This could be the biggest news ever concerning chronic fatigue syndrome (CFS or ME/CFS). Prominent ME/CFS researcher Kenny de Meirleir announced that he and his Belgian research team have uncovered a major cause of ME/CFS and a major underlying mechanism of the condition. What's more, he says they've also developed a simple and inexpensive home test kit for ME/CFS.
The Cause & Mechanism
According to Dr. de Meirleir, a major cause of ME/CFS is a high level of the chemical hydrogen sulfide (H2S). H2S can build up after antibiotic use, salmonella infection, or too much mercury exposure.
H2S is a potent neurotoxin that can cause photophobia (fear of light), noise intolerance, mitochondrial dysfunction, a depressed immune system, and an abnormally low white blood cell count. H2S production may be further increased by the interaction of certain bacteria (which previous research links to ME/CFS) and metals in the body.
H2S can lead to changes in liver mitochondria that limit the liver's ability to filter out heavy metals, especially mercury. Mercury is a known neurotoxin that can lead cells to destroy themselves (apoptosis) and interferes with the cells' ability to utilize oxygen.
The Most Disabled
Dr. de Meirleir also says the bodies of those who are most disabled by ME/CFS have begun to develop aberrant prions. Normal prions are harmless proteins, but aberrant prions can cause disease even though they're not viral bacterial or fungal. Prions are believed to be involved in several degenerative brain diseases, including mad cow, Creutzfeldt-Jacob, and possibly some cases of Alzheimer's.
Aberrant prions can spread disease, so this finding could account for reported outbreaks of ME/CFS. About 10% of bedridden patients had high prion levels in their saliva.
The Test
Dr. de Meirleir says the ME/CFS diagnostic test accurately shows whether you have high levels of hydrogen sulphate in your urine. It's a simple color-change test, similar to what's commonly used in home pregnancy tests. It will soon be available from Dr. de Meirleir's company Protea Biopharma.
- Read a preliminary abstract of this groundbreaking study.
- Learn more about the test.
- View slides used in Dr. de Meirleir's press conference.
the urine test for hydrogen sulphate is part of our CFS diagnostic session, incl Epstein Barr, HHV-6 an all the other viruses.
Thorsten C. Hollmann, http://www.CFS-center.de, Germany
Prion disease could NOT have explained CFS/ME outbreaks, it’s absurd to make such a claim.
I have had CFS for nearly ten years and I’m dubious about this “major cause”. If it indeed helps some people, that is wonderful, but the root causes named do not apply to me.
I’ve used antibiotics cautiously and rarely in my life, never knowingly had salmonella poisoning, and tested negative for heavy metals.
I hope the test helps people, but I don’t see this as the big breakthrough for CFS or if it addresses “my” CFS.
Does this imply any new treatments?
I guess the statement “About 10% of bedridden patients had high prion levels in their saliva.” doesn’t really prove to me that this is the one and only cause. I would think 100% of patients dxd with CFS would have high prion levels if this were the cause?
I’m quite discouraged after reading about prions. To date, any prion diseases are ‘untreatable and always fatal’, per one internet source. Of course, that’s not always accurate. I’m not hanging my hat up yet!!!
My story:
I had a toxoid vaccine shot about 2 years ago. Ever since then I have had fatigue and symptoms very similar to cfs. Doctors have not been able to help me. I am starting to think I have cfs. The funny thing is, there is mercury in vaccine. I also suffered an infection after the vax. So it could be related.
Hmmmm…
It’s my understanding that Chronic Fatigue Syndrome is typically one of the many symptoms of Candidiasis or “Antibiotic Syndrome” as Dr. Orian Truss termed it in the 1950s. That’s right. Dr. Truss had this sorted out in the 1950s. The above article mentions that the problem can be brought on by antibiotic use, but fails to mention that that use often allows Candida to run wild in the body. People, search these terms: antibiotic syndrome, candida symptoms, candida overgrowth, and candidiasis.
Also, there are some treatments out there are being used very successfully to treat people with Candidiasis, helping them with their symptoms of CFS, Fibromyalgia, “brain fog”, GI disorders, allergies etc. etc. One of the treatments is also successfully being used by doctors to treat children with autism. Here is something to consider. Yes, they put mercury in vaccines. The Amish do not suffer from autism. The Amish do not vaccinate their children…
I’d like to see this published in a peer-reviewed journal before I buy it. I’ve been spun around enough by “new proof” in my 10 years of having fibro/CFS, that I’m not getting excited about anything — no, scratch that, I’m not *believing* anything — until it’s peer-reviewed. I find a press conference and an abstract published on a marketing website to be particularly suspect.
The “abstract” says they’re looking for a journal to publish in. That’s good. I’ll consider their results after that’s happened.
Paul,
It’s true that candidiasis is sometimes linked to FMS & ME/CFS, and treating it can help alleviate symptoms for people who have it, but just as with this discovery, it’s only one possible cause and isn’t the problem for all of us.
The link between antibiotics and candidiasis is interesting, though — I hope that’s addressed by the full paper when it’s published.
Guide Note: Paul reposted this in part after the number of links in this, the original, landed it in moderation. I approved it so anyone who’s interested can take advantage of the links he provided.
chronicfatigue, how do you know it isn’t part of the problem for all of you? How much have you really researched the effects of candida? I’m not asking this to be combative, I’m asking you to ask yourself this.
I’m not an expert by any means, but I don’t believe that “this discovery” is a discovery at all. It’s very old news. That H2S amounts can get high in the body, when things get out of whack, and that it causes all of the symptoms listed in the article, is simple nothing new.
The link between antibiotics and candida addressed in the full paper? That’s doubtful if they think that the link to high H2S and the symptoms they list is anything new.
If you are really interested in the links to antibiotic use and all of the symptoms listed in the above article and many more, read ‘The Missing Diagnosis’ by Dr. Orian Truss. It was written in the 1980s and includes many case histories. It is out of print, but you can find it used online.
Here is a link with a little info on Dr. Truss’ work in the 1950s, and a few more links of interest.
CANDIDA and the ANTIBIOTIC SYNDROME – http://www.health-science-spirit.com/candida.html
CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME – http://www.drcranton.com/yeast.htm
Fungus causes most chronic sinusitis, researchers say – http://www.candidafree.net/resource_28.htm
Candida albicans (yeast), Headaches and Migraines – http://www.nutritioninstitute.com/10.html
ARE MOST DISEASES CAUSED BY THE MEDICAL SYSTEM? – http://www.whale.to/a/last1.html
It looks like they are not going to post my last post. It probably was too long, with too many links. We’ll see if this partial is ok.
chronicfatigue, how do you know it isn’t part of the problem for all of you? How much have you really researched the effects of candida? I’m not asking this to be combative, I’m asking you to ask yourself this.
I’m not an expert by any means, but I don’t believe that “this discovery” is a discovery at all. It’s very old news. That H2S amounts can get high in the body, when things get out of whack, and that it causes all of the symptoms listed in the article, is simple nothing new.
The link between antibiotics and candida addressed in the full paper? That’s doubtful if they think that the link to high H2S and the symptoms they list is anything new.
If you are really interested in the links to antibiotic use and all of the symptoms listed in the above article and many more, read ‘The Missing Diagnosis’ by Dr. Orian Truss. It was written in the 1980s and includes many case histories. It is out of print, but you can find it used online.
And as I can’t post links, I urge you all to search online for: Dr. Orian Truss, candida chronic fatigue syndrome, candida hydrogen sulfide, candida immune system, candida antibiotic syndrome.
Paul,
I actually know quite a bit about candidiasis and its symptoms, and I’ve confirmed that it’s not behind my symptoms — both through objective testing and because my symptoms have mostly resolved with other treatments. Candidiasis is one of those things we should all check for, but only certain subgroups of us actually have a problem with it.
Also, you can post a link or two, but anything beyond that will be held for moderation in case it’s spam.
chronicfatigue, understood. If I can ask, what treatments resolved most of your symptoms, and which symptoms still remain?
That post had 6 links in it. I’m sure it went down in flames…
Paul,
I’m not sure why my name is coming up as chronicfatigue — sorry for any confusion, but it’s Adrienne, the Guide here.
I have fibromyalgia and not chronic fatigue syndrome (for which I’m exceedingly grateful!), but candidiasis can exacerbate or mimic either condition.
The treatments that have worked for me have mainly been acupuncture, supplements and lifestyle changes.
At this point, my symptoms are greatly reduced but still there. The worst are problems sleeping, pain (although much less than I used to have), short-term memory impairment (improving), trouble multi-tasking, and reduced exercise tolerance.
Adrienne, don’t you love all of these wonderful symptoms? I had every symptom you listed regarding yourself (current and past) along with almost every other symptom a man can have shown here: candidafree dot net/index dot htm
plus red eyes, which I don’t believe is on that list.
After going to various doctors and having many tests, with no breakthroughs, I become disillusioned. I had stumbled across info linking these to candida, but every doctor I asked said “no, that can’t be it” or “no, that’s only in women.” They’re the doctors, so took what they said as the gospel. (I’ll never do that again) After realizing that the doctors were more harm than good, I decided if anything was going to get resolved, I’d have to do it myself, so I studied everything I could find in book and online. I kept coming across thing saying that just one round of antibiotics, or birth control pills for you gals, can be enough to trigger candida overgrowth in the gut which can go on to create systemic candida overgrowth in the entire body. Finally, on a day where I was more clear-headed than usual, it hit me that my problems could be traced back to being given extended rounds of antibiotics for acne in high school. I had mentioned these antibiotics to the doctors before, and they of course dismissed them saying “that can’t be it” so I had dismissed them as well. Of course over the years, the sinus and ear infections that started coming along after high school, were becoming more and more frequent, and of course, they were always treated with antibiotics, and in recent years with predizone (another no-no)as well.
I decided the doctors were full of mud, and that severe candidiasis was my problem, researched it throughly and decided on some products to try. My diet was already pretty good as far as candida was concerned. I won’t name the products here.
I was prepared for disappointment, but after about three weeks of this treatment, I was surprised one morning to wake up and actually feel good. My “bar” for feeling good had become so low over the years, that I was shocked at feeling so pain-free, well rested, clear headed, and like I could tackle the world. Things have been steadily getting even better ever since, and I have taken liberties with food and alcohol that I shouldn’t have.
Just wanted to share what I learned, in the hope of helping others, as I no longer have much confidence in typical big pharma/big medicine.
what in the world did you take, paul, that helped? send me an email if you don’t want to post it here. but don’t leave us hanging!!
Sadly, I think most of us experience disillusionment at some point. My doctor diagnosed me in one breath, and in the next said there was really nothing she could do for me. Like you, I started researching and before long I noticed that the neurotransmitters that kept cropping up were also implicated in numerous conditions that are rampant in my family. After a horrible experience with Lyrica, I found a collection of things that regulate them naturally and that has made me functional again.
I keep seeing the same theme come up — do your own research, find the thing that makes the most sense for you, and try it. That seems to be the best “treatment” method there is for us!
Adrienne,
Our modern medical system seems to be all about prescriptions that make things worse and operations that are often unnecessary.
I’m still convinced from my research that so many of the diseases, including Fibromyalgia and CFS, that the pharmaceutical companies enjoy selling so may drugs to treat (not cure) are in reality symptoms of Candidiasis. I’m not a doctor (not that I have much regard for them these days), and I would welcome any and all info that would show that my assumption is wrong.
If you don’t mind telling me, I am interested to know how you ruled out Candida.
Also, I hope it is ok to leave this excellent health link. http://www.health-science-spirit dot com/contents.html
Paul,
My doctor did some tests to rule out Candida — I don’t recall which ones, but she wanted to rule it out before making a diagnosis. (While she’s no fibromyalgia expert, she also does Chinese medicine and so takes a more natural and holistic approach.) Dietary changes also didn’t do anything for me, and like I said, my neurotransmitter-targeted treatments have worked wonders. My pain is low, and I’ve restored a lot of my cognitive function.
A lot of people have tried the Candida treatment route, and some get better while some don’t. Personally, I think there are probably several dozen things that can send the body into the widespread dysfunction we have, and the key to getting better is figuring out what factors caused yours.
Adrienne,
Thanks for the response, and my apologies if I’ve become annoying. This is all fascinating stuff. You mentioned some lifestyle changes. Can you elaborate?
Paul,
No problem! Lifestyle changes … where to start?
The biggest thing was quitting my full-time job. I was a TV news producer, which means constant stress and a million details to manage. I was putting all my energy into my job and still didn’t have enough to do it properly. I hoped to find freelance writing work and have been very fortunate in that regard.
I’ve also learned to pace myself. The biggie there is working in short bursts, then taking time to rest. I pay attention to my body and stop when it says stop. It used to stress me out that I wasn’t getting enough done, but I’ve adjusted my expectations and try to focus on what I have accomplished instead of what I haven’t. When I need rest, I rest. When I have energy, I get stuff done but try not to over-do.
I also make sure to set aside time for fun. Since those of us with low energy never feel like we’re caught up on things, fun can get lost in the shuffle but it’s important for both mental and physiological health (especially when you’re dealing with brain chemistry!) I schedule time to spend with friends at least 1 day a week (they understand if I have to cancel.) Because my work schedule is flexible, I take breaks to play with or read to my kids now and then. That makes the work and the rough times more bearable.
Staying functional with these conditions can be a full-time job!
Adrienne,
Stress seems to be the biggest evil of all. And I guess fluoridated and chlorinated water, along with a food supply low in nutrients is the next biggest.
Sounds like you’ve come an extremely long way. I like your philosophy, and will try to remember it for myself.
Be sure to eat organic, use non-fluoride toothpaste and drink RO or properly filtered water as well.
Thought this might be of interest:
Here also is a quote from Dr. Jacob Teitelbaum’s book, “From Fatigued To Fantastic”:
“There are no definitive tests for yeast overgrowth that will distinguish yeast overgrowth from normal yeast growth in the body. There is one test that may be useful, though. This is a urine tartaric acid test. Tartaric acid is a waste product of yeast overgrowth. In fermenting wine, for example, it is critical to remove the tartaric acid. Otherwise, the wine would be toxic to people. Dr. William Shaw, head of the Great Plains Laboratory in Kansas City, Missouri, has found elevations in urine tartaric acid in both CFIDS/FMS patients and autistic children. In my experience, however, using Dr. William Crook’s yeast questionnaire is still the most reliable way to tell if a person is at risk of yeast overgrowth.”
From the comments so far, it appears no one has really followed the links and looked at the slide show presentation. Hydrogen sulfate could very well be the main mechanism for many of the symptoms CFS/ME patients have. The severity of symptoms could be a factor of individual genetic variations:
http://www.blisstree.com/geneticsandhealth/cfs-and-me-chronic-fatigue-syndrome-genetic-origin-not-only-psychological/
A link to the De Meirleir slide show with a transcription of talking points (scroll down)is here: http://www.slideshare.net/guest478151/kenny-de-meirleir-mecfs-hydrogen-sulfide-and-aberrant-prion-disease. When you combine genetics the possible causes of CFS listed in the slide show )and not just the few mentioned in the summary of this news by Ms. Dellwo)the resulting complexity could result in hundreds of different expressions of this illness
dsg, I don’t know about anyone else, but I understand. My main contention is that the hydrogen sulfide is probably coming from Candida in most of these sufferers CFS/ME, and that hydrogen sulfide being behind so many of these problems is nothing new.
Candida and Parkinson’s? http://www.bmj.sk/2006/107067-01.pdf
Sorry, but you are quoting from a Conspiratorialist website.
That site is full of crackpot theories and anti-government paranoia.
The board that governs this doctor has called for his resignation:
http://www.ncf-net.org/forum/CallForResignation.htm
Maybe you should reference a real medical/research journal like cfids.org.
Isn’t “About.com” supposed to be a reliable site for a variety of information?
Disappointing.
From CFIDS.org:
35 GENES Linked to illness Course in Postinfective CFS
The July 1, 2007, issue of Journal of Infectious Disease reports a study of a subset of CFS that follows Epstein-Barr virus infection. Researchers compared seven subjects whose illness did not resolve after six months with eight matched subjects who promptly recovered. Analysis of samples collected over time revealed THIRTY-FIVE (35) GENES for which CHANGES in expression were CONSISTANT WITH ILLNESS COURSE. Signal transduction pathways, metal ion binding, and ion channel activity were implicated. This report builds on an earlier study of postinfectious CFS reported in the September 16, 2006, British Medical Journal (below) by Andrew Lloyd and collaborators in Australia and at the Centers for Disease Control and Prevention.
I refer to a good write-up of de Meirleir’s work by this father of a 35 year old sufferer with CFS which emphasises that it is the gut “going down” that is the trigger in a high percentage of CFS cases – this tallies with my own experience…(http://www.123people.co.uk/ext/frm?ti=person%20finder&search_term=kenny%20de%20meirleir&search_country=GB&st=person%20finder&target_url=http%3A%2F%2Fcfspatientadvocate.blogspot.com%2F2009%2F06%2Fdr-kenny-de-meirleir.html§ion=blog&wrt_id=261 )
Almost 18 months ago I had to give up work and all semblance of life as i once knew it due to CFS with extreme and incredbily painfuly Chronic idiopathic constipation. I have suffered gut problems on and off all my life and for the previous 2-3 years prior to developing CFS – the main symptoms for me being recurring sore throat and glands and of course overwhelming house and often bed-binding exhaustion. I have had the test referred to in this link done by de Meirleir’s research laboratory and the findings are consistent with the de Meirleir team’s research. I have an overgrowth of streptoccoci, Prevotella and severe dysbiosis but I am interested to see if anyone has gone through Prof de Meirleir’s treatment programme and has improved. It is reported he treats thousands of CFS patients each year yet no internet searches to date, have revealed stories of people successfully treated by him – I would be fascinated to hear of success stories.
i think they should try and publish in the lancet! i would imagine the editor would tell them to go and urinate in a cup. another charlatan that belongs to a clown circus who is trying to live off of sick patients. how many more treatments will we hear of next week. i guess another retrovirus will be a cause. wait a minute here comes hyde crawling around the corner with another enterovirus theory. a total cfids circus. i now imagine all those clowns driving around in circles in their tiny cars and wearing their clown suits. problem with this illness is to many doctors who claim to be world renowned researchers and they cannot get out of bed themselves. total cfids circus…
i can suggest to anyone with cfs read this website http://www.watercure.com
This makes sense to me. I was diagnosed with fibromyalgia 30 years ago. As a child I had many antibiotics for strep and tonsillitis. I kept biting thermometers and breaking them so I was exposed to mercury. I took nystatin about 25 years ago for a year or two and it did help. It was for systemic yeast infection which the dr thought was the cause. Maybe he was onto something.