Dont worry, it's not my first rodeo. Was an ongoing saga for about 10-11 months last year and wasn't any of those things. Will see if it keeps happening or if it's a one off

It really is 🫂🫶

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

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.

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.

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

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.

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 “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.

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

Leading to:
⚠️ Poor oxygen & nutrient delivery
⚠️ Poor waste removal
= A perfect storm for fatigue and symptom flares.

#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.

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 “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.

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

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

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.

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 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.

Long COVID & ME/CFS are NOT deconditioning.
Let’s be very clear about that.

#LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

Really enjoyed listening to Prof Wust @UofTCOVIDRehab Forum.

Thought I'd share some of the key messages 🧵

#LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots

Love it so much! It is a rollercoaster of emotions. I bawled in the last ep!

Thank you, it's been a rough few weeks!

Yes I'm in the FB group

Thank you, aware of all that & keep all my meds in the dark anyway. I think I just injected too fast, will go slower next time! It's hydroxocobalamin (Pascoe) & SC

a close up of a cartoon character with icanhasgif.com at the bottom of the image Alt: a close up of a cartoon character, Boo from monsters inc. A little girl with dark hair in bunchies looking very sleepy, struggling to keep eyes open

B12 update - feeling wiped today & have spots on my face which is a side effect 👌
Also woke with a migraine but that's pretty normal for me. So perhaps the grogginess is migraine but it feels worse than normal. Dr Klein did say worse before better so I'm prepared. But siiiigh.

Thank you, taking all cofactors and will up my potassium

Been feeling woozy since a few mins after the 💉 it's been 2 hours 😬 is this normal?
When I've had them at the GP this didnt happen. I'm fine with needles etc.

Dr Klein said I'd get worse before better but didnt think he meant immediately 🙈 maybe it's an MCAS thing?

#LongCovid #POTS #MCAS

A flat lay of medical supplies on a wooden surface, including a pack of non-sterile gauze swabs, a 70% isopropyl alcohol wipe, a syringe in sterile packaging, a capped needle, and a small brown glass ampoule of injectable medication.

First B12 injection done 💉

Was a bit nervous about drawing it up, but it went fine. It stung a bit as I injected, think I went too fast, so lesson learned!

No bleeding (win), but fully expecting a bruise as I'm covered in them atm

Small wins, but quite proud of this one 💚

#LongCovid

Sending solidarity, it's definitely the little things that keep us sane 🙈🫶

Pink blossom trees in full bloom line a residential street with brick houses and parked cars under a grey, overcast sky.

Ticagrelor update: HR still a bit low & some lightheadedness, but better than last week, so I’ll persevere.

Frustrating after getting it somewhat under control, chronic illness life 🙃

In brighter news, I love looking at this tree 🌸

#LongCovid #POTS #PwME #TeamClots

Did a urine dip and it's not a UTI. Think the tica/triple has made me all inflamed or as my ANS has been flared up all week that's made me all inflamed or a combo of both. I do have low dose pred but trying to avoid for now. Siiiiigh, FML 💔

#LongCovid #POTS #TeamClots

FFS had abdo pain all week put it down to side effect. It seemed to settle yday but worsened overnight. Now have constant raw abdo & back pain, FML ?UTI or ? interstitial cystitis. Or maybe as my ANS has been so affected maybe the nerves are just all inflamed.
So done! 🤬
#LongCovid #POTS #TeamClots