Friday, October 29, 2010

Judy Mikovits is our Frederick Banting

Between traveling to Minnesota to help his daughter, attending conferences on ME/CFS, writing posts on his blog, cleaning a small apartment (toilet too) in NY for short term rental money (cash for research and treatment), the Patient Advocate has a few moments where he tries to retrieve a little of his former life, much of which has evaporated (the PA is not complaining).

This week in NYC, the PA went to a fascinating show on the history of insulin at the New York Historical Society. The Patient Advocate has a long-time interest in diabetes as a close family member has type 1 diabetes. So the Patient Advocate knows something about this illness also.

The story of insulin is a fascinating one and the show itself was quite amazing, with many original and fascimile documents. The Patient Advocate bought a book called "Breakthrough" - authored by Thea Cooper and Arthur Ainsberg. The book tells the story of the discovery of Insulin and the last minute "resurrection' of Elizabeth Hughes (and others). Elizabeth was the daughter of the Secretary of State, Charles Evans Hughes. While the story line is riveting, the book suffers from various shortcomings, not the least is that it was written by two people - a fatal formula. Ultimately the book is a "poor read", as it suffers from unnecessary and misleading modern "flourishes". In other words the authors make shit up, they "dramatize" situtions that never happened. In this sense it is very "modern" and idiotic. This almost gets in the way of the essential narrative of this powerful story - and ultimately led the PA to go to the local public library and get out an older book on Frederick Banting, the Canadian inventor of insulin.

While reading "Breakthrough", the Patient Advocate had drumming through his head repeatedly - "Judy Mikovits is our Frederick Banting, Judy Mikovits is our Frederick Banting".

Frederick Banting has always been a favorite of the Patient Advocate - and it is no secret that Dr. Judy Mikovits is also a favorite of the PA, and has been for some time.

The idea of the cure for diabetes came to Banting late at night after he read a recent article on the illness. He knew almost nothing about diabetes and had no access to a lab. Circumstances unfolded, mostly of his own doing, allowing him to do research over the summer of 1921.

Later he had this to say about scientific discovery:

"We do not know whence ideas come, but the importance of the idea in medical research cannot be overestimated. From the nature of things ideas do not come from prosperity, affluence, and contentment, but rather from the blackness of despair, not in the bright light of day, nor the footlights' glare but rather in the quiet, undisturbed hours of midnight, or early morning, where one can be alone to think. These are the grandest hour of all, when the progress of research, when the hewn stones of scientific fact are turned over and over and fitted in so that the mosaic figure of truth, designed by Mother Nature, long go, be formed from the chaos."

In the middle of that night Banting had an insight and wrote down 25 words outlining his idea. Where to look occurred to him in a flash - and to only him. A similar situation arose in 2007 when Mikovits attended a meeting in Barcelona. Through happenstance, and upon further reflection (Mikovits too had no clue about ME/CFS.), Mikovits too had a flash of insight: "It's a retrovirus." Like Banting, Mikovits went looking, and with a little necessary luck (which also accompanies "special people") she stumbled on XMRV. And the world turned. In both cases there had been prior suspicion or identification of the "culprit", but no one had been able to substantiate it. In both cases it took the arrival of a "special person" to unlock the key.

Upon the discovery and production of insulin by Banting, immediate efforts were taken by others to marginalize him - to "take him out". The PA is reminded of the story of a government figure (CDC, NIH?) approaching a very well known scientific colleague of Mikovits and warning him to "distance himself from the WPI". This functionary stated that "the WPI is going to be taken out"

The idea of an unknown (hick) person, Banting, making the insulin discovery was intolerable to the academics around him -although Banting (like Mikovits) did have some close allies. The worst part of the insulin story involves a particular fellow named Macloed, who, for no good reason except self-aggrandizement, ended up sharing the Nobel Prize with Banting. Through the early years, Banting had to keep his head in order to hold onto his invention. Continuous efforts were made to take him out of the equation and substitute others. Eventually, through doggedness, Banting was able to get the recognition that he deserved. He resolved not to be pushed aside and fought back. Banting had guts.

Banting came from modest circumstances and had no larger aspirations beyond solving this specific problem. He had what is known as "intellectual curiosity". He wanted an answer and in no way was prepared for what lay in store for him. The negative assaults that he had to endure altered his view of the world - at the very same time that hundreds of patients were being saved. It is a convoluted and sad, yet exhilerating, story. People are really strange and the Patient Advocate does not want to speculate on what they are really "after".

Banting had a little trouble moderating his anger towards those who wanted to take him out. These were unsettled waters for Banting to negotiate and he was forced to rely on more primitve instincts that he learned in his upbringing on a farm. Some of his lab partners were afraid of him - afraid of being physically assaulted. Our own favorite, Judy Mikovits, gives the impression of wanting to also "punch out" a few people. The Patient Advocate speculates that he was sitting right behind two very good targets at the recent CFSAC Science Day.

For his entire life, Banting had a deep personal attachment to his patients, in spite of his own somewhat rough personality. He liked the idea of saving children (and adults). He was personally invested in his practice and kept up a lifelong interest and exchange with his patients. In other words he had empathy, a quality that is increasingly absent in the world in which we live. Judy Mikovits too has this empathy with patients - witness the recent NJCFS meeting.

As a result of the insulin discovery, there was a great amount of room for additional people to get involved in this positive effort. In the ME/CFS world we are now seeing this on a daily basis. It occurred in the 1920's - there were other heroic collaborators in the unfolding drama of insulin - and it is happening now, right now in ME/CFS.

All this sounds vaguely familiar doesn't it?

Conclusion? Seeing this exhibit (reading this book) cemented the idea in the Patient Advocate's mind that Judy Mikovits is our own Frederick Banting.



10 comments:

  1. Thank you, Patient Advocate. Your comparison of Judy Mikovits to Frederick Banting explains, for me, a lot of the criticism of Mikovits. The first one that comes to mind is the criticism that she cares about patients. Clearly, Banting cared about patients too, and this caring was used against Banting also. The next favorite of her critics is criticizing her for saying the truth. What I notice most is that Banting's critics took what are essentially good qualities, universally admired, and used them to attack him. The same thing is being done today to Dr. Mikovits. I find it reprehensible that people who say they want the best for ME/CFS sufferers are using these sterling personal qualities of Dr. Mikovits to atack her.

    Patricia Carter
    www.mecfsforums.com

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  2. Thank You, PA, and "Ditto" to Wildaisy.
    Those who have strong opinions and CARE can many times be Villanized by those that are either Jealous of their Invention, Popularity, or the fact that they are Correct, thus proving the Flat-Earthers "wrong," and they usually don't go down quietly. Actually kind of also reminds me of ALL of the current Negativity in our
    Politics for those ONLY trying to HELP folks.

    Dr. Judy is a warm caring Passionate person that has a keen sense of "listening to her gut and intuition." Sometimes tho, being human like ALL of us, she finds it hard to be QUIET in the midst of ALL of these attacks, but I give her FIVE Gold Stars for the Effort to Locate the TRUTH and for her tenacity in "staying ON Target" and for trying her Best to Ignore those that are only self-serving and could truly care less about what is in the Best Interest of the Patients. I have met her and her Hero Hubby as she refers to him, and they BOTH have Hearts of Gold. Keep FILLING That drawer of Papers Judy~ they WILL get Published some day and the Truth will win out.

    Thank you PA for the Perfect Analogy and historical truthful reference. Many DO have to "sell out" to Keep their invention and stay sane. Thank Goodness, Dr Judy is Already with WPI.
    Which makes me also say Thank You to the rest of the Trio that created WPI.

    As the wonderful video says.. "What have you done TODAY to make you Feel Proud.?"

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  3. Dr. Judy is indeed a hero! Thank you for sharing Banting's story and I would agree that he certainly sounds much like our own beloved "special person".

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  4. Thank you, PA, Chris! This is a great perspective and thank you for caring so much about both these illnesses. Dr. Judy our hero. So brave in the face of adversity.

    I just wonder why is human nature like this? It's such a waste of time and energy. I never understood it.

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  5. "The PA is reminded of the story of a government figure (CDC, NIH?) approaching a very well known scientific colleague of Mikovits and warning him to "distance himself from the WPI". This functionary stated that "the WPI is going to be taken out""

    This makes me realize how important it is for patients to donate to WPI, so that they are not "taken out".

    No-one else will fund Judy if we don't.

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  6. Use the "cc" button and Read where XMRV is NOW also showing up..+ Good Interview.

    http://www.youtube.com/watch?v=xPOvWsSf1oU

    Thank You for your honesty, PA.

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  7. Great write up. Glad to know men have been attacked for telling it like it is in the past and it's not just vocal women. Some just can't accept large changes that rock the world of science.

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  8. I met the fabulous Dr M in New Jersey and asked her a question that I had often thought about.

    What was it like to be an anonymous scientist and researcher and be suddenly exposed to the ugliness of the ME/CFS world? I could see she knew exactly what I meant.

    She said that she had some warning of what to expect but that it still came as a shock. I can just imagine.

    I have now seen her talk twice, in London and NJ and both times she seemed near to tears when talking about patients.

    I hope she is getting lots of support as she is (only) wonderfully human.

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  9. I hope this will not upset people, but it seems to me that i have heard some differing variants of the story how the connection between CFS and XMRV was found. One was that Annette Whittemore heard about the RNAse-L "problem" in people with prostate cancer and now i've read this version. Which one is correct? This worries me a bit.

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  10. Thank you for your words, the inspiration they provide...it is hard to be trapped with this illness, in my home, for years. I am so grateful for being able to read your blog and get a glimpse of what's happening out there. And of course, hope...

    Elisabeth

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