Testing Prof. Kenny de Meirleir's test - By Ciaran Farrell --- A must read
This was written in reaction to tinyurl.com/kn246t That Dr. De Meirleir has discovered a test for M.E.
May be reposted
Medical tests for a specific disease need to be an accurate and reproducible
means of establishing the unique pathophysiology of the disease concerned
I have a scientific background and I have studied the contents of the
presentation made by Professor Kenny de Meirleir. His hypothesis is that
high levels of hydrogen sulphate in the urine may possibly be diagnostic of
the presence and or overgrowth of relatively certain common microbes living
within the gut. This he then claims produces the symptoms of Myalgic
Encephalomyelitis.
This is not a new idea; it is a new variant on the "leaky gut" hypothesis
that has been around for some time and has been associated with the Candida
overgrowth hypothesis of ME which produces the same kind of "leaky Gut" in
which candida travels through the gut and invades the body through the gut
walls. This hypothesis has been largely discredited although it still has
its supporters.
The current hypothesis follows much the same lines, that the micro organisms
that ought to be contained within the gut are somehow able to penetrate the
walls of the gut and end up just about everywhere in the body including the
brain.
There are a number of problems and issues here which can be summarised but
are not limited to :-
1] How can such organisms penetrate the gut wall and invade the
body in the manner claimed, as this was the Achilles Heel of the previous
Candida hypothesis?
2] Assuming that it is possible for these micro organisms to
invade the body in the way Prof. Kenny de Meirleir hypothesises, then the
person would be suffering from a very nasty case of infection by one of the
micro organism concerned, and not ME, since all the micro organisms cited by
Prof. Kenny de Meirleir are already known to medicine and medical science,
and this would be picked up by a battery of microbiological tests which
would confirm the presence of a bacterium as being the cause of the
infection suffered by the patient. Not all the organisms concerned are not
that easy to treat and some can be resistant to antibiotics, but diagnosis
and treatment are relatively strait forward. This leads to the academic
scientific question as to whether certain levels of some of these microbes
live in the gut anyway, and speculation as to what would lead them to cause
an infection.
3] That in order for a given specific disease to be produced
through the invasion of the body by a specific microbe, there must be an
equation made between the microbe responsible and the disease. One cannot
have the same disease produced by an unspecified number of certain specified
and also by other un-named and or un-specified microbes because this would
simply be termed a general bacterial infection. It would not be ME.
4] That in order for a diagnostic test to detect the presence of
a given single microbe or family of microbes a given test must detect the
microbes concerned in the presence of other microbes which may be harmless,
or not the subject of the test, and therefore the test will not produce
false positives results when applied to samples taken from patients. There
is no indication that the proposed test will do this.
5] That in order for a diagnostic test to detect the presence of
a given microbe or family of microbes it is necessary for the test to have a
given provable and reliable sensitivity to the organism it is intended to be
a test for so that medics and researchers can have confidence that if the
test says that there is nothing there, then that is indeed the case. This is
to avoid the problem of false negatives. There is no information whatsoever
from Prof. Kenny de Meirleir on this subject, so I can only assume that the
proposed test does not meet the stringent standards of any national or
international Health Board. This is presumably why the test is not being
marketed to doctors or to governments or Health Boards, but only to
individuals.
6] That in order that for a diagnostic test to be accepted as the
means of diagnosing a given disease it must be accurate, and it must be
reliably accurate to a very high standard so that again medics and
researchers can have confidence that the test really does do what it claims
it can. Again, there is no information whatsoever from Prof. Kenny de
Meirleir on this subject, so I can only assume that the proposed test does
not meet the stringent standards of any national or international Health
Board. This is presumably also why the test is not being marketed to doctors
or to governments or Health Boards, but only to individuals.
Lastly but by no means least, the theory behind the test must be based on a
unique aspect of the pathophysiology of the disease because only then can
the equation between a given specific microbe and a given specific disease
be made. In order to be in a position to make this equation the theory which
underpins the use and application of any diagnostic test must account
directly for the disease process itself and not be a consequence or artefact
of that disease process that could be produced in other ways.
I consider that Prof. Kenny de Meirleir's hypothesis and Hydrogen Sulphide
diagnostic test based upon it fails this test on the grounds listed above
and for the simple reason that he has not accounted for the well known fact
that patients with ME/CFS/CFIDS are known to have compromised immune
systems. This would mean that as with HIV/AIDS patients who also have
compromised immune systems that there is very considerable likelihood that
in ME/CFS/CFIDS patients the presence of the microbes that Prof. Kenny de
Meirleir observes and the numbers in which he observes them are simply due
to the secondary consequences of having ME/CFS/CFIDS as a result of
opportunistic infections by microbes that would largely be kept at bay by
the body's immune system in a healthy person.
I note that Prof. Kenny de Meirleir has been a controversial figure when he
served as a Board Member of the American Association for Chronic Fatigue
Syndrome, and editor of The Journal of Chronic Fatigue Syndrome put out by
The Haworth Medical Press and that the Board of The National CFIDS
Foundation, Inc. (NCF), in America, called for his resignation as the result
of his previous research activities
I also note that Prof. Kenny de Meirleir's recent work on this matter is not
published in a Peer Reviewed Journal, and that he does not appear to have
any plans to publish his work in such a journal, possibly because his work
on this matter may not reach the standards required by such journals.
I further note that Prof. Kenny de Meirleir is one of the Editorial Panel of
the proposed new Journal of Fatigue where presumably he would be able to
publish this work as presumably this journal does not have the same status
and standing as a regular Peer Reviewed journal, and he would be standing in
favourable judgement over his own work.
In view of the entirety of the above, my advice would be to think long and
hard before committing £13 or any other sum of money to buy the home testing
kit proposed by Prof. Kenny de Meirleir or on whether to have the test
performed in any other way, and I would be very wary indeed of any treatment
options that may be advanced by Prof. Kenny de Meirleir on the basis of a
positive test result, or the consequences of a negative test result.
Ciaran Farrell
Myalgic Encephalomyelitis sufferer
May be reposted
Medical tests for a specific disease need to be an accurate and reproducible
means of establishing the unique pathophysiology of the disease concerned
I have a scientific background and I have studied the contents of the
presentation made by Professor Kenny de Meirleir. His hypothesis is that
high levels of hydrogen sulphate in the urine may possibly be diagnostic of
the presence and or overgrowth of relatively certain common microbes living
within the gut. This he then claims produces the symptoms of Myalgic
Encephalomyelitis.
This is not a new idea; it is a new variant on the "leaky gut" hypothesis
that has been around for some time and has been associated with the Candida
overgrowth hypothesis of ME which produces the same kind of "leaky Gut" in
which candida travels through the gut and invades the body through the gut
walls. This hypothesis has been largely discredited although it still has
its supporters.
The current hypothesis follows much the same lines, that the micro organisms
that ought to be contained within the gut are somehow able to penetrate the
walls of the gut and end up just about everywhere in the body including the
brain.
There are a number of problems and issues here which can be summarised but
are not limited to :-
1] How can such organisms penetrate the gut wall and invade the
body in the manner claimed, as this was the Achilles Heel of the previous
Candida hypothesis?
2] Assuming that it is possible for these micro organisms to
invade the body in the way Prof. Kenny de Meirleir hypothesises, then the
person would be suffering from a very nasty case of infection by one of the
micro organism concerned, and not ME, since all the micro organisms cited by
Prof. Kenny de Meirleir are already known to medicine and medical science,
and this would be picked up by a battery of microbiological tests which
would confirm the presence of a bacterium as being the cause of the
infection suffered by the patient. Not all the organisms concerned are not
that easy to treat and some can be resistant to antibiotics, but diagnosis
and treatment are relatively strait forward. This leads to the academic
scientific question as to whether certain levels of some of these microbes
live in the gut anyway, and speculation as to what would lead them to cause
an infection.
3] That in order for a given specific disease to be produced
through the invasion of the body by a specific microbe, there must be an
equation made between the microbe responsible and the disease. One cannot
have the same disease produced by an unspecified number of certain specified
and also by other un-named and or un-specified microbes because this would
simply be termed a general bacterial infection. It would not be ME.
4] That in order for a diagnostic test to detect the presence of
a given single microbe or family of microbes a given test must detect the
microbes concerned in the presence of other microbes which may be harmless,
or not the subject of the test, and therefore the test will not produce
false positives results when applied to samples taken from patients. There
is no indication that the proposed test will do this.
5] That in order for a diagnostic test to detect the presence of
a given microbe or family of microbes it is necessary for the test to have a
given provable and reliable sensitivity to the organism it is intended to be
a test for so that medics and researchers can have confidence that if the
test says that there is nothing there, then that is indeed the case. This is
to avoid the problem of false negatives. There is no information whatsoever
from Prof. Kenny de Meirleir on this subject, so I can only assume that the
proposed test does not meet the stringent standards of any national or
international Health Board. This is presumably why the test is not being
marketed to doctors or to governments or Health Boards, but only to
individuals.
6] That in order that for a diagnostic test to be accepted as the
means of diagnosing a given disease it must be accurate, and it must be
reliably accurate to a very high standard so that again medics and
researchers can have confidence that the test really does do what it claims
it can. Again, there is no information whatsoever from Prof. Kenny de
Meirleir on this subject, so I can only assume that the proposed test does
not meet the stringent standards of any national or international Health
Board. This is presumably also why the test is not being marketed to doctors
or to governments or Health Boards, but only to individuals.
Lastly but by no means least, the theory behind the test must be based on a
unique aspect of the pathophysiology of the disease because only then can
the equation between a given specific microbe and a given specific disease
be made. In order to be in a position to make this equation the theory which
underpins the use and application of any diagnostic test must account
directly for the disease process itself and not be a consequence or artefact
of that disease process that could be produced in other ways.
I consider that Prof. Kenny de Meirleir's hypothesis and Hydrogen Sulphide
diagnostic test based upon it fails this test on the grounds listed above
and for the simple reason that he has not accounted for the well known fact
that patients with ME/CFS/CFIDS are known to have compromised immune
systems. This would mean that as with HIV/AIDS patients who also have
compromised immune systems that there is very considerable likelihood that
in ME/CFS/CFIDS patients the presence of the microbes that Prof. Kenny de
Meirleir observes and the numbers in which he observes them are simply due
to the secondary consequences of having ME/CFS/CFIDS as a result of
opportunistic infections by microbes that would largely be kept at bay by
the body's immune system in a healthy person.
I note that Prof. Kenny de Meirleir has been a controversial figure when he
served as a Board Member of the American Association for Chronic Fatigue
Syndrome, and editor of The Journal of Chronic Fatigue Syndrome put out by
The Haworth Medical Press and that the Board of The National CFIDS
Foundation, Inc. (NCF), in America, called for his resignation as the result
of his previous research activities
I also note that Prof. Kenny de Meirleir's recent work on this matter is not
published in a Peer Reviewed Journal, and that he does not appear to have
any plans to publish his work in such a journal, possibly because his work
on this matter may not reach the standards required by such journals.
I further note that Prof. Kenny de Meirleir is one of the Editorial Panel of
the proposed new Journal of Fatigue where presumably he would be able to
publish this work as presumably this journal does not have the same status
and standing as a regular Peer Reviewed journal, and he would be standing in
favourable judgement over his own work.
In view of the entirety of the above, my advice would be to think long and
hard before committing £13 or any other sum of money to buy the home testing
kit proposed by Prof. Kenny de Meirleir or on whether to have the test
performed in any other way, and I would be very wary indeed of any treatment
options that may be advanced by Prof. Kenny de Meirleir on the basis of a
positive test result, or the consequences of a negative test result.
Ciaran Farrell
Myalgic Encephalomyelitis sufferer
Posted by BlueRibbonsForME at 5/30/2009 3:40 AM 
Categories: Research reaction,Research news,Dr. De Meirleir,test for ME/CFS
Tags: Research reaction Dr. De Meirleir test for ME/CFS
Categories: Research reaction,Research news,Dr. De Meirleir,test for ME/CFS
Tags: Research reaction Dr. De Meirleir test for ME/CFS
I am very disappointed with this article as we have met Prof. Dr. De Meirleir. He is a man of integrity and a scientist of the highest calibre, who is dedicated to M.E. patients and our cause. Many try to discredit him, but my advice would be not to listen to these people.
Reply to this
I'm not interested in discrediting Dr. De Meirlier. I am interested in discrediting bad science. I think the research is awesome.
But until his research is replicated in independent labs by independent researchers, his claims are over the top, and therefore, to me suspect.
It's a working hypothesis, that does not have legs until more research is done by others to confirm it. I think his claims are irresponsible and unscientific. Someone with basic knowledge of science knows better than to make claims such as that.
I read the first article on it, and ones after it, and cringed. Could hear my stats profs shaking their heads.
This is not the way science is done. He may be a great man and a champion for his cause, but if his work is not published in a peer reviewed journal, and if these finding cannot be replicated, he has put himself and us as patients in a bad position.
It was badly done the way it was announced.
Reply to this
I think you've taken the research out of context.
Like most diseases, CFS does not have a singular cause. I am not only refering to subgroups, I am stating that for a specific subgroup, the etiology is due to a combination of factors. As I said, the same goes for most symptomatic based diseases - what causes arthritis? What causes cancer? Why is it that two people with similar health can be exposed to a (minor) microparasite, only one of them gets a significant infection? Or why can two people infected with the same microparasite have different symptoms?
Yes, the title is over the top, but I can think of plenty of examples of over the top journal article titles.
The point is that this is a cheap and easy marker, indicative of CFS and suggests further investigation. It is likely to play a role (but by no means is the primary causative factor) of symptoms.
Nothing more, nothing less.
It was indicated by Jan van Roijen that the research would be published. I'm not sure which journal. Although I do agree with your point about the conflict of interest if it is published by a journal of which he is one of the editors and the importance of peer review.
2] This class of microorganisms are common to most people. In some CFS patients, they have been found in places where they are not meant to be.
3]
Again, it is not the primary factor and only a class of bacteria need to be identified.
4]
The test simply determines whether the patient has a much higher than normal level of H2S in your urine. Now this may be caused by an infection (high levels) of sulfur reducing bacteria, or some sort of liver disease. Either way, it indicates that the patient is not healthy.
6] I'm sure that when the product is available you can request technical details about the sensitivity and specificity.
The only reason why the press release and talks were presented it in such a way is because there is a demand - most patients do not have the time, energy and knowledge to understand it, due to how it is written. It reasonable to criticize the fact that it is not presented scientifically, but it is a mistake to form any conclusions before reading the published research. After you have a complete picture of the research, criticize it all you want, because that is what science is all about...
Reply to this
We need to hear back from people who take the test and see if:
a) all suffers get a positive result
b) all healthy people get a negative result (if you are willing to pay for a healthy person to take the test).
This may indicate that he is at least onto something.
Reply to this
There's three problems with that though.
1) Information collected this way would be anecdotal.
2) Even if a test is statistically is significant it is not 100%. We are not a homogeneous group.
3) Science is never 100%. Even an MRI or a cancer test can give you false results. And that's what worries me about De Meirlier's announcement is that there has been no acknowledgment of that. He has shown correlation, rather than causation, and even that correlation cannot have legs until it's been independently verified.
Reply to this
You have misrepresented the "hypothesis", such as it is. The micro-organisms do not spread throughout the body. They cause excessive Hydrogen Sulfide, which binds to heavy metals, and it is these toxins which supposedly pass through the gut wall. How the Prions fit into this is not at all clear from the slides available. It's confusing stuff alright, and not the way science is done, but if you're going to criticise it at least don't misrepresent the "hypothesis" - the waters are muddy enough ! Your skepticism is entirely warranted until this material is published in a peer-reviewed journal.
Reply to this
I am writing to note that the blog by Ciaran Farrell is singularly poorly reasoned, and that he apparently buys heavily into the smear campaign against Dr. de Meirleir.
In the first place, the H2S hypothesis does not require that microbes penetrate the intestinal wall. Given that, the remainder of the numbered points become irrelevant. H2S is a somewhat polar water-soluble gas, and as such can be produced in the intestines, dissolve in the fluid in contained within the intestines, pass through the cellular membranes of cells lining the intestines, and from there to the bloodstream, all after being secreted by a microbe.
Further, if Farrell considers that research published in the type of field review book that de Meirleir published in, he doesn't know science. He also doesn't know about the time lag between research results being shown and being published in the peer-reviewed journals that the NCF et al. so worship.
Dr. de Meirleir announced his results before publication in a peer-reviewed journal so that patients can be tested in the two years before that publication would take place. This is exactly the opposite behavior that the NCF et al. have based the call for his resignation on. Apparently dr. de Meirleir is to be driven from all work on CFS because he acts, or doesn't act, too quickly or too slowly, or simply because he exists.
Who got so pissed off at him?
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You make a very strange remark - "peer-reviewed journals that the NCF et al. so worship". Peer-reviewed journals are the way science is done. This ensures that people like fraudsters and those who wish to make money rather than help patients are held up to proper scrutiny by their peers. I think you'll find that peer-reviewed journals aren't "worshipped" so much as regarded as the best current way to do science properly. I know of no other medical research field where new "diagnostic" tests with any credibility are being sold directly to patients - you can get as shirty as you like but this simply isn't the way science is done. Answer me this - how does it help the patients? It costs them money and will be ignored by doctors worldwide because Dr De Meirleir did not go through the proper process. The process which is there to ultimatey safeguard the interests of patients.
Reply to this
Regretfully, this article is competely misinformed. It IS NOT a must to read it.
I've tested the NEUROTOXIC METABOLITE TEST in some patients and I'm CONVINCED it works, and it does relate to the cause of ME/CFS/Fibromyalgia.
I'm also absolutely confident that the era of darkness is ended; and that I'll be able to cure (or induce long remissions) in most my patients.
Reply to this
Dr. Ramos, What leads you to say that the "Neurotoxic Metabolite Test" works? Why do you say it "does relate to the cause"? Why will you be able to "cure" or "induce long remissions" in patients? You give no scientific or logical reasons for any of these statements. The statement you have given is likley only to make patients buy an unverified "test" which their own doctors will take no notice of, and they will be financially poorer and medically no further forward. Why would you make vague statments like these? Please give some explanation.
Reply to this
Skeptics are badly needed, and I agree I did not provide strong enough evidence to support my words. Sorry. But there's no space here. Some hints: 1) I diagnose and treat patients with CFS for 8 years, in a 3 million people city; 2) I've seen patients who got cure or remissions with antibiotics; 3) the H2S metabolite is detectable in urine and often concentration correlates with sypmtoms intensity; 4) H2S intoxication explains why vitamins, antibiotics, omega 3, diets and intestinal flora replacement works for some patients; 5) metal intoxications aggravates the disease because of its reaction with H2S.
Time is the Lord of Reason.
Let's see what future says.
Thanks for your attention.
Reply to this
Dr. Ramos, Thank you for taking the time to give some details. I am aware of dramatic responses to antibiotics - though only temporarily - and there is evidence in the literature regarding Prions as to why this might be the case. My problem is entirely regarding the way Dr. De Meirleir has chosen to reveal, or partially reveal, his findings. He may indeed be correct - there isn't enough published data to judge. But the way he has chosen to go about this is likely to be unhelpful in the short term - if there is indeed Prion involvement then selling a private test rather than involving health authorities and having peer-reviewed publications may only deter other specialists from investigating this area. I hope you see the problems some of us have are with the approach, not the hypothesis. If you have any further personal obvservations these would be very welcome.
Reply to this
Thank you for giving more information. Clearly the future will make this issue plain. Unfortunately in the meantime a lot of very ill people will pay money for an unverified "test" to boost the profits of a private company.
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well i am disappointed in your article, as i have had nothing but a good experience with Prof De Meirleir, and have had results, ok they may be "out there" for you people wanting the usual crappy western medicine, and hey lets just fix it with a pill attitude. if doing something that is classified as reasearch and has nnot been proven, well i was willing to take a chance since most of the NOrmal DRs wanted to do is just fill me up with drugs and told me to get over it. maybe thats your style, anything new.
Reply to this
Melissa, I have been ill for over 14 years and have been on the receiving end of some very poor treatments and attitudes. This makes me angry. However, I get even more angry at Doctors who give the appearance of "helping" when in fact they are making large amounts of money and positively harming the research efforts of CFS. Personally speaking, my "style" is absolutely 100% "crappy western medicine" as this has provided every genuine and effective treatment now in general use. It's far from perfect but it does tend to flag up the fraudsters and the plain greedy.
As regards Dr De Meirleir, he could have
a) followed the proper processes for introducing a new diagnostic test which would see patients get it for nothing but cost him and his company more money
or
b) he could hold a press conference, provide currently unverified data and sell the test privately thereby forcing chronically ill people to pay for it rather than get it through their doctors. He chose the latter.
Reply to this
well i am very sorry for you as for being sick i have been sick just as long have to struggle with stroke like sytems, seizures, and all the rest and then being told by somedrs that i 3was depressed because i had a son with autism and this what caused my stroke and seizures etc, what a load of shit. i am sorry for you. that you think trying prof de melierleir does not follow your guidelines of what shoulod be done, but thank goodness he has done, because of him and his reseach regardless of the procedure it is delivered, i have kissed stroke like symptoms and seizures good bye, mmmm i think i will put up with those un orthodox approaches is it is making my life and my sons life sooo much better.
so i am truly sorry that you seem to be caught up in his technique, and yes you are right there are some not so nice people out there ready to make a dollar of the long term sick. but prof de meirleir and his approach has made a huge difference to my life style and to my sons. i guess at the end of the day it is your opinion and you are entitled to it. i am all for people researching and trying new methods. solving the underlying issues that causes us illness instead of bandaiding it with heaps of medications.
oh well hey now that i am not bed ridden and not being pumped full of medicine i will think of you next time i am out enjoying life. hope your every day run of the mill medicine works for you, best of luck with that
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For all patients with ME, if you want some real hope and a look at proper science in action, take a look at Haukeland University Hospital in Norway.
http://www.biomedcentral.com/1471-2377/9/28
And just so there is no confusion, I have no ties or affiliations with these people, nor am I even on the same continent. These people made a chance discovery which may have a major impact on ME research. If Rituximab is proven (by proper scientific methods) to be an effective treatment it will change the direction of research and lead to proper diagnostic testing and further treatments. Time will indeed tell...
Reply to this
Melissa, You've clearly had some terrible experiences and I can see why you would tire of the normal medical approaches. It's fantastic that you've found any kind of treatment and I hope you are able to continue to improve. There are plenty of examples of the normal scientific approach taking a long time to "get it right" - ulcers being a particularly good example - but it's the best system we have. It will provide the answers eventually and proper treatment will be available. Someone will write a book on the scandal of why it has taken so long to "get it right"....
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Not only skpeticism is needed, wisdom too. What if your vision is blurred by your feelings?... If de Meirleir theory and test become recognized as good (by use, research and successful targeted therapy), all the 'verified' research would have just worked over the effects. And the use of the really 'expensive medicines' you mention would just have been luxury palliatives; as steroids, symptomatic tratment that improves well being or pain for sometime, while imunocompromising, inducing diabetes, bone loss and dozens of other bad colaterals. Rituximab destroys B cells of the immune system. The companies that make it have 'all the money in the world' to sponsor the research that proves ANY benefit from their most expensive products.
Reply to this
I haven't mentioned any "expensive medicines", aside from Rituximab. Its effectiveness in a small number of CFS patients has been discovered entirely by accident, which you will know if you have read the paper in the link provided previously. Proper clinical trials are currently underway in a larger patient group to see if the drug really will provide a treatment - http://clinicaltrials.gov/ct2/show/NCT00848692. It may or may not, but this is how proper scientists go about their work - that's not my opinion, it's a statement of fact. If Dr De Meirleir submits his data (on Hydrogen Sulfide and Prions - never seen in public as yet) and his "test" to the same process being followed by the rest of the mainstream research community and it is proven effective then he will indeed be deserving of praise. His decision to sell an unproven "test" privately leaves him open to charges of seeking financial gain (whether that's true or not) and does nothing for the credibility of CFS research generally. As I've said a number of times, the system we have isn't perfect but it does generally protect the patient. As I've never had any personal contact with Dr De Meirleir - or the Norwegian scientists testing Rituximab - I am offering a completely unbiased opinion. I know what Rituximab does and the fact that B-Cell Depletion Therapy has resulted in a level of improvement never before reported in the literature ought to waken a few people up. Hydrogen Sulfide and Prions both represent excellent hypotheses for CFS but so do a number of other things. These things are only worth taking seriously when there is independently verified evidence for them. No ill person should be spending money based on a press conference and absolutely nothing else. That's frankly ridiculous and should be shown up as such.
Reply to this
Sceptic said: "he could hold a press conference, provide currently unverified data and sell the test privately thereby forcing chronically ill people to pay for it rather than get it through their doctors"
I'm a patient myself, indeed chronically ill, but I don't feel obliged to buy this test. Why should I?
I think De Meirleir is just trying to offer something for me/cfs-sufferers. And if he fails to prove in future it's really working & accurate, then he puts his name into risk, that's true... Do you really think he would potentionally risk his name, or even career for that money...?
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Hi Martin. The point about "forcing" was meant in terms of the chosen course of action by Dr De Meirleir forcing patients to pay, rather than getting the test through their local health authorities had he chosen the other route (extensive further testing/refinement/publications). I have never met Dr De Meirleir and therefore have tried to restrict my comments to how this situation appears to someone looking at it from the outside. Perhaps I should make something clear - I would be over the moon if Dr De Meirleir's hypotheses are proven correct. Like every other true ME patient, all I've ever wanted was to get well and get my life back. I don't give a damn who, what or where the treatment comes from. The problem I have with this specific situation, and speaking 100% objectively, is that by choosing to sell an unproven, supposed "test" privately, Dr De Meirleir opens himself up to accusations of trying to personally profit from the illness. I have no right to make any such accusation, and am not doing so - but it bothers me enormously that this appearance can be given. Other medical researchers with excellent reputations in their fields might then hear of a hypothesis concerning Hydrogen Sulfide or Prions and think "Yes, that's plausible. It might be interesting to check that out." They then discover that the person proposing these theories is selling a private "test" which has not gone through the normal medical processes and they think "Oh dear, that looks a bit suspicious." And in this way the actual science is not checked out by really good researchers and there is a whiff of dubiety hanging around ME research. These people meet at conferences and talk over cups of coffee - "Did you hear about that so-called "test" being sold privately for 'ME'?". Ultimately it's good quality medical research done by good quality researchers which will resolve the issues of ME. Selling unproven "test"s privately with no independently verified data to back them up just drags the reputation of ME research down, and surely no-one wants that? My personal opinion is that both Hydrogen Sulfide and Prions are really good candidates in theory to play a role in the illness ( and I've had a good look at medical papers on these subjects ) - I really wish Dr De Meirleir had published a series of papers on them, received independent verification, then had his test made available through family doctors or hospitals. Had he done so then patients would not have been paying for it and it would hold some weight with the medical community - at present you can pay your own money and have your doctor politely ignore whatever the test says. I hope this clarifies what I've been trying to say. I'm not interested in maligning any researcher - especially one I've never met. I am very interested in the reputation of the ME research field generally, and it isn't great at the moment....
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Hi Sceptic,
Thanks for your explanation. I understand your concerns about the selling-of-an-unproven test. But try to look at it from another point of view -
Prof. De Meirleir has stated that he can distinguish me/cfs patients from healthy people by using the RNase L test with 99% accuracy. But the testing is very expensive (see http://www.redlabs.be/documents/TRF02-06-09EN.pdf ). If he liked to make money, he could have offered this test, couldn't he? In this regard the H2S test is VERY cheap!
Furthermore - the whole testing at Himmunitas, as well as the following treatment is very expensive. The H2S is marginal, what the whole costs concern. - That applies for the patients treated at Himmunitas, of course. But now De Meirleir is offering the test to others, too. For a very reasonable price, in my opinion.
I believe De Meirleir has tested this test on many of his patients (and he treats thousands), as well as controls for some time. I can't help believing that he knows what he's doing! If not, he wouldn't offer the test on market. True, it's based just on my trust, and we have to wait for the exact description, peer-reviewed articles, confirmation of other researchers etc. Fine. But I don't see why he'd put his name at risk if he wasn't convinced of the reliability of the test (I already made this point in my previous comment).
And WHY didn't he wait for confirmation by other scientists? I think for 2 reasons -
a/ Someone has said it here earlier - TIME. He probably wants to offer a test asap.
b/ He must be convinced of the accuracy (see above).
If you think it's unusual or unorthodox, you may be right.
Of course, if this test will show to be rubish in future it'll be very damaging.
So I understand your point.
I'm talking here of my TRUST for Prof. De Meirleir (which is always dangerous, btw, to be s.o.'s advocate), and you're talking more general that non-standard procedures could potentionally damage the reputation of the me/cfs research.
Ok, I agree with that.
I've just tried to express my thoughts why I hope it will not!
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Re: "rather than getting the test through their local health authorities had he chosen the other route"
I'll give you a pretty good reason why!
Time again! And to-have-the-option at all!
I'll explain: Not only it would take more time in general to go through all the procedures, BUT you don't possibly know how the me/cfs situation looks like in many countries! Where are you from? The US, I guess?
Well, there is at least some expectance of this disease there. So if you talk about "local health authorities", it just sounds funny to s.o. who is from a central Europaen country (but I believe it applies to MOST countries in Europe or the world). You know the struggle for the acknowledgment of this illness - that it exists at all! - has been long and vain so far in many countries.
So, if you look at it from this perspective, then the test just offers a chance to get tested cheap for almost everyone!
Scientifically proven or unproven (with all the standard procedures), it might not be the main purpose for this test here. Perhaps it should just give patients a clue if they suffer me/cfs (or some other disease - then, they can focus on st. else). And if they have this problem, De Meirleir believes can be the cause (or one of the causes) of me/cfs. And potentionally, they could even do st. about it themselves!
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“… there is nothing more difficult to take in hand, more perilous to conduct, or more uncertain in its success, than to take the lead in the introduction of a new order of things. Because the innovator has for enemies all those who have done well under the old conditions and lukewarm defenders in those who may do well under the new. This coolness arises partly from fear of the opponents,… and partly from the incredulity of men, who do not readily believe in new things until they have had a long experience of them.”
Niccolò Machiavelli, in The Prince, chapter VI
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Hi Martin. Thanks for providing more information. It's good to hear from someone with first-hand experience of Dr De Meirleir. I hope your faith in him is justified, as that means all of us will get our old lives back! Let's see what happens...
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I found the Norway rituximab infusion story hopeful and exciting. Thanks for sharing this information. It certainly puts a negative slant to CBT, if one subscribes to that theory,which I don't in any way shape or form.
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This article by Jacob Teitelbaum is pertinent to this discussion:
http://www.ei-resource.org/expert-columns/dr.-jacob-teitelbaums-column/smelly-gas-a-clue-to-cfs-testing-and-treatment/
Link not intended as endorsement for Dr J, but useful info re H2S.
I live in Australia.
A few years ago I became very frustrated with my doctors, who attended some workshops for health professionals, where Prof de Meirleir was one of the presenters. My doctors seemed never to learn anything helpful/useful (treatment-wise) from these workshops.
Then I had the chance to attend a presentation by Prof de Meirleir. I attended the presentation armed with several questions related to findings that are attributed to Prof de Meirleir, but for which more information is needed before the findings can have practical use in a treatment setting.
I discovered why my doctors never learnt anything useful, for application to treatment, at prior workshops. There was nothing concrete presented. Everything seemed to fall back to "buy my tests" as the starting point.
I gather none of Prof de Meirleir's tests currently have strong scientific validity, and many are quite expensive, so I understand why doctors are reluctant to recommend the tests to patients.
I guess it becomes caveat emptor. We, the patient, must choose what to spend our money on in search of recovery.
The CFS patient-community can help itself by organising a centralised "results of tests" location online. I have found a couple of blogs where people posted their H2S test result, sometimes with the results of a second non-CFS person for comparison.
If melissa is still following this discussion I would be very interested to hear what treatments Prof de Meirleir used that were effective for her and her son. There is no scepticism what so ever in this request. I fully accept that Prof de Meirleir has helped melissa.
I follow Carlos's blog: http://pochoams.blogspot.com/
Carlos had some consultations with Prof de Meirleir, but the treatment was not helpful for Carlos. No doctor can achieve 100% results.
It is thought that there is commonality of cause between autism and some cases of CFS (de Meirleir is one of the proponents of this, and, based on my own case of CFS, I agree with the idea). Hence my interest in what treatments were helpful for melissa and her son.
For my own treatment I follow principles of autism treatment - chelate heavy metals, promote glutathione production, support methylation cycle ...
I also find the low fructose diet very beneficial:
http://www.coeliac.com.au/Fructose-Malabsorption-Guide.html
http://sacfs.asn.au/download/SueShepherd_sarticle.pdf
Currently all cases of CFS are ill-defined due to inadequate diagnostic criteria. This is an area Prof de Meirleir has tried to improve, via categorising cases according to certain biochemical markers. However, as commented above, I am unclear how scientifically valid his tests are, even for distinguishing different classes of CFS.
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Dear Fellows:
As time goes by, my experience with Dr. De Meirleir's Test and knowledge grows fast. I'm one of the very few physicians in the world that have received a large number of tests for clinical evaluation. What can I say after testing around 100 patients? Again, it tests POSITIVE in 98% of symptomatic patients, and NEGATIVE in 94% of asymptomatic young people. 6% of asymptomatic people present a weak POSITIVE result, mainly people above 45 years old.
Also, half of my patients have improved with long term antibiotics alone, followed by vitamins; and 10% got completely asymptomatic.(!)
Regarding metal chelation, I DO KNOW it is fundamental for anybody bearing elevated H2S in blood/urine. But it is quite expensive, and its clinical results are difficult to evaluate. I have 14 patients under chelation now.
In fact I DO BELIEVE chelation is good for all people above 40; and I'm under chelation myself, although not due to fibro/ME symptoms; but because my blood LEAD is higher than normal.
The real PROBLEM is what causes dysbiosis and bacterial H2S overproduction. I've discovered FOOD INTOLERANCE in a few patients; and bowel inflamatory disease in many. But 20% puzzle me: they have absolutely no gastrintestinal complaints.
Now I'm trying a fascinating new natural treatment that COMPLETELY SUPRESSES H2S PRODUCTION in bowel. In 40 days I'll have the results over 24 patients. If they get better and their NM-H2S TEST become NEGATIVE; we must have discovered something really useful after De Meirleir. In fact, he is curious about my treatment method. I'll let him know; I'll let you all know.
Again, the truth will prevail - TIME IS THE LORD OF REASON.
Thanks for your attention.
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You have misrepresented the "hypothesis", such as it is. The micro-organisms do not spread throughout the body. They cause excessive Hydrogen Sulfide, which binds to heavy metals, and it is these toxins which supposedly pass through the gut wall. How the Prions fit into this is not at all clear from the slides available. It's confusing stuff alright, and not the way science is done, but if you're going to criticise it at least don't misrepresent the "hypothesis" - the waters are muddy enough ! Your skepticism is entirely warranted until this material is published in a peer-reviewed journal.
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