New drug could reverse the damage of MS

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Patients Multiple sclerosis

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• Community manager
Posted on
Good advisor

Hello everyone!

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,

Gilda

Beginning of the discussion - 09/05/2015

New drug could reverse the damage of MS


Posted on

an interesting start, but a long way to go. But myelin repair suggests hope.

New drug could reverse the damage of MS


Posted on
Good advisor

"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. 

New drug could reverse the damage of MS


Posted on

Is it this trial?

https://clinicaltrials.gov/ct2/show/record/NCT01721161?term=anti-LINGO-1&rank=1

https://beta.mssociety.ca/research-news/treatments-in-development/anti-lingo-1

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.'

This: 

Scientists say that crucially the new results prove that anti-LINGO-1 can repair myelin, and so should help people with MS.

and this:

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. 

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