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Long Covid Advocacy 💙 Profile picture
@LongCovidAdvoc
Aug 22, 2022 • 8 tweets • 7 min read • Read on X
Scrolly
📻 🧵 on #LongCovid on @BBCScotland
🎙️Super interview with @K8Stott @DeansKevin & @drclairetaylor
Points on #microclots, lack of Long Covid Clinics in Scotland, Katie's trip to Germany, need for Rapid Treatment Trials for #LongCovid
1/6
With @DeansKevin
Reassuring to hear interest in #microclot research in the UK 💙
/2
@drclairetaylor talking about her #LongCovidClinic in Scotland 🙏
Dr Taylor is an incredible #LongCovid ally (esp through her Twitter account too)
/3
@drclairetaylor on #POTS & #MCAS in #LongCovid
-we really need more awareness of these conditions so 👏
/4
YES - we really do need Rapid Treatment Trials for #LongCovid like there was for Covid
/5
Full Interview here 👇📻
/6
Here is the BBC article on @K8Stott trip to Germany.
Good luck Kate 🤞
🏴󠁧󠁢󠁳󠁣󠁴󠁿Thank you to @Fionasstalker & @BBCScotland for covering #LongCovid so well
🏴󠁧󠁢󠁳󠁣󠁴󠁿Interviewing the right experts
🏴󠁧󠁢󠁳󠁣󠁴󠁿Highlighting the fact that #pwLC in Scotland are struggling to obtain care and treatment.

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More from @LongCovidAdvoc

Long Covid Advocacy 💙 Profile picture
Jun 21
Our deep dive of the biomarker study by Ponting:

1. They clearly state it's a disease with strong female bias.

2. It's strength is that it's a large study that identifies population ave differences. 131,303 contols, 1455 ME cases
1/13
embopress.org/doi/full/10.10…
3. It took remarkable commitment as this was done in the researchers own time without funding.

4. That the effect of ME can be seen in molecular and cellular traits reinforcing that it's an ongoing organic disease. 511 blood based biomarkers were found.
/2 Image
5. The key effects are chronic inflammation, insulin resistance & liver disease.

-chronic inflammation
elevated C-reactive protein [CRP] and cystatin C levels, and leucocyte and neutrophil counts
/3 Image
Read 13 tweets
Long Covid Advocacy 💙 Profile picture
Jun 20
😎 Top cooling tips - Some of the best ways to beat the heat 🧵

🧊 Cool from the Outside
1. Cooling vests, neck wraps, gel packs, head caps
2. Feet in cool water
3. Cooling Mat
4. Freeze hot water bottles, flannels, ice bricks
5. Bamboo cooling sheets
6. Shower b4 bed
1/12
🍧Cool from the Inside
1. Suck ice cubes, frozen fruit ie grapes
2. Keep cold water in fridge, can add mint, fruit, electrolytes
3. Avoid caffiene
4. Ice popsicles, can use moulds & add juice + electrolytes
5. Stay hydrated, sip not gulp
6. Oral rehydration salts, salty snacks
/2
💨Air Flow
1. Create a cool zone
2. Portable AC
3. Evaporative air coolers
4. Cross winds when cooler
5. Personal attachable fans
6. Tech with quiet mark
7. Blow hot air out window
8. Mist room & use fan
/3
Read 12 tweets
Long Covid Advocacy 💙 Profile picture
Jun 11
We have serious concerns about the appointment of Dr Terry Segal as paediatric expert in the @covidinquiryuk
This is due to her problematic history with ME, association with BACME & present framing of #LC
🧐What does the evidence say? /1
Segal is a consultant in general paediatrics & adolescents at UCHL & co-lead of the Pan London Post Covid Service.
She is a co-author of the CLoCK study that presumed 'lockdown anxiety' & other abnormal behaviours contributed to #LC
More details 👇 /2
longcovidadvoc.com/post/is-the-gr…
She also developed the Psychoeducational materials for CYP alongside BACME mainstay Gregorowski.
These are based on PDSA - plan, do, study, act.
Which is essentially goal setting & pacing up. This is now on the kids section of 'Your Covid Recovery' app /3
researchgate.net/publication/36…
Read 19 tweets
Long Covid Advocacy 💙 Profile picture
May 12
Today is #MEAwarenessDay
🐋 Let's take a deep dive into what ME is
and
😇 Why allyship is so important
1/15 Image
2/ ME stands for myalgic encephalomyelitis: my = muscle algia = pain encephalo = brain myel = spinal cord Itis = inflammation The term first appeared in 1956 in medical literature.
3/ ME is a multi-system disease that affects the neurological, immune, endocrine and energy metabolism systems (and more). It was classified by the WHO as a neurological disease in 1969.
Read 16 tweets
Long Covid Advocacy 💙 Profile picture
Jun 26, 2024
This is the very real danger we are facing in the 🇬🇧 with clinical care.

#LC is being seen as persistent & is going to be integrated with chronic pain & other unexplainable 'persistent symptoms'. 🧵/1 Image
The problem is there's real issues in chronic pain clinical practice. It follows a problematic biopsychosocial approach of 'central sensitisation'. Which essentially means there's no 'real' physical cause. /2 Image
It's a dubious theory & often comes with significant patient trauma. With little actual investigation. It's likely alot of pain comes from mechanisms we don't yet understand that aren't on a visible level. /3 Image
Read 5 tweets
Long Covid Advocacy 💙 Profile picture
Jun 12, 2024
🌟Major Step Forward 🌟
Long Covid DEFINITION 🧵
5️⃣ Main Points
👉ATTRIBUTION TO INFECTION
-yet no labs needed
👉ONSET & DURATION
-3 months yet can be cont. or delayed
👉 SYMPTOMS
-1 or more organ system but no limits
👉EQUITY
-anyone!
👉FUNCTIONAL IMPAIRMENT
-can be profound. Image
🌟Key Takeaways🌟
👉Legitimate Disease State
-that's in black and white folks)
👉#POTS #MECFS #MCAS are pathophysiologic mechanisms of #LC
👉#LC is an IACC - Infection Associated Chronic Condition
👉 Designed for max. impact & distribution /2 Image
🌟Clear Possible Pathogenesis 🌟
👉Immune Dysregulation
👉Microbiota Dysregulation
👉 Autoimmunity & immune priming
👉Blood Clotting & Endothelial Abnormalities
👉 Dysfunctional Neurological Signalling
=BIOLOGICAL BABY! /3 Image
Read 6 tweets

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