TIANDB
Active member
- Joined
- Jul 5, 2018
- Messages
- 38
- Reason
- PALS
- Diagnosis
- 06/2018
- Country
- Uni
- State
- Derbyshire
- City
- Matlock
Hi tessiegirl. I honestly do not know how it will if ever it will become mainstream ? The presentations were rejected by the ALS community as noted from the website.
Maybe the trials of a new drug are done quicker than over 12 years ? But coming to market takes longer than 7 Years ?
90% of ALS patients have between 3 and 5 Years to deteriorate some small % sadly quicker and some small % have a longer time to deteriorate.. Very sad for all.
Everyone does not agree with the Trial system and tweeks are always being sought. The control group in any ALS trial go about deteriorating along with the Placebo group bar some slight placebo benefit on occasions ? The trial group benefits if any benefits are to be achieved for the duration of the trial and then are usually cut off ? Only 2 Drugs are available after many $B's on mainly failed trials. One drug works for 7% of Pals to extend life some ? the other gives a few weeks extra towards the end of sad proceedings although it may be more beneficial to some ? Both are expensive most especially the 7% one of the only 2.
That the RCH4 drug is being used by a small number who have managed to gain access when the window was open to all who honestly applied is a fact.
As the website explains lack of funding keeps the numbers low. Trolls, intended pickle the water holers and wanna be commercial pick pockets keep the contact window closed. If i win the lottery here in the UK tonight I will deposit some funds. Only 6 Years down the line for RCH4 ? with most Pals gaining Time 84% ?
( 12 Years commercialisation ? your way ? ) Hopefully something good turns up and not to far away and not 2 Expensive.. Peace TIANDB. ( I am a 10% er Under rather than over )
Maybe the trials of a new drug are done quicker than over 12 years ? But coming to market takes longer than 7 Years ?
90% of ALS patients have between 3 and 5 Years to deteriorate some small % sadly quicker and some small % have a longer time to deteriorate.. Very sad for all.
Everyone does not agree with the Trial system and tweeks are always being sought. The control group in any ALS trial go about deteriorating along with the Placebo group bar some slight placebo benefit on occasions ? The trial group benefits if any benefits are to be achieved for the duration of the trial and then are usually cut off ? Only 2 Drugs are available after many $B's on mainly failed trials. One drug works for 7% of Pals to extend life some ? the other gives a few weeks extra towards the end of sad proceedings although it may be more beneficial to some ? Both are expensive most especially the 7% one of the only 2.
That the RCH4 drug is being used by a small number who have managed to gain access when the window was open to all who honestly applied is a fact.
As the website explains lack of funding keeps the numbers low. Trolls, intended pickle the water holers and wanna be commercial pick pockets keep the contact window closed. If i win the lottery here in the UK tonight I will deposit some funds. Only 6 Years down the line for RCH4 ? with most Pals gaining Time 84% ?
( 12 Years commercialisation ? your way ? ) Hopefully something good turns up and not to far away and not 2 Expensive.. Peace TIANDB. ( I am a 10% er Under rather than over )
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