Some bloggers have jumped all over the announcement by Dr. De Meirleir that an important cause of ME/CFS has been found. This is, they say, the ‘big breakthrough’. But is it? With just the abstract in hand let’s take a look at what little we know.
The Announcement – Dr. De Meirleir has been in this business awhile. He was the foremost proponent and investigator of the idea that RNase L was’ it’ in ME/CFS. While RNase L does not appear to be ‘it’ in ME/CFS it was an important contribution to the field. Dr. De Meirleir publishes frequently in the scientific literature and has treated many chronic fatigue syndrome (ME/CFS) patients.
By holding a press conference – something researchers rarely do – Dr. De Meirleir is putting his reputation on the line. This suggests, of course, that he strongly believes he has found something of great importance.
One might have wished that the press release title “Research on Extremely Disabled Patients Reveals the True Nature of the Disorder” had been less over the top. Many researchers would shirk from such a blanket statement at this point of the game. Still given Dr. De Meirleir’s contributions from the past we’ll score 1 for the Big Breakthrough.
Hydrogen Sulfide Producing Bacteria Found in the Gut – In order to have H2S in the gut you to have a means of getting it there. The press release did not indicate, however, that the bacteria were more prevalent in the more severely ill patients than in the less ill patients or even in the controls – sloppy work! Score 0 for the Big Breakthrough.
More H2S Metabolites Found in the Urine of More Ill Patients – Using what appears to be a fairly primitive test De Meirlier shows evidence that more H2S is likely being produced in the more severely ill patients – Score 1/2 point for the Big Breakthrough
H2S in Excess Causes Many of the Symptoms in ME/CFS – H2S can cause all sorts of problems in the body: photophobia, oxidative stress, increased mercury levels, depressed immune functioning, etc. Oddly enough here is where the theory lets us down a bit. Any type of oxidative stress can cause a multitude of problems. Dr. Pall with nitric oxide and Rich Von Konynenburg with glutathione depletion can all chart an intricate and widespread cycle of dysfunction much like Dr. De Meirleir is.Dr. Cheney has done the same thing with his energy metabolism theories.
We actually have too many intricate theories in ME/CFS – and not enough testing. The fact that H2S can cause these problems is intriguing. The fact that De Meirlier has found evidence of high H2S levels in ME/CFS patients adds an extra layer to it. Score ½ point for the big breakthrough.
Correlation is not Causation: Simply finding high levels of H2S metabolites in ME/CFS doesn’t mean that they cause the disease. High levels of oxidative stress are found in many diseases including ME/CFS but few people believe they cause those diseases. ME/CFS patients have high levels of the ciguatoxin epitope but so do cancer and people with other illnesses – ciguatoxin doesn’t cause any of these diseases. Ditto with low cortisol readings and Fibromyalgia, asthma, PTSD and RA.
Finding higher H2S levels, therefore, does not necessarily mean that it is causing this disorder. In order for it to cause ME/CFS Dr. De Meirlier has to show that it’s only present in ME/CFS patients, is not found in other diseases, and that removing it from ME/CFS cures the disease. It was not present in healthy controls – good – now onto the rest of the population. Score ½ point.
Conclusion: What does this theory – as much as we know of it – have going for it? The word of a well respected researcher, a model that appears (at least to a laymen) to make sense and a finding that illness severity appears to correlated with the level of the agent. (All of these could have been said about RNase L several years ago).
What does it need for ME/CFS patients to really start clapping? A means to bring down H2S and evidence that doing so erases ME/CFS. A coherent reason why the H2S is present in the first place, independent verification of the results and findings indicating that H2S is not present in other diseases.
Whether or not H2S actually causes or is an important cause of this disorder a substantial contribution to the field appears to have been made. H2S wasn’t even a blip on the research community’s radar screen until Marian Lemle, the mother of a daugther with ME/CFS/FM, earlier this year published a paper suggesting it played a role. Now Dr. De Meirleir has created a test that suggests it’s present. Whatever the final outcome of the H2S saga he and Marian Lemle have added a new layer to the ME/CFS equation and opened up a new arena for research and treatment – always a welcome thing.�
Check out the (correct) slides from Dr. DeMeirleir’s Press Conference