The ME/CFS Association in the Netherlands brings its De Meirleir video series to an end with its 20th video on Testing in ME/CFS. After Dr. De Meirleir their ME/CFS Experts video series is moving on to Dr. Visser, a cardiologist (see below). Congratulations on a well-done series!
- Find the text of the entire De Meirleir series here.
Dr. De Meirleir on Tests You Might (or Might Not) Want to Get Done
The ATP Levels Test
“It’s practical use to me seems limited”
Energy production and the mitochondria is a pretty hot topic in ME/CFS, with several supplements intended to increase ATP production in common use. Decreased CoQ10 levels have been found in both chronic fatigue syndrome and fibromyalgia, and Dr. Teitelbaum touts D-Ribose , a mitochondrial enhancer, for ME/CFS/FM.
The question is, though, should you get your ATP levels checked?
Citing the high variability of ATP production in cells, Dr. De Meirleir suggested you should not, unless the test was being used with an intervention designed to increase ATP levels. Citing the low ATP levels that are found in many chronic illnesses, though, it was clear De Meirleir doesn’t believe reduced ATP production, while it may be present, is the problem in ME/CFS.
If low ATP levels are found, they could provide the basis for symptomatic treatment that provides relief. You may not be curing ME/CFS by increasing ATP production, Dr. De Meirleir said, but it could help you feel better.
Dr. De Meirleir created the hydrogen sulfide test for chronic fatigue syndrome, and for a time it was being talked about as a diagnostic biomarker. The test picks up metabolites of hydrogen sulfide gas in the urine and provides an assessment of Th1/Th2 functioning. Eighty-five percent of ME/CFS patients test positive for Th2 dominance on the H2S test.
The gut, of course, is often called the ‘second brain’ because it’s loaded with neurons. Could a similar level of neuronal ‘excitation’ in the gut be producing H2S? Dr. De Meirleir did not say why H2S levels were high in ME/CFS gut but it’s probably not doing anything good; high H2S levels in the gut have been tied to both colitis and colon cancer..
Dr. De Meirleir did not talk about one of the issues proposed by the originator of the H2S theory in ME/CFS, Marian Lemle; central nervous system dysfunction and fatigue.
Marian Lemle’s interest in H2S started when she learned of its ability to send animals (and humans) into a torpor-like state similar to the fatigue found in ME/CFS. This torpor-like state is induced, it’s believed, to protect the body against overly high metabolic demands and oxidative stress.
It turns out that central nervous system excitation causes neurons to pump out H2s as a protective measure. A similar process happens in blood vessels faced with high rates of oxidative stress. The low blood volume in ME/CFS could create ischemic conditions that produce high rates of oxidative stress, and indeed, studies do find increased levels of oxidative stress in ME/CFS.
A similar process occurs in sickness behavior when the brain induces fatigue and flu-like symptoms to cause the body to rest and not spread an infection. The process in sickness behavior is believed to be driven by cytokines, but cytokine results in ME/CFS have been quite variable. (A recent study found no evidence of cytokine upregulation after exercise or poor sleep in ME/CFS.) Could the torpor in ME/CFS be driven by H2S overproduction?
What about the mysterious ‘chronotropic incompetence’ sometimes seen in ME/CFS? Chronotropic incompetence refers to the strange inability of some ME/CFS patients to get their heart rates up to speed as they exercise. While this is typically seen in heart failure, the heart is clearly not the problem in ME/CFS (see below). Lab studies suggest hydrogen sulfide can have just this effect.
This is all highly speculative, but Suzanne Vernon and other researchers received Marian Lemle’s theory with real interest. H2S – in both the gut and the brain – is another possibility in ME/CFS.
Natural Killer Cells
Not only does natural killer cell dysfunction run rampant in ME/CFS, but NK functionality can, in some patients, be shockingly low. Natural killer cell dysfunction is not the complete answer to the immune problems in ME/CFS – some patients can get their NK cell functioning up without seeing much improvement – but having our earliest responders to viruses and cancers not working well is a significant problem.
De Meirleir noted, again, though, that while NK cell dysfunction is important, it’s not – citing chronic Lyme disease patients with similarly low levels of poor NK cell functioning- specific to ME/CFS.
“The research team proposed using serum NAD(P)H to monitor metabolism and fatigue status in patients with CFS. Following patients’ NAD(P)H levels over time may aid in selecting therapeutic strategies and monitoring treatment outcomes.” Mikirova et. al. 2012
De Meirleir noted that the NADH test (NAD/NADH ratio) could indicate that early acidification of the muscles was taking place during exercise, and could explain, interestingly, the alcohol intolerance in ME/CFS – which De Meirleir asserted is present in nearly 100% of ME/CFS patients.
Low NADH levels were correlated with low COQ10 levels in a recent study, suggesting NADH test results could be an analogue for COq10 levels (and that both these supplements could be helpful).
NADN supplementation, however, significantly improved only anxiety in ME/CFS in a recent placebo-controlled trial. An earlier trial found dramatic improvements in the first trimester, but no difference between controls and those getting NADH after that.
Dr Visser – Dutch Cardiologist Pt: I – Chest Pain and Shortness of Breath
Dr. F. C. Visser had been a Dutch cardiologist for over thirty years. About five years ago, he switched full-time to the research and support of people with chronic fatigue syndrome (ME/CFS) or, as he calls them, ME patients.
The ME/CFS Association will feature Dr. Visser in five more video’s on cardiac aspects of ME/CFS. Dr. Visser’s current study featuring two-day test-retest exercise studies, makes him one of four researchers/research groups (Workwell, Vermoulen, Visser and Keller) that I know of that are exploring this potentially game-changing area.
“A Cerebral Phenomenon”
Dr. Visser may be – probably is – the only cardiologist in the world with such an intense focus on ME/CFS. Calling the high degree of chest pain found ‘extraordinary’ in the younger population he treats, Visser noted an earlier English study found it was present in 80% of people with chronic fatigue syndrome.
The pain usually occurs on the left side of the chest, close to the cartilage on the sternum near the second and third ribs. He finds it in 40-50% of his patients.
Asking what’s causing this problem, our ME/CFS cardiologist laid out three possibilities: an irritation of a small joint between the sternum and ribs, lymph node drainage problems, or a complication of orthostatic intolerance.
“None of the above,” our good cardiologist asserted! That pain in your chest (which I experienced for years) is simply an aberrant pain signal generated from the brain – a cerebral phenomenon. How he figured that out, unfortunately, he didn’t say.
Before telling us how to treat chest pain in ME/CFS Dr. Visser noted that he’s seen some 2,000 ME/CFS patients, and in all those patients he’s never seen severe heart problems such as obstruction of the arteries/veins, pericarditis, or lung problems. You may have pain associated with the heart area – and if its severe get it checked out – but ME/CFS itself is not a disorder of the heart.
For myself I ended up once at the emergency room and once at a doctor’s office with what I thought were heart-associated pains, but nothing was found.
What to do about this mysterious brain-caused pain? Nothing! Unless it’s really severe – then use pain killers.
Shortness of Breath
“It is purely a wrong signal.” Frans Visser
Shortness of breath is another common finding in ME/CFS. I no longer experience shortness of breath, but I remember vividly very short and rapid breathing patterns that would come on. It was as if some little engine had taken over my lungs and there was no slowing it down. It didn’t happen that often and eventually it completely went away.
Visser stated shortness of breath occurs in about 50% of ME/CFS patients
Calling shortness of breath a complex interaction between the heart, lungs, circulation, and yes, the brain, Visser stated that something, somewhere – no one knows where – had gone wrong in that interaction, sending the breathing pattern off.
But, given that defects in the heart and lungs are rarely seen in ME/CFS, you can scratch those two major organs off the list (thankfully). This is a problem mostly caused, apparently, by an interaction between the brain and the circulation. In short, Visser stated, it’s a signaling problem generated by the brain. The heart and lungs are fine.
Again, Visser did not suggest any treatment.
Our ME/CFS cardiologist has labeled two seemingly heart/lung associated symptoms not as heart issues but as ‘signaling’ problems, both associated with glitches in the brain and the nervous system. It’s an interesting beginning to what will surely be an interesting video series.