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Helen Goss

@helen-goss

COO & Scotland @longcovidkids โค๏ธโ€๐Ÿ”ฅParent/carer #LongCovidKids ๐Ÿค˜๐ŸผAdvocate #LongCovid ๐Ÿ˜ปx5 ๐ŸชSpace nerd ๐ŸŒช๏ธChronically persistent force of nature

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12.11.2024
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Latest posts by Helen Goss @helen-goss

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Email your MSP about Long Covid Awareness Day in Scotland

#Scotland
Link to contact MSP's at Holyrood here: longcovidkids.eaction.org.uk/awarenessday...

@helen-goss.bsky.social @longcovidscot.bsky.social
@longcovidsupport.bsky.social @longcovidphysio.bsky.social @longcovidsos.bsky.social

#LongCovidAwareness

02.03.2026 08:04 ๐Ÿ‘ 6 ๐Ÿ” 5 ๐Ÿ’ฌ 2 ๐Ÿ“Œ 0

Anna's powerful #artwork made us all weep when we first saw it.
I support @helen-goss.bsky.social request to the Scottish Health Sec. Children too sick to attend #education are loosing their childhood behind closed doors, the devastating situation must be seen - CYP need support now.
#Childhood

05.10.2025 12:47 ๐Ÿ‘ 3 ๐Ÿ” 2 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0
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Long Covid Carer Burnout, But Make It Bureaucratic! If I had a pound for every time a system failed us, I could fund all long covid research and cure it immediately.

Thx @helen-goss.bsky.social
for sharing this very vulnerable & utterly exhausting reality of being a caregiver while battling your own health issues & the incompetence of the healthcare system (and others):

helenmmgoss.substack.com/p/long-covid...

@coopspeak.bsky.social @theresisters.bsky.social

21.06.2025 19:07 ๐Ÿ‘ 2 ๐Ÿ” 2 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0

@georgemonbiot.bsky.social definitely worth a read. Quite the scandal North of the wall ๐Ÿด๓ ง๓ ข๓ ณ๓ ฃ๓ ด๓ ฟ๐Ÿ™๐Ÿผ

06.01.2025 20:34 ๐Ÿ‘ 4 ๐Ÿ” 2 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0
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Four years on from the pandemic and long Covidโ€™s inequalities have only worsened Fatigue, cognitive difficulties, and breathlessness are still a daily reality for many. It is particularly acute in poorer communities

Outstanding piece on Long Covid in the UK. Since we know vaccination reduces the risk of developing Long Covid, the UK government really should be massively widening access to vaccines.

www.telegraph.co.uk/global-healt...

28.11.2024 11:03 ๐Ÿ‘ 184 ๐Ÿ” 57 ๐Ÿ’ฌ 4 ๐Ÿ“Œ 2
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Sigh.

www.reddit.com/r/UKParentin...
#covid19 #longcovid #longcovidkids #winter #illness #cleantheair

27.11.2024 14:06 ๐Ÿ‘ 3 ๐Ÿ” 1 ๐Ÿ’ฌ 1 ๐Ÿ“Œ 0
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this was the beginning of my slides on how and why we provide off label therapies to the most severe patients with #longcovid

before providing my filled one, would love to know
- what you do
- what you would like to do
- as patients, what would you like to receive

21.11.2024 12:07 ๐Ÿ‘ 12 ๐Ÿ” 3 ๐Ÿ’ฌ 3 ๐Ÿ“Œ 0
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Long Fatigue: The exhaustion that lingers after an infection Before long Covid there was post-viral fatigue โ€“ a mysterious set of illnesses caused by other infections. Now scientists are starting to unravel its secrets.

"Prof @putrinolab.bsky.social , Mount Sinai, believes that there are at least 10 different plausible explanations for why people develop #PEM, ranging from sleep disruption to hormonal impairments & inflammation of the lining of blood vessels"
www.bbc.com/future/artic...
#LongCovid #LongCovidKids

20.11.2024 17:49 ๐Ÿ‘ 30 ๐Ÿ” 11 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 2

Feels like a good time for a thread about all things exercise for people living with infection (and exposure)-associated complex chronic illnesses (IACCs) such as #MECFS, #LongCOVID and chronic #Lyme /tick- and vector-borne illness. Letโ€™s start with a trip down memory lane.
1/

20.11.2024 11:27 ๐Ÿ‘ 670 ๐Ÿ” 281 ๐Ÿ’ฌ 67 ๐Ÿ“Œ 59
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Long Fatigue: The exhaustion that lingers after an infection Before long Covid there was post-viral fatigue โ€“ a mysterious set of illnesses caused by other infections. Now scientists are starting to unravel its secrets.

A really excellent article on post viral fatigue, though I see 2 errors:
1. There is no uncertainty that SARS-CoV-2 causes mircoclots.
2. "pacing" is defined as = graded exercise therapy. Its not, & confusing them is harmful.

#ME #CFS #MECFS #IACC #LongCovid #LongLyme

www.bbc.com/future/artic...

21.11.2024 00:36 ๐Ÿ‘ 54 ๐Ÿ” 15 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0
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Best thing about Scottish winter is seeing the gritter map back in action!
traffic.gov.scot/gritter-tracker

No one can be annoyed at being stuck behind "You're a Blizzard, Harry" or "Spready Mercury" ๐Ÿ˜‚

Gritter names: google.com/amp/s/www.huffโ€ฆ

#scotland #winter #snow #uksnow

21.11.2024 01:08 ๐Ÿ‘ 11 ๐Ÿ” 8 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0
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The EM images of microclots from @resiapretorius.bsky.social group are something else.

15.11.2024 09:06 ๐Ÿ‘ 174 ๐Ÿ” 59 ๐Ÿ’ฌ 6 ๐Ÿ“Œ 3
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Working in the Long Covid/ME space in the UK is a lonely place.
As I reflect in taxi home on the last 48 hrs, I donโ€™t regret a single moment. I genuinely believe that the group of people I was with yesterday can change the world for kids with these illnesses. Thereโ€™s power in global collaboration.

16.11.2024 18:08 ๐Ÿ‘ 265 ๐Ÿ” 31 ๐Ÿ’ฌ 15 ๐Ÿ“Œ 3
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Light dusting of snow. First of the season ๐ŸŒจ๏ธโ„๏ธโ˜ƒ๏ธ
#Aberdeenshire #snow #winter

17.11.2024 22:16 ๐Ÿ‘ 3 ๐Ÿ” 0 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0

This was not on my Christmas list.
#H5N1

17.11.2024 01:38 ๐Ÿ‘ 1 ๐Ÿ” 0 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0
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First Bluesky Post!! ๐Ÿคฉ

Couldnโ€™t resist a photo with the #longcovid research heroโ€™s at @buonsenso.bsky.social โ€˜s international meeting on Long COVID in Rome ๐Ÿ‡ฎ๐Ÿ‡น

Excited to engage in discussions on #research and #collaboration

15.11.2024 10:09 ๐Ÿ‘ 180 ๐Ÿ” 26 ๐Ÿ’ฌ 4 ๐Ÿ“Œ 6

So proud of @sammiemc.bsky.social flying the LCK flag ๐Ÿฅน Well done and thank you for the monumental effort ๐Ÿ‘๐Ÿผ๐ŸŽ‰๐Ÿ‘๐Ÿผ
#LongCovidKids #LongCovid

15.11.2024 22:51 ๐Ÿ‘ 8 ๐Ÿ” 2 ๐Ÿ’ฌ 1 ๐Ÿ“Œ 0
x.com

Turns out BlueSky can only handle 60sec videos and I can't spend the day splitting vids in halves and thirds...

Sadly, Twitter wins on this occasion.

To see the Full thread with full videos on the UK Covid Inquiry #LongCovid #longCovidKids testimony by Caroline Lamb: x.com/LCKScotland/...

15.11.2024 13:43 ๐Ÿ‘ 1 ๐Ÿ” 0 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0
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15.11.2024 13:41 ๐Ÿ‘ 1 ๐Ÿ” 0 ๐Ÿ’ฌ 1 ๐Ÿ“Œ 0
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3. The centrally-funded provision of #LongCovid services in Scotland was left to the discretion of health boards for the first 18 months therefore there was variation in access and quality.

Was this the best approach?

15.11.2024 13:40 ๐Ÿ‘ 0 ๐Ÿ” 0 ๐Ÿ’ฌ 1 ๐Ÿ“Œ 0
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15.11.2024 13:36 ๐Ÿ‘ 0 ๐Ÿ” 0 ๐Ÿ’ฌ 1 ๐Ÿ“Œ 0
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2. July 2021 the Scottish Government instructed NSS to conduct a mapping exercise to discover how health boards were supporting people with #LongCovid

Q: Why did it take so long?
A: It followed the creation of the guidance.

๐Ÿ‘‰ The guidance was 19 pages. Only 250 words was #LongCovidKids

15.11.2024 13:35 ๐Ÿ‘ 0 ๐Ÿ” 0 ๐Ÿ’ฌ 1 ๐Ÿ“Œ 0
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A catch up thread on the UK Covid Inquiry as relates to #LongCovid & #LongCovidKids in Scotland.

Yesterday, Caroline Lamb, NHS Scotland and Director General of Health and Social Care gave testimony.

Thread...

1. Scottish Government funding ยฃ2.5m for Long Covid (no paed research)

15.11.2024 13:30 ๐Ÿ‘ 2 ๐Ÿ” 1 ๐Ÿ’ฌ 1 ๐Ÿ“Œ 0

โ€œThe evidence suggests the more times you get Covid, the higher the chance there is of you getting long Covid.โ€ @drclairetaylor.bsky.social

The number of adults in the UK with #longCovid was estimated to be around 2 million in 2022.

But in 2024, there was a rise of 300,000, with long Covid.

14.11.2024 18:54 ๐Ÿ‘ 23 ๐Ÿ” 11 ๐Ÿ’ฌ 1 ๐Ÿ“Œ 0

So difficult for you. She's very busy, sadly. As the Scottish government's response to long Covid has been so poor, Dr T has an enormous case load and so successful at what she does, everyone wants to see her.

Suggest engaging your MSP and local healthboard to push for improved NHS services?

15.11.2024 11:27 ๐Ÿ‘ 0 ๐Ÿ” 0 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0

I can personally confirm Dr Taylor is amazing! Wish we could clone her or put her in charge of NHS ME/LC/PoTS care.

14.11.2024 19:44 ๐Ÿ‘ 4 ๐Ÿ” 3 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0
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If you have become invalid, validate yourself ๐ŸŽ‰

If only life was that simple ๐Ÿ˜…
#invalidhandle

14.11.2024 18:42 ๐Ÿ‘ 2 ๐Ÿ” 0 ๐Ÿ’ฌ 1 ๐Ÿ“Œ 0
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Meet the Perthshire GP long Covid sufferers turn to when no one else can help Dr Claire Taylor - who set up Scotland's first private long Covid clinic in 2022 - gets around 300 emails from people asking for appointments each week.

Dr Taylor estimates she has seen around 2000 people and is now receiving around 300 messages a week looking for care.

www.thecourier.co.uk/fp/lifestyle...

Meet the Perthshire GP long Covid sufferers turn to when no one else can helpโ€ฆ

@drclairetaylor.bsky.social
#longcovid #longcovidkids

14.11.2024 10:42 ๐Ÿ‘ 88 ๐Ÿ” 27 ๐Ÿ’ฌ 9 ๐Ÿ“Œ 4

Pretty sure you book online but she's full until about February, I think. Speaks volumes of the Scottish Government response to long Covid when the one person treating patients is overwhelmed with them ๐Ÿ˜”

14.11.2024 12:11 ๐Ÿ‘ 2 ๐Ÿ” 0 ๐Ÿ’ฌ 1 ๐Ÿ“Œ 0

Reply to the post you want to save with the ๐Ÿ“Œ emoji and follow this feed: bsky.app/profile/did:...

All of your "pinned" posts will be saved there ๐Ÿ˜Š

10.11.2024 17:58 ๐Ÿ‘ 128 ๐Ÿ” 40 ๐Ÿ’ฌ 44 ๐Ÿ“Œ 27