Long Covid Advocacy 💙 Profile picture
Nov 13 13 tweets 3 min read Read on X
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”. 😵‍💫
3/ Symptoms line up: alertness and anxiety (“wired”) yet low energy, poor recovery, orthostatic intolerance - exactly the “high noise / low gain” scenario described. 🛌
healthrising.org/blog/2025/11/1…
4/ Treatment implications: This suggests we shouldn’t just suppress sympathetic activity or boost parasympathetic tone. Instead, supporting sympathetic reserve / NE production might be key. 🧠
5/ The new model in short:
• Trigger: infection / injury → locus coeruleus over-drive → metabolic stress → NE vesicle depletion
• Chronic phase: sympathetic “noise” remains but effective signalling falls → parasympathetic system lies low
• Outcome: ME/CFS / Long COVID 🛌
6/ Looking back: Early psychosomatic models of 'CFS/ME' painted a very different picture - a “stuck in fight/flight” narrative.

As do the brain retraining models such as The Lightning Process & The Gupta Program. ⚡
7/ Simon Wessely, Trudie Chalder, and colleagues framed fatigue syndromes as functional somatic syndromes: initial illness triggers stress/arousal, then behaviour & beliefs maintain a chronic autonomic over‑arousal.
ncbi.nlm.nih.gov/pmc/articles/P…
8/ Their 1998 book Chronic Fatigue and its Syndromes describes patients in a persistent fight/flight state perpetuated by behaviour and beliefs. 🏃🏼
simonwessely.com/Downloads/Publ…
9/ Under that model: sympathetic dominance → fatigue, disrupted sleep, hypervigilance; parasympathetic “rest/digest” suppressed. This rationale underpinned CBT and graded exercise therapy (PACE trial).
en.wikipedia.org/wiki/Graded_ex…
10/ But there’s an even earlier precursor: John Sarno’s Tension Myositis Syndrome (TMS). His work (~1980s) suggested repressed fear & emotions trigger autonomic responses as a “safety mechanism” - chronic pain is the body’s distraction. See our article:👇
open.substack.com/pub/longcovida…
12/ Critiques of Wessely’s framing: Autonomic research shows measurable dysautonomia, orthostatic intolerance, hypovolemia - evidence that symptoms are physiological, not just “maladaptive arousal”.
ncbi.nlm.nih.gov/pmc/articles/P…
13/ So today: the paradigm is shifting. From overactive fight/flight (psychosomatic) → to impaired fight/flight reserve (neuroenergetic/autonomic dysfunction). 🧠
14/ Why it matters: Conceptualising the mechanism correctly shapes therapy, research, & how patients understand their bodies

It's why we have fought so hard to counter the fight n flight model as portrayed in brain retraining. We know it's rooted in flawed psychosomatic theory

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More from @LongCovidAdvoc

Nov 10
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.
2️⃣ For a small non-profit or disabled advocate, that means hours of work can reach only a handful of people.
While misinformation spreads easily, lived experience and evidence-based advocacy are quietly filtered out.
Read 15 tweets
Nov 8
🧵 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 👇 A young woman sits on the edge of her bed in a slightly cluttered room decorated with string lights. She is wearing a tank top and shorts and looks pensive or unwell. The text on the image reads "LATEST RESEARCH," "LONG COVID," "SEX SPECIFIC DIFFERENCES," and below the image, "Long COVID patients with ME/CFS show sex-specific immune, hormonal, and neuroinflammatory disruptions, with women exhibiting stronger inflammation, gut dysfunction, cognitive gene changes, and lower testosterone/cortisol." The source is listed as "Shahbaz et al 2025, Cell.&...
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.
2️⃣ In women, the immune system stays stuck in overdrive:
🔥 higher inflammation
🧬 more activated immune cells
💥 fewer regulatory (“calming”) T-cells

This immune chaos may drive ongoing damage and exhaustion.
Read 11 tweets
Oct 22
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
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…
3️⃣ April 2020: Viner led a Lancet rapid review claiming school closures would have “limited effect” on COVID spread.
Used by Govt to justify reopening schools.
🟰 weak evidence, strong influence.
📎 pubmed.ncbi.nlm.nih.gov/32272089
Read 24 tweets
Jun 21
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 Image
5. The key effects are chronic inflammation, insulin resistance & liver disease.

-chronic inflammation
elevated C-reactive protein [CRP] and cystatin C levels, and leucocyte and neutrophil counts
/3 Image
Read 13 tweets
Jun 20
😎 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
💨Air Flow
1. Create a cool zone
2. Portable AC
3. Evaporative air coolers
4. Cross winds when cooler
5. Personal attachable fans
6. Tech with quiet mark
7. Blow hot air out window
8. Mist room & use fan
/3
Read 12 tweets
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

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