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1. Embed this notice
   Erik Uden 🍑 (erikuden@mastodon.de)'s status on Sunday, 15-Sep-2024 20:06:46 JST Erik Uden 🍑

   Day 012 of the Multiple Sclerosis Study
   (Compound Day 9) Saturday on 2024-09-14
   Groningen, Netherlands (GMT+1)

   Content Warning: Needles, and drug related medical stuff (panic attack), pain through medical actionsMy Schedule for TodayGlossary

   • BP = blood pressure
   • HR = heart rate
   • SB = (study bound) meal controlled for the study

   07:30 Wellbeing Pre dose
   08:30 Telemetry (Start subject lay down [192h])
   08:40 Telemetry (Make ECG print [3x])
   08:45 Telemetry (Stop subject lay down [192h])
   08:45 Vital signs (BP, HR)
   08:55 Blood sampling

   • PK: Sample 30
   • PL PD 2-AG: Sample 110
   • SR PD 2-AG: Sample 315

   08:55 Remove intravenous catheter
   09:00 Transfer bloodtubes
   09:00 Urine collection

   • Stop container 6
   • Stop collection

   09:00 Transfer Urine containers
   09:10 Breakfast (Start)
   09:40 Dose (RO7268489 or placebo)
   09:40 Dose check
   09:40 Water fast (Start)
   09:40 Telemetry

   • Stop
   • Disconnect + Archive

   10:40 Intravenous catheter (Inspection)
   11:40 Water fast (Stop)
   11:40 Morning snack
   13:10 Lunch
   15:30 Afternoon snack
   18:30 Dinner
   19:00 Wellbeing
   21:30 Evening snack

   My Stats for Today

   Water intake: 4 (glasses, one tea, one compound)

   My Notes for Today

   06:15
   Y'all. I just woke up. I have NO negative side effects anymore (except for the mild ones)! I was able to sleep, my back doesn't hurt anymore, my arms are perfectly fine after the cannula was out. This is going to be a great day!

   09:43
   I can finally have a shower :]

   18:22
   This was a wonderful day! I walked outside, had fun with my peers, and recovered a lot by calling friends and doing what I like :blobcatmeltlove:

   18:55
   I was talking to a fellow German person sitting in front of me, then someone said "Here, we draw the Germany border” and gestured the imaginative border that would section us two off, on the table. He then continued “You guys are used to borders” and I can't stop laughing :spinnier_cat:

   22:13
   Many calls today, got lots of things done. Very good day!

   • GreenSkyOverMe (Monika) repeated this.
   • Embed this notice
     Erik Uden 🍑 (erikuden@mastodon.de)'s status on Sunday, 15-Sep-2024 20:06:45 JST Erik Uden 🍑

     in reply to

     Day 013 of the Multiple Sclerosis Study
     (Compound Day 10) Sunday on 2024-09-15
     Groningen, Netherlands (GMT+1)

     Content Warning: Needles, and drug related medical stuff (panic attack), pain through medical actionsMy Schedule for TodayGlossary

     • BP = blood pressure
     • HR = heart rate
     • SB = (study bound) meal controlled for the study

     07:30 Wellbeing (Pre dose)
     08:40 ECG (3x)
     08:40 Vital signs (BP, HR)
     08:55 Blood sampling (PK: Sample 31)
     08:55 Transfer bloodtubes
     09:10 Breakfast (Start)
     09:40 Dose (RO7268489 or placebo)
     09:40 Dose check
     09:40 Water fast (Start)
     11:40 Water fast (Stop)
     11:40 Morning snack
     13:10 Lunch
     15:30 Afternoon snack
     18:30 Dinner
     19:00 Wellbeing
     21:30 Evening snack

     My Stats for Today

     Water intake: 3 (glasses, one tea, one compound)
     Symptoms: none are severe :)

     My Notes for Today

     08:15 (written afterwards)
     I woke up so late... Which is a good thing! I looked at the clock and thought “wow, it's 7:30, I'm basically sleeping in”, like, I REALLY thought getting up at 7:30 would be LATE, because here it is. I kept sleeping and was eventually woken up at ~08:15. What a great day today will be!

     09:40 (written afterwards)
     I am always astonished by the rigorous procedure that this compound should be handled with. They need to compare the data from my wristband (about my identity) with the text on the vial that holds the compound. The moment I'm in the room they have to hold the vial up and in their hands the entire time, because even if the assistant simply places the vial on the table, they'd have to do the entire comparison again. They also keep the vial afterwards.

     13:05
     Getting lunch soon! Excited for what this day may bring, I will go outside once more today.

   • Embed this notice
     Shaula Evans (shaulaevans@zirk.us)'s status on Wednesday, 18-Sep-2024 15:53:42 JST Shaula Evans

     in reply to

     @ErikUden I hope it is the best, fastest, easiest, least painful, best-performed lumbar puncture in the history of medicine.

   • Embed this notice
     Erik Uden 🍑 (erikuden@mastodon.de)'s status on Wednesday, 18-Sep-2024 15:53:43 JST Erik Uden 🍑

     in reply to

     13 minutes until my last lumbar puncture! Wish me luck :blobcathuggies:

     GreenSkyOverMe (Monika) repeated this.
   • Embed this notice
     Erik Uden 🍑 (erikuden@mastodon.de)'s status on Wednesday, 18-Sep-2024 15:53:44 JST Erik Uden 🍑

     in reply to

     17:30 (Continuation)
     After telling the head physician my first thoughts about going to a psychiatry, and my sentiment being very explicitly that I am not interested, he weighed in that it would be a lot of paperwork to make this happen. Although that wasn't really my concern, but if I thought I'd need to go to a psychiatry, I would ask regardless of the paperwork.

     There are many players here and I, at the bottom of the food chain, can't really understand who has my best interests in mind. I trust the physician a lot, as he's calm and wouldn't suggest anything if it goes against a patient's health. There's the sponsor Roche, which has suggested to take me off the compound and wishes for me to go to a psychiatry for “safety”. What it began sounding to me is that these side effects at such low doses paint a worrying picture for possible EU / FDA approval of this drug. My vehement cataloging and absolute honesty about my own health makes my record an outlier among some of my study-mates, who sometimes are the entire day not present in our realm, only to then claim “It's all fine” in the wellbeing, causing no side effects to be noted. I don't blame them, on a schedule this rough it's incentivized to keep things short.

     So, is Roche worried about (never mentioned) withdrawal symptoms and wants to study those, or do they want to go through my medical history to find a “legitimate” reason to dismiss my personal experience with the compound? Potentially dismiss also my negative side effects from the withdrawal if there will be any? I have no idea.

     Honestly, I may just understand the entire situation wrong, so take everything with a grain of salt. Possibly they're also just worried. I don't have anything to hide, I've been honest to ICON about my medical history, they even have many documents forwarded by my GP. I still stand for my privacy :)

     23:54
     I just had a karaoke evening, we only played good songs. This place is pretty chill, I must admit. During karaoke I told the story of the head physician and the psychiatry. A guy looked me dead in the eyes and said “you know they'd give you a fortune if you do that, right?” I was like “nahh man, that's not true, is it?”, and he claimed “yeah, for any inconvenience or extra day... they're a medical company after all”, and I still don't believe him, but that may have been possible. It didn't change my mind, however, I'm very glad this will be over when it is over! Not that I hate it here, not at all, but maybe keep it low for my first study, after all :]

   • Embed this notice
     Erik Uden 🍑 (erikuden@mastodon.de)'s status on Wednesday, 18-Sep-2024 15:53:46 JST Erik Uden 🍑

     in reply to

     Day 015 of the Multiple Sclerosis Study
     (Compound Day 12) Tuesday on 2024-09-17
     Groningen, Netherlands (GMT+1)

     Content Warning: Needles, and drug related medical stuff (panic attack), pain through medical actionsMy Schedule for TodayGlossary

     • BP = blood pressure
     • HR = heart rate
     • SB = (study bound) meal controlled for the study

     7:30 Wellbeing (Pre dose)
     8:40 ECG (3x)
     8:40 Vital signs (BP, HR)
     8:55 Blood sampling

     • PK: Sample 33
     • Clinical chemistry (see SSL)

     08:55 Transfer bloodtubes
     9:10 Breakfast (Start)
     9:40 Dose (RO7268489 or placebo)
     9:40 Dose check
     9:40 Water fast (Start)
     11:40 Water fast (Stop)
     11:40 Morning snack
     13:10 Lunch
     15:30 Afternoon snack
     18:30 Dinner
     19:00 Wellbeing
     21:30 Evening snack

     My Stats for Today

     Muscle pain ended around 07:15
     No more dizziness / disorientation ~10:00

     My Notes for Today

     08:55 (written afterwards)
     Taking blood was a lot easier today, especially with their new butterfly needles that snap back when done. It feels a lot more painless, like ripping a bandaid off.

     14:00 (written afterwards)
     I had the first massage of my life. They offer one for our group here. Despite the lumbar puncture being long over, my back still tingled funny when I was massaged. I am not afraid of tomorrow's last lumbar puncture, rather I am anxious. Anxious of something happening the last time? Another roll of the dice, perhaps? Or anxious to go through the entire back pain, possibly headaches, whilst on withdrawal of an unknown compound. I will be so glad when this is over, though.

     17:47
     I'll write an update about what's going on later today! Weird things occurring...

     18:01
     Originally I wrote the following, I will write a better, more informed text about what occurred after it.

     The head physician was asked by the sponsor (Roche) to send me to a psychiatry. I surmised that their goal is to find something wrong with me in order to dismiss the panic attack, as I'm the first patient that had such a thing at this dose, hence trying to get it off the list of side-effects the sponsor now have to put on their medicine. I felt like the head physician insinuated that too.
     
     However, I decided against going into a psychiatry on my own free will, as it not only doesn't fit into my schedule, but I'll also not aid this potential fudging. Going to the psychiatry here (*next to being a ton of paperwork*) would also lead to them getting access to a lot of my medical documents, which Roche may go through to find whether there's some reason to dismiss me.
     

     :blank:
     :blank:

     17:30 (written afterwards)
     I was playing with my study- (and also room-) mates a version of rummy that I wasn't accustomed to, but learned during the study. The head physician came to the room and asked to speak me. I got up and walked to his room. He spoke to me in half-Dutch, half-English sentences, leaving lots of meaning up to interpretation. What I did understand as part of this conversation was the following:

     “Hey Erik, I received an E-Mail / was in a meeting with the study's sponsor. They are concerned for your health and would want for you to go to a psychiatry. Now, from my perspective you are healthy and fine, which is what I told the sponsor. They will want to ask you for your consent to go to a psychiatry.”

     What this meant wasn't explained further. Would I go to a psychiatry for one talk, would I have to stay there for another week? What am I consenting to?

     He continued talking: “They want to see how you are, because no one in your group had strong symptoms like you. They want to see if you're okay mentally and would, through the psychiatry, request your medical history.”

     I am not sure if this was the “consenting” he was referring to. Again, I am not only just recalling this information written 00:10 the next day, but the English was also hard to understand.

     To be continued

   • Embed this notice
     Erik Uden 🍑 (erikuden@mastodon.de)'s status on Wednesday, 18-Sep-2024 15:53:47 JST Erik Uden 🍑

     in reply to
     Content Warning: Needles, and drug related medical stuff (panic attacks)

     10:50 (Continuation of the E-Mail)

     Ever since compound day 5, however (today is compound day 11), I have had lessened to no symptoms. The symptoms were around 10-30% as strong as during my one state on day 5, and instead of them lasting longer, the high phases are only 2-3 hours. The fact these effects lessen may have been due to me now drinking more, but also because I could psychologically deal with and prepare for the symptoms. On day 5, I didn't know what was going on, now I don't stress out if I may feel disoriented for a short time. In the morning, especially before, or a few hours after, the dosing at 09:40, I feel as if there has been no effect at all. Around the afternoon (12:30 - 15:30), I may experience the height of the compound, but have since always managed to still do work or complex tasks during this phase.
     
     The only thing that I notice with taking the compound today, is mostly when I concentrate on a task so much that when I look away, I become disoriented for a second, and also my mind wanders off and loses track more easily. However, I also realized that every day since day 5, the severity of these effects became less and less, meaning I might become accustomed to this state, or am able to learn how to deal with it better. I don't feel like the side effects lessen (below 5-20%), but I can find ways to handle them better. Right now is a good example of that. It's been two hours since taking the compound, slight effects settle in, I notice them if I concentrate on them, but if I simply acknowledge that something about my state of mind has changed, I can still continue to focus on writing this E-Mail.
     
     Overall, the only side effects of this drug were sometimes weed-like symptoms, but no pain, no severe problems, no sleep deprivation, and it doesn't even taste bad. I've had a very good experience both with the compound and at ICON for the past weeks.
     
     Yours sincerely,
     Erik Uden
     Participant with the compound RO7268489
     

     (sent 11:51)

     13:31 (written afterwards)
     Some random Belgian number called me and hung up the moment I picked off.

     15:00 (written afterwards)
     I went outside and walked for an hour! It was very refreshing.

     18:25 (written afterwards)
     The head physician came to me and talked about how the meeting went with the sponsor. I was still in a half-sleep, as I tried to recuperate some sleep I didn't get last night due to staying up so late to finish some work. He told me that the Sponsor (Roche) has decided to no longer give me the compound RO7268489, as they are worried about my wellbeing. I had no say in the matter, as you could see, my E-Mail was even quite optimistic about my future experience with this drug. However, they saw too many risks in it, and would like for me to stop. Especially because they were worried about possible withdrawal symptoms. Hence, the new plan is to have me stay at ICON until the 21st, do all the blood and CSF samples as the schedule says, but never take any of that medicine again. My study has just been converted to a “withdrawal study”. I think that will be very interesting.

     This blog is obviously not over, I'll document everything until the last ambulatory visit in late November! However, it may be that the fun part has just ended, or perhaps started... We will see!

   • Embed this notice
     Erik Uden 🍑 (erikuden@mastodon.de)'s status on Wednesday, 18-Sep-2024 15:53:48 JST Erik Uden 🍑

     in reply to

     Day 014 of the Multiple Sclerosis Study
     (Compound Day 11) Monday on 2024-09-16
     Groningen, Netherlands (GMT+1)

     Content Warning: Needles, and drug related medical stuff (panic attack), pain through medical actionsMy Schedule for TodayGlossary

     • BP = blood pressure
     • HR = heart rate
     • SB = (study bound) meal controlled for the study

     07:30 Wellbeing (Pre dose)
     08:40 ECG (3x)
     08:40 Vital signs (BP, HR)
     08:55 Blood sampling

     • FK: Sample 32
     • SR PD 2-AG: Sample 316

     08:55 Transfer bloodtubes
     09:10 Breakfast
     09:40 Dose (RO7268489 or placebo)
     09:40 Dose check
     09.40 Water fast (Start)
     11:40 Water fast (Stop)
     11:40 Moming snack
     13:10 Lunch
     15:30 Afternoon snack
     18:30 Dinner
     19:00 Wellbeing
     21:30 Evening snack

     My Stats for Today

     Water intake: 6 glasses (three tea, one compound)

     My Notes for Today

     10:50 (written afterwards)
     A number from the Netherlands began calling me, I panicked for a second, then accepted the phone call. It was the head physician asking me to write yet another E-Mail with my experiences of the past days, because he'd wish to present them to the Sponsor (Roche) with whom he had a meeting about an hour after the call. However, right after hanging up that conversation, he calls again, I accept the call and turns out he didn't consciously try to call me again, as I was just hearing background noise, most likely because his telephone was in his pocket.

     Regardless, I've written the following in that E-Mail:

     Dear▯▯▯▯▯ ▯▯▯▯,
     you asked me to describe my experience with the compound in the past couple of days, I will do so in the following E-Mail:
     
     The first time I took the compound, I had mild (10%) symptoms that were similar to Marijuana for about three hours. As I didn't have much to concentrate on, I also let loose, just relaxed, accepted and expected side effects. However, I always felt like I was in control and could behave normally if I concentrate on doing so!
     
     The following days (compound days 2-4), I felt nothing. No side effect, no difference in attention span, or cognitive side effects (I had work meetings, wrote long E-Mails, call people and organize things, just like without the compound).
     
     On day 5 I had a panic attack when the effects suddenly set in, not even an hour earlier I had a work meeting that went flawlessly. As described previously, I was having the exact same panic attack as when I first took weed (edibles, ate a bit too much) over a year ago. Hence, I am prone to such panic attacks caused by the sudden feeling of disorientation or loss of control, however, with the knowledge of what I can expect as a side effect to happen, both with the weed over a year ago and the compound in this study, I never had a panic attack again. I am sure that if I had been a little more attentive or was more aware of the fact that the effects might settle in later, it could've been easily prevented. Since the effects lessened from day 1 to the morning of day 5, I thought I'd never experience any symptoms anymore, if I hadn't been in that mindset and more educated about this medicine, I am sure the panic attack would not have happened.
     

     To be continued...

   • Embed this notice
     Erik Uden 🍑 (erikuden@mastodon.de)'s status on Wednesday, 18-Sep-2024 15:53:49 JST Erik Uden 🍑

     in reply to

     when life gives you lemons,,,,

   • Embed this notice
     Erik Uden 🍑 (erikuden@mastodon.de)'s status on Saturday, 21-Sep-2024 20:59:21 JST Erik Uden 🍑

     in reply to

     Welkom in Duitsland 2024

     GreenSkyOverMe (Monika) repeated this.
   • Embed this notice
     Erik Uden 🍑 (erikuden@mastodon.de)'s status on Saturday, 21-Sep-2024 20:59:22 JST Erik Uden 🍑

     in reply to

     Day 019 of the Multiple Sclerosis Study
     (Compound Day 16) Friday on 2024-09-21
     Groningen, Netherlands (GMT+1)

     Content Warning: Needles, and drug related medical stuff (panic attack), pain through medical actionsMy Schedule for TodayGlossary

     • BP = blood pressure
     • HR = heart rate
     • SB = (study bound) meal controlled for the study
     • C-SSRS = Columbia-Suicide Severity Rating Scale

     07:15 Urine collection (Continue)
     07:30 Wellbeing
     07:40 Urine clinical chemistry (Not sooner)
     09:30 ECG (3x measurement)
     09:30 Vital signs (BP, HR)
     09:40 Blood sampling

     • PK: Sample 48
     • SR PD 2-AG: Sample 324
     • Clinical chemsitry

     09:40 Transfer bloodtubes
     09:40 Cogstate (Neurocognitive Test Battery)
     09:40 Urine collection

     • Stop container 10
     • Stop collection

     09:40 Transfer Urine containers
     09:40 Breakfast
     10:00 Physician task (Cannabis Withdrawal Scale)
     11:30 Discharge

     • Hand out information card
     • Time may differ

     Stats for Today

     Water intake: 4 (glasses, one tea)

     My Schedule for Today

     12:19
     Welp, I'm out. It was quicker than I expected, and I forgot my charger there (no worries, I'll be back in just two days), but... wow, it's actually over. I haven't fully had the time to comprehend it by now. The morning I “slept in” until 8:15, the assistants “looked the other way” for breakfast (I could actually eat a yogurt) and all the tests went over swiftly. Except for the blood sample, that, for some reason, was worse than ever, but who cares! It's over! Actually over. I cannot believe that the time went by so quickly.

     To be fair, I quite liked the environment. Everything was taken care of for you! You'd get food 6 times a day, had a washing machine and dryer, there'd be events organized for you (bowling, walking outside, massages...), there are rooms for recreational activities (board / card games, video games, watching TV, even a karaoke machine). It'd be nice for such facilities to just exist as a public service, not for profit making, but it's really nice regardless!

     12:24
     As I was about to finish that last thought, the bus arrived in Groningen. The bus driver stepped outside and said “You'll need a passport with you, due to the uhh, controls”. Then I remembered: the “progressive” German government (Liberals, Greens, Social Democrats) has for the first time since Covid enacted border patrols in order to “stop illegal migration”.

     A Dutch citizen was just told that she couldn't come with us on the bus ride as her national ID wouldn't suffice Germany's border patrol. This is among the most ridiculous events in Germany's modern political history, and the biggest indicator for our nations shift to the far right. The fascist AfD has completely annexed any political narrative and made their major talking points the only political talking points. As their rise to power becomes more inevitable by the day, every opportunist political party begins the race to the right, always trying to one up the others in how much of the AfD's proposals they can implement in the hopes of “winning back” some of the far right voters.

     Implementing AfD proposals so that the AfD doesn't do it has to be among the most mindless political actions.

     13:18
     German border patrol / police is getting mad at a guy for only having his German driver's license. An elderly Dutch woman was also asked to leave the bus. Bus leaves.

     My Trip Home

     2024.09.21 | Trip from ICON
     --------------🌱🚂🚄🚝🚇🌲-------------
     ╔═════[🇳🇱Groningen🇳🇱]════
     ║
     ╠═🔴╡12:30 Groningen
     ╠═🟢╡13:25 Leer (Ostfriesland)
     ╠═🚍╡Bus 72008 68 km
     ║
     ╠═════════Leer════════
     ║
     ╠═🔴╡14:42 Leer (Ostfriesland)
     ╠═🟢╡16:28 Verden
     ╠═🚍╡IC 2433 135 km
     ║
     ╚══════[🇩🇪Verden🇩🇪]═════

     Stats:

     Time Interval Travelled
     12:30 - 16:28

     Total Time Travelled
     03:58 h

     Total Distance Travelled
     203 km

     Live Track my Journey

     #NowTräwelling
     [1] https://traewelling.de/status/3432807
     [2] https://traewelling.de/status/3432857

     GreenSkyOverMe (Monika) repeated this.
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     Erik Uden 🍑 (erikuden@mastodon.de)'s status on Saturday, 21-Sep-2024 20:59:23 JST Erik Uden 🍑

     in reply to

     Day 018 of the Multiple Sclerosis Study
     (Compound Day 15) Friday on 2024-09-20
     Groningen, Netherlands (GMT+1)

     Content Warning: Needles, and drug related medical stuff (panic attack), pain through medical actionsMy Schedule for TodayGlossary

     • BP = blood pressure
     • HR = heart rate
     • SB = (study bound) meal controlled for the study
     • C-SSRS = Columbia-Suicide Severity Rating Scale

     06:30 Intravenous catheter (Check)
     07:15 Telemetry (Continue)
     07:15 Urine collection (Continue)
     07:30 Wellbeing
     09:20 Telemetry (Start subject lay down [336h])
     09:30 Telemetry (Make ECG print [3x])
     09:35 Telemetry (Stop subject lay down [336h])
     09:35 Vital signs (BP, HR)
     09:40 Blood sampling

     • PK: Sample 47
     • PL PD 2-AG: Sample 115
     • SR PD 2-AG: Sample 323
     • Remove intravenous catheter

     09:40 Transfer bloodtubes
     09:40 Urine collection

     • Stop container 9
     • Start container 10

     09:40 Transfer Urine containers
     09:40 Telemetry

     • Stop
     • Disconnect + Archive

     09:40 Breakfast
     10:10 Physician task

     • Brief Psychiatric Rating Scale C-SSRS

     10:40 Morning snack
     10:40 Intravenous catheter (Inspection)
     12:10 Lunch
     15:00 Afternoon snack
     15:15 Urine collection (Continue)
     17:30 Dinner
     19:00 Wellbeing
     20:30 Evening snack
     23:15 Urine collection (Continue)

     My Stats for Today

     Water intake: 1 (glass)

     My Notes for Today

     09:17
     Wow, I haven't really had an appointment up until now / in three minutes. It's gonna be a nice day with little appointments, unlike yesterday. The worst is over, no more lumbar punctures and only two times of a blood sample being taken. My time here is almost up, as tomorrow I'll leave. Today is my last full day here in Groningen, I better enjoy it!

     09:37
     Only three minutes until I will never have to wear a long term ECG device ever again. I am so happy about this information.

     11:18
     I feel like I should clarify one thing: whenever blood is taken or during the lumbar puncture, I don't talk about Mastodon because I'm so obsessed with it (I mean, that too) but rather because it's a super complicated thing that I have to concentrate on and explaining it takes my attention away from the 10cm long needle deep in my back haha. Same with syringes and blood taking! When I'm done talking about Mastodon, the procedure is usually done too.

   • Embed this notice
     Erik Uden 🍑 (erikuden@mastodon.de)'s status on Saturday, 21-Sep-2024 20:59:25 JST Erik Uden 🍑

     in reply to
     Content Warning: Needles, and drug related medical stuff (panic attack), pain through medical actionsMy Stats for Today

     Water intake: 3 (glasses, one tea)

     My Notes for Today

     05:47 (written afterwards)
     The schedule said 6 AM! They came at this ungodly hour to connect me with cables, hahaha.

     12:00
     Oh man, it's been a long day so far. Many appointments, but I've sort of gotten used to it? I'm glad I'll be out in just two nights (!!), although I don't hate it here, I am just happy to see my friends and family again :)

     Yesterday, during my last wellbeing, I had a much longer conversation with an assistant who also happened to be a psychologist. She told me more about the offer from Roche and what it was about. There were a lot of misunderstandings and I'll have another conversation with my physician about it. I have not changed my mind, I just want to be sure about what is going on. Additionally, apparently I can request a meeting with him at any time (even by phone) due to “informed consent”. If there's something I don't understand, it's his job to make it clear to me, otherwise I'd have legitimate reasons to leave.

     16:56
     When signing up for this study I told the assistants doing the screening I “never took any drugs”, probably referring to alcohol. They were not happy that during the study they found out that I did try weed in the form of edibles a year ago. However, they noticed that I was honest the moment I was asked during the study, or when specific questions regarding weed came up, hence it became obvious that I didn't try to deliberately hide something.

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     Erik Uden 🍑 (erikuden@mastodon.de)'s status on Saturday, 21-Sep-2024 20:59:26 JST Erik Uden 🍑

     in reply to

     Day 017 of the Multiple Sclerosis Study
     (Compound Day 14) Thursday on 2024-09-19
     Groningen, Netherlands (GMT+1)

     Content Warning: Needles, and drug related medical stuff (panic attack), pain through medical actionsMy Schedule for TodayGlossary

     • BP = blood pressure
     • HR = heart rate
     • SB = (study bound) meal controlled for the study

     06:00 Telemetry (Connect)
     06:30 Intravenous catheter (Check)
     07:30 Wellbeing (Pre dose)
     07:40 Urine clinical chemistry (Not sooner)
     07:40 Body weight
     07:40 Physician task

     • Neurological examination
     • Brief Psychiatric Rating Scale
     • C-SSRS

     07:50 Telemetry Start
     08:00 Telemetry (Start subject lay down [312h])
     08:10 Telemetry (Make ECG print [3x])
     08:15 Telemetry (Stop subject lay down [312h])
     08:15 Vital signs (BP, HR)
     08:20 Blood sampling

     • PK: Sample 35
     • PL PD 2-AG: Sample 112
     • SR PD 2-AG: Sample 318
     • Clinical chemistry

     08:20 Transfer bloodtubes
     08:30 Cogstate (Neurocognitive Test Battery)
     09:00 Urine collection

     • Urinate into tollet
     • Start container 7

     09:10 SB Breakfast (Start)
     9:40 Dose (RO7268489 or placebo)
     9:40 Dose check

     09:40 Water fast (Start)
     09:45 Blood sampling (PK: Sample 36)
     09:45 Transfer bloodtubes
     09:50 Telemetry (Start subject lay down [312.5h])
     10:00 Telemetry (Make ECG print [3x])
     10:05 Telemetry - Stop subject lay down [312.5h])
     10:05 Vital signs (BP, HR)
     10:10 Blood sampling

     • PK: Sample 37-'SR PD 2-AG: Sample 319

     10:10 Transfer bloodtubes
     10:20 Telemetry (Start subject lay down [313h])
     10:30 Telemetry (Make ECG print [3x])
     10:35 Telemetry (Stop subject lay down [313h])
     10:35 Vital signs (BP, HR)
     10:40 Blood sampling (PK: Sample 38)
     10:40 Transfer bloodtubes
     11:10 Blood sampling (PK: Sample 39)
     11:10 Transfer bloodtubes
     11:20 Telemetry (Start subject lay down [314h])
     11:30 Telemetry (Make ECG print [3x])
     11:35 Telemetry (Stop subject lay down [314h])
     11:35 Vital signs
     11:40 Blood sampling

     • PK: Sample 40
     • PL PD 2-AG: Sample 113
     • SR PD 2-AG: Sample 320

     11:40 Transfer bloodtubes
     11:40 Water fast (Stop)
     12:20 Telemetry (Start subject lay down [315h])
     12:30 Telemetry (Make ECG print [3x measurement])
     12:35 Telemetry (Stop subject lay down [315h])
     12:35 Vital signs (BP, HR)
     12:40 Blood sampling (PK: Sample 41)
     12:40 Transfer bloodtubes
     12:40 Cogstate (Neurocognitive Test Battery)
     13:20 Telemetry (Start subject lay down [316h])
     13:30 Telemetry (Make ECG print [3x measurement])
     13:35 Telemetry (Stop subject lay down [316h])
     13:35 Vital signs (BP, HR)
     13:40 Blood sampling

     • PK: Sample 42
     • PL PD 2-AG: Sample 114
     • SR PD 2-AG: Sample 321

     13:40 Transfer bloodtubes
     13:40 SB Lunch (Check post dose restrictions)
     15:00 Intravenous catheter (Check)
     15:20 Telemetry (Start subject lay down [318h])
     15:30 Telemetry (Make ECG print [3x measurement])
     15:35 Telemetry (Stop subject lay down [318h])
     15:35 Vital signs (BP, HR)
     15:40 Blood sampling (PK: Sample 43)
     15:40 Transfer bloodtubes
     15:40 Urine collection

     • Stop container 7
     • Start container 8

     15:40 Transfer Urine containers
     16:15 Telemetry (Continue)
     16:15 Urine collection (Continue)
     17:40 Blood sampling (PK: Sample 44)
     17:40 Transfer bloodtubes
     19:00 Wellbeing
     19:20 Telemetry (Start subject lay down [322h])
     19:30 Telemetry (Make ECG print [3x])
     19:35 Telemetry Stop subject lay down [322h])
     19:35 Vital signs (BP, HR)
     19:40 Blood sampling

     • PK: Sample 45
     • SR PD 2-AG: Sample 322

     19:40 Transfer bloodtubes
     19:40 SB Dinner
     21:20 Telemetry (Start subject lay down [324h])
     21:30 Telemetry (Make ECG print [3x measurement])
     21:35 Telemetry (Stop subject lay down [324h])
     21:35 Vital signs (BP, HR)
     21:40 Blood sampling (PK: Sample 46)
     21:40 Transfer bloodtubes
     21:40 Urine collection

     • Stop container 8
     • Start container 9

     21:40 Transfer Urine containers
     22:00 Intravenous catheter (Check)
     23:15 Telemetry (Continue)
     23:15 Urine collection (Continue)

     To be continued...

   • Embed this notice
     Erik Uden 🍑 (erikuden@mastodon.de)'s status on Saturday, 21-Sep-2024 21:03:46 JST Erik Uden 🍑

     in reply to

     what a nice little border patrol does to my plans