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Long Covid Advocacy 💙 Profile picture
@LongCovidAdvoc
Jan 16, 2023 • 10 tweets • 6 min read • Read on X
Scrolly
🧵Still marvelling at the wonder of the @Nature #LongCovid paper.
A few gems:
1. To see fatigue have ACTUAL pathologies listed 😲 Image
2. The ONE sentence that could prevent so much harm and waste of 💰
WHY doesn't everyone know this 🤷‍♀️ Image
3. Widespread lack of knowledge about post viral and Misformation
👀 Looking at you BPS #WesselySchool Image
4. The problem of the cross over of dysautonomia and anxiety
This confuses MANY researchers and clinicians - STOP IT! Image
5. Current #LongCovid research is NOT up to par. Image
6. We need MIXED COHORT research studies yesterday with a firm basis in #MECFS research Image
7. Profound Educational change is needed for Post Acute Viral Illness
#MECFS #LongCovid Image
8. The shock of seeing SO much pathology and biomedical detail 🤯 Image
9. This paper should be sent and read by ALL health professionals, policy makers and politicians especially GPs.
#MedTwitter
@wesstreeting @SteveBarclay
@NICEComms @DrAmirKhanGP
@bmj_latest @SamRobertsNHS
nature.com/articles/s4157…
10. Lastly - Validation
There is SO much biologically wrong with someone with #LongCovid
We deserve better Image

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More from @LongCovidAdvoc

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
Long Covid Advocacy 💙 Profile picture
Apr 13, 2024
🛸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, 2024
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

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