The Big Breakthrough (!)(?)

May 30, 2009

Posted by Cort Johnson

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

54 comments

{ 52 comments… read them below or add one }

perpetualspiral May 30, 2009 at 11:53 pm

De Meirleir’s credibility as a scientist is not as well-respected as you seem to think – please see another CFS/ME sufferers comments on this announcement here: http://blog.blueribboncampaignforme.org

I don’t know who is right about this, but from what I’ve seen, this is just one more red herring. Its unfortunate, because the publicity is going to make it seem like ‘problem solved’ when we are just starting to get public attention to the horrible condition and how it is treated so barbarically as ‘mental illness’. Any biomedical research is fantastic, but in my opinion this particular theory is pretty lame.

I do like your blog, keep up the good work :)

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chris May 31, 2009 at 4:04 am

My summary of de Meirleir’s lecture:

Kenny de Meirleir gave a precise lecture on his experience with very severe ME patients in Norway. He unexpectedly began his talk with a very short film documenting a young Norwegian woman’s descent into a near death isolation. He also had the sister of another very severe ME patient tell briefly of her sister. This young woman has lived in the same house with her sister for four years without every seeing her. Her sister cannot tolerate any stimuli. It was a powerful moment.

Often the sickest patients, the housebound and bed bound, are forgotten – even at these conferences, where most participants can move about. The ones who need the most help are not represented – although there were a number of patient advocates in the audience. Through this film, Dr. de Meirleir brought the news home and, despite the shocking unpleasantness of the reality,

Dr. de Meirleir visited, observed and tested 22 very severely ill CFS patients in Norway. In the US, you can’t even get a doctor to bother to make a home visit. Dr. de Meirleir does not fall into such a category and he is looking for answers. He believes the answer resides in the sickest of patients. As a result of his investigations in Norway Dr. de Meirleir has come up with a simple “marker” test for severe CFS. This is a self-administered home urine test that measures hydrogen sulfide. Protea Biopharma makes the test.

De Meirleir also presented his concepts of the connection of CFS/ME with a specific form of intestinal dysbiosis and presented his manner of testing and treating it. He does not have a particularly treatment for the very severe form of ME, which he characterized as “difficult”.

At the end of his talk, a variety of pettinesses broke out. I suppose there was some lingering irritation over his “press” conference of the day before. De Meirleir said that he has an independent group examining his protocol and its success rate. There were some expressed differences about the need for a control group. He said that he would do that.

I suppose some people think de Meirleir is grandstanding. The question is who is he grandstanding to? No one listens to CFS doctors. de Meirleir and the others working hard on CFS/ME are standing on very small soap boxes. His recent announcement may or may not be significant. We will find out later. In the meantime, there was a general feeling among the speakers at this conference that gut dysbiosis plays a major role in some CFS/ME and, as far as I am concerned, he has played a large part in its elevation. I try not to waste my time on negative thoughts about CFS doctors. There are not very many of them, they are in an unrewarding field (by and large), and their numbers soon will be diminishing, not increasing.

Chris

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cort May 31, 2009 at 4:23 am

Thanks again Chris for being there – and for your insightful reporting. Yes, Dr. De Meirleir has moved a bit quicker than others in the research field would like in proclaiming success. However his ‘sin’ if it is one is a minor one. He’s not asking patients to undergo body scans or to insert themselves into MRI’s or to undergo a zany and expensive treatment protocol. Instead he’s giving them the option of buying a cheap and easy means of determining if what he says is in there is actually in there. It would be great if patients could order at least two tests – and take one themselves and give one to a friend – and see what shows up and report on that.

The H2S report is not – as Chris notes – out of line with Dr. DeMeirleir’s research thrust of the past few years. He became convinced several years ago that the gut plays the major role in this disease and is, I would say, the most prominent spokesman for that idea. Dr. Cheney has for many years believed the contributions of the gut to this disease have been under-appreciated. And of course there’s Dr. Chia’s work.

Is it the cause of ME/CFS? The press release was a little confused; it started out stating ‘True Nature’ of ME/CFS revealed – if I got the right title and I’m beginning to wonder about that – and then later stated it was ‘a cause’ of ME/CFS. The later is much easier to accept at this point but the most important thing to come out of this issue so far, I believe, is the fact that a new arena for investigation has been opened up – always an exciting thing.

I do wish I knew more about the treatment options. Hopefully they’ll pop up or someone can direct me to them at some point.

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Sherry May 31, 2009 at 11:02 am

I’m happy that Dr. De Meirleir, like Prof. Garth Nicolson, has also discovered that two-thirds of CFS patients have bacterial infections. I am currently on a protocol for such an infection and making progress as a result.

All of Dr. De Meirleir’s findings seem to coincide with other physicians findings. At least that is what my foggy brain figured out when I looked at his slides that were presented at the International CFS/ME Conference in London.

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Andrea Martell May 31, 2009 at 11:21 am

Awesome article. I think it’s great that this research has been done, but until it has been peer reviewed, verified, replicated, I am going to remain skeptical. I don’t know if the media took things the wrong way or if De Meirlier really called it the only test for ME.
But the publicity seems very unscientific to me, and I think at this point it may do more harm to us, than good.

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Carolyn Richards May 31, 2009 at 1:09 pm

What I cannot believe is that everyone is commenting on the H2S. Even if it only verify’s an illness process it is just as good as most FDA approved testing & CHEAP. I have had many tests & each specalist gives me their opinion.
I have Lyme, CFS, MS, RA, gee I wonder who is right.

The thing that I thought was the big breakthrough was the Aberrant Prion Disease with pat.pend. written beside it. I haven’t seen any comments on this.

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cort May 31, 2009 at 6:01 pm

Good point! If I knew anything about the prion stuff I would have written about it. I do know that Dr. De Meirleir looks very closely at his samples. He was the one that figured out that when the RNase L enzyme broke up that it broke up into pieces that could mimic ion channel transporters – thus possibly screwing up the ion channels on cells. He also found evidence, if I remember rightly, of low molecular weight fragments that appeared to be causing RNase L to act in a manner that lead it to break up (very complicated). He believed they were the remnants of dead cells I remember.

Anyway the gist of this is that he seems to be used to looking and examining very closely what he finds in his samples. If anyone would find prions he would. What we really need is for other researchers to find them. Of course these really severely ill patients just seem to be completely falling apart; they often have high loads of opportunistic viruses, high heavy metal loads, etc. – they’re just a mess its seems.

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Ganno May 31, 2009 at 8:51 pm

Hello there,
There was a theory similar to Dr De, in the medical hypothesis last yr by a researcher from Washington. If these scientist look at hibernation, which H2 S has been linked with, there answer will appear obvious in two phases – bacterial infection ( transient for some ongoing for others ), creates cellular changes in energy metabolism, low 02 adaptive state. Humans cant hibernate hence ME people are in the arousal state of hibernation ( upgrading of the limbic structure sensitivity – creates Dr Gupta’s notion of heightened fear response ), 24 delayed fatigue is just Nitrogen toxicity which has a narcotic effect then when it wears off a person experiences further excititoxicity from energy depletion – Its all obvious and links perfectly if these ME scientists can only think out of the square, I could go into far more scientific details, but I will leave it with the so called experts.
Ganno.

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Tony May 31, 2009 at 10:29 pm

The blog perpetualspiral points to as supposedly casting some doubt on Prof De Meirleir as a scientist actually does no such thing. It simply asks questions and expands upon areas in a way that may or may not be relevant.
His record as a scientist is in the public domain, the research there to be read. His contribution as a doctor is seen as per his work in visiting, in their homes, the severely ill in Norway (and possibly other areas?). How much more do you want from any doctor?

A logical and sensible approach to this announcement is to wait for a more full explanation which hopefully will be coming soon. Until then it’s another theory that needs to be independantly borne out. Apparently that is happening too. Thanks to Chris for his informative post.

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Cort June 1, 2009 at 9:29 am

I just recieved this in the e-mail. It may bear on the prion question.
Check out the following link:

http://en.wikipedia.org/wiki/Prion

Prion diseases misfold proteins in the brain… EXACTLY LIKE DR. BARANIUK HAS DOCUMENTED….

I am very skeptical on any research having been sick for so long and seeing research get nowhere.

Still, the way it meshes with the work out of Georgetown, it’s very scary just how much this theory could unify…

DeMerlier must really think he knows something with this one in holding the press conference like he did. If this turns out to be nothing, he basically finished himself…

Let’s hope…

(A newsletter on Dr. Baraniuk’s work will appear shortly)

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Carolyn Richards June 1, 2009 at 2:56 pm

I did some reading on prions some time ago as there is a man named Urnovitz who was looking at them, just ran another search & it looks like (2009) Luc Montagnier & another scientist are all working together. I remembered this name as Cheney once must have had him doing some work on CFS as Urnovitz had found DNA rearrangment in GWS & Cheney’s patients matched the GWS. There was nothing mentioned on prions at that time. DeMeirleir found prions in saliava of his patients. One could “assume” (we know what that means) unless the pat. pend. was a mistake beside the word prion that this may be his next test.

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miguel June 1, 2009 at 3:23 pm

I am really glad to see another nail soundly hammered into the coffin of the psychological theory of CFS and to see further confirmation of the role of infection in CFS. Granted, the details of Dr. De Meirlier’s theory may be incomplete , but ultimately what matters most is finding effective treatments for this serious illness. Hopefully, his theory will now provide a rationale for GP’s to get on board with treating CFS patients with antimicrobials and other supportive medicines (the kitchen sink!). In my view, Dr. De Meirlier is contributing to a much needed shift in the dominant paradigm.

I am still puzzled by the accumulation of cellular debris and prions seen in CFS. I suppose this could represent the culmination of long standing cellular pathoglogy due to H2S mediated mitochondrial disfunction. It will be good to see some data on this. Interestingly, there is a protein called vitamin D binding protein (or Gc protein) that is involved in both immune function and cellular house cleaning (hmm). Low levels of this protein has been associated with the condition known as COPD, and recent experiments show that supplementation with Gc-MAF (also known as Gc-MAF) leads to very significant improvements in immune function in both cancer and HIV patients. Could Gc protein (or Gc-MAF) be a factor in the immune disfunction and cellular pathology of CFS? Perhaps this is another stone that should not be left unturned and that would fit neatly into the infectious disease theory of this illness. Sorry for digressing!

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Cort June 1, 2009 at 5:11 pm

No need to apologize for digressing. De Meirleir believed those cellular bits of debris were what shoved the 2-5oAS enzyme (if I remember correctly) in the wrong direction and ultimately lead to the RNase L fragmentation. But where did they come from? As I remember – high levels of incomplete cell apoptosis, i.e. cell suicide which is often mediated through mitchondrial pathways – which is perhaps another indication of mitochondrial dysfunction. Could H2S be the culprit? But why aren’t the cellular clean up mechanisms working properly?

Interestingly Dr. Baraniuk posits a similar process is occurring in the brain. He believe high levels of cellular junk (amyloid proteins) build up in the blood stream and eventually puncture blood vessel walls. This is what he believes causes the dysfunction found in ME/CFS. Either too many amyloids are being produced or our clean up systems aren’t vacuuming them up.

He also found evidence of mitochondrial dysfunction I believe. Then there’s Dr. Shungu who found high lactate levels in some patients brains – more problems with the mitochondria. They do seem to be showing up more and more.

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chris June 1, 2009 at 11:42 pm

In his lecture at the recent London conference de Meirleir said that further details of his discovery or theory would be presented at another conference in two weeks. He did not identify the conference. Nor did he say why he couldn’t put forth the information immediately. However he said this twice – that a detailed and fuller presentation would take place in two weeks. Hearing this the first time was disturbing, but hearing it twice was really irritating.

Chris

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Sarah June 2, 2009 at 1:13 am

Cort,
The Telegraph of UK seems more open minded about DeMeirleir’s work. Plus we learn his professional background, how he got interested in M.E./CFS from reporter Liz Hunt.
http://www.telegraph.co.uk/health/5407749/ME-Proof-that-it-isnt-all-in-the-mind.html

Perhaps more important, Rich Van Konynenburg posted to Co-Cure with a rather positive view of this announcement by DeMeirleir. No, I see, Jan posted it to Co Cure, originally on a ProHealth blog
http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1351932
There is his original post, and a second one that replies to questions from follow on posts, all at the above address.

I may not (okay, do not) understand the biochemistry, but DeMeirleir seems worthy of my trust. If in Europe, I would consider being his patient. I am as skeptical as the next person with M.E./CFIDS, a high bar on the skepticism scale. But I was surprised how negative are the first reactions to this announcement. This might be a great idea, especially for the very ill. Especially if the test does effectively indicate who should work hard on getting digestion to work. Think if doctors could help with symptom treatment — that would be great.

Plus, any simple lab test that discriminates the sick from the healthy is a step forward.
Sarah

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Carolyn Richards June 2, 2009 at 5:32 am

I have a stupid question & then I will go back to my sedintary life.

I live i Florida & there has been a problem with Chinese drywall, they now say this is everywhere (but more prominent in FL. due to recent hurricanes & housing boom. One of the products that are being emited from the tainted drywall is hydrogen sulfide. I guess my question is (how much, how long would someone have to inhale this product & would it somehow show up in the urine & give an incorrect reading to DeMeirleir’s testing?) The do not seem to know the health problems at this time as they assume this is a new phenomenon. They do know that it causes a reaction with metals (corrosion of copper pipes).

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chris June 2, 2009 at 3:03 pm

I learned today that there was a good reason why Dr. de Meirleir did not present his full explanation to the UK, but chose to wait until this next conference. So my irritation on this matter, expressed earlier, has vanish.

Today I watched in amazement as these small test kits darkened in color from yellow to deep blue in some cases. This is a simple test. de Meirleir says that he and his colleague Chris developed this test for one reason. No longer would these patients be seen a psychiatric patients. He and Chris want to free these patients of this intolerable burden. Hats off to de Meirleir and his colleague! I wish my colleagues were such people.

Chris

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drew June 3, 2009 at 2:12 am

“I learned today that there was a good reason why Dr. de Meirleir did not present his full explanation to the UK, but chose to wait until this next conference. So my irritation on this matter, expressed earlier, has vanish.”

Hi Chris, what is the “good reason”? Thanks.

Drew

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cort June 3, 2009 at 5:10 am

I snatched this from the ME Association – it has Dr. Charles Shepherds comments on the new test.

Her’s the article from Dr. Shepherd.

“I have looked at the scientific information upon which this test is based and heard the presentations from Professor Kenny De Meirleir and Dr Chris Roelant – two of the people involved with this research – at the Invest in ME Conference on Friday 29 May. My conclusion is that while this is an interesting hypothesis, the test itself cannot yet be regarded as a scientifically proven diagnostic test for ME/CFS.

“The urine test needs to be further validated using significant numbers of ME/CFS patients with all degrees of severity and from various other referral centres. The results need to be compared to significant numbers of healthy matched controls, people with other conditions that involve fatigue, and people who are bed-bound or severely affected by other disabling conditions that may affect their nutritional status. The latter point, which was made at the conference on Friday, is particularly important because much of the work so far appears to relate to a severely affected sub-group of ME/CFS patients. The MEA’s Ramsay Research Fund would be willing to consider any such research proposal. The results then need to be published in peer-reviewed medical journals.

“There are also going to be problems if people start using this test and then expect their family doctors/GPs to interpret the results and recommend/prescribe specific treatment, including antibiotics, based on the results. This is because the UK medical profession has not yet received any information about either the underlying hypothesis, or the test, or the treatment recommendations, in their scientific journals.

“Until we have further results from several good quality independent studies, it would be premature to conclude that a significant factor in the causation of ME/CFS has been discovered and that a simple urine test is now available for diagnosing ME/CFS. The recommendations regarding treatment are speculative and need to be subjected to equally rigorous clinical trials before any firm conclusions can be drawn about their general efficacy in ME/CFS.”

Comment: It all makes sense – this is all part of the process. Dr. De Meirleir thinks he’s found something – now we need more testing. Dr. De Meirleir would not disagree with anything Dr. Shepherd says – he’s an experienced researcher. My hunch is that he’s done this with enough patients that he’s confident how it will ultimately turn out. I can’t imagine him making an announcement like this otherwise.

I’m looking forward to see what people report with these tests. As per Dr. Shepherds article if you do buy a test and report the results then give some indication of your functional level – how much you can get about during the day. What I’m missing is Dr. DeMeirleir’s protocol – how you deal with this condition. Hopefully there was something on that at the conference.

I’m going to talk to Mariam Lemle – the author of the theory paper on H2S and ME/CFS later today and get her take. She was in London for the announcement.

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chris June 3, 2009 at 3:02 pm

There are several issues here. What I see as the main point is that this simple test is a neurotoxin test – and it indicates within a few minutes whether the patient has this neurotoxin. De Meirleir believes that this neurotoxin causes a gut dysbiosis situation that is responsible for 85% of CFS/ME patients. The other 15%, who are out of the loop, have viruses in the brain. One can conclude from this that this is not necessarily a CFS/ME test, but a neurotoxin marker that identifies the CFS/ME problem. De Meileir believes that this test will relieve the burden on patients who are suffering from a psychological diagnosis -when they actually have a neurotoxin that is shifting their intestines and causing mitochondrial and metabolic problems. The solution that he proposes is what he has been doing previously – identifying pathogens that produce these toxins in the gut, killing them selectively and without causing much damage, and chelating. He of course does other things depending on the circumstances. He has been doing this treatment for a long time, fine tuning it over time, and one can read about it on the internet or view his treatment DVDs. I think that he is convinced that this test is going to be very useful, both for initial diagnoses and for tracking. It is cheap and fast. Watch and see others picking it up fast. For those who have not been paying attention, de Meirleir’s ideas are having a big impact on others – Shoemaker, Peterson, Guyer, and Cheney. He still knows the most about this subject and in time we will see how effective this concept of his actually is. de Meirleir is the guy who connected the dots here. But it is a mistake to think that this entire thing is brand new. The test has just been announced, but he has been using it for some time, long enough for him to have a feel for its efficacy. And his treatment has been evolving, as have those of others.

On the other hand, there are the purists who insist that he is not practicing science and that something so simple could not be that useful, and that he is just out to make a buck. And then there are the conspiracy theorists. I personally, having watch him for five years and read about him, do not believe any of t his.

Chris

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Jazzie June 4, 2009 at 8:34 am

I want to thank of you for the insight on Dr. de Meirleir new discovery, which I read about from another link which also brought me here. I specially want to thank Cort for putting up so much of your energy on your newsletters, which I benefit greatly. Thank you Cort.
Jazzie

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Simon June 4, 2009 at 8:38 am

I believe they are on the right track, I was cured of 5 years of M.E./CFS by taking lots of Doxycycline for about 18 months. I was really ill, and now I’m fine – I’ll never know what caused it, but thank god for antibiotics.

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kaninkoker June 4, 2009 at 6:55 pm

Experts Launch Think Tank for Mystery Disease in Europe, in connection to the next ME-conference in Stavanger, Norway 12 or 13 th of june.
http://esme-eu.com/
http://www.umbertotirelli.it/ESME%20Think%20Tank%20Panel%202009.pdf

Last years Nobel Prise winner of medisicien , professoren Luc Montagnier from France, is one of those who menes something has to be done abut this.

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Fluffy June 5, 2009 at 4:43 pm

CFS is considered an EPITHET by many people with the disease because of the F-word.

The reason for the F-word is something called psychological operations.

This is what the state intelligences agencies use against the chronically ill in order to hide the true cause of the disease. This has trivialized the disease in the public’s eye and worst their own families thereby discrediting them.

Below you can see their true colors
=========
Dr Shepherd and Professor Kenny de Meirleir have both been named as members of the Editorial Board of a new journal called “Fatigue” due to launch early 2010.
==========

Imagine launching a new journal with the F-word plastered in front. Talk about being urinated on.

It amounts to giving you a good kick to the ME/CDIDS/CFS between the legs.

It is just one more assault.

respecting and thanking people like de Meirleir amounts to the victim showing love for their victimizer who violently abuses them. that’s called an abusive relationship.

I would be a pretty good guess to assume that Dr Shepherd and Professor Kenny de Meirleir have hidden agendas and are prostituting themselves for the state military/intelligence agencies and political establishment objectives.

It’s just a continuing strategy to
a) keep research going down dead ends,
b) keep patients in false hope mode
c) hide the real causes – vaccines and vaccines with bioagent additives ,( also intentional water poisoning via fluoride/chlorine and intentional food poisoning via msg, aspartame etc )
d) hide global depopulation agenda and state orchestrated slow kill vaccine genocides and disablement (AIDS,GWS,1918 epidemic etc)

===
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.
===

this seems like an attempt to cover up the disease

The test did not show Ciguatoxin reaction but an epitope that resembled it.

and how would you know that such a similar toxin isn’t the primary component of many of these diseases or accompanying condition

those diseases are likely associated with vaccine damage

given the extreme toxicity of the resembling ciguatoxin epitope , it sure would be an very high priority to figure out what is behind that and how it can be neutralized

Wake Up Folks

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lucy June 6, 2009 at 2:24 pm

Cort – I am still waiting and looking forward to newsletter on Dr Baraniuk’s research!!

I have read this press release and your commentary and still don’t understand this new “breakthrough” – likely just fibrofog tho.

( Do you know if his current clinical trial of Carnosine for Gulf War Illness has much bearing on CFS and FM…)

-lucy

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cort June 7, 2009 at 2:09 pm

Carnosine…..he thinks it does. He thinks exactly the same thing is going on in GWS as ME/CFS but he’s not expecting miracles with carnosine – he’s looking for benefit. That newsletter will be out in the month – after I get the conference stuff finished.

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Rob June 9, 2009 at 2:56 am

I have suffered from M.E for over 23 years and it has been an uphill struggle being unable to work. From my own experience I believe 100% that the gut plays a major role in CFS. I am happy that at last this is being taken seriously. Only time will tell if the theory is totally correct, but I hope he is on the right path. Dysbiosis, IB, allergies, problems detoxifying, yeast problems, recurring infections etc are a constant nightmare on top of the physical and mental fatigue. Keep up the good work Dr Meirleir!

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lyn June 10, 2009 at 5:03 am

I read all the CFS articles with great interest and appreciate the work that Cort puts in, keeping us updated in a way that helps us to understand more easily what is going on in the CFS world. Thanks also to Chris for his input.
I believe I have always suffered with CFS, or from very early on in my life. I had a bowel problem as a baby which later, at the age of 27 years manifested as Crohn’s disease. My parents spent many sleepless nights with me as a child who never went to sleep. This problem has never gone away, even now !
Two years ago I took early retirement from a stressful job, having been diagnosed at 48 years old with CFS, fybromyalgia and an underactive thyroid. My dad has ankolysing spondylitis, [spondylitis is related to crohn's disease] my sister has diverticulitis and many of my male ancestors had bowel conditions, colitis etc, so I find the ideas put forward that the bowel plays a part in CFS very interesting.
I accept my illness and I remain optomistic and cheered that eventually a treatment/cause will be found. Keep up the good work and be sure your efforts are truly appreciated.

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Colin Noden June 10, 2009 at 11:36 am

OK , first thing, the discussion of prions scares me. Not to mention the offhand way they were dealt with. I can deal with a lot of symptoms, but growing into a vegetable is my limit. All the other issues seem to deal with the immune response. What is making our bodies behave in such a self defeating manner? All of the discussion listed above,( and believe me I appreciate and am humbled by the expertise expressed here) seems to be just more focused on symptoms disguised as mechanisms. I’m sorry to sound abrupt. To those who are still fighting ancient thinking regarding cfs and psychiatric disorders…I am in anguish for you and yes celebrate a test which can validate you. But for those of us who are now treating this thing as a disabling phenomena please tell me how to deal with this ” pesky” PRION.

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Joan June 12, 2009 at 12:03 pm

Hi everyone,

I can see you are talking about the new hometest and such, for ME/CFS – and De Meirlier. I am a dane, has been by the “doctor” – had to wait a looong time for my testsresults (nearly 5 months) and my plan for treatment… It came, it was dissaponting, – but my results I checked up on, there vere a lot of viruses possitive but the bakteries he hasen’t tested for proberly… there were not enough blot, he wrote – strange… but one day I was looking on my results, there were written: “You Have a low number of CD57 – and it is an indikation on zoonosis, borrelia or babbesia”. Although he wrote I had ME/CFS – I checked up on other danes who has been tested by him, and many of them has those bakteries: borrelia or. other co/infektions…

Therefore, we don’t have ME -CFS , a lot of us has Lyme Borreliose ( Lyme disease) Try and check this up, and look all vidioes about this on Utube – it is a chock to see how similar the symptoms are.
The new hometest, I am afraid it will not be a good thing for us with these diagnoses, it can be a problem instead.. The test is not a way to better helth it is only a test for kipping us to belive we have the wrong diagnoses and then not the propper treatment.. The test can also be positive with Lyme disease… borrelia and other bakteries make H2S too as far as I am told and high LPS also..

Just a bit of info and thoughts from Denmark

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drew June 13, 2009 at 3:28 am

Bringing the Heat is fantastic … Cort, you are doing a tremendous service to ME/CFS patients by running this website!!

To echo some of the comments above, I know in my gut (sorry about that) that the gut plays a major role in my ME/CFS. I’ve battled this illness for nearly 25 years now, and the symptoms have always been the same: profound fatigue, memory fog, muscle aches, lethargy, depression … AFTER I eat. And it doesn’t matter what I eat … I do not have specific food allergies. However, the more hard-to-digest the food is, the more likely certain other symptoms are to appear as well, such as acne and intestinal gas. So if I eat potato skins, or raw fruit, or All Bran, those symptoms will appear. This is especially true if eat such foods before going to bed. The food apparently putrifies in the gut, and then various nasty organisms in my gut have a party. Candida is obviously one of them, and I consume large quantities of kefir and garlic (odorless) to keep that in check. But — here’s the thing — I really don’t think Candida is at the root of the problem, since I have tried every anti-fungal drug under the sun and my core symptoms (fatigue, lethargy after meals, etc) have never changed. I’m also completely exercise-intolerant and alcohol-intolerant.

So I think DeMerleir is onto something. What confuses me is that there is a competing theory — Chia’s finding on enterovirus in the gut. So where’s the root of the problem? Is it viral or bacterial? I’m really confused but I hope all this research converges and we patients can finally be offered a treatment that will restore some normality to our lives.

Drew

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Mr Skeptic June 13, 2009 at 3:53 am

Colin, Don’t fret about prions. The prion protein is present in a normal body – lots of it. Illness can occur due to abnormalities regarding this protein. The most famous examples are the Spongiform Encephalopathies like new variant CJD and other very nasty illnesses. We’re still awaiting some detail on Dr De Meirleir’s “Prion Hypothesis” but it seems reasonable to conclude that the prion abnormality is different from the type which causes fatal brain diseases. Doesn’t mean the illness isn’t serious or that it’ll be easy to treat, but it almost certainly won’t have you turning into a “vegetable”.

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rhiannon June 15, 2009 at 10:16 am

Thank you for a very informed and intelligent blog-site. Regarding K De Meirleir’s talk at the Invest in ME Conference in London at the end of May, like a number of the other presentations there, the focus was on which infective agents were responsible for causing ME. Dr De Meirleir pointed in particular to enterococcus, streptococcus and prevotella in the gut, saying that an overgrowth of these bacteria produce lactic acid, which could possibly lead to a lactic acidosis. He then went on to talk about the resulting increase of hydrogen sulfide and its role in retaining metals in the body. The cumulative effects of H2S and metals causes a reduction of ATP production (energy in the cells). After referring to the resulting abnormal enzyme/protein structure (?cleaved RNase L) and genetic and environmental factors, he described a treatment protocol, consisting of probiotics (which I’ve now started), enterocoated antibiotics, metal chelation, zinc supplementation and treatment of any opportunistic infections (mycoplasma, chlamydiae) or viral reinfections, these being herpesviruses (HHV-6, Epstein Barr, cytomegalovirus); or enteroviruses and parvovirus 19. He acknowledged Marian Dix Lemle and Henry Butt (University of Melbourne, B1021 Institute). It may interest you to know also that Garth Nicolson, another speaker at the Conference, referred to “multiple infections” being present, in particular, mycoplasma pneumoniae. His treatment was a Nutritional supplement called NT Factor along with anti-microbial treatment. This nutritional approach seems to be to repair damaged cell membranes with lipid replacement therapy and antioxidants. I was interested, if not a little alarmed to hear of his research that showed that children of ME patients get autism/ADHD, while spouses get ME. It was enlightening to hear of his work with various infections and a host of different illnesses, such as Gulf War Syndrome,Fibro, RA, Lyme Disease, MS, ALS and Alzheimer’s. Where De Meirleir was referring to high intestinal permeability, Nicolson was discussing leaky cell membranes. Basant Puri, in the same conference, talked about blood-brain barrier permeability and the usefulness of Glutathione as a treatment option (a tripeptide composed of amino acids glutamic acid, cysteine and glycine). Dan Peterson favoured the treatment option of IV gamma-globulin, or generally called immunoglobulins. He also mentioned some anti-virals and Ampligen. Oxymatrine, a chinese herb, was another therapy mentioned. Anyway, if you’re interested in trying the “Neurotoxic Metabolite Test” as Dr De Meirleir’s urine test is called, you can order it over the net from Protea Biopharma (Belgium) for15 euros, which is let’s face it, is CHEAP. Okay, it may not be the definitive diagnostic test for ME, but it does show TOXICITY which will force doctors to DO something and TREAT patients who turn up to their surgeries with this evidence. It is a fantastic political tool, if nothing else. I suggest that everyone with ME or even suspect they have it, order the test and then go to the doctors. It can only raise awareness. We’ll get there in the end. Keep the faith! Love xxxxxxxxxxx

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Kurt June 15, 2009 at 7:38 pm

Interesting discussion. No amount of discussion of this idea will prove anything. There may a simple way to test Meirleir’s theory. Neutralize some or all of the Hydrogen Sulfide in a PWC and see what happens, does the PWC recover?

There are a number of ways to accomplish this, and not all involve treating infections. One simple approach would be to take Anthraquionone, a naturally occurring substance that blocks bacteria from producing H2S. And Anthraquionone is proven to reduce Hydrogen Sulfide levels in cattle. Anthraquionone is found in Rhubarb, Senna, and in very high levels in Noni. Probably there are other natural sources as well. So in theory, a brave PWC could try some and see what happens. There are probably other ways to neutralize H2S, that is just what I found in a quick search.

Meirleir may be rushing his science and taking some short-cuts, but there is no reason to ignore his finding, as it is very testable. Anyone with CFS can test this idea. And just treating gut dysbiosis (Candida etc) is not a valid test, because we do not know the organism producing the Hydrogen Sulfide (probably a bacteria). But there are ways to neutralize the H2S, which would also be a simple and valid test of his findings.

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Mr Skeptic June 16, 2009 at 7:16 am

I would strongly advise anyone NOT to pay for this “test” at this moment in time. If this “test” is useful and reliable it will be available through your doctor. Dr De Meirleir has chosen to sell this “test” privately from a company in which he has an interest. This “test” has not been held up to proper scientific scrutiny – Dr De Meirleir chose not to go down the route preferred by mainstream scientists. Your doctor will not be impressed by any “results” from it. The company stands to make a lot of money from very ill people ( I’m one of them but I won’t pay privately for this “test” ). Think about it – and WAIT.

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drew June 17, 2009 at 3:01 pm

Kurt–

What you wrote is very interesting. But surely DeMerleir’s team would have neutralized the H2S in patients if it were possible to do so, no?

Drew

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Kurt June 17, 2009 at 7:45 pm

drew-

DeMerlier is obviously still in the process of studying his H2S findings. This type of early announcement is common in the research world when a breakthrough is suspected. So no, I don’t think his team would have necessarily explored many ways to neutralize H2S yet. I was a researcher myself before CFS, releasing early data is often done to help secure ongoing research funding, interest other researchers, or in medical research this is done for humanitarian reasons. For those skeptical of DeMerlier’s motives, I would point out that nobody in their right mind would be in CFS research for the money. AIDS and Cancer research have all the funding. We have too few CFS researchers as it is, and I am willing to give him the benefit of the doubt until his idea that H2S is a major issue in CFS is proven right or wrong. And that will require some experiments with H2S reduction in patients.

There is significant industrial research into the inhibition of H2S production by bacteria, as this is an issue in some chemical industries. And I believe this will probably become an area of interest following DeMerlier’s announcement. Particularly Anthraquionone is interesting as it is proven to be a highly effective inhibitor of bacterial production of Hydrogen Sulfide, and since it is found in many plants and is considered safe for humans generally.

Here is info about the inhibitory action of Anthraquionone against H2S:

http://aem.asm.org/cgi/reprint/62/8/2999.pdf

http://jds.fass.org/cgi/content/abstract/81/8/2251

And as an example of foods with the chemical, the finding that some Anthraquionones are present in Noni Juice:

http://cat.inist.fr/?aModele=afficheN&cpsidt=20021340

There are many Anthraquionones, this is an entire group or class of chemicals. It is also present in Aloe, by the way.

I have no idea if using a natural source like Noni, Aloe, Rhubarb, etc, would work or help, just something that seems worth exploring.

–Kurt

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drew June 19, 2009 at 2:13 am

Kurt–

Thanks for your reply; this is really interesting, and no one would be happier than me if H2S was at the root of the problem and a neutralizing agent was available. I’m going to try Noni juice (but I do realize that, if it doesn’t have an effect, that does not disprove what you’re saying).

Cheers,
Drew

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rhiannon June 19, 2009 at 5:32 am

The Anthraquionone theory is very interesting and might explain why I’ve been loving rhubarb recently!

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Carolyn Richards June 19, 2009 at 7:34 am

Cort,

I have been wainting impatiently for someone to report on the Think Tank meeting of June 13th. Does this mean no news is good news? I thought they were going to hold some type of press release.

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cort July 9, 2009 at 7:27 am

Haven’t heard a thing. It could be a case of a bunch of researchers just not knowing how to get the word out – that’s the IACFS/ME in spades. Looking at their website though they said they would hold a press conference after the meeting on June 13 I haven’t heard anything and there’s nothing on the website about it. I assume it didn’t happen or to they are just very lax in getting the word out on their website. Dr. De Meirleir was going to present his paper at a conference as well – I don’t know if that’s happened either.

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Beady July 10, 2009 at 3:25 am

The press conference on the 13th was cancelled as there was no press showing up!

The think tank did however publish a statement after the conference:
http://esme-eu.com/home/statement-from-esme-european-society-for-me-article52-6.html

And dr. De Meirleirs article are now published:
http://www.cfids-cab.org/rc/Sheedy.pdf

(I apologize if the two links has already been published here)

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Dan July 16, 2009 at 9:01 am

I was wondering if there may be some heavy metal connection (mercury, arsenic, cadmium, lead) with hydrogen sulfide, and turned up this link from 1999:

http://www.beatcfsandfms.org/html/HealYourGut.html

“The Infamous Hydrogen Sulfide (H2S)
When gut bacteria or fungi are attacked by something like a heavy metal molecule (e.g. mercury), they have a special defense mechanism (called a “resistance gene”) that produces Hydrogen Sulfide (H2S) gas, which binds to the attacker and neutralizes it. Subsequently this highly toxic and poisonous H2S gas is created in the gut. H2S can impair the immunity system, especially in the area of neutrophil function, which is used to fight the original yeast in the gut, and hence one can hit a vicious cycle. H2S is very similar to mercury, in that it can bind to many of the things that mercury binds to and inactivate them. In other words, all the bad things that mercury can do, as described here, H2S can do. H2S can also convert the safer Inorganic mercury to the more dangerous Organic mercury, as described here. H2S has a very special circular relationship with the heavy metals; and therefore, it is a very special gas.”

???

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Dan July 16, 2009 at 2:51 pm

Just read Teitlebaum’s early comments on this ‘breakthrough’, and he suggests pepto bismol (not long term), but also zinc acetate helps to bind w/H2S.

Anyway, here’s a study (in dogs) that showed H2S was reduced with zinc acetate, yucca, and activated charcoal:

http://www.ncbi.nlm.nih.gov/pubmed/11294313

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Mr Skeptic July 22, 2009 at 5:03 pm

Can someone please explain what has happened to this grand “think tank” ? Dr De Meirleir had no problems getting publicity for his “test” which he is selling privately to very ill people. Unfortunately his powers of self-publicity have deserted him when it comes to the matter of providing scientific proof of what he said in his London press conference. I see no mention of Hydrogen Sulfide in the “In Vivo” paper, nor of Prions. Unimpressive, to say the least….

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TAG July 30, 2009 at 3:25 pm

I am grateful for any researcher who is willing to spend his time, effort and resources to try to identify the cause of CFIDS/ME. We’re not exactly innundated with physicians or researchers who even believe that we have a real disease. Let’s not trash the guys who are trying to help us.

I would like to see the protocol for the treatment of the H2S producing bacteria .
Does anyone know what it is or where to find it?

TAG

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Beady August 1, 2009 at 2:42 am

TAG: there is no protocol for treating H2S as such… As far as I understand Dr. De Meirleir, the H2S-test is just an indication. If that is positive, further tests are needed to find your individual cause of the situation. When the underlying cause is discovered, he starts treating that. The treatment is therefore very individual, and there is no common treatment protocol that covers all patients.

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Dani September 1, 2009 at 1:13 am

I suffered from CFS after bad gastro in 2005. I had a Metametrix microbial test done which uncovered entamoeba coli, bacteroides, prevotella, and lactobacillus. I was getting pins and needles and numbness in the morning when the hot gas was produced. I did some research and took rhubarb root (da huang). Miracle of miracles – brain fog gone, tonsillitis gone, hot gas gone, foul acrid odour gone, H2S gone. Memory improving, life returning. Now writing a book called “The Rhubarb Miracle”.

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julia September 7, 2009 at 8:50 pm

hi not sure if the rubarb comment was serious but i have a positive test result on prof k d m test as well as positive on all the tests from the slides and mitochondrial function v v poor

i read all the foods that i found made me ill were those tht produce the gas and have cut out wheat dairy wine eggs etc

i feel much better now so this seems to back up wht he says

i also cut out all chemicals from my environment which helped tremendously as well as following the stone age diet not processed food no additives and dr myhills mito supps

dr myhill said from my teeest results that it waas about as bad as it can get

thanks for your great site love it big time

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Dani September 17, 2009 at 3:39 am

Prevotella intermedia – ulcerative colitis, tonsillitis, sinusitis, osteomyelitis, otitis media, mastoiditis, periodontitis, chronic fatigue etc.
Prevotella melaninogenica – endometriosis etc.

Hydrogen sulfide-producing bacteria in tongue biofilm…
http://jmm.sgmjournals.org/cgi/content/abstract/54/9/889
http://jmm.sgmjournals.org/cgi/content/abstract/57/5/636

Turkey rhubarb root treats prevotella and other bacteroides

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Dani September 17, 2009 at 4:22 am
Vidar Gustad June 2, 2013 at 2:03 pm

Very good news – i have very good experience with treatment from De Meirleir and many of my friends getting better after using his treatment. I think he has improved his results a lot during the years and this could be very intresting.

Big thing will happen now because its no doubth this illnes(es) is fysical as any other disease.

Vidar
Norway

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