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June 1, 2009
At 11:00 AM London time on May 28, 2009, ME/CFS researcher Dr. Kenny De Meirleir, MD, PhD, spoke at a press conference unveiling his team's groundbreaking findings regarding the illness called Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). The presentation covered the team's conclusions concerning the complex mechanisms of ME/CFS pathogenesis, a diagnostic test they have developed "for a major cause of ME," and possible therapeutic strategies.
(Dr. De Meirleir, a Belgian scientist known for his cutting edge ME/CFS research, is a professor at the Vrije Universiteit Brussels and Director of HIMMUNITAS Foundation Brussels.)
FOLLOWING BELOW ARE:
• Links to two versions of slides covering the information presented in the press conference and in the presentation Dr. De Meirlier gave Friday, May 29 at Invest in ME’s International ME/CFS Conference in London.) IiME will publish a conference review soon, and is taking orders for a DVD to be available in July. During the IiME lecture, Dr. De Meirleir indicated to attendees that he would be revealing more detail within two weeks.
• A link to order the ME/CFS Home Testing Kit described in the presentation.
• The preliminary draft abstract of an upcoming journal article by the De Meirleir research team (“Research on Extremely Disabled M.E. Patients Reveals the True Nature of the Disorder”)
• A link to ME/CFS/FM research reporter Cort Johnson's thinking on the questions these summaries raise, at least until more detail is provided and other researchers are able to get clarification.
• A link to Rich Van Konynenburg's comments on hydrogen sulfide (focus of Dr. De Meirleir's presentation) and the methylation cycle in CFS posted May 31 on ProHealth's ME/CFS/FM Message Board.
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SLIDES USED IN PRESS CONFERENCE/PRESENTATION - TWO VERSIONS
To view the slides Dr. De Meirleir used in his press conference, titled "Unravelling the Origin of Myalgic Encephalomyelitis: Gastrointesinal Dysfunction, Production of Neurotoxins and Environmental Exposure," posted on the Co-Cure Listserv Monday, June 1 on behalf of Tate Mitchell, go to http://www.steungroep.nl/index.php/component/content/article/195 and scroll down.
To read another version, posted earlier, on May 28, go to http://www.mefmaction.net/Portals/0/docs//CFSDeMeirleir.pdf.
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THE URINE TEST Dr. De Meirleir mentions is offered for sale online as a home testing kit via his company - Protea Biopharma. To read more about the test and order, go to www.proteabiopharma.com/page/diagnostics.php
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ABSTRACT OF UPCOMING JOURNAL ARTICLE – Preliminary Draft
The De Meirleir research team will also publish a journal article on their work. The following draft was disseminated via the CO-CURE listserv May 28 by ME research reporter Jan van Roijen (j.van.roijen@CHELLO.NL).
Research on Extremely Disabled M.E. Patients Reveals the True Nature of the Disorder
By Kenny De Meirleir(1), Chris Roelant(2), Marc Fremont(2), Kristin Metzger(2), Henry Butt(3)
(1) Vrije Universiteit Brussel & HIMMUNITAS foundation, Brussels, Belgium
(2) Protea Biopharma, Brussels, Belgium
(3) Bioscreen & Bio 21, University of Melbourne, Melbourne, Australia
In this study we compared totally bedridden patients (Karnofski score 20-30) with less ill ME patients (Karnofski score 60-70), family controls, contact controls and non-contact controls.
EBV, HHV6 and Borna virus titers were not different in the three groups. Plasma LPS distinguished the groups, with the highest values in the bedridden patients.
LPS [lipopolysaccharide] is a strong activator of the immune system, and high plasma concentrations suggest a hyperpermeable gut. There are many possible causes for this, but a lack of 'local' energy production is one of them.
In a separate study (In Vivo, in press) we observed intestinal overgrowth of Gram positive D/L lactate-producing bacteria which are also known to produce H2S [hydrogen sulfide] in presence of certain heavy metals as a survival defense mechanism.
We therefore hypothesized that the urine of the bedridden ME patients would contain more H2S derived metabolites than the less ill and the controls. Using a proprietary simple color change urine test this hypothesis was confirmed.
In the extremely ill, urine added to the yellow color reagent immediately turns dark blue, whereas in the less ill the reaction is slower and in the controls no reaction occurs.
Being a potent neurotoxin, H2S induces photophobia, intolerance to noise,
mitochondrial dysfunction by inhibition of cytochrome oxidase, and depresses the cellular immune system and induces neutropenia and low numbers of CD8+ lymphocytes.
Its effects, at least in part explain the clinical condition of the severely disabled ME patients.
Furthermore the effects of the bacterial H2S induces increased ROS production by the liver and retaining of heavy metals particularly mercury in the body.
The latter is also neurotoxic, induces apoptosis, and interferes with the aerobic metabolism. Chronic increased production of H2S by intestinal bacteria leads to build-up of mercury in the body as proven by a Zn DTPA/DMPS challenge test.
Finally in 20% of the ME patients (in the severely ill) we found, using a special luminescence technique, aberrant prions which also interfere with the energy metabolism.
These patients have gone on to develop A.P.D. (aberrant prion disease – patent pending). These aberrant prions give rise to a transmissible disorder. 10% of the A.P.D. patients have very high prion counts in their saliva and can directly transmit it to others.
APD patients can transmit these proteins via blood and likely also through sexual contact which then can give rise to slowly developing aberrant prion disease.
In a separate experiment 40 healthy blood donors were screened for A.P.D. One individual tested very positive, indicating that apparently healthy individuals can already be carriers and that blood transfusion carries the risk of transmitting A.P.D.
In conclusion, ME is a disorder which is caused by increased endogenous H2S production. For the latter many factors can be present.
Because of the effects of H2S in the body a chain of events will develop which have more and more negative effects on the aerobic metabolism and depression of the immune system leading to more and more infections and reactivation of endogenous viruses.
In its final stage aberrant transmissible prions develop which put the patients in a total energy depleted state.
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CORT JOHNSON'S SUMMARY OF POINTS STILL TO BE CLARIFIED - see "The Big Breakthrough?" at http://aboutmecfs.org/blog/?p=539
RICH VAN KONYNENBURG'S COMMENTS ON H2S & ME/CFS posted May 31 on ProHealth's ME/CFS/FM Message Board - see http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1351932
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ME does not always progress to the 'final stage
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Posted by: deodora
May 28, 2009 |
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Hello, In his press release of 28th of May 2009, Dr. Meirleir indicates that ME is a progressive disease. This is not my experience, I never progressed beyond a certain point, which is, basically, the point at which it started. From there I improved, though very gradually, over about 9 years. I was never bedridden. From others, I get the same impression, namely that you come down with your worst scenario and that most people recover from there on. So, what does Dr. Meirleir mean when he says that people grow worse and can reach the final stage (which is a stage in which people are bedridden)? Surely, he is not describing the usual, normal course of this disease?
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Positive feedback loop?
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Posted by: PatrickCTN
May 29, 2009 |
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If I understand correctly De Meirleir is saying that bacteria produce H2S as a defence against mercury. The H2S then causes the body to accumulate more mercury. This is a positive feedback loop which could only have one result - rapid buildup of mercury leading to death. AS has been pointed out by Deodora above, most cases of ME are relapsing/remitting in nature and not progressive. So Dr Meirleir's model must be wrong. Deaths due to ME/CFS do occur but they are usually not attributed to ME/CFS because the immediate cause of death is a heart attack or some other 'normal' cause of death. A few deaths may have been due to medical mismanagement - like that of Sophie Mirza.
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M.E.
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Posted by: Bernie McMullan
May 29, 2009 |
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My experience with M.E. is that it has got worse over the last three years. I have it approx 3 years or so and i can feel in my body that my fatigue especially has got a lot worse. I do get relapses and then feel better so i believe that it comes and goes and also depending what you do actively or mentally also affects its severity.
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Progressive Relapsing/Remitting ME
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Posted by: viralfree
May 29, 2009 |
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My case of ME has most certainly been progressive R/R. But then i've noted the illness for the past 30 years. Given recent presentations on Pediatric ME symptoms, it is most likely i had this illness since childhood.
It just progresses at a snails pace! With degradation of the immune system, each new pathogen compounds the illness.
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ME/CFS is not one illness
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Posted by: beanier
May 30, 2009 |
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The current theory is that there are many different subtypes in what is currently known as ME/CFS. Some have a distinct flu-like onset with neurological sequela, sore throats, etc, while others have a gradual course, no sore throats, etc. Each of these is likely to be a distinct clinical entity, similar to a bag of Halloween candy. Kisses, Crunches, peanut-butter cups, all have chocolate in common, comparable to fatigue in our cases, but all are distinct from one another after you look past this common denomenator.
Some commonly regarded aetiologies to ME/CFS include enteroviruses, organophosphate pesticide exposure, and human endogenous retroviruses, among others, with each of these being a distinct clinical entity, if I'm not mistaken.
One thing I have noticed is that my own illness, which had a gradual onset, is most definitely progressive, while others may have a stable(though poor) course to their illness.
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So What??
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Posted by: drewmanman
May 31, 2009 |
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As with countless other ME/CFS "breakthroughs" in the past 20 years, this is a big "So What?" for ME/CFS patients. Even if H2S is at the root of the problem -- and that is a big "IF" -- where is the answer to the problem. Where is the therapy that will alleviate the suffering? To me, this smacks of an attempt to make money off of patients, rather than being a legitimate breakthrough. I hope I'm wrong.
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TO: DREWMANMAN
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Posted by: Leaknits
Jun 11, 2009 |
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Your last comment in your post had to do with your hopes that you are wrong in your suspicion.
Sadly I don't think you are.
Doubtless, this Dr Kenny De Meirleir is known to some portion of this Disease Group we never would have joined, had we been offered the chance to say yes or no.
I never heard of him.
All I know is that here he comes, bucketty bucketty, acting as if he thinks he's some sort of medical Messiah for those of us who deal with this hydra-headed monster...and drs who don't know what it is or don't care or, if they do know what it is or care, their waiting rooms more resemble dormitories stuffed with people as compared to a relatively more calm plain old GP's waiting area.
"He Has Revealed the True Nature of ME/CFS," indeed.
I'm willing to bet 99.9% of the people bashed by ME or CFS could speak for hours (if they had the strength and/or energy to do so, that is) as to the true nature of this life and spirit and strength and memory-robbing (to inculde just a few of its' facets)___________ thing.
It's True Nature is that it can range from being as mildly annoying as a short-term cold to as devastating as being hit with a more visible but still occasionally fatal MEDICAL illness.
I wasn't YELLING in the previous paragraph with MEDICAL in all caps.
I was trying to make a point.
Try an experiment: Call a hospital local to where anyone who might read my words lives. Ask for some names of ME-understanding-and-treating-adequately drs for this d'd.
Let me know if you find one...ONE...out of a dozen or so who does not act as if this rotten mess is a mental illness.
WE know it isn't a mental illness but is a physical ailment that can cause mental aberrations. BIG difference.
If we know that, why don't the majority of the drs who purport to be able to help us?
Dammit, it's my body that's ill, not my mind.
And to go completely off the topic (Drewmanman, I apologize for highjacking your post) when will our drs stop going miles and miles off-label to guineapig we patients with the "Let's Try THIS Stuff On You" school of medicine.
Just because someone in East Doorknob which may or may not be located somewhere around the Bermuda Triangle claimed he or she had some symptom and an off-label med helped him or her with whatever it was, it DOES NOT MEAN
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40 years of ME/CFS
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Posted by: anomar
Jun 3, 2009 |
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I have been through it all in forty years and this research does not impress me. Sorry.
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Overall, this makes sense,
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Posted by: colinjn
Jun 10, 2009 |
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This analysis covers most of the known contributors and puts them in a nice sequence and relationship. It fits with my experience in many ways. As far as CFS not being progressive, I would point out that most if not all of us have tried various methods of intervention. I think that these efforts on our part skew our experience.
When I went off all forms of intervention I rapidly went downhill, and back to a bed ridden state.
Also our personal experiences may differ depending on where in this cycle we have chosen to intervene.
Very intriguing, and worth a second look. Not too happy with the prion concept. That is one scary beast!
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ME/CFS....DeMeirleir/ Progressive illness
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Posted by: scottyojai
Jun 10, 2009 |
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I must disagree with Deodora. I've been sick for 20 years and have slowly progressed to the point DeMeirleir talks about where every bit of energy has finally left my body and the only thing left now is to await death. There has been some up periods, only to be followed by the inevitable long downs. The ups become shorter, the downs become longer. I think DeMeirleir is on to something....but alas, probably to late for some of us.
His theory of transmission thru saliva and sexual contact has merit also, since my wife of 38 years has had the same illness for 22 years. We have spent every bit of money we had, and much more we didn't have, on every treatment imaginable, possibly helping to bankrupt Medicare and Medicade in the process. ....i could not possibly list everything we've tried in this space provided, but most of you can guess.
What i have just said does not apply to all of you, and for that you can thank your stars, and never forget how lucky you are....there could still be some help coming soon.
If i have saddened some of you i am deeply sorry, but i have no time or energy left to offer much hope. What has happened to my wife and I is a horror beyond anything most people can imagine.
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agree or disagree doesn't matter
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Posted by: justplainsandi
Jun 10, 2009 |
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i'm so very glad that dr. mierlier has said what he's said, created the tests he's created, and done it the way he's done it. even if it only applies to some of us, he's said some things that can maybe scare the public enough to listen to sense more than to the accountants.
it's contagious, it's awful, it's progressive, and it can be fatal.
instead of trying to argue or nit pick, we should all applaud him for the help he can potentially give and then say that it's not the end of it all, so we'll keep on going. that's how change happens. by keeping on keeping on, no matter what, knowing that someone else will pick up the ball when and where we leave off. we didn't get here by ourselves, and the world won't end when we go. if we do what we can, no matter how little, at least we've tried, and our hearts have been in the right places.
sandi
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Dr meirler
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Posted by: brains
Jun 10, 2009 |
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This is the first time i have ever read what i say is the real answer to this terrible disease everyone keeps saying it is not contagious LIE i have seen it spread in my own family.I knew that it spread through the salavia because i experience it 2 times when i kissed 2 friends within 5-8 days they where sick as a dog #1 said he was going to the hospital his head hurt hims so bad so sick wanted to die.Next#2 from out of town visiting hadnt seen for 8 yrs kissed good bye when talked to him again he said about 8 days after i kiss you i was so sick.Not only through the salavia but also simply handshake touch of skin very easily transmitted!I have realized this but who could u make believe it with all of this not contagious being printed.It does like a spider to a fly takes everything out of ur body if u dont keep putting it back that is it for u .THIs DISEASE KILLS!!!I kept saying chemical warfare we match up with gulf war symptons to the tee.I have lost all of my teeth now iam losing all of my hair I have spent so much money on my teeth now to lose them all iam not old by any means.Because of gut I am not absorbing nutrients.Also muscles wasting I weigh almost 200 but looking at me would not believe because no muscle can not digest protein. Also Blood clots this APS says some have Fm the other way around this disease is creating this gene that cause blood clots many i know have chronic blood clots hysterecomy from tumor and cysts thyroid nodules etcs i could go on and on!!!! PLease listen to this Doctor and believe me he know s what he is talking about i know we have to be careful about crooks BUT HE IS RIGHT!!!!!!
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Me as a progressive illness
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Posted by: Athene
Jul 6, 2009 |
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I think the point about ME being a "progressive illness" is not related to the fact that symptoms slowly get worse and worse. They obviously don't. We all know they wax and wane.
The progressive nature of the illness involves damage to organs like the heart which are harmed a bit more each time you have a relapse. It is this damage which brings you slowly closer to death. Going into relapse can make the brain fog and ching muscles go away but it does not undo the damage to your heart and other organs.
I have had ME for 20 years, I have had heart surgery once so far, but I know I may need it again.
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Nobody said ME/CFS has hard-fast rules, Plans of Treatment
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Posted by: NavyJAGSouth
Aug 21, 2009 |
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I am one of those bedridden Chronic Fatigue patients, deteriorating as time passes. The CDC-NIH offers some idea of the percentages regarding this illness. Some get sick and remain on a functional plateau. Those that receive any treatment at all within the first 2 years stand a chance of partial recovery, almost normal. I have never seen anyone that had this disease, and FULLY recovered. Most people are unable to acquire an accurate diagnosis within 2 years. The VA accurately diagnosed me with Chronic Fatigue in 1992, less than 2 years after the triggering event that was cocktail vaccines. But VA failed to tell me what diagnosis they gave me in my military medical records.
I have researched and published both medical and legal aspects of CFS-Gulf War Illness for more than 15 years. I usually know more about these diseases than either physicians or lawyers with whom I work.
I have seen one New York television reporter that claimed she had Chronic Fatigue symptoms, and then fully recovered. But she never had blood, urine tests and/or biopsies to prove that she suffered CFS/ME, rather than some other disease. She also claims that she never took antibioitics, anti-virals, anti-microbials, or antifungals. So, I seriously doubt that she ever actually HAD ME-CFS. There are many viruses that linger, then suddenly go into remission without logic or reason.
People have actually died from complications of CFS and Gulf War Illness. The death rate of GWI is much higher than the 10 percent the CDC/NIH gives as CFIDS patients that deteriorate with time, much like myself.
Expert witnesses (researchers and scientists) figure a third of all veterans that acquired GWI or CFIDS died. The greatest cause of death is either heart attack or organ failure.
I suffer Gulf War Illness as a direct result of Hepatitis B cocktail vaccines administered for pre-deployment to the Persian Gulf in November 1990. Most civilians outside hospitals never receive the Hepatitis B series, because Hep B is almost non-existent in the U.S. Travellers are not even required to take Hep B, because it has a nasty reputation of destroying immune systems, rendering its victims bedridden, infested with infections and overgrowth you would expect to see in a 3rd World country.
My health has never improved, and I have about a dozen diagnoses with the "cluster of symptoms" that make up CFIDS and GWI. Each diagnosis is confirmed by lab work, which never lies.
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