Temp audio issue at min 8. Nerve REMYELINATION - WHEN will MS pts get this revolutionary therapy?
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- čas přidán 6. 06. 2024
- PODCAST _ Professor Stefano Plucino - a leader in this field who is a working MS Neurologist and researcher at the University of Cambridge in the UK helps us understand what is coming, when it will be here and how you can get involved with Clinical trial of these amazing new therapies.
Always ask your doctor - press them on this - what6 trials are running and how you might get involved. As ever, much of the burden falls to us but don't be disheartened.
Go to www.clinicaltrials.gov and you can search by condition (MS I guess!), country, recruiting status, eligibility criteria and there will always be a contact you can email directly or share with your neuro to refer you. I'd just send the email myself. Time is not our friend in MS.
If you are in the UK then the best thing you can do to indicate your interest and availability for clinical trial is go to ukmsregister.org and register there. You can take part in all sorts of research through this amazing hub.
If you have any questions then drop a note in the comments and please don't forget to like and subscribe on your podcast platform of choice. It really helps get this content in front of you and likeminded people. Thank you.
Please Subscribe to the channel, ring the bell to be notified of new content, and if you really enjoy it then please support me by becoming a Patreon supporter. Thank you.
/ themsguide
theMSguide.com is nothing without your help. Please get in touch and let me know what you need to know. I'll reach out and do my level best to get the best answers for you.
After 31y of #MS I have accumulated a wide network of contacts, so I am sure we can work together to answer any questions you have about MS. I look forward to hearing from you.
Email: dominic@theMSguide.com
Twitter: @theMSguide
LinkedIn: / themsguide
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I'm glad the audio came back on.
Great interview ❤
The audio and Visual from the doctor cuts off from 7:00 to 9:00 minutes.
I just saw. So frustrating. Trying to move to podcasts. The software platforms charge for a flaky service. @Riverside screwed up the genetics one. I am trying @Podcastle and it is problematic as well. So frustrating and the ‘tech support’ functions just return hollow answers. Thanks for the sub - appreciated.
#Sharingiscaring Dom
He mentioned Cladribine, in what aspect is it being investigated? Great Vid!
In the ChariotNS trial. In the uk. Looking at retaining upper limb function.
I’ll happily volunteer as a recipient subject (no placebo).
Are you in the UK? Are you signed up to the MS register?
Not in UK 🙁or signed up to MS register @@theMSguide
go to www.clinicaltrials.gov to see any trials near to you.
Thank you @@theMSguide
How do you get in trials in the United States?
These trials are for very advanced MS. Check out clinicaltrials.gov to see what trials are running near you.
Dom, quick question not regarding the vid as i'm only a minute in..... the money bonus thing on the comments... how much do you receive from the donations? Does youtube take a big cut?
Nope. It is pretty fair. You can also use Patreon if you are happier. They provide a service I could never manage to.
He has no idea how hard it is to get in a Trial...kind of shocking...
My experience is you express interest, you’re assessed and if you meet the criteria you’re in and if you don’t you’re not.
The criteria can be the undoing of a person but that isn’t really his fault.
Go to clinicsltrials.gov and search. It is all there. What is happening, where, who is running it, what the inclusion criteria is, when.
Had MS 15 years grateful for the DMTs but desperate for the drugs to repair damage.. I'm scared that in 5 years we will still be getting the news that maybe another 5 years we will hopefully be there
@user-ts1hw3er8z not being cruel, I’m in the same boat as you. Don’t hold your breath for anything meaningful n the next 20y. :(
Maybe it was brilliant, but we can't hear it.
The video? Works for me. Does it cut out?
@@theMSguide Yes, he froze up and there was no sound, but apparently you could see and hear him. It came back after a few minutes.
thanks. Deeply frustrating. So that is Riverside and Podcastle that have promised the early and failed to deliver the most basic reliability so far.
I was a fool to trust it. 😢
@@theMSguide We could hear most of it. It was just near the beginning, and I had no idea when or if the sound would come back, but it did.
@NYNC88 sorry about that.