The Dutch group organisation ME/CVS Vereniging is creating a professionally produced video interview series with chronic fatigue syndrome (ME/CFS) researchers and doctors.
The first series will feature no less than 20 video’s from Belgium doctor and researcher, Dr. Kenny DeMeileir. Since 1989 Dr. De Meirlier has seen over 15,000 patients, has co-authored many papers, one book (CFS A Biological Approach) focusing on problems in the interferon pathways in the immune system., and produced a hydrogen sulfide test.
The first three video’s, all in nice, digestible 3-10 minute chunks are on ” Is ME and/or CFS a disease? (Click here to view), “Is ME a Heritable Condition” (Click here to view) and “Is it Possible to Diagnose ME/CFS?” – which you can view and which I cover below.
The “Is It Possible to Diagnose ME/CFS?” Video
The answer to that question is a resounding yes as Dr. De Meirleir asserts many tests can help diagnose this disorder. Dr. De Meirleir focused on a dysfunctional immune system, intestinal dysbiosis, high levels of oxidative stress, mitochondrial problems, low blood volume, poor circulation and even prion problems in some patients. He believes ME/CFS is a neurological disease with immunological and metabolic components. Dr. De Meirleir said few problems with exercise occur early on in this disorder (which was not my experience) but increase as the years go by.
He focused in on an an interesting finding not talked about much; spectacularly ‘poor ventilation’ (reduced oxygen exchange) in the lungs that could be attributed to less functional diaphragm muscles. (Dr. Lapp’s physical therapists have found a tendency toward hunched shoulders and sunken chests which can contribute to poor breathing and, one would suppose, poor ventilation). To my mind that posture is a least partly the result of ongoing muscle contraction, particularly after exercise, which draws the torso inwards. Dr. DeMeirleir noted that some people can experience shortness of breath simply while speaking. A 2011 study found evidence of ‘postural control deficits’ in Fibromyalgia, and chronic fatigue syndrome studies have found evidence of altered CO2 levels in a subset of patients. )
It’s a fascinating topic; for myself, I don’t feel like I’ve taken a truly deep breath in decades. I do notice a some increase in clarity and energy when my posture is better, presumably from increased oxygen consumption and less tension in the neck and shoulders. Low blood volume, poor circulation, poor ventilation, poor diaphragmatic control, metabolic issues; how could these not all go together to cause problems with exercise?
Dr. DeMeirleir then spun off a variety of neurological deficits; reduced grey matter volume, short-term memory problems and word-finding problems that get so bad that some patients noting what must be an uncomfortable resemblance to their older relatives with Alzheimer’s. Then he moved onto increased sensitivity to stress and reduced cortisol levels caused, he believes, by problems in the hypothalamus not the adrenal glands.
It was a good well-produced video jam-packed with information. Dr. De Meirleir talked in a matter of fact and organized manner; this would be a good video to show your doctor, if you can
A good English translation (no slipups from non-native translators :)) is provided in a bar on the screen. Good luck to ME/CVS Vereniging on their series.
Check out the other video’s here:
After years of work it’s time to attempt what we’ve never been able to do before – get Congress to force the NIH to double its funding for ME/CFS. Support the historic bill to increase research funding, add new ME/CFS research centers, require the development of a strategic plan, etc.. It will take less than 5 minutes.