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

😎 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

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…

Today is #MEAwarenessDay
🐋 Let's take a deep dive into what ME is
and
😇 Why allyship is so important
1/15 2/

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 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

🌟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. 🌟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

🛸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 🧵 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

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 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

🧵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

📝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?

https://twitter.com/LongCovidAdvoc/status/1773381226792997199

🤔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

🧵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

❓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 @karamballes

📑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… 📸 Infographic on possible pathophysiology & symptoms
All covered in the paper

🧵Still marvelling at the wonder of the @Nature #LongCovid paper.
A few gems:
1. To see fatigue have ACTUAL pathologies listed 😲 2. The ONE sentence that could prevent so much harm and waste of 💰
WHY doesn't everyone know this 🤷‍♀️

📺🧵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

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)

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...

📻 🧵 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

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

https://twitter.com/BinitaKane/status/1558716174757765121

🧵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

https://twitter.com/FrancesMair/status/1516461378143465474

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

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