Share this page!

Enter URL or ID to Unroll

You can paste full URL like: https://x.com/threadreaderapp/status/1644127596119195649
or just the ID like: 1644127596119195649

How to get URL link on X (Twitter) App

  1. On the Twitter thread, click on or icon on the bottom
  2. Click again on or Share Via icon
  3. Click on Copy Link to Tweet
  4. Paste it above and click "Unroll Thread"!
  5. More info at Twitter Help
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.

• • •

Missing some Tweet in this thread? You can try to force a refresh
　

Keep Current with Long Covid Advocacy 💙

Long Covid Advocacy 💙 Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @LongCovidAdvoc

Long Covid Advocacy 💙 Profile picture
Jun 26
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
🌟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
Long Covid Advocacy 💙 Profile picture
Apr 13
🛸Advocacy Alienation

This is an interesting phenomena. It can affect attitude, advocacy priorities and nomenclature.

It's especially present in the area of illnesses that carry taboo or disbelief in the medical world.

There are different advocacy styles - which is great /1 🧵 Image
Yet if an org can't
🛸 clearly define, say, interact or state issues that affects patients
-that are part of the discrimination against them
-that affects their quality of life and illness
-that are unjust

Then Houston, we have a problem - we have advocacy alienation /2
This can take many forms:
🛸Some won't say or have much to do with ME
🛸Some won't speak out about injustice
🛸Some avoid the severe or contentious, difficult issues

Why is this? It's curious. There might be a number of reasons: /3
Read 11 tweets
Long Covid Advocacy 💙 Profile picture
Apr 11
Those who have Long Covid, ME or chronic illness often experience a "double obscurity" (a quote from Margaret Atwood).

There is the obscurity of the illness and then the obscurity of societies inability to understand the illness. /1 Image is The Faerie Court by Thomas Maybank. It's in black grey and white. There's a white fairy woman in the background and a dark fairy carriage. Quote by Susan Sontag "Everyone who is born holds dual citizenship in the kingdom of the well and the kingdom of the sick ... Sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place."
Susan Sontag in her famous quote from 'Illness as Metaphor' captures this experience.

It's as if we enter into a different Kingdom, even if people can see us in plain view. We are other, it, a reminder that life can be unfair, painful and cruel. /2
It is as if we hold a social contagion, a bad luck that needs to be avoided. No wonder history has its sin eaters and scapegoats.

We become taboo. /3
Read 12 tweets
Long Covid Advocacy 💙 Profile picture
Apr 2
🧵After the NHS #LongCvd conference we can see a peculiar split in view:
1️⃣ NHS clinicians & researchers - think they are empathetic, giving a good service, dealing with psychological needs. Researchers still invested in psychosocial & activity intervention.
more... 👇 /1
2️⃣ #LongCvd patients often feel neglected, have a poor experience of clinics, emphasis on the psychological is leading to an increase in social services referrals, poor knowledge & gaslighting in primary care. At risk through lack of masking. /2
3️⃣ How do we bridge this gap? There still seems a lack of engagement with the severe, very severe & ME from the NHS. This is crucial. What is from good intentions is leading to a difficult patient experience. /3
Read 6 tweets
Long Covid Advocacy 💙 Profile picture
Mar 30
📝This is the agenda from the NHS #LongCvd conference
It was filmed and will be online (H/T @JCeoltaSmith)

🙄Concern: why on earth is each hub allowed to wing it in woo wonderland?
🕵️‍♀️Where is the standardised investigations & treatment for POTS/ME/Microclots - that incl severe?
Image
🤔The majority of the conference seems to be on therapies 4 rehab. But how do people access rehab if the underlying pathology isn't treated?
🤔Kind of freaking out the CYP section was led by lead from SW Hub Bath lead fatigue service - Crawley territory Image
🤔'Post Covid' Society - nomenclature concern - it was called Long Covid to avoid implying Cvd was over in LC
It's why post-acute is used
🤔What's the future system to treat LC and post viral illness. Are we all going to fatigue clinics?!
Read 6 tweets

Did Thread Reader help you today?

Support us! We are indie developers!

This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Don't want to be a Premium member but still want to support us?

Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!

Ethereum

0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy

Bitcoin

3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

Follow Us!

Send Email!

:(