Clinical Trials

[TDonahue58]

Does anyone have any update on the clinical trials ongoing or maybe completed regarding Biotin?

[rjoneslaw]

when did u hear there was going 2b trials conducted

[TDonahue58 in reply to rjoneslaw]

from my Neurologist at the University of Chicago.

Also, I heard that there could be trials on Alpha Lipoic Acid?

[rjoneslaw in reply to TDonahue58]

I don't do trials that require my dna or for me to take drugs

[kdali]

It’s in phase 3 from what I could tell from a quick google search.

[Frances_B]

About 6 weeks ago it was announced by MedDay that the Phase 3 trial results did not meet the required end-points.

medday-pharma.com/2020/03/1...

However, there have been many thousands of people around the world who have been taking biotin without being part of any trial and although it is anecdotal "evidence" there are many who say they have experienced benefits. Some people believe there is a subset of PwMS who have had genuine benefits from Biotin, and further analysis of the trial results may indicate who such people might be.

[Rileymom in reply to Frances_B]

What is PwMs?

[Frances_B]

MS related acronyms as follows. (note that "person" can also be read as "people")

PwMS = Person with Multiple Sclerosis (MS)

PwRRMS = Person with Relapsing Remitting MS

PwSPMS = Person with Secondary Progressive MS

PwPPMS = Person with Primary Progressive MS

Some people use the concocted term "MSer" to denote a Person with MS but there have been surveys which have shown that most PwMS don't like this term. This is probably because the "term" MSer is using a "physical attribute" as the defining part of the term and this goes against non-discriminatory language protocols. Some people think these protocols are taking things to politically correct extremes, but when you actually think about it they are far more appropriate than the old use of language was.

People are people first and foremost and they are black/white/pink/purple, gay/lesbian, parents/ children/ aunts tall/short/fat/thin etc second. We don't generally define other people by their health conditions e.g. "Heart Attack Jim" or "Blood Pressure Mary" or "Diabetic Dave", so there is no reason why people with other more uncommon illnesses be labelled with their condition. I am me first, and my MS is irrelevant unless I wish to disclose it - it affects me but it does not define me.

For example, ask yourself if you want to be known as that person with MS or as "Rileymom" first, and then that you have MS second/third/last or even not at all. Similarly , saying someone is "wheelchair-bound" is no longer used - they are a person in (or who uses) a wheelchair. So we also get "person or people with disabilities" = PwD and not "the disabled".