Long Covid Advocacy 💙 Profile picture
A non-profit social enterprise dedicated to people with #LongCovid + #ME. 💙📚 Home to the #pedanticzebra book club. 🛍️ https://t.co/8JlRWqxASF
Jun 21 13 tweets 3 min read
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.
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Jun 20 12 tweets 2 min read
😎 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
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Jun 11 19 tweets 5 min read
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…
May 12 16 tweets 4 min read
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.
Jun 26, 2024 5 tweets 2 min read
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
Jun 12, 2024 6 tweets 3 min read
🌟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
Apr 13, 2024 11 tweets 3 min read
🛸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
Apr 11, 2024 12 tweets 3 min read
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
Apr 2, 2024 6 tweets 1 min read
🧵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
Mar 30, 2024 6 tweets 2 min read
📝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
Mar 28, 2024 10 tweets 3 min read
🧵Here's the poster presentations from the NHS #LongCvd conference
Whilst extensive they also show how far we are from actual treatments
There's alot of lifestyle intervention
& some concerning trends
👇 more /1
acrobat.adobe.com/id/urn:aaid:sc… From Cambridge efforts to give 'holistic' care & reassurance by giving a positive functional dx 😳
FND - Functional (not based in disease pathology) - ME
More mind-body crap
@CBMEgroup /2 Image
Apr 28, 2023 4 tweets 2 min read
❓Who is behind the ongoing narrative to paint kids & parents as 'anxious' & 'fearful' as the reason for persistent absence?
It's sinister & just wrong
No mention of #LongCovid
No safeguards against infection Image @karamballes
Apr 20, 2023 4 tweets 3 min read
📑The new paper which reviews #LongCovid
💎Is a gem because
⚕️It offers a one stop paper that patients can give to their HCP
⚕️It's thorough
⚕️It's detailed in pathophysiology
📸 Fab graphics
🙏Thank you to all involved
@DrAsadKhan
sciencedirect.com/science/articl… Image 📸 Infographic on possible pathophysiology & symptoms
All covered in the paper Image
Jan 16, 2023 10 tweets 6 min read
🧵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
Oct 28, 2022 5 tweets 4 min read
📺🧵Key takeaways from @IndependentSage
@DrGrahamLJ on the long term risks of #SARSCoV2:
🔹Covid is a blood vessel disease
🔹1/2 billion virus in 1tsp of saliva
🔹Importance of mouth hygiene
🔹Viral load in mouth predictor of acute illness Clear explanation by @Sunny_Rae1 of #SARSCoV2 as:
🔹a blood vessel disease
🔹 pathophysiology of microclots & endothelial damage
🔹present in #LongCovid & a lesser degree in 'recovered' patients
Aug 28, 2022 11 tweets 3 min read
UPDATE: Complaint about CISCO21 Long Covid Exercise Study
🚩Serious risk of patient harm
RESPONSE: PEM is primarily assoc. with other forms of exercise
Resistance bands do not rely on mitochondria
🤦‍♀️PEM can occur after any exertion
Axcella used resistance bands=mito dysfunction 🚩No screening for PEM
🚩 Inadequate consultation of scientific literature in #ME #PEM
RESPONSE: we've done PPI & PROMS 😬 (this literally doesn't make sense)
Aug 27, 2022 11 tweets 5 min read
The psychologisation of a disease occurs when it is believed that psychological states cause or drive or sustain symptoms of that disease.
🚪Front door psychologisation: it's in your head, causes the disease
🚪Back door psychologisation: influences, sustains, drives the disease Gez & Danny's book looks fantastic and a real resource for those with & without #LongCovid.
Sincerely hoping that this view that: "there is a huge degree that our emotional state can drive symptoms by sending us into a state of sympathetic overdrive"
is not referenced...
Aug 22, 2022 8 tweets 7 min read
📻 🧵 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 💙
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Aug 14, 2022 8 tweets 8 min read
Awesome #LongCovid coverage in @thetimes - thank you to all who gave their precious energy to raise awareness 💙
@BinitaKane @doctorasadkhan @AntonyLoveless @amyismall @Daltmann10 Ben Pickett @NickGuthe @melheightman @maxwele2 ImageImageImageImage
Apr 21, 2022 16 tweets 11 min read
🧵Serious Red Flags for the #CISCO21 #LongCovid Study
Researchers please listen to patients concerns & expand your knowledge to the history of #MECFS
You have a chance to stop patient harm 1. No mention of #PEM #PESE in the literature
After repeatedly asking if they screen for #PEM or take this into account - they have not responded in the affirmative.
This is the nub of the issue
75% of #Longhaulers have #PEM
46% are eligible for an #MECFS diagnosis
Oct 22, 2021 4 tweets 2 min read
Super @BBCNews coverage of possible breakthrough treatment that dissolves the microclots, HELP Apheresis. Superb interview by @doctorasadkhan who tells it like it is!!! ✊ Let's hope this works, fast track funding is given & it's rolled out to all 🤞🙏
Vid 1: 🧵 Vid 2: Dr Beate Jaegar