1️⃣ Visible Health has launched a local clinical trial feature. One of the first surfacing to users is an ACT (Acceptance & Commitment Therapy) trial led by Trudie Chalder, a researcher whose work has been highly controversial in ME. This raises important patient-safety concerns. 2️⃣ Chronic illness patients, especially ME and Long Covid, have a long history of harm from behavioural framing, invalidation, and psychological treatment paradigms being presented as disease-modifying. For many, this is not theoretical. It is lived trauma.

It's International Day of Persons with Disabilities.

To mark this we are looking at ways to help those house-bound or bed-bound with Long Covid or chronic illness with vital screening & testing. /1
🧵👇 Cervical cancer screening via self-sampling is coming soon to England’s national programme: people overdue for smear may receive a kit in the post allowing HPV testing at home. /2
🖇️
gov.uk/government/new…

🧵1️⃣ It’s UK Budget Day - so here’s a budget #RachelReeves hasn’t announced: a proper Long Covid Budget. We've estimated the real economic burden of Long Covid at £12-15 BILLION A YEAR.

At a £ a minute that puts us back in 26,500 BC - the Late Upper Paleolithic 😳
#Budget2026 2️⃣ 📈 According to the European Journal of Health Economics (2025), around 2 million people in the UK report Long Covid - c. 3% of the population.
link.springer.com/article/10.100…

🧵#CLoCK Update
New paper released on #longcovid paediatric fatigue that demonstrates UK research culture has not made the vital steps needed to meet need or understand the disease.
Let's critically assess the issues:
/1 They found that 61.6% met the CFQ (Chalder Fatigue Scale 😳) case-ness.
🔹35% at 3 months
🔹40% at 24 months
Higher risk = female, older c.15yrs, reported learning difficulty

This demonstrates that #longcovid research predominantly risks misrepresentation for young women.Why?/2

1/ 🧵 New perspective: Maybe all those yoga classes aren’t fixing fatigue… turns out, in ME/CFS & Long COVID, we may not be stuck in fight/flight at all. 🧘‍♀️

Cort Johnson summarises a new model suggesting low brain norepinephrine (NE) is central to symptoms. 2/ In this view by David Goldstein & Lilian Aregawi: The sympathetic nervous system isn’t overactive - it’s struggling. Low NE vesicle levels in the locus coeruleus → high neural “firing” but low output → “wired but tired”. 😵‍💫

Thread:
🚨 Long Covid and ME voices are being quietly hidden on X.
Let’s talk about what’s happening - and what we can do together to push back. 🧵 1️⃣ Over the past months, many advocacy accounts have seen posts vanish from feeds, searches, or hashtags. Follows have dived.
This isn’t a glitch - the algorithm de-prioritises health and advocacy content, especially when it includes links or repeated hashtags.

🧵 Important new study out in Cell Reports Medicine (Shahbaz et al. 2025):
👉 Long Covid with ME/CFS isn’t the same in women and men - biologically.
👉 And it’s not “fatigue.” It’s immune, hormonal, and neurological chaos.

Let’s break it down layperson style 👇 1️⃣ Researchers studied people with Long Covid who meet criteria for ME/CFS i.e. the more severe group, often housebound or unable to work.

They found deep biological differences between women and men - not psychological ones.

1️⃣ What role did Professor Russell Viner play in shaping UK COVID policy on children - and how did it affect recognition of Long Covid in kids?
A timeline 🧵 with sources about our concerns

https://twitter.com/_CatintheHat/status/1980947167079768346

2️⃣ March 2020: As RCPCH President, Viner told UCL News that “children are at very little risk of infection.”
This line shaped early UK messaging on COVID risk to children.
📎 ucl.ac.uk/news/headlines…

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