This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!

Saturday, August 20, 2011

New Criteria for Myalgic Encephalomyelitis

In the summer of 2011 a team of people with an impressive background in studying and treating ME/CFS came together to present a new diagnostic criteria for Myalgic Encephalomyelitis (ME).  This new International Consensus Criteria represents a huge step forward from the term Chronic Fatigue Syndrome, which was so broadly and vaguely defined as to lead to more confusion than anything else.  The reasons for the new criteria are explained in this quote:

"Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) [1-3] and immune system [4-8], dysfunction of cellular energy metabolism and ion transport [9-11], and cardiovascular abnormalities [12-14]. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomology. Thus, the development of International Consensus Criteria that incorporate current knowledge should advance the understanding of ME by health practitioners, and benefit both the physician and patient in the clinical setting as well as clinical researchers."

It was possible for patients to meet the criteria for CFS without any physical symptoms.  This resulted in a group of patients sharing a diagnosis with tremendously different etiologies, daily experiences, degrees of debilitation, and prognosis.  Some recent research has supported certain interventions (such as Graded Exercise Therapy) that are known to be dangerous for patients with the pathophysiology of ME.  By defining ME more specifically and clearly, hopefully this disease will be considered more valid and more appropriate therapies will be used.  I think this criteria brings us much closer to recognizing what I believe to be the central role of mitochondrial dysfunction in the etiology of ME. This post from the blog Living with Chronic Fatigue Syndrome gives a good perspective about the new criteria and why they are such a step forward.