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Long Covid Scotland

@longcovidscot.bsky.social
200 followers 25 following 81 posts

Long Covid Scotland is a charity & action group led by & advocating for people living with Long Covid. www.longcovid.scot

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Reposted by Long Covid Scotland
Janet Scott @drjanetscott.bsky.social · 16/09/2026
Our NHS Highland patient guide to completing a 10-minute lean test at home 👇 www.nhshighland.scot.nhs.uk/media/fejd3s...
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Long Covid Scotland @longcovidscot.bsky.social · 24/09/2026
www.theguardian.com/commentisfre... A powerful piece by George Monbiot on the neglect and dismissal experienced by people with ME/CFS — one that explicitly recognises the connection with Long Covid. The same failures of recognition, appropriate care and clinical understanding. We must do better.
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Long Covid Scotland @longcovidscot.bsky.social · 16/09/2026
We hope we will see today’s commitments from Ministers delivered through the new Long Term Conditions Framework. We need condition-specific care, backed by clear clinical leadership and accountability. @angelaconstance.bsky.social @johnswinney.bsky.social @mareetodd.bsky.social
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Reposted by Long Covid Scotland
Prof Nisreen Alwan @nisreenalwan.bsky.social · 07/09/2026
We are inviting adults in the UK with lived experience of #LongCovid to be interviewed for a study exploring the role of local environment – please see our flyer for further details. Please share :)
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Reposted by Long Covid Scotland
ME Association @meassociation.org.uk · 08/09/2026
Janet Sylvester from ME Action Scotland and Long Covid Scotland‘s Stuart McIver and Jane Ormerod contributed to an evidence gathering meeting at Holyrood - you can watch the clip compiled by Adam (AKA @BrokenBattery) on YouTube and read more on the blog: meassociation.org.uk/qjsh #MECFS
meassociation.org.uk
#MEAction Scotland give evidence to the Health, Care and Sport Committee at Holyrood - The ME Association
#MEAction Scotland and Long Covid Scotland gave evidence at a committee meeting in Holyrood, the Scottish Parliament.
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Long Covid Scotland @longcovidscot.bsky.social · 08/09/2026
An update for our members as Long Covid Support today changes to Long Covid UK. We hope this answers any questions our shared members might have. Long Covid Scotland is the only organisation dedicated specifically to advocating for people living with Long Covid across Scotland and remains so.
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Reposted by Long Covid Scotland
Rod McMillan 🍉 🇸🇩 🇺🇦 📚 @morewretchthansage.bsky.social · 15/08/2026
⏩ Gift Article As a #LongCovid carer, and volunteer with @longcovidscot.bsky.social It would be great of more people understood the reality of PEM and fatigue www.theatlantic.com/health/archi...
theatlantic.com
Fatigue Can Shatter a Person
Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience.
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Long Covid Scotland @longcovidscot.bsky.social · 08/07/2026
New medical education resources for GPs. Learn more about ME, Long Covid, PoTS & related conditions. 🎧 Podcast: mecfs.buzzsprout.com 📚 Free CPD module: www.studyprn.com/p/chronic-fa... Developed by Action for ME with: ME Association & MEAction Scotland, funded by Scottish Government.
mecfs.buzzsprout.com
Learn about ME
This series of podcast episodes complement the CPD accredited module on Myalgic Encephalomyelitis (ME/ Chronic Fatigue Syndrome (CFS), originally developed by Dr Nina Muirhead with the UK ME Research ...
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Long Covid Scotland @longcovidscot.bsky.social · 08/07/2026
📢 New resources for GPs and healthcare professionals about ME, Long Covid, PoTS & related conditions. 🎧 Podcast: mecfs.buzzsprout.com Free CPD module: studyprn.com/p/chronic-fa... By Action for ME with ME Association & MEAction Scotland — funded by Scottish Government @actionforme.bsky.social
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Long Covid Scotland @longcovidscot.bsky.social · 29/05/2026
𝗟𝗼𝗻𝗴 𝗖𝗼𝘃𝗶𝗱 𝗦𝗰𝗼𝘁𝗹𝗮𝗻𝗱: 𝟮𝟬𝟮𝟲 𝗖𝗮𝗿𝗲 & 𝗦𝘂𝗽𝗽𝗼𝗿𝘁 𝗦𝘂𝗿𝘃𝗲𝘆 📢 We need to hear from people living with Long Covid across Scotland about your experiences. Open to age 16+ Your experience will help us drive change. docs.google.com/forms/d/e/1...
docs.google.com
Long Covid Scotland: Experiences of Care & Support Survey
Thank you for taking the time to complete this survey. Long Covid Scotland is gathering information about people’s experiences of Long Covid care, support, services and pathways across Scotland. We know experiences can vary significantly between Heal
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Long Covid Scotland @longcovidscot.bsky.social · 25/05/2026
Long Covid Scotland: 2026 Care & Support Survey We need to hear from people living with Long Covid across Scotland about experiences of care, support, and healthcare Your responses will help us understand what’s working for you, what isn’t & what needs to change. docs.google.com/forms/d/e/1F...
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Long Covid Scotland @longcovidscot.bsky.social · 21/05/2026
Today we congratulate @mareetodd.bsky.social on her Public Health appointment and look forward to engaging to strengthen and build on support and policy responses within Long Term Conditions work for all people living with Long Covid in Scotland.
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Long Covid Scotland @longcovidscot.bsky.social · 20/05/2026
@AConstance23 @scotgovhealth We congratulate Angela Constance on her appointment as Cabinet Secretary for Health and look forward to engaging to strengthen and build on support & policy responses under Long Term Conditions work for all people living with Long Covid in Scotland.
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Reposted by Long Covid Scotland
Action for ME @actionforme.bsky.social · 18/05/2026
📢 Join the PRIME ME/CFS Research Involvement Hub! Today, PRIME have launched their new ME/CFS Research Involvement Hub which aims to build a virtual network of people with lived experience of ME and match them with research projects to help shape the delivery of those projects.
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Long Covid Scotland @longcovidscot.bsky.social · 14/05/2026
COVID-19 didn't end for Thousands. The Inquiry heard from adults and representatives of children about living with long COVID – including Long Covid Scotland, about and the challenges faced by a lack of understanding. Read the full Narrative Record: www.covid19inquiry.scot/report/narra...
covid19inquiry.scot
Narrative Record: Health and Social Care Impact Hearings | Scottish COVID-19 Inquiry
A summary of evidence heard from 156 witnesses. Key topics include grief and bereavement, mental health, personal protective equipment, guidance, vaccines, staffing and pre-pandemic planning.
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Reposted by Long Covid Scotland
Action for ME @actionforme.bsky.social · 12/05/2026
🧬Join our Sequence ME & Long Covid Webinar Following the announcement of major funding (£4.75 million) from the UK Government, join our webinar to find out more about what this means for the study, and what happens next. 📅 26 May, 14:30-15:30pm GMT 📍 Register here: us02web.zoom.us/webinar/regi...
Graphic promoting the “Sequence ME & Long Covid Webinar” from Action for ME. The image includes webinar details for Tuesday 26 May, 14:30–15:30, alongside a blue-toned DNA illustration and Action for ME branding.
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Reposted by Long Covid Scotland
Neurological Alliance of Scotland @neuroalscotland.bsky.social · 13/05/2026
This #MentalHealthAwarenessWeek we're sharing resources to support you, or a loved one, to look after your mental health. Our mental health directory lists general and condition specific support, as well as support for carers, provided by our member charities 👉 bit.ly/4dFDTuL
infographic of text and image. Image of two hands holding each other. Text says - mental health resources, condition specific support. #MentalHealthAwarenessWeek #DontAssumeImOk
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Long Covid Scotland @longcovidscot.bsky.social · 12/05/2026
Today on International ME Awareness Day, we’re calling for better recognition, research and services for people living with ME and Long Covid in Scotland. With £4.5m now allocated by The Scottish Government, the focus must now be on full accountability and delivering real change for patients.
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Long Covid Scotland @longcovidscot.bsky.social · 06/04/2026
Long Covid Scotland is seeking a new Trustee to support the leadership of a national charity advocating for people living with Long Covid. Find out more and apply here: longcovid.scot/blog/how-to-...
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Long Covid Scotland @longcovidscot.bsky.social · 15/03/2026
"Advocates for the tens of thousands of Scots with Long COVID continue to experience huge gaps in care and support depending on where they live." Read More Here - healthandcare.scot/mobile_d...
healthandcare.scot
Plea for renewed focus on Long COVID
Advocates for the tens of thousands of Scots living with Long COVID say they are continuing to experience huge gaps in care and support depending on where they live. It comes on the day that a number of Scottish landmarks are being lit up
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Long Covid Scotland @longcovidscot.bsky.social · 15/03/2026
Landmarks across Scotland are lighting up teal for #LongCovidAwareness - but is Scotland doing enough? ( Spoiler Alert - No, nowhere near) Read this update to find out what's happened, why it matters, and what we can do about it together #LongCovid www.longcovid.scot/blog/upd...
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Long Covid Scotland @longcovidscot.bsky.social · 02/03/2026
Our 2026 Manifesto sets out what must change on Long Covid diagnosis, care, jobs, public health & support Help us act: ✅ Share our posts ✅ Raise it with politicians ✅ Volunteer International Long Covid Awareness Day is 15 March #LongCovid #LongCovidScotland
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Long Covid Scotland @longcovidscot.bsky.social · 28/01/2026
We want to share an important update on the Scottish Government’s Long Term Conditions Framework, which was intended to shape future policy for long-term conditions — including Long Covid. www.longcovid.scot/blog/upd...
longcovid.scot
Update: Long Term Conditions Framework — Long Covid Scotland
Update: Long Term Conditions Framework – what’s happening now (and why this matters for Long Covid) We want to share an important update on the Scottish Government’s Long Term Conditions Framework , which was intended to shape future policy for lon
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Long Covid Scotland @longcovidscot.bsky.social · 28/01/2026
We want to share an important update on the Scottish Government’s Long Term Conditions Framework, which was intended to shape future policy for long-term conditions — including Long Covid. www.longcovid.scot/blog/upd...
longcovid.scot
Update: Long Term Conditions Framework — Long Covid Scotland
Update: Long Term Conditions Framework – what’s happening now (and why this matters for Long Covid) We want to share an important update on the Scottish Government’s Long Term Conditions Framework , which was intended to shape future policy for lon
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Long Covid Scotland @longcovidscot.bsky.social · 21/11/2025
"Long Covid Scotland stands ready to work with government and partners but the next move must come with real, measurable change." Long Covid Scotland responds to the inquiry report and calls for real action, not just acknowledgement. www.longcovid.scot/blog/sta...
longcovid.scot
Statement on UK Covid-19 Inquiry Findings - Long Covid Scotland — Long Covid Scotland
Long Covid Scotland welcomes yesterdays inquiry report, which confirms what so many already knew: the UK and Scottish Governments’ early pandemic response was “too little, too late.” These failures did not just cost lives, they created a long-term wa
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Long Covid Scotland @longcovidscot.bsky.social · 10/10/2025
🧼 63% of Scots with #LongCovid need help with personal care - things like washing, dressing, or cooking a meal. Yet funding is now just £9.70 per patient per year People are left without dignity or support. #LongCovidScotland #Disability #ChronicIllness #Scotland
Infographic titled The Financial Impact of Long Covid in Scotland. It shows that 63% of Scots with Long Covid need help with personal care. The image includes an icon of hands being washed and states that Scottish Government funding for Long Covid is only £9.70 per patient per year. Produced by Long Covid Scotland.
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Long Covid Scotland @longcovidscot.bsky.social · 09/10/2025
🚗 64% of Scots with #LongCovid need help with travel and transport. People can’t drive or even leave home yet government funding is just £9.70 per patient per year. That’s not mobility. That’s abandonment. #LongCovidScotland #Disability #ChronicIllness #Scotland
Infographic titled The Financial Impact of Long Covid in Scotland. It shows that 64% of Scots with Long Covid need help with travel and transport. The image features icons of a wheelchair user and a bus, with text noting that Scottish Government funding is only £9.70 per patient per year. Produced by Long Covid Scotland.
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Long Covid Scotland @longcovidscot.bsky.social · 08/10/2025
🛒𝟴𝟮%of Scots with #LongCovid told us they need help with shopping. People are struggling with basic tasks but government funding is now just £𝟵.𝟳𝟬 per patient per year. We're telling That isn't enough. #LongCovidScotland #Disability #ChronicIllness #Scotland
Infographic titled The Financial Impact of Long Covid in Scotland. It shows that 82% of Scots with Long Covid need help with shopping. The graphic includes a yellow shopping trolley icon and text noting that Scottish Government funding for Long Covid is only £9.70 per patient per year. Produced by Long Covid Scotland.
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Long Covid Scotland @longcovidscot.bsky.social · 07/10/2025
🧹 89% of Scots with #LongCovid need help with household chores. Many can’t cook, clean, launder without support yet funding is just £9.70 per patient per year?! Hey ScotGov That’s not care. That’s neglect. #LongCovidScotland #Disability #ChronicIllness #Scotland
Infographic titled The Financial Impact of Long Covid in Scotland. It shows that 89% of Scots with Long Covid need help with household chores. The graphic includes a yellow spray bottle icon and notes that Scottish Government funding is only £9.70 per patient per year. Produced by Long Covid Scotland.
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Long Covid Scotland @longcovidscot.bsky.social · 06/10/2025
In Scotland, the disabled pay TWICE 🏥 84% of Scots with #LongCovid pay for supplements. 59% for alternative therapies. 41% for private appointments. ...Because Scottish Government funding is only £9.70 per patient per year #LongCovidScotland #ChronicIllness #Disability #Scotland
Infographic titled The Financial Impact of Long Covid in Scotland. It shows that many Scots with Long Covid are paying privately for treatment, with bar chart data indicating high spending on supplements (84%), alternative therapies (59%), medication, and private health appointments. The text notes that Scottish Government funding is only £9.70 per patient per year. Includes the Long Covid Scotlan
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Long Covid Scotland @longcovidscot.bsky.social · 05/10/2025
📊 4 in 10 Scots with #LongCovid told us they can’t work at all. Another 2 in 10 are forced to cut their hours. Meanwhile, Scottish Government funding is just £9.70 per patient per year. People are losing livelihoods while support lags behind. #LongCovidScotland #Disability #Scotland
Infographic titled The Financial Impact of Long Covid in Scotland. A pie chart shows that 4 out of 10 Scots with Long Covid (37.7%) are unable to work, while 21.3% work fewer hours. The text highlights that Scottish Government funding for Long Covid is only £9.70 per patient per year. Includes the Long Covid Scotland logo and data sources from the 2025 Long Covid Scotland Survey.
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Long Covid Scotland @longcovidscot.bsky.social · 04/10/2025
Scots disabled by #LongCovid have lost over £50,000 in earnings on average. Scottish Government funding? Just £9.70 per patient per year. People are paying the price — not the government. #LongCovidScotland #ChronicIllness #Scotland #MECFS
Infographic titled The Financial Impact of Long Covid in Scotland. It shows that Scots disabled by Long Covid have lost over £50,000 in earnings on average, while Scottish Government funding is only £9.70 per patient per year. Includes the Long Covid Scotland logo and a note citing survey data and government reports.
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Long Covid Scotland @longcovidscot.bsky.social · 28/09/2025
We see seven major problems with the recent funding announcement. Here's what you need to know. Please watch, like and share to raise awareness. Audit Scotland MUST surely now investigate? #LongCovid #MECFS #ScotGov www.youtube.com/watch?v=BtO...
youtube.com
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Long Covid Scotland @longcovidscot.bsky.social · 26/09/2025
While we welcome the Scottish Government announcement of £4.5 million recurrent #LongCovid and #MECFS funding, serious concerns remain. Patients are told money is being allocated, but there is no clarity on how it will be used. Read the full statement on our website: www.longcovid.scot/blog/res...
Dark blue graphic with text 'Response: ScotGov Funding Announcement' with a man wearing an FFP3 mask
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Long Covid Scotland @longcovidscot.bsky.social · 23/09/2025
📢 New research from Robert Gordon University and the Poverty Alliance highlights the severe financial pressures faced by people with Long COVID in Scotland. Read the full story - and let us know your experience www.rgu.ac.uk/news/news-202... #LongCovid #SocialJustice #Workplace #Scotland #Poverty
rgu.ac.uk
Long COVID, long consequences | September 2025 | News | RGU
New research from Robert Gordon University (RGU) and the Poverty Alliance highlights the severe financial pressures being faced by people with Long COVID in Scotland.
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Long Covid Scotland @longcovidscot.bsky.social · 23/09/2025
Members of The Long Covid Cuppa in Falkirk, Noreen & Suzanne are braving The Forth Bridge Abseil on 28th Sep to raise awareness of Long Covid services from Chest Heart and Stroke Scotland and The Cuppa Group: Can donate here: gofund.me/71d0cc9d1
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Long Covid Scotland @longcovidscot.bsky.social · 21/09/2025
36% of people with confirmed COVID develop Long COVID, per a mega-review of 429 studies. Higher in hospitalised patients (44%). Common issues: fatigue, respiratory and neurological problems. This is a long-term public health challenge. www.eatg.org/hiv-news/more-... #LongCovid #PublicHealth
eatg.org
More than one-third of individuals with COVID-19 experience long COVID
Long COVID remains a globally persistent condition, with a pooled prevalence of 36% worldwide, highlighting the urgent need for follow-up studies and policy responses.
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Long Covid Scotland @longcovidscot.bsky.social · 21/09/2025
36% of people with confirmed COVID develop Long COVID, per a mega-review of 429 studies. Higher in hospitalised patients (44%). Common issues: fatigue, respiratory and neurological problems. This is a long-term public health challenge. www.eatg.org/hiv-news/more-... #LongCovid #PublicHealth
eatg.org
More than one-third of individuals with COVID-19 experience long COVID
Long COVID remains a globally persistent condition, with a pooled prevalence of 36% worldwide, highlighting the urgent need for follow-up studies and policy responses.
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Long Covid Scotland @longcovidscot.bsky.social · 14/07/2025
🧠 COVID-19 Isn’t Just a Lung Disease It’s Hitting Our Brains Too. We need better mental support Dr's should screen for brain symptoms early. Long-term research and public health plan needed #LongCovid #BrainFog #CovidRecovery #MentalHealth #Neurology #NeuroCovid www.journalmbr.com.br/index...
journalmbr.com.br
Neuropsychiatric manifestations related to COVID-19 | Journal of Medical and Biosciences Research
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Long Covid Scotland @longcovidscot.bsky.social · 10/07/2025
📣 HEAR US! Long Covid Scotland has submitted our official response to the Long Term Conditions consultation. You can download it in full below. 🕒 You have until 20ᵗʰ July to submit your personal response. #LongCovid #DisabilityRights #HearUs drive.google.com/file/d/1mV...
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Long Covid Scotland @longcovidscot.bsky.social · 09/07/2025
🚨𝗧𝗵𝗲𝗿𝗲'𝘀 𝗮 𝗻𝗲𝘄 𝗖𝗢𝗩𝗜𝗗 𝘃𝗮𝗿𝗶𝗮𝗻𝘁 𝘀𝗽𝗿𝗲𝗮𝗱𝗶𝗻𝗴 𝗶𝗻 𝘁𝗵𝗲 𝗨𝗞: 𝗦𝘁𝗿𝗮𝘁𝘂𝘀 𝗫𝗙𝗚. Key symptoms: ‼️Sore Throat 🔇Hoarse Voice 😓Fatigue www.independent.co.uk/news/... #StratusXFG #LongCovid #CovidIsNotOver #HealthAlert #UKNews #LongCovidScotland
independent.co.uk
New Covid strain spreads across UK with unique symptom
The XFG and XFG.3 variants currently account for around 30 percent of Covid-19 cases in England
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Long Covid Scotland @longcovidscot.bsky.social · 08/07/2025
🧘‍♀️ Could Yoga Help People Living with Long COVID? NB: This is a survey NOT peer reviewed research, but ...maybe. 🔗 Read the full preprint: doi.org/10.21203/rs.3.rs-67... #LongCOVID #YogaForHealth #ChronicIllness #Fatigue #MentalHealth #AccessibleWellbeing #PostViralRecovery #LongCOVIDSupport
doi.org
Perceptions, acceptability and experiences of yoga to support long-COVID: A survey of people living with long-COVID
Background The impact of long-COVID can be substantial for individuals, health systems and the economy, nevertheless, treatment and support options are limited. Yoga offers a potential solution to reduce the burden of long-COVID, demonstrating positi
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Long Covid Scotland @longcovidscot.bsky.social · 03/07/2025
🧬Does the Gut Hold the Key to Long COVID and Chronic Fatigue? Researchers compared Long COVID to other fatigue & immune issues www.mdpi.com/2218-273X/15/7... #LongCovid #ChronicFatigue #GutHealth #Microbiome #PASC #PostViralFatigue #ImmuneSystem #HealthResearch #LongCovidAwareness
mdpi.com
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Long Covid Scotland @longcovidscot.bsky.social · 30/06/2025
🧠💥 Could Long COVID Be Linked to Burnout in Your Body's Stress System? Research suggests COVID affects adrenal glands, When these don't work you can stay stuck in low-energy, high-stress mode. #LongCOVID #ChronicIllness #Fatigue #BrainFog scholar.kyobobook.co.kr/art...
Screengrab of link to the research
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Long Covid Scotland @longcovidscot.bsky.social · 30/06/2025
🧠💥 Could Long COVID Be Linked to Burnout in Your Body's Stress System? Research suggests COVID affects adrenal glands, When these don't work you can stay stuck in low-energy, high-stress mode. #LongCOVID #ChronicIllness #Fatigue #BrainFog scholar.kyobobook.co.kr/art...
Screengrab of link to the research
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Long Covid Scotland @longcovidscot.bsky.social · 24/06/2025
New study: Over 1 in 3 children had Long Covid symptoms 3 months after infection. Breathing issues, sleep problems & hair loss were most common. 📌 Kids with moderate symptoms during Covid were much more likely to be affected. he02.tci-thaijo.org/index.p... #LongCovid #Covid19
he02.tci-thaijo.org
Incidence and Risk Factors of Long COVID in Children and Adolescents: A Single-Center Cohort Study in Thailand | Vajira Medical Journal : Journal of Urban Medicine
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Long Covid Scotland @longcovidscot.bsky.social · 17/06/2025
New study: Over 1 in 3 children had Long Covid symptoms 3 months after infection. Breathing issues, sleep problems & hair loss were most common. 📌 Kids with moderate symptoms during Covid were much more likely to be affected. he02.tci-thaijo.org/index.p... #LongCovid #Covid19
he02.tci-thaijo.org
Incidence and Risk Factors of Long COVID in Children and Adolescents: A Single-Center Cohort Study in Thailand | Vajira Medical Journal : Journal of Urban Medicine
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Long Covid Scotland @longcovidscot.bsky.social · 16/06/2025
“Being alive is utterly exhausting.” This Big Issue report shares how Long Covid is pushing people out of work — and into a benefits system that doesn’t understand them. 📉 2 million affected. 📢 No support, no treatment — just blame. Read & share www.bigissue.com/news/socia...
bigissue.com
Five years on: How Covid forced people out of work and onto benefits
As the government seeks to crack down on worklessness in the UK, perhaps ministers need to consider the people suffering with long-Covid.
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Long Covid Scotland @longcovidscot.bsky.social · 05/06/2025
🫶 THANK YOU TO EVERYONE WHO FILLED IN OUR SURVEY Your time, energy & concentration are so precious; we’re grateful you donated them. We’re now working with data experts to turn your answers into insights, then action.  📢 Watch this space! #LongCovid #InvisibleIllness #Fatigue #LivedExperience
Two masked people point at a sign saying "Thank you from Long Covid Scotland"
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Long Covid Scotland @longcovidscot.bsky.social · 03/06/2025
Thank you for supporting us - With every T-Shirt £3.75 is donated to Long Covid Scotland.  Printed in the UK with low waste printing tech. longcovidscotland.shop/prod...
longcovidscotland.shop
Long Covid Scotland - White Logo Navy - T Shirt - 100% Organic Cotton - LCS
Thank you for supporting us - With every T-Shirt £3.75 is donated to Long Covid Scotland.  You’ll be comfy and stylish while showing your support for...
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