Welcome to Friendica.Eskimo.Com

Home of Censorship Free Hosting

 Eskimo North Linux Shells, E-mail, Virtual Machines, Web Hosting.

E-mail, Web Hosting, Linux Shell Accounts terminal or full remote desktops.

Sign Up For A Free Trial Here

Please tell your friends about federated social media site that speaks several fediverse protocols thus serving as a hub uniting them, hubzilla.eskimo.com, also check out friendica.eskimo.com, federated macroblogging social media site, mastodon.eskimo.com a federated microblogging site, and yacy.eskimo.com an uncensored federated search engine. All Free!

mastodon - Link to source

@ErikUden
~~16 Minuten Transferzeit in~~ okay EN
I would have not dared to allow only 16 minutes transfer time in Leer (from train onto bus). When I sometimes had my environmental moments and decided to do my business trips by train instead by car I chose 30 minutes between two trains minimum (and how often I had to jog / run to get my connection and that were mainly ICEs)

Time expenditure: double compared to car (I never had to use race tracks like F => B which is really faster by train. When you do not have a direct ICE connection from A to B forget the train)

Would be so important to have convenient train network. Und this circumstances: I will not waste time and money with Deutsche Bahn. Fuck them all.

#NowTräwelling

mastodon - Link to source

@ErikUden

Bei den Effekten frage ich mich immer: wie viel davon ist wirklich von den Medis und wie viel entsteht "im Kopf" des Probanden alleine aufgrund des "wissens" das da was neues/ungewohntes in den Körper kommt (kommen kann).

Und ich denke nicht das die Placebo-Kontrollanten das komplett herausfiltern weil jeder anders im Kopf gestrickt ist und andere Reaktionen erzeugt/provoziert somit kann man nicht 1zu1 sagen "ah das Symptom hatte einer der P-Probanden, das können wir abziehen"

mastodon - Link to source

@ErikUden As someone with weird diseases (and a cousin with MS), thank you, thank you, thank you. I hope you get the real thing and that it helps.

I'll be bookmarking your post so I see your future updates.

PS I cringed originally when I saw "lumbar puncture" and then realized that most of my tests involve needles (kidney and lung). You got this 💜

glitchsoc - Link to source

Tomorrow I will begin my participation in a medical study for the coming 19 days, testing a compound meant to treat multiple sclerosis. The specific compound name is RO7268489, which has been tested on 67 people in four previous studies as of yet. Both the FDA and the EMA have not approved this compound for a treatment.

Multiple sclerosis (MS) is caused when a protective coating on nerve cells (called myelin) is damaged in the central nervous system. A majority of approved drugs for the treatment of MS only influence the immune system in a way that relapse rates are reduced. The compound I am testing targets mechanisms in the brain responsible for worsening the disability, hence improving neurological functions.

My study is the fifth of this kind, ever, and is conducted in Groningen (Netherlands) by the ICON plc, a private healthcare intelligence and clinical research organization trading at the Nasdaq. The sponsor of this study is Roche (F. Hoffmann-La Roche AG), a private healthcare company. The specific code for the study I'm participating in is PRA-RPUBIU40-0H13WG.

This compound is well tolerated in doses below 2mg, and due to unwanted side effects¹, the medical company sponsoring this study has decided to only continue testing below that dosis. Before this, it was tested until 6mg.

This part of the study is a “Multiple Ascending Dose” study, meaning it's supposed to evaluate safety and tolerability of the compound on the human body, as well as how quickly it gets digested, or how the human body generally responds to it (pharmacokinetics). Three groups of the compound are tested, each divided in two subgroups, one of which truly takes the compound, the other gets the placebo.

Group 1 gets 0.2mg of the compound
Group 2 gets 0.6mg of the compound
Group 3 gets 1.0mg of the compound

I am part of group 2 (b), which has 6 subjects taking the real drug, and two taking a placebo, meaning there's a 25% chance I'm simply drinking a glass of water for three weeks.

The research facility aims to also see the effects of the compound in the body (pharmacodynamics).

In order to do so, they will take cerebrospinal fluid samples through a lumbar puncture three times throughout the study.

If anything happens to me in the coming four years as a result of the effects of this compound or study, I have an insurance of 650,000 € (same amount is paid out to my family in the case of me dying).

Whatever I'll experience throughout the coming weeks is what multiple sklerosis patients will have to listen to as disclaimers whenever they'll take this medicine once it's approved.

I'll document everything I experience, both side effects and my overall thoughts, in this thread. That is for both my own sake, and maybe to document a piece of medical history, if it ever comes that far. Additionally, this may not be something you hear of a lot, hence I wanted to put it out there.

If you have any questions, I'll be happy to answer them!

¹ Side effects include: anxiety attacks & increased heart rate, hyperventilation, motor unsteadiness, severe paranoia, trouble speaking, trouble completing sentences, trouble verbalizing thoughts and a feeling of loss of control (which lasted 3-5 days until full recovery), increased suicidal tendencies

This entry was edited (1 year ago)
in reply to Erik Uden 🍑

glitchsoc - Link to source

Erik Uden 🍑

At 06:16, writing this as I'm walking: I have just left my house and will begin the drive to Groningen via public transport shortly.

2024.09.03 | Trip to ICON
--------------🌱🚂🚄🚝🚇🌲-------------
╔═════[🇩🇪Hannover🇩🇪]══════
║
╠═🔴╡06:46 Hannover
╠═🟢╡09:14 Leer (Ostfriesland) zm
╠═🚝╡IC 2436 249 km
║
╠═════════Leer═════════
║
╠═🔴╡09:30 Leer (Ostfriesland)
╠═🟢╡10:25 Groningen Hoofdstation
╠═🚍╡Bus 72009 68 km
║
╠═══════Groningen══════
║
╠═🔴╡10:44 Groningen Hoofdstation
╠═🟢╡10:53 Corpus den Hoorn Zuid
╠═🚍╡Bus 10
║
╚═════[🇳🇱Groningen🇳🇱]════

Stats:


Time Interval Travelled
06:46 - 10:59

Total Time Travelled
04:13 h

Total Distance Travelled
307 km

Live Track my Journey


#NowTräwelling
[1] traewelling.de/status/3313315
[2] traewelling.de/status/3314373

Notes


06:45
The IC (train) by :db_b: I'm traveling with has just announced, one minute before departure, that it will not be stopping in 8 out of the 11 stops. Leer (where I need to go), is one of the 8 stops my train will simply not go to. I will have to redo the entire plan for today, as the bus going to Groningen from Leer is only going once every two hours.

07:12
Apparently that's not the case?? We're stopping at one of the non-mentioned stops. I cannot comprehend why they would make a three minute announcement about what stops they take or don't take simply to then back down from this plan entirely a minute later. The German public transportation system is a mystery to everyone involved.

07:17
Fully confirmed that's not the case. They just wanted to give everyone on board a heart attack. I certainly didn't hallucinate them saying that they won't stop at Leer, especially because some people got up and left as a result of it.

07:53
Final meal eaten. Today is going to be a good day!

08:33
Just now watched the ZDF Magazin Royale from last week. Did not know they discussed multiple sclerosis there as well! Just to note, the preparation for this study, as well as my involvement, has been going on for multiple months. Would be hilarious if I saw that show and then decided to participate here, as they specifically discussed how behind research on the topic is. However, you cannot join medical studies that easily and quickly (luckily).

First time I've driven to the Netherlands for this study was on the 19th of April, and a lot more happened before then: mastodon.de/@ErikUden/11229656…

09:16
Just arrived in Leer (East Frisia) and am now waiting at the central bus station for the bus to Groningen! Despite my worries, I have arrived.

10:03
I just drove below the largest pedestrian bridge in Europe! Haha. There was also a nice lake next to it.

10:23
I have just been informed in German with a Dutch accent that we will be driving through a new tunnel for the first time in the history of this bus route!

10:27
Arrived in Groningen. This place has become my second home! Let's hope it stays that way.

10:42
Inside the Bus, now going to the research facility. I should be there about an hour in advance, just how I planned.

11:06
Arrived at the ICON facility at Van Swietenlaan 6, 9728 NZ Groningen, Netherlands. Since my official arrival time was 12:00, I'll have to wait a bit. However, this is much better than being late.

11:24
An assistant came and guided me through everything. My weight was measured, three blood samples were taken, and my wellbeing was checked.

ErikUden's Reise mit Träwelling - Träwelling

traewelling.de

Erik Uden 🍑

2024-04-19 06:54:03

glitchsoc - Link to source

I'm on a Dutch bus!! I do not know where I am going!!

This entry was edited (1 year ago)
in reply to Erik Uden 🍑

glitchsoc - Link to source

Erik Uden 🍑

Picture of my last meal before the study. Starting 4 hours before my screening at arrival (12:00), I am not allowed to eat anything, nor drink sugary / caffeine based beverages. For other studies it's sometimes 8 hours or more, so this is pretty mild and I can even have a breakfast the same day.

For the past 6 months I was not allowed to do weed.
For the past 2 weeks I was not allowed to eat poppy seeds.
For the past 48 hours I was not allowed to drink alcohol
In 24 minutes I am no longer allowed to eat anything.

My fast begins soon. I wish a nice breakfast to everyone!

A picture of a pure water bottle with a bag of bread based snacks from a store (Backfactory). A bread with eggs, one with cheese, and a vanilla-chocolate snacks.
This entry was edited (1 year ago)
in reply to Erik Uden 🍑

mastodon - Link to source

Cykonot

Good Luck and God Speed!

Here is a related post I made the other day, mentioning a promising compound which seems to promote the production of oligodendrocytes, the cells which maintain myelin sheaths:
mas.to/@cykonot/11303051328172…

Of course, that does not mean that it will effectively counteract the specific processes underlying MS in any case. But the compound is further along than the one you are bravely helping develop.

Thank you very much! I do not have MS, but you're important.

Cykonot (@cykonot@mas.to)

Stereocilia are organelles used by the inner ear for hearing. Because of this, I was reading about CNTF-related (ciliary neurotrophic factor) drugs to restore hearing loss today.
Cykonot (mas.to)
This entry was edited (1 year ago)
in reply to Erik Uden 🍑

mastodon - Link to source

Gabriel Adrian Samfira

Hi Erik! Thanks for sharing your journey!

I can't seem to find much about RO7268489 on google. Is there any info out there on what it targets? Is it some receptor? Some immune cell type? Is it an protagonist for cells involved in myelin production?

There are a lot of exciting new drugs in testing for MS and other neurodegenerative diseases (and not only).

Good luck!

This website uses cookies. If you continue browsing this website, you agree to the usage of cookies.

⇧