Demyelination to Remyelination

Multiple Sclerosis (MS) is a demyelinating disease therefore a drug that induces remyelination ought to cure it. Pretty obvious. No? 

Much in the way some people talk about HSCT (Stem Cells) as if they will fix everything with everyone I get the sense that remyelination drugs carry a similar expectation of a cure. In some cases the results may be nothing short of remarkable and in others they will be bitterly disappointing, crushing the hopes and dreams of many who have freighted remyelination with unreasonable expectations. 

The reason I have been prompted to write this comes from the surprise popularity of an interview I did with Dr Will Brown from Cambridge who is part of a team researching remyelination. You can watch it here: 

I just want to inject some reality into the discussion and set expectations. The ensuing comments on the video and the threads that regularly pop up on MS Twitter got me thinking, what will remyelination actually mean for MS patients? Will it turn back the MS clock? Will I suddenly become the 53y old chap without MS that I would have been? Will I suddenly stop experiencing fatigue, coordination, eyesight issues, odd sensations and the like that are now just part of life and me?

From talking to researchers and MS specialist neurologists it sounds like a remyelinating therapy (and there will absolutely be more than one in the next 5-10 years) will have variable effects on different patients. Talking with many other patients the expectations vary from realistic to magical.

Some of the false hope is perpetuated by genuine people. After all, who doesn’t want to get better? Grasping at the press releases of small biotech companies reminds me of something my mother used to refer to it as ‘picking up fag ends’, which for those wondering are the ends of discarded cigarettes that tramps cobble together to get a tiny nicotine hit. The results are always a triumph of expectation over reality.

Rather boringly the devil is in the detail with trial results. I was reading the Atara Therapeutics press release from ECTRIMS this year and having worked in the pharmaceutical industry read it in several different ways. 

Firstly, it is incredible news. Secondly, I read a hopeful and extremely carefully crafted statement that is designed to reassure current investors and attract new ones. It also wants to catch the eye of the big pharmaceutical companies as they have the infrastructure and expertise to commercialise a drug. No tiny biotech can afford huge phase 3 trials and then the lengthy and complex approvals process followed by launching and selling the drug. The aim is to be bought by a large firm for a massive amount of cash.

(It is a very expensive money-burning business to be a biotech. Spending fortunes on research funded entirely by people who hope you are right and will become stinking rich if you are. The investors are largely financial gamblers with very diverse portfolios as they know 99% of their investments will fail.

So, I implore anyone reading these teeny tiny Phase 1&2 trial results to keep your hope and optimism but temper it with a healthy great dollop of cynicism. It simply may not work at scale, it may be deemed uneconomical and go nowhere, and and and. Drug development is a for-profit business. The drug development path is littered with promising compounds that were deemed commercially unviable and went no further.

If the stars align and everything goes perfectly then expect a further 5, more likely 10, years to pass from now (Dec 2022) before a drug is available for some lucky people. When it does it will be like the first-generation DMTs in so much as it does something but not a great deal. The first drugs on the market for remyelination will be looked at 20 years from their launch as clumsy and largely ineffective ones. That is the way. 

My message is this. Be optimistic, seek solutions, and don’t expect miracles.

(Reader’s Note: I have had MS for 29y so far and would ungraciously elbow myself to the front of the queue for a remyelination drug that could turn back the MS clock.)


5 thoughts on “Demyelination to Remyelination

  1. You are saying so because you are on your legs..and don’t know the feeling of loosing everything at the first year ..PPMS

  2. Hello again Mr. Shadbolt- I don’t come around much, as keeping up with The MS Blog, MS Selfie and MS News Today keeps me well occupied and takes too much of my time as it is. But you again popped up in my inbox so I had to take a look. I am 35 years into this with a (generally) similar background as you. Simply, I like the “matter of factness” and “this is reality” orientation of (at least) this post. I haven’t gone through your others. I’m in relative good shape after 23 years on interferon and am reconciling to myself now, that such outcome may not mean too much and might even be accidental. Nevertheless, I’m relatively happy to be where I am. What irritates me a lot is the refusal of some to grasp reality and instead make up, adjust or adopt their own “un-facts”. It’s fascinating in the sense we are all trying to survive, and what I almost always see is part of that process. MS = uncertainty, and trying to get that back can lead down a rabbit hole. Avoiding fact or re-writing it has been going on in most domains for a long time. So I like reality. But further to that, I find it also fascinating to watch others with a premise to reality, survive. How do they do it? My experience has been that it is not easy. I’ll end with something “strong”: There’s no excuse for stupidity when you could have known better. How does one say that in a gentle way?

    • Thank you, Tom. That is my general approach. Reality based.

      However, you and I have had a while to come to terms with things. Many struggle with the cognitive dissonance involved with having an incurable chronic illness and in order to ease the mental discomfort they attach themselves to what, in the cold light of day, appear to be the thinnest slivers of hope. They take, wrap them with layers of hope, possibility,and wishful thinking and in no time they become a real possibility.

      I don’t want to extinguish hope but I do want to limit the effect of the disappointment that is a feature of research.

      Ho hum. One can but try 😉



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