Long Covid Scotland
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longcovidscot.bsky.social
Long Covid Scotland
@longcovidscot.bsky.social
170 followers 19 following 64 posts
Long Covid Scotland is a charity & action group led by & advocating for people living with Long Covid.

https://www.longcovid.scot
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longcovidscot.bsky.social
🧼 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.
October 10, 2025 at 12:20 PM
longcovidscot.bsky.social
🚗 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.
October 9, 2025 at 6:27 PM
longcovidscot.bsky.social
🛒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.
October 8, 2025 at 9:11 AM
longcovidscot.bsky.social
🧹 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.
October 7, 2025 at 7:54 AM
longcovidscot.bsky.social
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
October 6, 2025 at 3:59 PM
longcovidscot.bsky.social
📊 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.
October 5, 2025 at 11:29 AM
longcovidscot.bsky.social
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.
October 4, 2025 at 10:53 AM
longcovidscot.bsky.social
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
September 26, 2025 at 3:13 PM
longcovidscot.bsky.social
📣 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...
July 10, 2025 at 7:06 PM
longcovidscot.bsky.social
🧠💥 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
June 30, 2025 at 5:21 PM
longcovidscot.bsky.social
🧠💥 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
June 30, 2025 at 5:21 PM
longcovidscot.bsky.social
🫶 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"
June 5, 2025 at 8:36 AM
longcovidscot.bsky.social
Want to donate AND raise awareness of Long Covid in Scotland?
With every Shirt Purchase from our store £3.75 is donated to Long Covid Scotland. 

longcovidscotland.shop/prod...
Chap with a beard in a long covid scotland t-shirt
June 2, 2025 at 1:32 PM
longcovidscot.bsky.social
 🗣️ Living with #LongCovid in Scotland? The govt wants your views on long-term conditions — but the consultation is hard to navigate.
We’ve made a simple guide to help you speak up and be heard. Your voice matters.
📥 Download here: 
drive.google.com/file/d/17v...
 
May 14, 2025 at 8:03 PM
longcovidscot.bsky.social
There's no cure for #LongCovid - but there are various things that help various symptoms. Good luck getting fair and easy access to them in Scotland tho. We deserve straight answers! #LongCovid #ChronicIllness
An ostrich with it's head in the same. The headline reads "Politicians when asked any question about treatments for Long Covid Patients"
March 31, 2025 at 5:28 PM
longcovidscot.bsky.social
IT. SHOULDN’T. BE. THIS. HARD. 😡
There’s no magic bullet for #LongCovid, but there ARE things that help—yet thousands are losing out due to a postcode lottery of care.

🚨 Are you getting the care you need?
#LongCovidScotland #SNHS #PostcodeLottery #InvisibleIllness #HealthcareCrisis #DoBetter
Two panel meme. Top panel is a book that say "List of easily accessible treatments for Long Covid Patients" , bottom panel is headlined "Every Scottish Long Covid Patient" and shows the cartoon cat Tom from Tom & jerry looking at the book with a red angry face!
March 24, 2025 at 4:30 PM
longcovidscot.bsky.social
📣Later this year The Scottish Government is running a public consultation on Long Covid.
This is your chance to be heard.
👉 Read our short article to find out why this matters and how to respond once it's live.
#LongCovidScotland #LongCovid
www.longcovid.scot/blog/pub...
Graphic promoting Long Covid Scotland’s public consultation response campaign. The background features overlapping cut-out silhouettes of people in pastel colours, some with virus-like symbols. Bold white text reads: “Why It's Important You Respond To The Public Consultation.” Smaller text at the bottom says: “Your voice matters. Read our article to find out why, and how, to respond.”
March 22, 2025 at 8:43 PM
longcovidscot.bsky.social
💙Coming up to 'LongCovidAwareness day this Saturday, We are sharing this on behalf of another group who are looking for #Volunteers in #Edinburgh
March 11, 2025 at 6:11 PM
longcovidscot.bsky.social
These have just been some ideas - we'd love to hear any you have too.

We are the 100% volunteer grass-roots Long Covid charity in Scotland, and everything we do is down to our volunteers, so THANK YOU! ❤️❤️❤️

(8/end)
A digital graphic with a dark blue background. At the top, five battery icons represent different energy levels, ranging from nearly empty (red) to fully charged (green). Below, bold white text reads: "THANK YOU!". The text explains that these are just some ideas for supporting Long Covid Scotland at different energy levels. It reassures volunteers that training and support are available for many of these roles and invites people to share their expertise and ideas. The final line, in bold white text, encourages engagement: "Comment Below to Let Us Know!".
March 4, 2025 at 4:36 PM
longcovidscot.bsky.social
These are unicorn days, but sometimes our volunteers push the boat out, even knowing it might cost them later.

But only having a strong visible presence at events and protests keeps us front of mind of politicians and media.
(7/n)
**Alt Text:** A digital graphic with a dark blue background. At the top, five battery icons indicate different energy levels, with the fifth battery (fully green) completely filled. Below, bold green and white text reads: **"BEST ENERGY"** and **"VOLUNTEERING IDEAS..."**. The text explains that these activities require a high energy level and may need recovery time, so they are not for everyone but are sometimes necessary. A bulleted list includes: - Helping to organise and attend an event, such as at Parliament - Visiting an MSP’s surgery to ask questions - Researching and writing briefings for journalists and politicians at events - Training volunteers in a skill they are experienced in The layout is clear and structured, with an emphasis on high-energy engagement opportunities.
March 4, 2025 at 4:36 PM
longcovidscot.bsky.social
Some of our volunteers might be carers, or recovered a bit, or fatigue isn't their main symptom.

There's so many possible ways that you can help on a 'good energy' day - but we appreciate they are precious!

(6/n)
**Alt Text:** A digital graphic with a dark blue background. At the top, five battery icons indicate different energy levels, with the fourth battery (green) mostly filled. Below, bold green and white text reads: **"GOOD ENERGY"** and **"VOLUNTEERING IDEAS..."**. The text provides suggestions for those who have a higher energy level and want to contribute more. A bulleted list includes: - Finding new Long Covid academic research and summarising it for social media - Writing funding applications (with training and support) - Taking minutes at meetings - Designing items for the fundraising shop - Giving an interview to a journalist about personal experiences - Creating social media designs, videos, or marketing content The layout is structured and easy to read, with clear, actionable suggestions.
March 4, 2025 at 4:36 PM
longcovidscot.bsky.social
This is where a lot of people are, most of the time.

It's important not to overdo it, but we are 100% volunteer run.

All charity admin from data entry, to minutes and social media and lobbying Parliament is done by Groups of our volunteers working together.

(5/n)
**Alt Text:** A digital graphic with a dark blue background. At the top, five battery icons indicate different energy levels, with the third battery (yellow) partially filled. Below, bold yellow and white text reads: **"MEDIUM ENERGY"** and **"VOLUNTEERING IDEAS..."**. The text acknowledges that medium energy can be a good day for someone with Long Covid and suggests ways to contribute depending on skillset. A bulleted list includes: - Helping with charity admin (finances, membership, AGMs) - Coordinating volunteers and members - Finding and assessing grant opportunities - Drafting lobbying letters to MSPs and MPs - Reviewing Freedom of Information responses for useful insights The design maintains a structured, accessible layout, with key points clearly highlighted.
March 4, 2025 at 4:36 PM
longcovidscot.bsky.social
Got a little bit of energy?

Small things online add up - even just liking, sharing and commenting on a post, or sending a kind thought 🤗🫂 to someone else in the community.

All these help raise awareness.
(4/n)
**Alt Text:** A digital graphic with a dark blue background. At the top, five battery icons indicate different energy levels, with the second battery (yellow) partially filled. Below, bold yellow and white text reads: **"A LITTLE ENERGY"** and **"VOLUNTEERING IDEAS..."**. The text explains that engaging with Long Covid Scotland online can help raise awareness and boost morale. A bulleted list suggests low-energy ways to contribute, including: - Liking, sharing, and commenting on Long Covid posts - Signing a relevant petition - Using a template to email an MSP/MP - Sharing a Long Covid news story in a group - Sending a virtual hug to someone in the community On the lower left, an illustrated hand holds a smartphone with a thumbs-up symbol, surrounded by floating social media icons like a heart and a speech bubble.
March 4, 2025 at 4:36 PM
longcovidscot.bsky.social
If you are having a crash or a flare-up

𝗗𝗢 𝗡𝗢𝗧𝗛𝗜𝗡𝗚

Look after yourself first before volunteering. Everyone at Long Covid Scotland will understand completely.

You can't help others by making yourself worse.

(3/n)
**Alt Text:** A digital graphic with a dark blue background. At the top, five battery icons illustrate different energy levels, with the first battery nearly empty and the last fully charged. Below, bold orange and white text reads: **"NO ENERGY / FATIGUED"** and **"VOLUNTEERING IDEAS..."** followed by **"PLEASE DO NOTHING!"** in large, bold orange letters. To the right, there is a smiling emoji hugging a red heart. Below, smaller white text reassures the reader: *"We get it! It’s frustrating, but when you are severely fatigued, you can’t even do the minimum for yourself. You can’t be expected to help others. We are first and foremost here to support people with Long Covid. Rest as much as you can, and don’t try to push yourself."*
March 4, 2025 at 4:36 PM
longcovidscot.bsky.social
𝙔𝙤𝙪’𝙧𝙚 𝙣𝙤𝙩 𝙖𝙡𝙤𝙣𝙚.

All our volunteers and supporters needed to start somewhere, but are worried about overcommitting, or letting people down, or just aren't sure how they could help.

A lot of it depends on your level of energy, which can fluctuate.
(2/n)
WANT TO HELP BUT WORRIED? A person has a thought bubble and lots of concerns about volunteering- what should they do? WHat if they have a flare up - we will give them some ideas to reassure them.
March 4, 2025 at 4:36 PM