Patients Multiple sclerosis
Topic of the discussion
Posted on 07/05/2015 15:13
Scientists have apparently discovered a new way to restore myelin damaged by MS in the body. I invite you to take a closer look at this article and share your thoughts down below.
All the best,
Beginning of the discussion - 09/05/2015New drug could reverse the damage of MS https://www.carenity.co.uk/forum/multiple-sclerosis/your-opinion-on-multiple-sclerosis-treatments/new-drug-could-reverse-the-damage-of-ms-340
Posted on 09/05/2015 12:51
an interesting start, but a long way to go. But myelin repair suggests hope.
Posted on 09/05/2015 14:48
"Hope springs eternal"! Appears this is only "early days" in this research and not sure if/when this will be available in the UK/Europe and unsure if there are any contra-indications or adverse side effects but equally believe it is vitally important that research is continually pursued. In the meantime, let's all keep endeavouring to most positively manage our day-to-day symptoms and fully embrace both our good and bad days and make each day the best we can.
Posted on 09/05/2015 14:51
Is it this trial?
If so - My thoughts are - This is really, really REALLY bad reporting.
When myelin is damaged the body has a limited ability to repair it. Lingo-1 stops the repair work. The drug anti-lingo-1 stops the production of lingo-1, potentially allowing the repair to continue longer that usual (or possibly allowing a repair to commence). It does nothing to repair the damage or reduce the severity or likelihood of a relapse - it simply enhances the bodies natural ability to heal itself by allowing it a little longer to heal.
the number crunching says to me that repair time can be improved by about 10%. The implication is that for RRMS the drug can be administered post relapse. It may improve regeneration of myelin by about 10%. The results are generally reported as 'significant'. Which they are - to a statistician. 'Significant' simply means that the results are above the level of pure chance.
I am not a statistician - I am an MS sufferer - Show me 50%, 75% or 100% and I will allow the term 'significant'. 10% rates as a 'bit'. If there is a 10% of me being affected by a side affect then I am told 'there is a bit of a chance that you will get a bit of a headache.' So if I take anti-lingo-1 after a relapse there will be 'a bit of a chance that I will get a bit of an improvement in myelin repair.'
Scientists say that crucially the new results prove that anti-LINGO-1 can repair myelin, and so should help people with MS.
But a new drug, called anti-LINGO-1, has been found to repair myelin, ... completely restoring function in some cases.
are to me factually wrong - and dangerous. Anti-lingo-1 does not repair myelin. Lingo-1 inhibits the repair of myelin. Anti-lingo-1 inhibits the production of Lingo-1. From the results of the trial - the best that can be inferred is that the drug - in some cases - can lift a 90% recovery to 99%. Or a 61%recovery to 67.61%. Or a 1% recovery to 1.1% recovery. It is not evidence that a patient with no prospect of any recovery from a bout of Optic Neuritis can take the drug and end up completely recovered.