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stumbler
11 months ago

@rachaellouise , the Barts MS Blog is a good place to start, with views on most developments from a well respected team:-

http://multiple-sclerosis-research.blogspot.com/


cameron
11 months ago

I agree. Unlike a lot of sites it provides comments on research papers rather than just quoting them verbatim. It puts the many claims about cures/meds/treatments into a realistic context – for example, a research paper may look impressive but the Barts people may question its validity based on the size of the sample or the research methods. It also gives you insight into the team’s own MS research and their views on clinical practice. You’ll see the most up-to-date ‘direction of travel’ as regards treatment choices, so you should be able to gauge if your own neuro team is up to speed.


mmhhpp
11 months ago

I agree, Barts


californiadreamin
11 months ago

@rachaellouise

i can list what i follow pretty much every day. When you say true facts, it can be a bit tricky, because something are not always known to be true, but I believe all of the below are good to be familiar with. I also read a lot about a bunch of other autoimmune diseases and see if there are things in common (anti inflammatory diets etc). Its also good to see what lifestyle changes are positive for other health reasons, because if you have MS you dont need anything else. Here is my list of things I keep updated (I look at a bunch of others but dont think they good enough to list below):

Barts as others above have said: http://multiple-sclerosis-research.blogspot.com/?m=1

I follow this because it has a good summary of MS news.

Multiple Sclerosis News on Symptoms, Diagnosis and Treatment

Ms Translate sometimes has good interviews that others dont:
https://m.facebook.com/MStranslate?fref=ts

Interesting doctors from time to time
http://wwwmsviewsandrelatednews.blogspot.com/

Not super active but just a blog i find interesting:
http://www.wheelchairkamikaze.com/?m=1

OMS (my wife follows this) : https://overcomingms.org/news-research/news/

Specific questions being answered (detailed questions and I try to answer these and see what my answer would be compared to the dr):
http://www.healthcarejourney.com/q–a-for-virtual-ms-center

Here are some youtube channels i follow:
https://www.youtube.com/channel/UCSJH0aznb4nQz7N6JchxxtQ
https://www.youtube.com/channel/UCBX59hTKqNSsVcvOGZJz88g
https://www.youtube.com/channel/UCkQopiiFbAo0zS_9BmRF3Bg

Here are some specific videos maybe worth glancing at:

https://www.youtube.com/watch?v=Su8CXsxFmL8 (video from Rocky mountain center)

The supplements we are using
(there were others we considered but this is what we started with) :
D3 (not D2)
Alpha lipoic acid (the r type) not to be confused with the one from flaxseed (https://www.youtube.com/watch?v=JTGVHQt66YA&feature=share)
Biotin (its not high dose just the normal stuff you can buy) – Keep following https://multiplesclerosisnewstoday.com/2016/04/27/meddays-md1003-reversed-disease-progression-in-not-active-progressive-ms/

B1
B12 (because we are following OMS and lisa would likely not get enough B12)
Probotics (UCSF has a lot of research on microbiome and MS, they have several studies going on)
Turmeric
flaxseed oil (20ml a day)

Conferences:

New things are usually announced at these.

ACTRIMS – More focused on diet, gut this year in 2017
ECTRIMS – coming up in the fall (this is the big one) happened in Oct 2017
AAN – not just MS but really big one in boston.

Apps for iphone usually available with abstracts not available anywhere else

Things of interest: doctor bias

We can see how much money each dr is getting from organizations in the US
https://projects.propublica.org/docdollars/doctors/pid/859196

Things of interest: EBV

Dr pender had some great results and presented at AAN 2017, I think he has sold his work to Atara below:

https://globenewswire.com/news-release/2017/04/20/963447/0/en/Atara-Bio-Announces-Positive-Interim-Results-from-Ongoing-Phase-1-Trial-of-the-Autologous-Version-of-ATA188-in-Patients-with-Primary-and-Secondary-Progressive-Multiple-Sclerosis-MS.html

Things of interest: FASTING

Fasting (we arent doing this yet but I would like to consider it):
Here is the article on FMD that I think is worth glancing at:

http://www.cell.com/cell-reports/fulltext/S2211-1247(16)30576-9

For the human trials, it wasnt setup in a way where I think a lot of value can be derived. We are thinking it would be worth considering down the road still, but since it seems to lower the lymphocyte count around 20% not sure if its wise with Tecfidera (only for a short while). The main reason to try it would be for the potential remyelination benefit when coming off the FMD.

In addition the exact formulation isnt generally available but a similar/close product is:

Home

Not what to think about the motivation (conflict of interest and acknowledge section of that article), not sure its any worse then any other product that is being sold by any other company.

Things of interest: STEM CELLS

This video contains the best overview of stem cells i have seen to date:

If you are curious on HSCT here is the best review of the whole process from someone that did it orginally:
http://forums.activemsers.org/forumdisplay.php?f=6

video of Dr Burt (the one we would use in the US talking through it)

Stem cell article:

Clinical Trial Supports Stem Cell Transplants to Treat RMS Patients with High Disease Activity

Things of interest: NEW DMT’s
This is the drug I am most hopeful for (guessing its a 50/50 crap shoot it works but super safe it seems). The drug failed initially but now it seems to be showing reasonable promise in remylination
https://www.geneuro.com/data/documents/GeNeuro-presentation-January-2017.pdf

Things of interest: JCV

http://stm.sciencemag.org/content/7/306/306ra150

Things of interest: Microbiome/GUT

Lots of articles here and there, but nothing I would recommend to watch just yet.

Things of interest: Sunscreen

Not sure why its not picked up more but the study was good and seems like all else being equal I would switch sunscreens.

Could Sunscreen be a Treatment for MS?

Things of interest:

Unrelated to MS but I watched this a year ago before I knew anything about MS. I would watch this and see what you think of OMS or any other lifestyle changes by the end. I found it fascinating even though there is no relationship. It gives me much more confidence in OMS.

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