Big Science is a term historians use to talk about the move in the late 20th century toward large government or commercially funded science.  Prior to that time, curious doctors carried out small studies on a handful of patients when they had an idea they wanted to test out.

McAlpine's huge Multiple Sclerosis textbook for medical students, still an authoritative resource that I cited for my book, devotes an entire section to such historical trial and error studies.  There were many follies and gross mistakes as doctors tried to find a way to help people with MS.

you can purchase McAlpine's MS book for $252.00 on Amazon here

In Joan's note linked here  she recounted how Dr. Tracy Putnam recognized vascular issues in MS and attempted to uncover their connection to MS lesions using the technology of the 1930's and 40's.  Unfortunately,  technology was so primitive, there was little available except blood thinners.  Other MS therapies of the time were ineffective and people wanted better results- like they saw with the polio vaccine and penicillin for syphilis or TB.  Patients and families wanted a real cure, not this trial and error stuff.

They wanted Big Science to come to the rescue and cure MS.  The medical community decided that clean bright labs, microscopes and controlled experiments were the way to go.  Immunology came on the scene in the late 40's and it was the Big Science of the day using the most advanced techniques.  

If you think about, it was worlds better than what was available before: those tiny studies on a handful of people were weak from a scientific standpoint because they were uncontrolled and not necessarily applicable to MS patients generally.  And it wasn't getting anywhere.  It's easy to see that being able to actually look at mouse brain tissue under the microscope seems the logical best approach when compared to trial and error on human beings.

The only problem is that EAE is not human MS and it differs in some important ways.  For example as Joan and I have mentioned on these pages and as I discussed in my book, many things CURE EAE but merely slow MS modestly.  Copaxone is a good example--it cures mice with EAE but humans continue to progress while on it.  

However, the quality of the science done on the immune system and mice with EAE is extremely good.  The problem comes when such quality is presumed to mean that the findings are applicable to human patients when that may be an unjustified leap of faith.

There was a time when they thought Copaxone would cure human MS too...and once they did stage III trials and knew it actually slowed but didn't stop the lesions they adjusted expectations and instead predicted that MS was going to be a managable disease in combination with other treatments like mitoxantrone and steroids.  The presumption was that because the science was so carefully and well done, researcher's interpretation of what their study means for people over longer terms must be correct.

We're all living with big science, only now it has big budget public relations and ad campaigns behind it which take an active interest in how the science is presented to the public (see "Pharmageddon" by Healy).  This includes insisting that huge blinded studies is the ONLY way things can be done.  Everyone has been convinced that you cannot trust anything that isn't produced by a randomized controlled trial, and you certainly can't trust your own eyes or experience.

This is a loss because it means that we can't get anyone to listen and LOOK at those patients who have done extremely well with CCSVI treatment; such people are unfortunately invisible to the very minds that need convincing that CCSVI is something that needs fair investigation.  

Notice however that negative consequences are readily accepted on anecdotal evidence; this reveals that in fact the medical community does recognize that anecdotes are meaningful.  it's too bad we can't get a few more neurologists and NMSS admin to acknowledge the positives--to really SEE some of those people who have had unexpected improvements like SPMS that reversed surprisingly-- just so that they can become aggressive advocates for full fair investigation of CCSVI treatment.

That's all we've ever wanted...  

Marie

author of CCSVI as the Cause of Multiple Sclerosis

www.ccsvibook.com