#Remyelination
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- Опубліковано 21 вер 2022
- Remyelination. A fascinating talk with a dose of realism regarding the timescales before we, the patients, can benefit from therapies.
[CORRECTION:- the trial Will talks about will end late 2023]
Dr Brown discussed the research his team is doing at Cambridge (Addenbrookes hospital) and how they are looking for volunteers. I want to stress that in this case the drugs being tested are already on the market, are well-tested, and are very safe agents. More #MS patients are needed for the trial.
These are the criteria:
"All participants will need to attend fairly frequently: at least 7 visits over a 38-week period are required. Participants should have relapsing-remitting multiple sclerosis, be aged between 25 and 50 years, able to walk for 100m (with no more than one walking aid), and should be taking a disease modifying drug for their MS"
www-neurosciences.medschl.cam...
Here is a bit more information on the trial www.mssociety.org.uk/research...
To find drug trials near to you it is easiest to search at www.clinicaltrials.gov This is a pretty exhaustive list but does not cover many very small local trials so do ask the MS Nurses about the MS research team nearest to you. They are usually very happy to talk about what they are involved in and how/if you can take part.
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Dr Will Brown is excellent
I'm in the US and have PPMS. I appreciate the research being done but it's so frustrating. I've had MS for 26 years, have used a wheelchair for 26 years and wasn't able to do anything physical with my son. Now I have grandkids(I'm 50) and hope remyelination is something that happens in the near future.
Likely 10y from now. Sadly.
Tbh remyelination won't help you
@@theMSguide I think you're right, hoping I don't get much worse in that time
Great Video keep up the good work Dominic. Thank you for all you do
I appreciate that
my experience 5 years is to long I don't want a tested treatment a treatment at all is better than continuing torture
Ugghhh, I have hope and I am super optimistic that this will happen but it just takes too long.
If the government on both sides of the pond can fast track vaccinations and antivirals for Covid, it just seems like they could make an exception for certain diseases as well. 🤷🏻♀️
Just my opinion. Great video and keep bringing us great content. 🧡
Thanks, Jess.
nice vid. thanks muchly brother. Are the trial results out yet?
I’d check clinicaltrials.gov as anything is referenced there. Also googling around Will Brown, Clemastine, Cambridge, remyelination ought to throw up the latest news.
PPMS for 13 years, I listened to my body and have intermittently fasted for longer than that. My friends told me it was so very unhealthy. Seems that if we listen, we have some of these answers within.
I have PPMS for 1 3 years too lol!
@@velocitygirl8551 I hope & 🙏 you are doing wonderfully well.
Is there any news about how phase 3 is going? Any improvements? This research is my the greatest hope.
If you go to clinicaltrials.gov and search for the Clemastine in MS trial you will be able to read any publications and updates.
@@theMSguide thank you ❤
What were the results then?
The trail ended late 2023 so it will be a bit longer. There is a view that it can promote remyelination. But with many big BUTs. It is an anti-histamine that is longer used because of its side-effects. One of them is tiredness. The trial used it in the highest allowable dose so I am not sure how much that affects MS fatigue. For example.
When the results are published expect a small fanfare if they are positive.
I've had PPMS since Augest 2016 when I turned 43. Luckily I still walk without a cane, but I'm getting worse. Ocrevus has slowed it down, but I'm very eager for remyelination, oligodendrocyte regeneration, and axonal regeneration. It's good to hear the clemastine/metformin research is continuing. Thank you for that.
Do you think a low carb or no carb diet, such as keto or carnivore, would yield the same results as taking metformin?
Metformin is a fasting mimetic. To achieve the same effect you want to be pursuing intermittent fasting.
@@theMSguide Gotcha. Thanks for the info.
How does one in a wheelchair get into one of these trials? It’s always my EDSS that keeps me from not qualifying.
If you are in the UK you need to get onto ChariotMS. I can put you in touch if you are in the UK
@@theMSguide I’m am not in the UK. But thank you.
It is exciting to repurpose well-known drugs with known side effect profiles. Although I recognize the need to wait until the results here have been published and potentially replicated in a phase 3 trial, a problem is that clemastine has been taken off the market in several European countries. Is there a solution to this? Are there any other drugs that could be repurposed that could have the same effect as clemastine without excessive sleepiness as a side effect? Secondly, how would this work if effective and implemented? Would we stay on metformin+clemastine (or similar profile drugs) for an open-ended period of time? Thank you!
Great questions. I wish I knew the answers but I’m not a doctor. You’ll find Will’s email on any paper he is an author of reference on. He is best placed to answer these questions.
What is PPMS?
Primary Progressive Multiple Sclerosis. You’ll find a lot about it on Google but best to go to @AaronBosterMD on UA-cam.
@@theMSguide got it. Thanks
@Sbannmarie298 good stuff
remyelination will never happen. Rather than wait for 10 years, I would rather commit suicide than live in fear of being disabled. THIS CANNOT BE JUSTICE!!!
I don’t know why you say this. All the reasonable evidence points to more than one therapy being available in a 10y window. As Dr Brown say in the video. I have lived with the fear of becoming disabled for 28y now. I intervene with the best DMT i can, exercise, sleep and a reasonable lifestyle. Working so far.
@@theMSguide We are in 2022 and you say that medicine has developed, there are still treatments according to your taste, continue to bullshit as long as there is no remyelination
No need to swear at me nor level accusations. I appreciate how frustrating MS is - having had it for so long myself - but I look at it like this: when I was diagnosed there were no DMTs and today there are nearing 20. I am on a trial for a period over adjunct therapy. Things move on, slowly.
@@theMSguide I'm going to commit suicide because myelin isn't and won't be repaired
I think you ought to share your feelings with a professional. If you are in the UK you can call the Samaritans on 116 123 or go to samaritans.org from anywhere in the world.