Scientific Progress and You

Yes, you!  People with multiple sclerosis (PwMS) can, should and must make their contribution to scientific progress.  Let’s unpack the various issues, progress, paradigms, experience, engagement, ……

Scientific progress – we won’t get bogged down in the fine details that comprise the philosophy of science, for that would, and has, filled page after page of many books.  And this area, while very important, has a major failing.

It probably excludes you.  Yes, you!  Unless you are a philosopher of science, in which case you should be writing parts of this post for MStranslate…….

Why is your inclusion into the efforts to make scientific progress so important?

It has to do with experience – PwMS experience their experience while scientists attempt to explain the experiences of PwMS.  Can you see how this distinction emphasises the crucial role PwMS can play in making progress?

Broadly, there are two approaches proposed for scientific progress.  Depending on your perspective, these approaches can be competing or complementary.

The first is evolutionary.  In this approach, progress is slow and steady, step by step by step, with each step extending understanding incrementally.  Think of multiple sclerosis (MS) as two parallel staircases, with the cause(s) of MS at the very top and not in sight.  One staircase is called ‘Autoimmunity’ while the other is called ‘Infection’ – there may be more than two but that is a story for another time.

When MS research began, all of the researchers were at the bottom, making choices about which staircase was best to climb, or was best suited to their training or views on the disease.  And they started to climb.  Of course, some results didn’t lead to progress so the researchers stayed on the same stair trying to work out other ways that might lead to the next stair, using their own efforts and those of their peers as guides.

The current aim is to get to the next step, another step closer to the top.  Step by step, inch by inch, experiment after experiment.  Researchers focused primarily, perhaps exclusively, on their own staircase.  Persistence can be dogged but persistent research should not be dogmatic!

The second approach is revolutionary.  This approach acknowledges that the basic framework within which researchers develop their questions and interpret their answers is not necessarily fixed.  This framework is called a paradigm.

Progress within a paradigm is often evolutionary until someone, somewhere says:

“Hang on, the way we’ve been looking at this problem is all wrong!”

This is not a normal evolutionary step, it is a step-jump, a bounding breakthrough.  A new, more appropriate paradigm opens up a portal that might see researchers ‘jump’ several of the steps.  Things that didn’t quite fit before can now be explained, questions that were never thought of can now be proposed and progress that might have been stalling develops new momentum.

A third staircase might eventuate or one or both of the existing staircases are extensively renovated such that they bear little resemblance to their step-ancestors.  Perhaps it’s easiest to conceive of scientific progress in this way:

Step, step, step, step, STEP-JUMP, step, step, step, step, step, step, STEP-JUMP, step,….…

Now, let’s return to ‘you’ – where do ‘you’ actually enter into a discussion on scientific progress.  Let’s begin to answer this with this excerpt from the 1907 novel “The Longest Journey” by E M Forster:

“Their love of beauty, like their love for each other, was not dependent

on detail; it grew not from the nerves but from the soul.”

This sentence has a particular relevance to MS and scientific progress, with the contrast between ‘nerves’ and ‘soul’.

When scientific progress is sought by scientists, it ‘grows from the nerves’, with its foundation in the factual, the detailed, and the empirical.  Increased understanding of the ‘nerves’ enables scientists to climb the stairs step by step.  Such climbing might produce refinement or replacement of the prevailing paradigm – the step-jump.

All of this effort aims to explain the experience of PwMS, with a sufficient explanation leading to more effective treatments and, ultimately, a cure.

PwMS can’t be passive bystanders while this effort is taking place for they have a vital role to play.  Their inescapable experience of their experience – hour by hour, day by day, year after year – represents the ‘soul’ of MS.

The experiences, insights and changes of PwMS can generate and/or shape novel and important research questions.  Following and exploring the trail of these personal contributions could shatter paradigms.   As Proust said, “The real voyage of discovery consists not in seeking new landscapes, but in having new eyes.”

For scientific progress, PwMS undoubtedly have new eyes!

The thing that binds evolution and revolution, ‘nerves’ and ‘soul’, and steps and step-jumps is a desire to get involved and to then make a contribution.

You can do it.  And you, and you, and you ……..

Talk to us, share with the MStranslate community, connect with researchers, get and stay involved.

Do it.