Multiple Sclerosis Science and Research | MSers React 

Do you feel represented in the development of MS Research?

Thank you! I also have MS and found myself nodding a LOT, (as if I was an actual participant in the conversation.) Very much appreciated .

This is such a great discussion! Thank you for sharing!

I wish there would be a worldwide network for MS where data records could be uploaded / anonymously / scans / age / bloodworks / gut microbiome analysis etc etc and have a huge dataset for which you could use AI / machine learning techniques! Sorry for the spam 😅 great discussion 😃

Thank you all - 🤝

Not to bothered about a cure for MS would prefer a fix to regenerate myelin then you could take the tablet and your symptoms are better. I can dream. : )

Well almost everyone starts off with RRMS (the vast majority 80-85%) - if you can halt MS in its track at this stage for as long as possible PPMS diagnosis will hopefully be delayed for as long as possible. So in a way it is helping everybody with MS delay the PPMS transition. Also I wonder about the 15-20% that are diagnosed with PPMS straight away - I would guess a large proportion of those are individuals in their 50s, 60s, 70s who perhaps have lived with MS symptoms for a while buy have never had a DMT due to no diagnosis at an earlier stage. Ocrevus is now quite a decent PPMS dmt though now I believe? Also looking at alpha lipoic acid it seems that it works quite well in reducing the brain atrophy rate (by something like 60-70% I believe?). The atrophy rate in older age seems to be what leads to the continuous PPMS progression where older lesions start to impact individuals as functional reserves are reduced. I feel like research trials are far too long to get to results. 2-4 years minimum to test one particular aspect of a drug/supplement, then another 5 years before it has any chance of maybe being used. Even now after 50 years there is still ambiguity about vitamin D in trials - I mean come on? xD I half wonder whether these pharmaceuticals even want a cure. Far better to keep someone on 50-100k medicine for 30-40 years than cure them for 100k in 1 year... That's me being cynical though xD Hope to be wrong on that one. Google scholar - pro tip just read abstract/results or skip to conclusion :P

Great conversation. I've had a lot of success using AI apps like CHATGPT to understand what's out there in simpler terms. I ask it to summarize an article in easy-to-understand language and I ask follow-up questions to understand how it could be relatable to my condition with MS. AI may become something terrible in the future as it grows. Still, it's a useful tool right now.

I feel like there’s not enough research about Late Onset MS. 😢

I stopped at the 24:30 mark to write this comment, but I will continue the video after - my guess is that most doctors are more "concerned" with medicating us patients, as many of them I am sure are funded by the drug companies or have a hand in them in some way, shape or form. They might get kick-backs for having a patient on a certain drug... I am not saying that's the only reason, but you never know what makes people tick. But then again, I am sure there are those doctors that are in fact looking for a cure. I pray and hope that they are not "only" focussed on stopping the progression, but are actively looking for ridding us of this silent killer... I am part of a clinical research study, and am not 100% sure if it is for my Tecfidera or not, but I will do what I can to help researchers find a cure. I give blood 2-3x a year and have an MRI and physical testing done once a year. Whatever helps, I guess.

try being secondary progressive we get sh*t

Don't think they do placebo nowadays do they? Thought they always used another DMT and compared the outcome between the two groups? :d

I get thrown of the FB site because I speak about what use are chatting about I drugs big pharma's not doing enough.. the leading professor on ms is retired and was only say the same as him in regards to big pharmacys coining it in.

Sup homies! 🔥🔥🌄🔥🔥

it's crazy that they don't believe its genetic when there are siblings that have MS. My cousin and I have it and im sure our older generations had it but they didn't know what to call it.