Saturday, May 27, 2017
Each year I feel more ignorant regarding the research going on with ME/CFS. I know a lot about a lot of things but I know very little about bio-chemistry. It puts me at a great disadvantage, so do not expect scientific insight in this report. I see myself as an observer.
In the fall of 2014, I attended the Lyme conference in San Diego. It was the usual mixed-bag of a conference, except for one noteworthy encounter that I observed. At the instigation of Dr. Neil Nathan - Dr. Nathan, Dr. Judy Mikovits and Dr. Eric Gordon met with Dr. Robert Naviaux. Dr. Naviaux is a mitochondrial/genetic researcher who runs a lab at the nearby University of California San Diego. At the time Dr. Naviaux was doing trailblazing research on Autism. As far as I know, this meeting was the beginning of Dr. Naviaux's interest in ME/CFS. (Previously a number of people, including the incredible Rich van Konynenburg, a close friend of Dr. Nathan, felt there might be some association between Autism and ME/CFS.)
Dr. Naviaux's Autism research in 2014 included this and this. A year later there was this intriguing study and also this similar study. Dr. Naviaux proposed early on that a 100 year old drug named Suramin might have some activity against the "cell danger response" in Autism.
Today came a new study that moved this treatment to a small group of young boys. The study was published in Annals of Clinical and Translational Neurology. The purpose of the trial was to test the underlying theory about a cause for autism and to assess the safety of Suramin. The results were quite striking, but right on target for Dr. Naviaux's supposition regarding Suramin. There is an article about this new study here. Also there is a youtube video of Dr. Naviaux speaking of this study and its participants. Additionally Dr. Naviaux answers questions on today's study here.
Dr. Naviaux has provoked a shift in the underlying cause of Autism - towards a metabolomic signaling breakdown. This is a seismic shift. Time will tell us how real this is.
There is some thought that the purinergic signaling in ME/CFS is also aberrant. I first heard of this in a presentation by Dr. Geoffrey Burnstock at a 2011 Invest in ME conference in the UK. Next week the 12th Invest in ME conference will be held in London. Invest in ME does an excellent job at promoting serious ME research. Perhaps Dr. Naviaux will attend this conference? There he could meet Donald Staines and talk about Vasoactive Intestinal Peptides and other neuro-peptides. In this business of ME/CFS, there is never any assurance that the right people are talking together.
More recently, Dr. Naviaux has focused on ME/CFS. He has communicated with various CFS physicians and researchers, including Dr. Paul Cheney. Dr. Cheney has long promoted the notion of ME/CFS being a "Dauer state" or a self-protecting down-regulation. Dr. Cheney's protocol leans towards correcting a hampered metabolism in his patients.
Dr Naviaux and his research is connected to the Open Medicine Foundation. He works closely, as well, with Dr. Ron Davis at Stanford and Dr. Eric Gordon at Gordon Associates.
The post below reviews Dr. Naviaux's important study on ME/CFS patients in 2016. Yesterday, Dr. Naviaux did a follow-up webinar sponsored by the CDC. The slides can be found here. This presentation includes this: "hallmarks of a low energy state: anxiety, restlessness, irritability, fear of change, OCD behaviors, sensory and chemical hypersensitivities, meltdowns, and bouts of hyperactivity and even seizures." Sounds familiar.
It is worth noting that Suramin has various actions.This fact intersects nicely with some past, supposedly failed, research in ME/CFS.
All this is pretty amazing stuff. Dr. Naviaux's ideas seem to be reshuffling a number of hypotheses about these serious ailments.
As with all research, the biggest obstacle to moving forward is money. I have followed type 1 diabetes research for 25 years. It is a tough road for innovative researchers to get enough money to actually do the work, especially if the researcher is seen as an outsider - and when there are unseen or undeclared forces standing in the way.
Fifteen years into my daughter's illness, her caregivers and I struggle to make her better. Hope is not the answer. Research and treatment are. Dr. Naviaux's work is most welcome. All those connected to the illness need a little practical results and direction in order to gain some traction.
Meanwhile, patients and advocates are left to struggle on their own. All, according to their abilities and finances, try to find a way out of this disease. In my limited experience, different things work for different people - and some enterprising or lucky individuals can actually get better.
****It is worth noting that there has existed for some years now a comprehensive urinary metabolites test that measures 70 different metabolites. This organic acids test is available from Great Plains Laboratory and other labs. I see the OAT as a crude precursor of Dr. Naviaux's metabolic studies. However, it is an existing instrument with actionable information. The patient, advocate or even a doctor can learn to read this test and make decisions.