Fen van Rhijn, MD

Seems relevant today, as any day

Wat fijn dat je een merkbare vermindering van de klachten hebt. Herken je de bijwerkingen ook, of viel het voor jou mee?

Good question. Their hypothesis is that it modulates inflammation. They'll indeed gradually have less PEM and function a bit better (if it works). I've also spoken to plenty of people who were in the trial and for whom it didn't work.

Adding that the trial was funded by the private clinic where the trial took place.

Ik heb inderdaad best wat zorgen die ik niet in het draadje heb vermeld, heb me gehouden aan wat je kan lezen in de paper. Miss moet ik hun conflict of interest er ook bij zetten.

Effect of subcutaneous lidocaine–hydroxypropyl-β-cyclodextrin (HP-β-CD) on quality of life in patients with post-COVID condition: a 36-week observational interrupted time series study Post-COVID involves persistent, multisystem symptoms which are associated with inflammation, immune dysregulation, and autonomic dysfunction. The effe…

Link to the paper (open access yay)

www.sciencedirect.com/science/arti...

So, summary

Rationale for the combo of lidocaine and hydroxypropylbetacyclodextrine unclear

Modest effects

Potential safety concerns

Open label

This is not the cure. Further research into alternative admin routes (transdermal? Sublingual?) could be interesting.

Screenshot of paper text about the adverse advents.

Authors do not think this is very serious. While the symptoms of intravascular admin they describe are indicative of CNS toxicity.

Screenshot of the table depicting the various adverse events (see paper)

We need to talk about adverse events. The subc fibrosis is not mentioned as an adverse event in the national formulary. Its present in 63%!
33% accidentally injected intravascularly, which is dangerous. Authors say this decreased by 83% (of what) but it's still a major risk.

Screenshot of the paper text listing why people stopped

Reasons for stopping. 14 stopped due to non effect. Another 14 due to adverse events.

Important: 29%, 30 people stopped. (So I really don't understand n=103 in the graphs). They probably carried the last known value forward, but then I'd like to see a sensitivity analysis. 67/103 people may be missing... (Bc some people hadn't reached 36 weeks yet)

Screenshot of another figure depicting the course of several symptoms over time. Symptoms increase from -4 weeks to t=1 and then slowly decrease a bit.

Secondary outcome measure. 30 symptoms scored daily on scale 1-7. Some significant improvements, but what do they mean? PEM goes from 5.5/7 to 3.5/7.
Important: 37 people had not reached 36 weeks yet (but they mention n= 103 in all graphs...)

Figure 2 from the paper. It are graphs with the component score on the y acid and time on the x axis. You can see a small improvement in the physical component score and a slightly larger improvement in the mental component score

Screenshot of the SF12 questionnaire

Primary outcome measure: SF12 hrqol questionnaire. Small effect on physical functioning , moderate effect on mental functioning. Judge for yourself whether this is suitable in LC.

They tested lidocain with hydroxypropylbetacyclodextrine. This combo has not been evaluated before, not in vitro, in vivo or in volunteers.
Open label study with 103 pwLC, WHO criteria (at least 2 months ill). Average was around 30 months.

Screenshot of the paper title with all the authors (link in the thread)

This is doing the rounds in NL. Here's some food for thought. 🧵

Wauw, wat gaaf!

Hmm I beg to differ de: prediabetes, given the large genetic component of DMII...

It works in COPD or heart failure where people are physically impaired but don't have PEM. Though I suspect that these patients will also have an opinion about how well it captures their disability...

It's 2025 and we are still using the 6 minute walking test as a primary outcome measure in long covid clinical trials. Yikes.

Uh, oke, bedankt voor het compliment.

Ik ben anti genocide.

Sorry sinds 'cultuur van de dood' kan ik niet meer op GL/PVDA stemmen.

Vanaf vandaag elke week Antifa-leestips (voor het hele gezin) uit de collectie van de bibliotheek. We beginnen met de stripbewerking van HET DAGBOEK VAN ANNE FRANK door David Polonsky. #leesvaardig #informatievaardig

One Covid infection = Long Covid
4.5 years of “exhibiting abnormally low activation in the parietal lobe”

✅ problems with coordination, movement, and balance
✅ poor hand-eye coordination and spacial awareness
✅ inability to find the names of objects
✅ difficulty with multitasking

#disabled

Would love to see RECOVER-TLC & RECOVER prioritize these findings.

➡️ Oxygen extraction issues

➡️ Preload failure

➡️ Reduced V̇O2peak

➡️ Skeletal muscle O2 diffusion

Ooh good to know that you're doing this! Any estimates on when it will be done? (It would be very useful for guideline development)

Wat klote! 🫂

Thank you for publishing that data, it's super useful to inform guidelines. I was wondering, did the person with the year long baseline recover eventually or are they still at a lower baseline?

JK Rowling has literally made it impossible for me and my partner to travel to Scotland, my spiritual home I've wanted to live in since I was 10

I only wish upon her what she wishes for every trans person: a permanent disappearance from public life

🫂