Friday, September 9, 2016

New Research Brings Hope

For years, when asked what it's like to have severe myalgic encephalomyelitis (ME or ME/CFS), particularly during a setback or post-exertional crash, I would often tell people it feels like a near total body shutdown.  At its worst,  I can barely move or turn myself in bed, and can feel the energy it takes just to breathe.  It is an experience that is hard to put into words because it is so far beyond the normal, everyday conception of sickness.  And without knowing the details of exactly why these symptoms occur, it makes it all the more difficult for others (or even for those who experience it) to fully grasp and understand it.

However, thanks to a new study out last week by the University of California's San Diego School of Medicine, we may finally be closer to an answer.  And while their findings don't yet explain everything, they do potentially explain a lot. Indeed, it is quite remarkable when the very words you've used to describe what this illness feels like -- a near total body shutdown -- is revealed by science to be what may actually be happening on a cellular level.

Dr. Robert Naviaux's metabolomic study shows that cells of ME/CFS patients appear to be in what's called a hypometabolic (or dauer) state --  analogous to a kind of protective hibernation -- in response to an infection, toxin or other threat.

Dr. Naviaux explains:
 "Despite the heterogeneity of CFS,* the diversity of factors that lead to this condition, our findings show that the cellular metabolic response is the same in patients.  And interestingly, it’s chemically similar to the dauer state you see in some organisms, which kicks in when environmental stresses trigger a slow-down in metabolism to permit survival under conditions that might otherwise cause cell death.

In the case of CFS, when the CDR [cell danger response] gets stuck, or is unable to overcome a danger, a second step kicks in that involves a kind of siege metabolism that further diverts resources away from mitochondria and sequesters or jettisons key metabolites and cofactors to make them unavailable to an invading pathogen, or acts to sequester toxins to limit systemic exposure. This has the effect of further consolidating the hypometabolic state. "

Eighty percent of the diagnostic metabolites measured were decreased in ME/CFS patients, creating a type of metabolic signature that allowed for an accurate differentiation between patients and healthy controls. In fact, Naviaux's diagnostic accuracy rate, based on these results, exceeded ninety percent.

Dr. Naviaux goes on to say:
"CFS is an objective metabolic disorder that affects mitochondrial energy metabolism, immune function, GI function, the microbiome, the autonomic nervous system, neuroendocrine, and other  brain functions. These 7 systems are all connected in a network that is in constant communication. While it is true that you cannot change one of these 7 systems without producing compensatory changes in the others, it is the language of chemistry and metabolism that interconnects them all."

While Naviaux's study will need to be replicated, other scientists are already finding similar results.  For example, earlier this summer, an ME/CFS study out of Australia  found irregularities in energy metabolism as well as amino acid, nucleotide, nitrogen, hormone and oxidative stress metabolism. They state that "the overwhelming body of evidence suggests an oxidative environment with the minimal utilization of mitochondria for efficient energy production."

More recently, in a webinar held by the Solve ME/CFS Initiative, Dr. Maureen Hanson of Cornell University mentioned similar metabolomic findings in a study that is currently awaiting publication.
Dr. Ron Davis of Stanford University and the Open Medicine Foundation is conducting the first comprehensive study ever done on severe ME/CFS patients, and has also already found similar disruptions in metobolomic pathways in his preliminary data, which he reported on at the Invest in ME 2016 Conference.  Davis has a son, Whitney, who is severely afflicted with this disease.  Whitney is completely bedridden and must be tube-fed.  He is unable to speak or tolerate any kind of touch or interaction. 

In Cort Johnson's excellent summary of Naviaux's study, he notes Dr. Ron Davis' observation that:
 "In other diseases, the kind of disability seen in the most severely ill ME/CFS patients is a prelude to death. Once people get THAT sick they’re usually going to die; a process has been started that’s going to result in death.  But that generally doesn’t happen in ME/CFS. People can remain functionally in what appears to be a near death state for a long time. That could suggest a way has been found to keep the body alive in a very low energy state."

Collectively, these findings could lead to a better understanding of what may turn out to be a central mechanism involved in this illness, and could also open the door to the first possible diagnostic test for ME/CFS.

Most importantly, this discovery may lead to new avenues for potential treatment in the near future.  While it's unclear yet what that treatment may be, Naviaux appears optimistic.  He states, "...metabolomics reveals a new window into the underlying biology of CFS that makes us very hopeful that effective treatments will be developed soon and tested in well-controlled clinical trials."

In simple terms, for millions of patients with ME/CFS who have been awaiting answers for far too long, this new study brings much needed hope.

Photo by Getty Images

Sources/Further reading:

*Patients in Naviaux's study met ME/CFS Canadian Consensus Criteria  (in addition to IOM and Fukuda criteria).


  1. Thanks for such a clear summary of the new research. I knew about it, but this may be the best article I've read.

  2. I agree with Kerry. Thanks for putting all the studies in an understandable and concise way. Very helpful, and hopeful!

  3. Thank you for using your precious energy to write this excellent post Laurel. I have been trying to find a way to summarise the recent metabolomics research for my family & close friends. Due to the severity of my cognitive symptoms I've not been able to do this yet - but now I don't have to! I will be sharing this brilliant post with many people. Your description of a crash is so perfect too.

    1. Thank you for the kind comments as well as for sharing my post!

  4. Laurel, Thank you for sharing this link on FB. This is magnificent--clarifying, hopeful, and so well written and well researched! It is literature. Thinking of you with love (and admiration!), your friend, Maureen

    1. Maureen -- What a lovely surprise! Thank you for taking the time to read my blog and comment. It means so much! I think of you often as well -- have many fond memories of our HS years. Much love to you. xo

  5. Dear Laurel
    thank you for this great post! I researched some more and stumbled upon an article linked to the research you wrote about, quoting Dr Ian Lipkin who said 'he believes it’s possible to solve ME/CFS in three to five years' provided the funding is sufficient. He's a well know virus researcher and can apparently be taken seriously. Here's the link in case you haven't already read it:

    I've been following your blog for a few years now and I wanted to thank you for your courage and persistance. Your example has helped me to stay hopeful over the years.
    take care and all the best for the future
    lots of love from Germany

    1. Thank you for your kind and hopeful comment, Anna. I do know of Dr. Lipkin's work and find it very promising! I'd forgotten his quote about hoping to solve ME/CFS in three to five years if the funding is sufficient. Thank you for the reminder! It does give me hope. It's unfortunate that the funding for this disease is so lacking. I so hope he is able to get the funds he needs to meet his goal. We have all been waiting so long.

      Thank so much for following my blog all these years, and for your kind remarks! It is very much appreciated. Take care and all the best to you! xo

  6. Great post Laurel, it's exciting news and I hope other scientists pick up on it and do more work SOON, like right away, so this can actually make a difference for those of us who wait in bed.