Friday, February 27, 2015

A Good Day for a Serious Disease

"unequivocal evidence of immunological dysfunction in ME/CFS and diagnostic biomarkers for disease."

Dr. Mady Hornig and Dr. Ian Lipkin from Columbia University published an important paper today in Science Advances. The study can be read hereArticles  on this cytokine study appeared immediately in the Wall Street Journal and the NY Times, written by Amy Marcus and by David Tuller.  Both of these journalist have been on top of reporting on this disease for a number of years and their efforts are commendable. 

This significant study at Columbia (financed by the Hutchins Family Foundation) - along with the brain imaging of Dr. Jose Montoya at Stanford - will go a long way towards shifting the momentum in research into this serious illness - ME/CFS, otherwise known as Myalgic Encephalomyelitis.

From the Columbia website

We now have evidence confirming what millions of people with this disease already know, that ME/CFS isn't psychological,” states lead author Mady Hornig, MD, director of translational research at the Center for Infection and Immunity and associate professor of Epidemiology at Columbia’s Mailman School. “Our results should accelerate the process of establishing the diagnosis after individuals first fall ill as well as discovery of new treatment strategies focusing on these early blood markers." 

"This study delivers what has eluded us for so long: unequivocal evidence of immunological dysfunction in ME/CFS and diagnostic biomarkers for disease,” says senior author W. Ian Lipkin, MD, also the John Snow Professor of Epidemiology at Columbia’s Mailman School. “The question we are trying to address in a parallel microbiome project is what triggers this dysfunction."

Dr. Hornig will give a presentation on the research at Columbia at the Invest in ME conference in London at the end of May. 

Friday, February 6, 2015

Hugh and Chris Hempel - and their daughters Addi and Cassi

I had the privilege of meeting Hugh and Chris Hempel at the Whittemore Peterson Institute in 2009. My son Peter Cairns was filming various individuals with neuroimmune illness, among them the Hempels. The Hemples' two daughters Addi and Cassi, now eleven years old, have Neimann-Pick Disease, a rare and fatal illness.

The Hempels are what every parent of a chronically ill patient aspires to be. Few achieve the level of involvement and focus that they achieve. They have set aside totally their own lives and devoted themselves to the betterment of their two ill daughters. I have followed what they have done over the last number of years with astonishment.

Today I came upon this video unexpectedly. I was surprised to hear Mr. Hempel speak on a subject that is of very great interest to me. Medical cannabis is in the news every day now. There is a great battle going on in America. The outcome is uncertain. The great states of Minnesota and Pennsylvania, two states close to my heart, are moving towards medical marijuana programs. Why does it take so long?

It is painfully obvious that cannabis, especially non-psychoactive CBD or THCa,  has certain medicinal properties and has helped, in various non-smoking forms - oils, tinctures, vaped, transdermal, suppositories -  a great many chronically ill people, including the two daughters of the Hempels.

Mr. Hempel is doing us all a great favor in presenting his experience at a Ted talk. It also takes a bit of courage, given the nature of the US Government's position regarding medical marijuana. Mr. Hempel lays out the picture, without making extreme claims, only asking for serious research into the potential of this medicinal plant.

There seems to be some use of medical marijuana in Lyme patients. Not much anecdotal experience in ME/CFS is available on the internet. Given CBD's known anti-inflammatory properties, one would wonder, why is this?