Tessera

Well, I must admit, after working in a cardiothoracic transplant centre for 11 years, this result popping up over the weekend gave me a bit of a jumpscare! 😱

Screenshot of a laboratory sputum culture result on a patient portal. The heading reads "Resulted Orders – Sputum - Culture and Sensitivities (C&S)." Under "Culture result," it states: "Growth of Pseudomonas aeruginosa (A)." The result is displayed in a table with columns for Result, Value and Reference Range.

A beautiful garden visitor today. Thank you for brightening up my day 🦋💜🫶

A vibrant peacock butterfly with striking red wings and blue eye spots rests on a cluster of pale pink buddleia flowers in a sunny garden. The background is softly blurred with green foliage, making the butterfly and blooms stand out beautifully.

Mission accomplished! 🫡🧫 Today's mission was to hand in my sputum sample and it's officially done! Now the waiting begins. I'm really intrigued to see what the results show and hopefully, they'll finally give us some answers🤞

A collage of two photographs. The top image shows a white specimen pot wrapped in white tissue being held in a person's hand, ready for transport. The bottom image shows a box of co-amoxiclav 500 mg/125 mg film-coated tablets by Milpharm, with the label stating that it contains amoxicillin and clavulanic acid and noting that it contains penicillin.

Helen/OT_Skiff @otskiff.bsky.social · 2mo ago

Resp update - so yday was pretty awful, to be honest! 🥵🥴🤢 This heat is not agreeing with me at all & each day seems worse than the last. I've been feeling incredibly nauseous, finding it difficult to eat and drink 🤢 and also very woozy.

Close-up of a hand holding a white and green pharmacy paper bag that reads "100% Recyclable & Compostable" against a bright summer scene with lush green trees, grass, colourful flowers, and blue skies.

6 years in and I'm still developing new symptoms. Over the last few weeks I've developed restless legs, except it's actually my whole body, not my legs. Because apparently sleep just wasn't difficult enough already 🙃😴 #LongCovid #PwME #POTS #MCAS #Migraine

Schitt's Creek: David Rose's 'Lucky Me'

Alt: David Rose from Schitt's Creek a tall man with dark hair wearing a black jumper with 2 dogs on it saying "oh lucky me" sarcastically

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Helen/OT_Skiff @otskiff.bsky.social · 3mo ago

Feeling wiped atm (more than usual)😴. The coughing up bloody blobs is beciming more frequent pretty much daily now. I've been in touch with resp team, Dr replied within 2 mins and I've received an appt for 6 weeks time 📅 #LongCovid #POTS #MCAS #TeamClots #Migraine

Coughed up another bloody blob today = 2 in 4 days 💔 I actually predicted it yesterday because the chest pain was so bad. Same symptoms, same pattern as last year, think it might be happening again 🫠🫁😭 #LongCovid #POTS #PwME #MCAS #Migraine #TeamClots

a man from schitt 's creek says " i 'm feeling this "

Alt: David from Schitt's Creek (a tall man with dark hair wearing a grey and black jumper) standing in a shop in front of a white door expressive moving his hands saying "I'm feeling this like deep aching sense of dread"

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FFS just coughed up a bloody mucusy blob. This happened pretty much weekly for most of last year, had to have a bronch and then CT showed GGO's & mucus plugging. Hope thats not all starting again 💔 really cba, feel like I'm falling apart atm! #LongCovid #TeamClots #POTS #MCAS #PwME

I’m just a girl, looking at my HRV and wishing it would go back to green 💚 Since starting ticagrelor it’s been consistently “unbalanced”, likely from the heart rate changes and presyncope. Fatigue and that post-B12 dip/reversing out probably aren’t helping either.

Screenshot of a heart rate variability (HRV) app showing a 4-week view (22 March–18 April). A graph displays 7-day averages with early data points in green (balanced) around the low 30s, gradually increasing and turning orange (unbalanced) from early April onwards. The baseline range is shown in grey. Recent values reach around 41 ms and remain in the unbalanced zone. Overnight averages show 37 ms during sleep and 36 ms while awake. The latest entry (18 April) shows a 7-day average of 41 ms and an overnight average of 40 ms.

We need better recognition, better research, and collaboration to move this forward. Patients deserve better. #LongCovid #PwME #MECFS #SafeRehab #TeamClots

📣 So please, stop reducing complex, life-changing conditions to: “just deconditioning” It’s inaccurate. And it’s harmful. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

But we do know this: - Long COVID & ME/CFS are different to deconditioning - PEM is real - The biology is measurable #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

A presentation slide titled “Take home messages.”
The slide lists key summary points:
Patients with Long COVID and ME experience post-exertional malaise (PEM), where symptoms worsen with exercise
Mitochondrial alterations have been widely described in Long COVID
Different factors may drive reduced exercise capacity (“fatigue”) versus PEM, with the underlying cause still unknown
Skeletal muscle changes after strict bed rest differ from those seen in post-viral conditions
Microvascular changes may be useful for diagnosis and for understanding disease mechanisms
International collaboration is important going forward
On the right side, there is a small inset image of a speaker standing at a podium.

Big unanswered question: Is poor blood flow causing mitochondrial dysfunction or the other way around? We don’t know yet. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

A presentation slide titled “Microvascular dysfunction in long COVID & ME.”
On the left, bullet points describe key features:
Reduced lumen space
Endothelial activation and dysfunction
Basement membrane thickening
Reduced metabolite removal and reduced oxygen (O₂) and nutrient delivery, predisposing to fatigue
In the centre, there is a diagram of a small blood vessel (capillary). It shows narrowed vessel walls, a cluster resembling a clot or obstruction, and red and blue blood cells moving through a constricted space. The illustration suggests impaired blood flow and exchange.
At the bottom, a question reads: “Does local perfusion deficits and local hypoxia cause mitochondrial dysfunction, or vice versa?”
On the right side, there is a small inset image of a speaker presenting at a podium.

Leading to: ⚠️ Poor oxygen & nutrient delivery ⚠️ Poor waste removal = A perfect storm for fatigue and symptom flares. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

There’s also microvascular dysfunction: - Altered capillaries -Reduced lumen space - Endothelial dysfunction - Basement membrane thickening #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

A presentation slide titled “Endothelial cell abnormalities.”
On the left side, there are four small graphs comparing controls, Long COVID, and ME/CFS. These include measures of lumen area, relative lumen area, endothelial cell (EC) thickness, and basement membrane (BM) thickness, showing differences between groups. Logos for ME Research UK and ME/CVS Vereniging appear below the graphs.
On the right side, there are electron microscopy images of capillaries. The top image, labelled “Capillary from Long COVID,” shows an irregular, distorted structure. Below, images labelled “Capillaries from healthy controls” show more uniform, circular structures.
On the far right, there is a small inset image of a speaker presenting at a podium.

At a cellular level: Abnormal mitochondria have been observed in Long COVID & ME/CFS. Energy production is impaired. Fatigue here is biological, not behavioural! #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

A presentation slide titled “Electron microscopy: Abnormal mitochondria in Long COVID.”
The slide shows two side-by-side electron microscopy images. On the left, labelled “Healthy mitochondria,” the structure appears well-defined and organised. On the right, labelled “Long COVID,” the mitochondria appear irregular and disrupted in structure.
On the right side of the slide, there is a small inset image of a speaker standing at a podium giving a presentation.

PEM is the key. Symptoms worsen after activity. So pushing exercise without careful, individualised screening & guidance? Can make patients worse 🚫 #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

Physiology shows: - Impaired oxygen utilisation - Circulatory issues So no, patients aren’t just “out of shape.” Their bodies are struggling at a fundamental level. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

Muscle findings: ❌ Not typical atrophy ✅ Mitochondrial dysfunction ✅ Fiber-type changes This is not “just being unfit.” #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

Yes, reduced exercise capacity is seen. But that does not = deconditioning. Same outcome, completely different biology. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

Patients might “look well” in clinic. That snapshot means nothing. What you don’t see is the crash that comes after. Clinicians must screen for and consider the impact of PEM. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

A presentation slide featuring a cartoon illustration about hidden illness.
On the left, a woman is shown smiling and walking while two clinicians speak to her. A speech bubble says, “You look fantastic today…”.
An arrow points to the right, where the same person is shown the next day lying in bed in a darkened room, wearing an eye mask, appearing unwell and exhausted.
Below the illustration, the text reads: “Clinicians: look further than the moment where you see the patient. Call them the next day.”
On the right side of the slide, there is a small inset image of a speaker presenting at a podium.

Long COVID & ME/CFS are NOT deconditioning. Let’s be very clear about that. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

A presentation slide titled “Long COVID & ME/CFS: Not only deconditioning.”
The slide explains that people with Long COVID and ME/CFS have reduced exercise capacity (VO₂ max). While this can look similar to deconditioning from bed rest, the underlying mechanisms are different. It notes that muscles do not show generalised atrophy but instead have mitochondrial and fibre-type changes, and there are signs of impaired oxygen utilisation and circulation. It also highlights that post-exertional malaise (PEM) is central to the condition and warns to be cautious about increasing exercise without personalised supervision.
At the bottom, a takeaway message reads: “Do not treat as ‘simple deconditioning.’”
On the right side, there is a small inset image of a speaker presenting at a podium.

Really enjoyed listening to Prof Wust @UofTCOVIDRehab Forum. Thought I'd share some of the key messages 🧵 #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots