Long Covid Advocacy 💙 Profile picture
Nov 8 11 tweets 2 min read Read on X
🧵 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.
3️⃣ There’s also gut barrier dysfunction - meaning particles from the gut leak into the bloodstream, fueling inflammation.

Markers like Galectin-9, Reelin, and Artemin (linked to pain and brain fog) were higher, especially in women.
4️⃣ Hormones are out of sync too.
🩸 Women had low testosterone and cortisol
🩸 Men had low oestrogen
→ both affect immune balance, energy metabolism, and brain function.

These aren’t “stress hormones gone wrong” - they’re part of the biological disruption.
5️⃣ The study also found neuroinflammatory gene signatures in women - clues to why brain fog and cognitive dysfunction hit harder.

These are molecular traces of inflammation inside the nervous system.
6️⃣ In short:
Long Covid + ME/CFS =
🧠 Neuroinflammation
💥 Immune activation
⚖️ Hormonal imbalance
🩸 Disrupted blood and oxygen balance

And women are hit hardest.
7️⃣ The authors say we need sex-specific treatments, including possible hormone-based approaches - not one-size-fits-all medicine.

It’s time to stop telling patients it’s in their heads. The evidence is in their cells.
8️⃣ This study adds to growing proof that Long Covid is a biological, systemic disease, not deconditioning or anxiety.

Persistent inflammation, hormonal collapse, and neuroimmune damage explain what patients have been saying all along.
9️⃣🔔 Women have rarely been warned that they are at higher risk of severe Long Covid‑ME/CFS. The science now shows: far from equal, the odds and biology are stacked against them.
1️⃣0️⃣📖 Paper: Shahbaz et al., Cell Reports Medicine (2025)
“Integrated immune, hormonal, and transcriptomic profiling reveals sex-specific dysregulation in Long Covid patients with ME/CFS.”
cell.com/cell-reports-m…

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More from @LongCovidAdvoc

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
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
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

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