cancelling a $1.4 million grant *already awarded* to study Alzheimer disease and other dementias in minority veterans. Exactly the group most affected by these disorders. Excluded from clinical trials and now excluded from the few grants available as well. Invisible.
Our Department of Defense $1.4 million grant iwill no longer be funded due to Executive Order (EO) 14168: Defending Women from Gender Ideology Extremism and Restoring Biological Truth to the Federal Government.
February 14, 2025 at 8:29 PM
The Department of Defense cancelling a $1.4 million grant *already awarded* to study Alzheimer disease and other dementias in minority veterans. Exactly the group most affected by these disorders. Excluded from clinical trials and now excluded from the few grants available as well. Invisible.
Reposted by Loulou
Really disappointing propaganda and misinformation "from experts" here about Covid.
We are still in the Covid era and children should not go to school if they have Covid. Their colourless snot infection might just disable or harm another kid.
www.rnz.co.nz/news/nationa...
We are still in the Covid era and children should not go to school if they have Covid. Their colourless snot infection might just disable or harm another kid.
www.rnz.co.nz/news/nationa...
When should I keep my kid home from school?
Is it okay to give them a day off if they are just feeling tired?
www.rnz.co.nz
February 15, 2025 at 3:54 AM
Really disappointing propaganda and misinformation "from experts" here about Covid.
We are still in the Covid era and children should not go to school if they have Covid. Their colourless snot infection might just disable or harm another kid.
www.rnz.co.nz/news/nationa...
We are still in the Covid era and children should not go to school if they have Covid. Their colourless snot infection might just disable or harm another kid.
www.rnz.co.nz/news/nationa...
Reposted by Loulou
Thank you to Steve Harris @ BBC Radio Solent
for speaking to @sammiemc.bsky.social about the axed funding in @nhsdorset.bsky.social for #LongCovid services.
LCK would be pleased to meet with NHS Dorset to discuss how patients could be supported.
#LongCovidKids #PaediatricLongCovid
for speaking to @sammiemc.bsky.social about the axed funding in @nhsdorset.bsky.social for #LongCovid services.
LCK would be pleased to meet with NHS Dorset to discuss how patients could be supported.
#LongCovidKids #PaediatricLongCovid
February 14, 2025 at 11:40 AM
Thank you to Steve Harris @ BBC Radio Solent
for speaking to @sammiemc.bsky.social about the axed funding in @nhsdorset.bsky.social for #LongCovid services.
LCK would be pleased to meet with NHS Dorset to discuss how patients could be supported.
#LongCovidKids #PaediatricLongCovid
for speaking to @sammiemc.bsky.social about the axed funding in @nhsdorset.bsky.social for #LongCovid services.
LCK would be pleased to meet with NHS Dorset to discuss how patients could be supported.
#LongCovidKids #PaediatricLongCovid
Reposted by Loulou
A mother of four trapped in a “living death sentence” after #LongCovid ruined her life says she had hoped plans to legalise assisted dying in the UK would help her, but as they won’t, she is determined to end her life in Switzerland.
inews.co.uk/news/health/...
@longcovidsupport.bsky.social 😢
inews.co.uk/news/health/...
@longcovidsupport.bsky.social 😢
'Long Covid has trapped me in a living hell and not wanting to live anymore'
Kelly Smith-May, 40, is bedridden after becoming seriously ill following Covid. The mum-of-four has made the heartbreaking decision to end her life in Switzerland
inews.co.uk
February 15, 2025 at 8:54 AM
A mother of four trapped in a “living death sentence” after #LongCovid ruined her life says she had hoped plans to legalise assisted dying in the UK would help her, but as they won’t, she is determined to end her life in Switzerland.
inews.co.uk/news/health/...
@longcovidsupport.bsky.social 😢
inews.co.uk/news/health/...
@longcovidsupport.bsky.social 😢
Reposted by Loulou
We should all expect 𝘀𝗮𝗳𝗲 𝗰𝗮𝗿𝗲 𝗶𝗻 𝗵𝗲𝗮𝗹𝘁𝗵𝗰𝗮𝗿𝗲.
Individual cancer patients shouldn't have to self-advocate for basic infection prevention control.
Individual cancer patients shouldn't have to self-advocate for basic infection prevention control.
February 15, 2025 at 10:16 AM
We should all expect 𝘀𝗮𝗳𝗲 𝗰𝗮𝗿𝗲 𝗶𝗻 𝗵𝗲𝗮𝗹𝘁𝗵𝗰𝗮𝗿𝗲.
Individual cancer patients shouldn't have to self-advocate for basic infection prevention control.
Individual cancer patients shouldn't have to self-advocate for basic infection prevention control.
Reposted by Loulou
Our Long Covid Awareness Month newsletter will drop very soon
Sign up to get yours & find out how you can get involved.
Scroll down to find the sign up form on our website.
www.longcovidkids.org
🙏 share & join our community
#LongCovidKids #LongCovid #Newsletter #Charity #LongCovidAwareness
Sign up to get yours & find out how you can get involved.
Scroll down to find the sign up form on our website.
www.longcovidkids.org
🙏 share & join our community
#LongCovidKids #LongCovid #Newsletter #Charity #LongCovidAwareness
February 15, 2025 at 8:19 AM
Our Long Covid Awareness Month newsletter will drop very soon
Sign up to get yours & find out how you can get involved.
Scroll down to find the sign up form on our website.
www.longcovidkids.org
🙏 share & join our community
#LongCovidKids #LongCovid #Newsletter #Charity #LongCovidAwareness
Sign up to get yours & find out how you can get involved.
Scroll down to find the sign up form on our website.
www.longcovidkids.org
🙏 share & join our community
#LongCovidKids #LongCovid #Newsletter #Charity #LongCovidAwareness
Reposted by Loulou
We URGENTLY need to provide help to the most severely affected with #LongCovid and #ME
In September 2024 on World Patient Patient Safety Day, we wrote to The Secretary of State for Health, a letter signed by >250 healthcare professionals stating ‘Doing nothing is NOT safe’.
In September 2024 on World Patient Patient Safety Day, we wrote to The Secretary of State for Health, a letter signed by >250 healthcare professionals stating ‘Doing nothing is NOT safe’.
A mother of four trapped in a “living death sentence” after #LongCovid ruined her life says she had hoped plans to legalise assisted dying in the UK would help her, but as they won’t, she is determined to end her life in Switzerland.
inews.co.uk/news/health/...
@longcovidsupport.bsky.social 😢
inews.co.uk/news/health/...
@longcovidsupport.bsky.social 😢
'Long Covid has trapped me in a living hell and not wanting to live anymore'
Kelly Smith-May, 40, is bedridden after becoming seriously ill following Covid. The mum-of-four has made the heartbreaking decision to end her life in Switzerland
inews.co.uk
February 15, 2025 at 9:17 AM
We URGENTLY need to provide help to the most severely affected with #LongCovid and #ME
In September 2024 on World Patient Patient Safety Day, we wrote to The Secretary of State for Health, a letter signed by >250 healthcare professionals stating ‘Doing nothing is NOT safe’.
In September 2024 on World Patient Patient Safety Day, we wrote to The Secretary of State for Health, a letter signed by >250 healthcare professionals stating ‘Doing nothing is NOT safe’.