What does a black swan have to do with MS?

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What does a black swan have to do with MS?

Postby ton » Fri Sep 06, 2013 6:20 am

[cen][/cen]Posted by Gavin Giovannoni in MSBlog #MSResearch

Have we got the autoimmune paradigm of MS wrong?

“I was involved in a heated discussion yesterday at a meeting in Germany that centred on the current, and future, DMT market for MS. The opinion was that it would expand and continue to support several new drugs and classes of drugs, for example safer and more effective immune modulators and neuroprotective, remyelination & neurorestorative therapies. What do you think?”

“This current perspective is based on the premise that we have got the cause of MS and its pathogenesis right. What if we are wrong and MS is due to a viral infection? I have made the argument for a paradigm shift on this issue on many occasions."


“This figure which attempts to illustrate the current dogma, in relation to the pathogenesis of MS, may be incorrect. In other words the inflammatory, or so called autoimmune reaction, is secondary, possibly in response to another trigger. An obvious hypothesis is that MS is due a virus. This would imply that therapeutic strategies targeting primarily inflammation (shaded box), which reduce or abolish relapses and focal MRI activity, may have little impact on the underlying neurodegenerative processes that drive progressive MS (lower half of figure). If this was the case relapsing MS would simply be converted to non-relapsing progressive MS. This experiment is underway; MSers with active disease rendered relapse-free with more active DMTs are being followed to see if they present in 10, 15, or possibly 20, years’ time with secondary progressive MS. Should we wait for this experiment to read-out before pursuing other hypotheses? Of course not, people with MS cannot wait this long for an answer. This is why we promote active early treatment under the autoimmune umbrella and have simultaneously launched the Charcot Project and are doing an exploratory a trial of raltegravir, an HIV drug, in MS. We also are continuing to try and drum up support for doing a trial of an anti-EBV drug in MS."

"Interestingly, drugs that target B cells, in particular B cell depleting drugs such as anti-CD20 (rituximab, ocrelizumab, ofatumumab) monoclonal antibodies also target EBV and are very effective in MS. Anti-CD19 which also targets B cells will do the same as anti-CD20; hopefully anti-CD19 will be even more effective than anti-CD20 as it targets plasmablasts as well.”

“If the viral hypothesis turns out to be correct this could potentially destroy the current DMT market and replace it with something new. Events, or paradigm shifts, of this nature happen more frequently than expected. A good book to read about these improbable events is ‘The Black Swan: The Impact of the Highly Improbable’ by Nassim Taleb. The book focuses on the extreme impact of certain kinds of rare and unpredictable events (outliers) and humans' tendency to find simplistic explanations for these events retrospectively. This theory has become known as the black swan theory.”
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Re: What does a black swan have to do with MS?

Postby Moom9335 » Sat Sep 07, 2013 7:31 am

I wish to commend and encourage you in your efforts to think originally in regard to MS.
The numbers of cures are zero in MS and the reduction in progression is also a dismal figure.
Why then all the push for the continuation of the medications that are currently ineffective and expensive?
I will leave the question unanswered as you seem to be already discovering the obvious.
I watched my son progress horribly from MS in a short five years from diagnosis.
He died on March 3, 2013. Please read his blog, thegreekfromdetroit.com to get an authentic rendering
from one whose MS was uncontrollable and devastating. He spoke for the many who do not have a voice
and often choose not to live in a degenerative and dependent state. Also, Wheelchairkamikazi.com will give you a great perspective on the years he has investigated MS medicines while he deteriorates.

Please continue to seek the answer that has remained hidden for too many years .
And, if you need more encouragement, read the words of those of us who watched the devastation and now
mourn those we loved.I shall read the Black Swan although I believe that I have already experienced it.
A grieving mother........
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Re: What does a black swan have to do with MS?

Postby DrGeoff » Sat Sep 07, 2013 2:19 pm

Sorry, ton, the "Black Swan" argument is older than Prof Giovannoni's blog, or Taleb's book .
This is actually an old philosopher's concept - usually thrown at very new undergraduates to get them to think. It is simple:
Statement - All swans are white.
Response - It only takes one black swan to show that the statement should be rejected.

This does not sit very well with those people who believe that scientific studies can prove or disprove anything.
This is one reason why Stage II and III drug trials need a whole lot of participants (and another is that the more you have, the smaller the differences you need for statistical significance - and statistical significance has a significant effect on publication acceptance).

I think that what comes out of Prof Giovannoni's blog post - what he is really saying - is that there is an accepted way of treating MS that seems to work (DMDs that, on average, reduce relapses by about 30%, and which assumes that a particular immune system deficiency is the cause of MS). Here is a new theory that seems to have a lot of promise. Should medical science stop treating MS patients in the way they do now (e.g. no more DMDs), and wait for perhaps decades to see if the new theory stands up to rigorous study such that a new treatment regime can be developed? This would amount to a paradigm shift of the type propounded by Thomas Kuhn.

One happy event can be a chance discovery that actually leads to the real cause of MS and to a cure for MS. What we have not had,yet, is that single black swan that enables the rejection of the present ideas about MS. Even more, if that black swan should fly over, and was rported, would it be given credibility?
This does not alter the fact that Taleb's book is still a good read.

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Re: What does a black swan have to do with MS?

Postby Scott1 » Sun Sep 08, 2013 3:20 am

There are flocks of Black Swans out there.

Read PO Behan and A Chaudhuri of Glasgow University, together with BO Roep of Leiden University (2002) -"The pathogenesis of multiple sclerosis revisited". There are many others published works as well. Even on these posts there are comments from people who would qualify as black swans.

MS is a devil of a problem. "Multiple" in the operative word. The problem is the medical profession keeps looking for a single explanation for a problem where symptoms and causes often overlap and so all they see are white swans.

Instead of asking is it Black or White just ask how many Swans do you see?

Quack quack.
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