Fen van Rhijn, MD
@fvrhijn.bsky.social
MD | rheumatology resident
#ME due to #LongCovid
Nonbinary 🌈🌈🌈🌈 | views are mine.
#ME due to #LongCovid
Nonbinary 🌈🌈🌈🌈 | views are mine.
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.
December 6, 2025 at 6:07 PM
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.
December 6, 2025 at 2:57 PM
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.
December 6, 2025 at 2:56 PM
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.
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.
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.
December 6, 2025 at 2:33 PM
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.
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.
Authors do not think this is very serious. While the symptoms of intravascular admin they describe are indicative of CNS toxicity.
December 6, 2025 at 2:33 PM
Authors do not think this is very serious. While the symptoms of intravascular admin they describe are indicative of CNS toxicity.
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.
33% accidentally injected intravascularly, which is dangerous. Authors say this decreased by 83% (of what) but it's still a major risk.
December 6, 2025 at 2:33 PM
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.
33% accidentally injected intravascularly, which is dangerous. Authors say this decreased by 83% (of what) but it's still a major risk.
Reasons for stopping. 14 stopped due to non effect. Another 14 due to adverse events.
December 6, 2025 at 2:33 PM
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)
December 6, 2025 at 2:33 PM
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)
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...)
Important: 37 people had not reached 36 weeks yet (but they mention n= 103 in all graphs...)
December 6, 2025 at 2:33 PM
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...)
Important: 37 people had not reached 36 weeks yet (but they mention n= 103 in all graphs...)
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.
December 6, 2025 at 2:33 PM
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.
Open label study with 103 pwLC, WHO criteria (at least 2 months ill). Average was around 30 months.
December 6, 2025 at 2:33 PM
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.
Open label study with 103 pwLC, WHO criteria (at least 2 months ill). Average was around 30 months.
Hmm I beg to differ de: prediabetes, given the large genetic component of DMII...
November 3, 2025 at 4:11 PM
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...
November 2, 2025 at 8:44 PM
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...
Uh, oke, bedankt voor het compliment.
October 27, 2025 at 8:17 PM
Uh, oke, bedankt voor het compliment.
Ik ben anti genocide.
October 24, 2025 at 6:12 PM
Ik ben anti genocide.
Sorry sinds 'cultuur van de dood' kan ik niet meer op GL/PVDA stemmen.
October 24, 2025 at 4:31 PM
Sorry sinds 'cultuur van de dood' kan ik niet meer op GL/PVDA stemmen.
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)
August 23, 2025 at 7:58 PM
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)