Notices by Erik Uden 🍑 (erikuden@mastodon.de), page 9

Day 011 of the Multiple Sclerosis Study
(Compound Day 8) Friday on 2024-09-13
Groningen, Netherlands (GMT+1)

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

6:00 Telemetry, Connect
6:30 Intravenous catheter (Check)
7:30 Wellbeing (Pre dose)
7:40 Urine clinical chemistry (Not sooner)
7:40 Physician task

• Neurological examination Brief Psychiatric Rating Scale C-SSRS

7:50 Telemetry (Start)
8:00 Telemetry (Start subject lay down [168h])
8:10 Telemetry (Make ECG print [3x])
8:15 Telemetry (Stop subject lay down [168h])
8:15 Vital signs (BP, HR)
8:20 Blood sampling

• PK: Sample 18
• PL PD 2-AG: Sample 107
• SR PD 2-AG: Sample 310

8:20 Transfer bloodtubes
8:30 Cogstate (Neurocognitive Test Battery)
9:00 Urine collection

• Urinate into toilet
• Start container 4

9:10 SB Breakfast (Start)
9:40 Dose (RO7268489 or placebo)
9:40 Dose check
9:40 Water fast (Start)
9:45 Blood sampling (PK: Sample 19)
9:45 Transfer bloodtubes
9:50 Telemetry (Start subject lay down [168.5h])
10:00 Telemetry (Make ECG print [3x]
10:05 Telemetry (Stop subject lay down [168.5h])
10:05 Vital signs (BP, HR)
10:10 Blood sampling

• PK: Sample 20
• SR PD 2-AG: Sample 311

10:10 Transfer bloodtubes
10:20 Telemetry (Start subject lay down [169h])
10:30 Telemetry (Make ECG print [3x])
10:35 Telemetry (Stop subject lay down [169h])
10:35 Vital signs (BP, HR)
10:40 Blood sampling

• PK: Sample 21

10:40 Transfer bloodtubes
11:10 Blood sampling (PK: Sample 22)
11:10 Transfer bloodtubes
11:20 Telemetry (Start subject lay down [170h])
11:30 Telemetry (Make ECG print [3x])
11:35 Telemetry (Stop subject lay down [170h])
11:35 Vital signs (BP, HR)
11:40 Blood sampling

• PK: Sample 23
• PL PD 2-AG: Sample 108
• SR PD 2-AG: Sample 312

11:40 Transfer bloodtubes
11:40 Water fast (Stop)
12:20 Telemetry (Start subject lay down [171h])
12:30 Telemetry (Make ECG print [3x])
12:35 Telemetry (Stop subject lay down [171h])
12:35 Vital signs (BP, HR)
12:40 Blood sampling (PK: Sample 24)
12:40 Transfer bloodtubes
12:40 Cogstate (Neurocognitive Test Battery)
13:20 Telemetry (Start subject lay down [172h])
13:30 Telemetry (Make ECG print [3x])
13:35 Telemetry (Stop subject lay down [172h])
13:35 Vital signs (BP, HR)
13:40 Blood sampling

• PK: Sample 25
• PL PD 2-AG: Sample 109
• SR PD 2-AG: Sample 313

13:40 Transfer bloodtubes
13:40 SB Lunch (Check post dose restrictions)
15:00 Intravenous catheter (Check)
15:20 Telemetry (Start subject lay down [174h])
15:30 Telemetry (Make ECG print [3x])
15:35 Telemetry (Stop subject lay down [174h])
15:35 Vital signs (BP, HR)
15:40 Blood sampling (PK: Sample 26)
15:40 Transfer bloodtubes
15:40 Urine collection

• Stop container 4
• Start container 5

15:40 Transfer Urine containers
16:15 Telemetry (Continue)
16:15 Urine collection (Continue)
17:40 Blood sampling (PK: Sample 27)
17:40 Transfer bloodtubes
19:00 Wellbeing
19:20 Telemetry (Start subject lay down [178h])
19:30 Telemetry (Make ECG print [3x])
19:35 Telemetry (Stop subject lay down [178h])
19:35 Vital signs (BP, HR)
19:40 Blood sampling

• PK: Sample 28
• SR PD 2-AG: Sample 314

19:40 Transfer bloodtubes
19:40 SB Dinner
21:20 Telemetry (Start subject lay down [180h])
21:30 Telemetry (Make ECG print [3x])
21:35 Telemetry (Stop subject lay down [180h])
21:35 Vital signs (BP, HR)
21:40 Blood sampling (PK: Sample 29)
21:40 Transfer bloodtubes
21:40 Urine collection

• Stop container 5
• Start container 6

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

To be continued

Water intake: 9 (glasses, three tea, one compound)
00:00 - Now increased back pain and discomfort.
00:00 - Now Not able to sleep
00:00 - Now Disorientation / hard to find words
00:00 - Now muscle ache

03:05 (written afterwards)
I just got one paracetamol after explaining that I could not sleep at all. We've also talked about my side effects.

05:05 (written afterwards)
I finished my 6th view of “Plagiarism and You(Tube)” by Hbomberguy. It's a good video to listen to and fall asleep, sadly I never felt tired, so I just continued watching it until the end.

06:00 (written afterwards)
Sadly, going to bed didn't work out and I ended up not sleeping at all! It's not pain in my lower back, rather a slight discomfort when sitting in any way. The last lumbar puncture didn't have this, however, I believe these are the effects of the drug.

06:30 (written afterwards)
My cannula feels so weird. Whenever blood gets drawn I can feel it, not just in pain, but also both in pressure and numbness. I can feel the cold salt solution whenever it is inserted. My arm gets nunb after it for 3-4 Minutes. The assistants said this was normal. Also, the vein hurts, even in places where the cannula isn't. They said this was okay.

The medicine may cause such hypersensitivity? Although just retelling these events makes my body and the cannula feel weirder. It is all in le head.

12:57
They've taken my blood so many times today!! Vampires!!

13:05
My cannula tingles everywhere! Not hurting, just tingling. I almost burst out laughing despite it being an intravenous catheter that tickles me.

17:48
“De atoomklok heeft gefaald” (the atomic clock went out of order) one of the nurses said. I found that very funny.

19:35
„Is that an Ikea shark? I've worked at IKEA before, I like blohaj a lot. Did you know it has a large following by Transgender people? I think they are making pink sharks soon, also for the transgender people”
(this wasn't said negatively at all, I find the statement still very funny)

20:39
They removed my intravenous catheter because it didn't work anyway. Lol. My left arm feels very funny. It's gotten numb in some areas, and the cannula probably poked some nerve, now it's just AHHH feeling SO tingly I could explode. Moving my fingers is still hard. The assistants said it will be fine.

21:53
This day has finally come to an end. No more appointments. My left arm has this weird feeling of numbness, internal overstimulation, hard to move fingers/hand. It's getting better, still weird for this to happen through a cannula, must've hit the nerve.

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

• 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

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

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!

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

• 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

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

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.

Rafah in 2023 vs. Rafah today.

It's important to note that before the destruction of Rafah, it was declared as a safezone by Israel. People across the entire country were told to flee here. Just three months into this conflict, over one million refugees had to make this city their new home.

As a result of this, the Rafah offensive was heavily criticized and Israel was ordered to stop, by the United States, the ICJ, the EU, all EU member states independently, China, Australia, Brazil... [Source]

Was there any response when this red line was crossed? No, there were no (economic) sanctions or otherwise political consequences, despite this obvious human rights violation.

The refugee encampment in Rafah was specifically bombed as well. [[Source](https://en.wikipedia.org/wiki/Tel_al-Sultan_attack]]

Just last month the official safezone was changed again, into a much smaller and much more crammed area. The entire population of Gaza should move again into a space that could never support them and that is subject to change any time.

Abiding by these human rights violating orders is suicide. However, high up from our ivory tower, people are criticizing refugees of a country for not fleeing when they were told to do so. Blaming the victims for their death, as they could've always fled. In a debate in Germany I was even told that by continuing to stay in their home, these people support Hamas.

I have no words for such a sentiment; refugees deserve support no matter what.

I just love to post this here because in a year's time this will not make sense for anyone, yet in this brief moment we all understood.

It is true, I was the cat.

Viktor Orbán (Premierminister von Ungarn) gratuliert die Ampel-Regierung zu ihrer Migrationspolitik. Kannst du dir nicht ausdenken.

können wir bitte gleich nach der AfD ein FDP-Verbotsverfahren anstreben

@BeAware mmmmm.... it's the fediverse symbol, not “buttholes” 🤓🤓🤓☝️☝️

Day 004 of the Multiple Sklerosis Study
(Compound Day 1) Friday on 2024-09-06
Groningen, Netherlands (GMT+1)

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

06:30 Intravenous catheter (Check)
07:15 Telemetry (Continue)
07:30 Wellbeing (Pre dose)
08:10 Telemetry (Start subject lay down [0h])
08:20 Telemetry (Make ECG print [3x])
08:25 Telemetry (Stop subject lay down [0h])
08:25 Vital signs (BP, HR)
08:30 Blood sampling

• PK: Sample 1
• PL PD 2-AG: Sample 102
• SR PD 2-AG: Sample 302
• Genotyping: Sample 401

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

• Urinate into toilet
• Start container 1

09:10 SB Breakfast (Start)
09:40 Dose (RO7268489 or placebo)
09:40 Dose (check)
09:40 Water fast (Start)
09:50 Telemetry (Start subject lay down [0.50h])
10:00 Telemetry (Make ECG print [3x measurement])
10:05 Telemetry (Stop subject lay down [0.50h])
10:05 Vital signs (BP, HR)
10:10 Blood sampling

• PK: Sample 2
• SR PD 2-AG SR: Sample 303

10:10 Transfer bloodtubes
10:20 Telemetry (Start subject lay down [1h])
10:30 Telemetry (Make ECG print [3x])
10:35 Telemetry (Stop subject lay down [1h])
10:35 Vital signs (BP, HR)
10:40 Blood sampling (PK: Sample 3)
10:40 Transfer bloodtubes
11:10 Blood sampling (PK: Sample 4)
11:10 Transfer bloodtubes
11:20 Telemetry (Start subject lay down [2h])
11:30 Telemetry (Make ECG print [3x])
11:35 Telemetry (Stop subject lay down [2h])
11:35 Vital signs (BP, HR)
11:40 Blood sampling

• PK: Sample 5
• PL PD 2-AG: Sample 103
• SR PD 2-AG: Sample 304

11:40 Transfer bloodtubes
11:40 Water fast (Stop)
12:20 Telemetry (Start subject lay down [3h])
12:30 Telemetry (Make ECG print [3x])
12:35 Telemetry (Stop subject lay down [3h])
12:35 Vital signs (BP, HR)
12:40 Blood sampling (PK: Sample 6)
12:40 Transfer bloodtubes
12:40 Cogstate (Neurocognitive Test Battery)
13:20 Telemetry (Start subject lay down [4h])
13:30 Telemetry (Make ECG print [3x])
13:35 Telemetry (Stop subject lay down [4h])
13:35 Vital signs (BP, HR)
13:40 Blood sampling

• PK: Sample 7
• PL PD 2-AG: Sample 104
• SR. PD 2-AG: Sample 305

13:40 Transfer bloodtubes
13:40 SB Lunch (Check post dose restrictions)
15:00 Intravenous catheter (Check)
15:20 Telemetry (Start subject lay down [6h])
15:30 Telemetry (Make ECG print [3x])
15:35 Telemetry (Stop subject lay down [6h])
15:35 Vital signs (BP, HR)
15:40 Blood sampling (PK: Sample 8)
15:40 Transfer bloodtubes
15:40 Urine collection

• Stop container 1
• Start container 2

15:40 Transfer Urine containers
16:15 Telemetry (Continue)
16:15 Urine collection (Continue)
17:40 Blood sampling (PK: Sample 9)
17:40 Transfer bloodtubes
17:40 Telemetry

• Stop and disconnect
• Subject can take a shower

18:10 Telemetry (Connect and start)
19:00 Wellbeing
19:20 Telemetry (Start subject lay down [10h])
19:30 Telemetry (Make ECG print [3x])
19:35 Telemetry (Stop subject lay down [10h])
19:35 Vital signs (BP, HR)
19:40 Blood sampling

• PK: Sample 10
• SR PD 2-AG: Sample 306

19:40 Transfer bloodtubes
19:40 SB Dinner
21:20 Telemetry (Start subject lay down [12h])
21:30 Telemetry (Make ECG print [3x])
21:35 Telemetry (Stop subject lay down [12h])
21:35 Vital signs (BP, HR)
21:40 Blood sampling (PK: Sample 11)
21:40 Transfer bloodtubes
21:40 Urine collection

• Stop container 2
• Start container 3

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

85 appointments in total
21 blood samples being drawn
9 times are vital signs recorded

To be continued...

Water intake: 10 (glasses, two tea, two compound)
10:30 - 10:54 headache (3/10)
14:20 - 15:30 headache (6/10)
20:20 - 20:58 headache (7/10)

00:14
I just realized what a full day is ahead of me! 21 blood samples? 85 appointments in total? Also the first time I'm taking the wonder drug! When I'll wake up in 6 hours I'm gonna have an interesting day. It'll be hard recording much, so I thought I'd post the schedule ahead of time. I'm excited for what's to come tomorrow!

00:28
Was texting and laid my phone on the telemetry device. It REALLY didn't like that and a nurse came to ask what was going on. It must've given really weird readings, as she was scared about my health. I was told to put the device further away from my phone. Lol.

02:14
I moved in a weird way and must've accidentally unplugged the temeletry device, so they came to me and replugged it. Busy night!

08:02
I woke up way too early! I only had a intravenous catheter check earlier today, but for some reason I decided to stay awake when I woke up at ~06:10. I could've slept until ~07:10. However, I'm wide awake out of excitement for the compound we'll take for the first time today! It is administered as a drink and we'll have to stop drinking anything for two hours after that! What will it taste like? What will I feel? What if I have crazy symptoms and later it turns out I had the placebo?

09:04
Y'all, the intravenous catheter / cannula didn't work, they needed to use a needle for the first four blood samples anyway! I got a warming flask to heat up my arm so it works the next time (hopefully). It worked this morning when they checked it haha.

09:37 (written afterwards)
The anticipation in the room was astounding. I was the first patient to receive the compound as part of our study, the fifth of its kind. From 67 people on planet earth, I was number 68 to ever receive it (or a placebo). After finishing my very controlled breakfast, I came to this room, from one appointment to the next, the energy could be felt in the room. I sat down to lie down on my bed, Doctors and assistants hurdling to note things down, put everything in place, give each other assuring looks, then one moment to the next, at exactly 09:39:30 it went dead silent. Everyone was just waiting for these final 30 seconds to pass. The tone shift seemed only odd to me, who made pointed out the silence, which was only followed by more silence. Waiting patiently for the glowing red digital clock to show the right value. Everything was going according to schedule today. At 09:39:55 a doctor took the specific ampoule with my name and number on it, opened it, and handed it to me at exactly 09:40:00. Before this they explained how I'm supposed to drink it (drink all the liquid inside the glass, they'll refill the glass with water once more which I'll then drink again, followed by drinking a glass of water, followed by a water fast).

I wondered how the liquid would taste. I chugged it down in one go and...

09:44
I just took the compound for the first time. It had no taste, I think. The water tasted “metallic” or rather had the absence of a taste? Like water without any minerals. Sterilized water. However, it had no taste I can report. Let's see what will happen to me. This drug does something to the same receptors cannabis works on, so maybe it'll be like a trip? We'll see. Wish me luck!

09:49 (written afterwards
All the doctors and assistants disappeared one after the other! Once I had taken the medicine, only the regular personal in the room watched over me. I think that was okay. I guess they know not much would happen.

10:15
I feel interesting. Very tipsy. Haha. I also laughed a lot. Maybe my mind is just making up things because I think this is like weed. Very funny.

10:54
It's a psyop. I don't feel anything. These edibles ain't shit.

To be continued...

10:55
I am of the firm believe that this compound has not had any effects on me as of yet. My half-understanding of its effects simply caused me to imagine some symptoms similar to a weed intake. This really shows how much one's expectations and state of mind can change your experience of the world. I laughed a lot and had a good time. I thought about how great my life was and all the things that lead to this. Sure, many things could be better, but even the bad things seemed to be part of this great play that, at least for me, has just begun. Even if I am just lying in a hospital bed, I am everywhere, and everything is me. Or so I feel like whenever I close my eyes.

I think what this compound truly does is allow me to show a side of myself that I'd usually not show or see myself. I am a very optimistic person, I tend to see everything with a positive outlook. It took an untested medical drug with unforseen changes to a human's brain chemistry before I would feel comfortable showing that side of myself. Right now I have all the excuses, and whatever I do I am not under the scrutiny of any judgment by anyone, be it medical doctors or the people around me. To think that in such an environment I would choose or allow myself to be nicer and happier is a very beautiful thing.

I would be happy to find out I had the placebo, because it would mean it doesn't take a drug to be this happy.

11:03
They can draw blood more easily now. My arm was way too cold. I didn't bring any sweater because it was so hot. Luckily they keep the hospital at a CHILLING 19°C. A girl offered me her sweater. Let's see if I'll freeze.

11:06
Thank you RO7268489 or placebo, you're very cool

11:16
I have the Impulse to play with string and my mind wanders off easily. Everything is kinda funny and I sound silly. I have trouble finding the right word for things, but it doesn't matter, hehe

11:20 (written afterwards)
I started laughing uncontrollably about nothing in particular. Just lying in bed, thinking to myself and being happy.

11:45
Gay means happ and im ao gay

12:57
It's over now. Going to have lunch soon which makes me very happy.

13:06
What I also observed or found interesting is how doctors and assistants noted very little / nothing down. I could sit here and laugh, or have obvious effects (as a possible result of the medication) and there would be no formal way of them noting that down. During the “wellbeing” I may report on what I experienced and will obviously mention the trance like state I found myself in, but the way I see it they think they'll mostly record things based off of blood samples, ECG records etc. Also I could just forget to report things during the wellbeing. Considering how many doctors surrounded me when I initially took it, I assumed someone would note everything I do 24/7.

17:24
Only 16 minutes until I can take a shower again. As someone working in IT, I can't say I've ever been more excited to take a shower in my life. They will take off the ECG suction cups, I will look like I was hugged by an octopus once again, and after my shower they'll put everything back on. Quite sad, to be honest, but it is what it is.

17:30
They just stripped a cut glove over the cannula so I can take a shower.

21:53
The busiest day is now over. What a day... I'll go to bed right away so I won't stay up as late as I did yesterday! Goodnight everynyan!

Day 005 of the Multiple Sklerosis Study
(Compound Day 2) Saturday on 2024-09-07
Groningen, Netherlands (GMT+1)

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

06:30 Intravenous catheter (Check)
07:15 Telemetry (Continue)
07:15Urine collection (Continue)
07:30 Wellbeing (Pre dose)
08:30 Telemetry (Start subject lay down [24h])
08:40 Telemetry (Make ECG print [3x])
08:45 Telemetry (Stop subject lay down [24h])
08:45 Vital signs (BP, HR)
08:55 Blood sampling

• PK: Sample 12
• PL PD 2-AG: Sample 105
• SR PD 2-AG: Sample 307
• Remove Intravenous catheter

8:55 Transfer bloodtubes
9:00 Urine collection

• Stop container 3
• 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

Water intake: 7 (glasses, one tea, one compound)
Headache 19:00

07:02
I woke up through my second alarm (one at 06:50, the other at 07:00), and then dropped my phone. I have to sincerely apologize to my entire study group.

Also look at my schedule!! Look at how small it is for today!

08:55
I did my blood samples and they went fine, but after removing the cotton wool they put on for sleeping, parts of it got stuck or were left around the cannula (some of it got stuck inside the tube that goes to the left from my perspective), the assistant said it was fine. Whilst trying to clean a clot, they also put in saline solution (salt solution) halfway, and then drew blood into the same syringe by pulling it back out. It was all probably still sanitary, just very unconventional compared to the other days.

09:07
I just got done with some other sampling, when I realized they forgot to take out my cannula. I told a doctor that we may need to do it after my breakfast, he said “we can do it quick”, so he actually did take my intravenous catheter out.... with 45 seconds left to go to the breakfast. Sadly it bled through the paper they taped over it a bit, but when I arrived at breakfast I was “on time” (after eating one piece of bread so that I technically began eating).

09:10
Look at my breakfast (picture 1), breakfast is always an SB (study-bound) breakfast, meaning the food I have to eat is very much controlled. I am allowed to choose two savory and two sweet toppings.

09:34 (written afterwards)
I googled the compound name and figured out our sponsor was Roche! They intend on publishing this in some “high-impact journal” like Nature! Hehe, I can always claim I helped publish a study in Nature. “Yeah, I was there, I was the lab rat”.

There was much less anticipation in giving the drug today. Just two assistants giving me the medicine. We read through what it said on the compound flask. I've been trying to get a picture of it when they're not looking, but they're guarding it like gold (for obvious reasons). Apparently this compound is made at ICON only 48 hours in advance and specifically has my name on it. Very interesting to see what can be done if good money can be made from it.

09:42
Just took the compound for a second time! Let's see what effects I'll have today. I also have very little to no appointments today, so a lot of rest and having fun.

09:56
A doctor is talking to me and claims to speak like... dozens of languages? Who is this guy? “it's just an Afghani language...” what does that mean? “My friend is from this region of Syria where they speak [...], so I learned that too” WHO ARE YOU?

10:14
Oh man, I'm so happy there are no cables or catheters running through or around my body anymore!

11:59
I just had the tiniest morning “snack” of my life

12:14
feelin' good

21:02 (written afterwards)
I had one of the worst headaches! Like I could barely concentrate when talking due to my head hurting. This isn't mild like before, although it's in the same area. I will get a good night of sleep, though, maybe that does it!

23:04 (written afterwards)
They woke me up saying I should wear my alarm wristband more tightly, because apparently it sounded an alarm. I believed that the night had already passed and was ready to get up, a swift look to the clock showed me that merely 15 minutes of me lying in bed had passed. Maybe I have not been sleeping right these past few days!

Day 006 of the Multiple Sklerosis Study
(Compound Day 3) Sunday on 2024-09-08
Groningen, Netherlands (GMT+1)

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

07:30 Wellbeing (Pre dose)
07:45 Physician task (Neurological examination)
08:15 ECG (3x measurements])
08:15 Vital signs (BP, HR)
08:25 Blood sampling (PK: Sample 13)
08:25 Transfer bloodtubes
08:25 Cogstate (Neurocognitive Test Battery)
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
13:30 Bowling
15:00 Afternoon snack
17:30 Dinner
19:00 Wellbeing
20:30 Evening snack

Water intake: 6 (two tea, two compound)
07:05 - 12:00 headache going from a 4-7
14:00 - 15:30 headache going from a 7-9
07:17 - Now stiffness / soreness in my muscles

11:46
I had a headache the entire morning. It became worse and worse. For some reason, it only stops when laying down. Maybe it's a vitamin D deficiency caused by not being outside as much? Maybe it's the air here being super sterile, with no humidity, and low tmeperature. Maybe it is my new cycle, or the stress of so many appointments in a day? However, laying down horizontally does the trick every time. Whether eyes closed or open, outside, sitting or standing, as long as I'm upwards my head hurts? Very odd!

I was also just informed that we CAN get paracetamol even during this study. Let's hope my headaches are no more!

15:30
Thanks to this nice commentator @gabriel and one observant assistant, we noticed that my headaches are most likely caused by a hole in my spine through which spinal fluid has been leaking into my back since the day of the lumbar puncture. Apparently it “sounds way worse than it is.”

Since the headaches began before I even took the compound, many passed it off as being due to the environment, stress, or even the dry air. However, checking through my own recordings and an assistant doing the same with theirs, we noticed the headaches only began on the day of the CSF sampling (lumbar puncture). That day as mild headaches, the day after as even strong headaches. Yesterday evening I think it was the strongest, where I couldn't even talk to an assistant about my wellbeing due to not being so well. The only reason I didn't ask for a painkiller was because I thought we weren't allowed to get one.

The assistant who was only supposed to watch us during bowling figured this out and explained what can be done in such a case. I'm a bit surprised none of the assistants who were doing my wellbeing and heard about or saw my symptoms didn't realize this. My headaches are getting worse each day and disappear the moment I lay down. “Textbook example of a lumbar puncture headache” The assistant who came to watch us bowling said. She jumped to the defense of all the assistants who didn't notice, however, and said that many don't know we had a lumbar puncture. She explained that there is a procedure capable of closing the hole in my spine, and that she doesn't know if it may also close itself. As the next lumbar puncture is on the 12th of September, sadly the doctors can't just use the same, apparently still open, hole. It would need to be closed either way.

To be continued...

idk why but I don't want to wear the alarm wristband any tighter

In case anyone is wondering what a Cogstate test is like!

This is how a Cogstate (cognitive battery) test works:

Every test has a practice right before it so you can sort of test whether you understand what is being asked of you.

First, they check whether your YES and NO buttons are even working, so the screen simply shows “Yes” or “No” and you have to press accordingly. Also the No button is on the left and the Yes button is on the right for me.

Then, you are asked to press Yes when a card turns face up on the screen. Basically a stack of cards is shown and a top card (always the same Joker card) is turned around, as soon as that happens you're supposed to press the button. I assume this is to test your reflexes.

Afterwards you're supposed to press “Yes” when a red card is shown and “No” when a black card is shown. I believe this is to test not just your reflexes, but your processing of information + reflexes (you can't just press the same button as soon as something changes on screen, you need to press the right button).

The last card test is the trickiest, now you need to press “Yes” when the same card is shown after the other on screen. So, when the test begins, you immediately need to press “No”, as no card has been shown previously, but if the same card is shown right after, you'll have to press “Yes”. If a different card is then shown, you'll have to press “No”. I believe this is to test how swiftly you can process information, or even the same input, without the same outcome. In the previous test, every red card was a “Yes” and every black card a “No”. Now, you can see the same card twice and a different response is required. You can't just associate one image with a reaction, you need to react based on the context of the images before. I would assume that tests a different ability!

Technically, there is only one maze, however, you're asked to complete it multiple times. You can't use the “Yes” or “No” buttons anymore, as with the previous tests, you'll have to press things on the screen. You have a starting point (top left) and an end point (bottom right) and you're supposed to find the invisible path from the beginning to the end. You can only guess, but are then asked to repeat the maze over and over again. I think this tests both response time and memory!

Here you are asked to associate a sequence of numbers with a randomly generated set of symbols. The computer shows you multiple numbers one after the other, you need to press the according symbol. At the top, you are being shown what number represents what symbol. The symbols at the bottom, however, are not in the same order as the numbers at the top. This tests pattern recognition? Maybe? After a short time I can't concentrate too well on this test, so I stop performing well.

The End