The Dutch group organisation ME/CVS Vereniging is creating a professionally produced video interview series with chronic fatigue syndrome (ME/CFS) researchers and doctors.
Dr DeMeirleir kicks off ME/CVS Vereniging’s series of video interviews with ME/CFS professionals
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:
A large percentage of the population no longer breathe properly so limit themselves to surface breathing rather from the diaphragm. GPs don’t pick this up because they don’t examine patients. If you are lucky enough to see a breathing specialist in a hospital they will re teach you how to breathe using the diaphragm . Clearly it is well within the capability of GPs to do this if they knew to look out for it and other practitioners such as yoga teachers can also do this. The advice is to begin trying to do it right by concentrating on deep breathing and having one hand on your stomach. Practice breathing properly for about ten minutes at set times in the day eg before making a drink and resting. You should feel your stomach going in and out. Eventually it should reset itself. There are I understand many physiological problems caused by patients who only breathe using the top of their lungs. Clearly if you try to exercise when not breathing properly less air will be going into the lungs.
Thanks Linda, I’ll give it a try…I’m glad to hear it can eventually reset itself – that’s good news.
I know that CO2 issues can mimic several symptoms in ME/CFS and I remember a study which suggested, not for psychological reasons, that ME/CFS patients go into hypocapnia, simply upon visualizing stressful situations….It was if they were physiologically primed to tip into that..
My shortened breathing pattern, stiffened muscles, shoulder and neck pain have been pretty constant thoughout ME/CFS for me.
I’ve always had trouble doing abdominal exercises – tolerate them very little – but I wonder if mild Pilates exercises would help strengthen that area in those who are better off and can do them(?). I believe Connie Sol with Dr. Klimas recommends them.
I ‘know’ how to breathe well and used to breath deep and slow and still do most of the time, but when I did the ’tilt table test’ for POTS (which I have) the cardiologist and myself noticed that when I got to the standing position my breathing changed slightly and I noticed that I wasn’t able anymore to breathe entirely ‘normal’ as if my breath gets a little ‘stuck’ at the end.
There seems to be a physical reason for this.
Even if you’re breathing properly when you’re sitting down if your body is not doing all the things it needs to keep the blood from flowing into your legs when you stand then things are going to get thrown out of whack…like your breathing patterns I would guess.
i do breathe with my diaphragm, but am still very short of breath and unable to speak two words presently … there must be something else to it.
If only it was so easy, huh? 🙂
More guidance on breathing includes to speak with short phrases based on nursery rhymes
jack and Jill went up the hill breathe
To fetch a pail of water breathe
When jack fell down breathe
He broke his crown breathe
And Jill came tumbling after breathe
http://mitochondrialdiseases.org/related-diseases/
Very interesting, thanks for bringing this series of interviews to my attention. It all strikes a chord with me, from the breathing posture problems to the almost alzheimer-like cognitive issues. I know that I too don’t breathe properly – to me it feels as if I forget to breathe, my brain doesn’t seem to be able to do that as the same time as trying to think!
I will be recommending these interviews to my local NHS ME clinic where I attend as I am struck by how little they seem to understand about the nature of this illness.
Honestly, I would not be surprised at all if wires don’t get crossed and everything freezes up like that. 🙂
Cort- Great info. I have found as crazy as it seems, if I wake up at night I use Mag Sulfate creme from Kirkman Labs and then I do about 10 minutes of slow stretching exercises It helps me to go back to sleep and sleep more sound .Also probably 3-4 times a day also. Mostly on my back. This helps me go back to sleep and also I am not stiff in the morning. Used to be an athlete and did long distance running and then walking. Had ME/CFIDS for over 20 years. The breathing really helps. Not sure I am doing it right-however -if I do stretching at the same time-it helps me to remember to breath right.Just found out I have Diabetes Insipidus also.
Appreciate your great info on this site and that it is easy to read and understand. AS SOMETIMES OUR BRAINS ARE NOT WORKING.
san diego
I have been ill with ME since 1995. In 2008 I thought I was finally winning in recovery and returned to work part-time. I was still limited from my previous health but was functioning rather well and limited in pain. After four months I relapsed with no apparent rhyme nor reason but the very first day of the relapse brought with it a tightening of the chest and I was puffing again going up or down stairs as if I was out of shape big-time yet just previously had been doing physical work without that puffing.
The tightening of the chest was only one part, I had extreme headache and lead body unable to lift myself from bed without excessive effort as well as my heart beat was different and quickly went into fast heartbeat upon walking up or down stairs. These changes are the root key to the illness I believe and I certainly agree the hypothalamus is heavily involved as just before I went into the very severe category my hypothalamus was roaring heat into my head. Additionally as well I believe a gland located at the base of the skull at the back which excretes something that causes waking.
I was really interested to see ventilation brought up. I participated in one of Klimas’ VA exercise studies where my ventilation came in at 50% of normal. I appear to be somewhat of anomaly as I walk in excess of 10,000 steps a day (according to my “Fitbit”); this actually low as the Fitbit doesn’t really account for bike and swimming activity. However, I am unable to exercise aerobically and have clearly established ANS issues (particularly HR, temperature dysregulation, BP; but very mild OI). Unlike some of Klimas’ patients my dysautonomia has not magically disappeared with “exercise”. Can’t wait to pin Klimas down on why I have no improvement.
Despite what Sir Simon, the CDC and Peter White might fabricate my dysfunction is unrelated to sedentary issues (ie deconditioning).
From my experience I would say it’s a very complicated issue. I find that I have significant improvement where there is extremely good ventilation (ie grocery stores, some Vegas casinos, etc.). I think there may be other environmental contributing factors like mold that I subtly react to.
I find breathing exercises only marginally helpful as this seems to fall into the ANS sphere of things. One cannot concentrate on breathing “properly” 24 hours a day. I’d also note that my breathing issues are also seen at night – in fact it gets much worse: I have proven paradoxical breathing.
Look forward to hearing more on this and other ANS issues.
Hi
I Wonder if i might record my own video in norwegian retelling the exact same as de meirleir. Making it explicit that it is a translation and its original.
…i ment origin, not original in my last post 🙂
Helge,
I think you should ask the Dutch “ME/CVS Vereniging” (Rob Wijbenga) because they are the makers of these short video’s.
Perhaps you can contact them via Facebook or via e-mail?
Els
Hi,
I do breath properly (it’s been tested by biofeedback one time …) but I notice that when I try to do real breathing exercises (breathing more profound using my stomach and counting or saying a word to hold my breath longer)
I ALWAYS start YAWNING immediately and cannot stop it.
I’ve always found this very strange and don’t know if others have the same experience.
Hi Els (Dutch? Belgian?)
that yawning is supposed to be good, it is a redirecting of your ‘energy’.
I do Qi Gong and sometimes I yawn throughout the whole set of movements (15 to 20 minutes); it worried me because I thought I was doing something wrong. In fact it is a clever bodily mechanism to clear and detoxify our system.
As long as you don’t dislocate your jaw, yawn away!
Thanx Ria! xxx
(I’m from Belgium yes 🙂 )
Dag Els
wat leuk om hier een landgenoot tegen te komen!
(Nice to meet a fellow countrywoman on this site!)
The number of times I have been rushed by ambulance to hospital due to fainting and chest pains I do not like to count. My GP has refused to refer me to a respiratory specialist even though the A&E doctor requested this. I had an untreated chronic cough for 3 years before finally being given a steroid inhaler. I lost my voice toatlly for over 6 months and was mute, having to use sign language. This was mis-diagnosed as laryngitis. ENT have tested everything, speech therapy have helped but mainly through breathing exercises including blowing humming and singing through a straw into a bottle of water being the most helpful. I can be out of breath just coming down the stairs and am using a rollator when well and a wheelchair when not in order to get around my own house. I feel like a geriatric and treated as such but I am only 39 years old. I had a pulmonary embolism in 2004 and another this year that dislodged by itself, the other nearly killed me and I had nuclear medecine, heparin and warfarin, and lost all nearly all the pigmentation in my hair as a result. I have been mis-diagnosed with depression, time wasting, and psychosomatic disorders but ths is a very real illness that has cost me everything: my mobility; my voice; my jobs; my ability to parent my children; my independence; my identity; my self-esteem; my friends; and nearly my sanity. There needs to be more help and early diagnosis and intervention to prevent this being passed from pillar to post. There needs to be a cure. Sometimes I feel I would be better off dead. I want my life back, or failing that, I want a life of some sort, PLEASE. This doctor on the video seems to know what he is talking about. Can you translate his other 14 videos? What does he use to help his patients to recovery? Let us benefit from his knowledge and experience, please?
Hi Merry…Sorry you’re having so much trouble! The Dutch group is going to translate all the video’s and then they’ll be creating some more..They’re deciding on who they might be now.
You’ve had a really rough time. I hope this is a better year for you!
“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.”
I find it interesting that Dr De Meirlier said that as I havent heard that said before and I didnt have crashes or issues to exercise at all for the first year of this disorder. That came in afterwards only when the ME had set in full time (my ME viral symptoms eg high fevers, swollen glands, the muscle aches and pains were on and off for the first year and triggered via stress and late nights during that time).
Anyway it was great in hearing the issues with exercise getting worst with time being talked about for the first time.
I found this very interesting, there is so much I can identify with regarding my own condition. I was diagnosed with asthma after my m.e diagnosis!, also the memory issues are so true. The only area that I do not come across very often that I suffer with and have done since day one are absences, I still suffer with these on a regular basis, they have been investigated on a basic level but with no diagnosis or treatment they continue to be put under the m.e umbrella.
I appreciate issues we as m.e sufferers are well aware of being highlighted and taken seriously.
I had real problems with breathlessness prompting the usual psychological explanations. It got worse until I was given omiprazole for acid reflux. I was not aware of a problem but gave it a try and noticed the cessation of mucus from the back of the nose and after a week or so I tried to inflate the top of my lungs, as I often had and bingo….like the parting of a plastic bag held together by moisture, air flowed in and for the first time in several years I could Breathe.
I spent the next 2 days in agonising pain as if I had seared my lungs, unable to lie down to sleep. I could walk further and climb slopes better and for over 2 years now I have been improving, seldom breathless even with major exertion.
Because the wonderful NHS won’t give me more than 28 days at one time I sometimes run out if I forget to re-order. For 2 or 3 days I don’t even notice……then I become breathless and more prone to dyspepsia. It takes a few days to get back on top and I resolve not to forget….till the next time.
I feel that I have been on this for too long now but it beats not breathing.
Wow…that’s really something! Does your doctor have any idea what’s going on?
Hi Cort,
I’ve been following this and your previous site since I was disabled in late 2008. Just wanted to say thanks for the Dr. De Meirleir video series. Strangely, or perhaps not so strangely, his insights and information are reassuring. I practiced as a nurse practitioner before the disease became disabling and it makes sense. I can’t really write what I want to say due to brain fog, but know this blog is deeply appreciated.