The De Meirleir Experience

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Joel (snowathlete) explains why he decided to consult Dr Kenny De Meirleir and describes his journey to De Meirleir's clinic in Belgium...


Prof Dr Kenny De Meirleir

I was diagnosed with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) in the summer of 2009 by an ME/CFS clinic run by the National Health Service. The UK is about as backwards as it gets when it comes to this illness of ours, so I was prescribed Graded Exercise Therapy (GET) by the NHS. It took me a long time to recover from the damage GET did to me, but once I was well enough, I started looking for better doctors and better treatments.

With so little nailed-down about the illness I decided it was important to see a doctor who had a lot of experience; someone who had seen a lot of different patients with the illness. I also wanted to see someone who would test for a wide range of problems, and prescribe treatment based upon the results.

There are not as many good ME/CFS doctors in the world as there should be, but there are some. In the UK there are few options. There are a couple of good doctors, such as Dr Sarah Myhill in Wales and Professor Julia Newton in Newcastle, but these two doctors are quite focused on specific areas, Mitochondria and the Autonomous Nervous System respectively. I think each of these areas have their merits, but as patients often suffer from multiple issues, it is a good idea to see a doctor who looks at a broad range of problems.

So, I started looking further afield. Traveling to the US was not completely out of the question, but it would have been extremely difficult for me to travel that far and certainly more expensive. In Europe there was De Meirleir’s clinic just north of Brussels and because of the Eurostar train from London to Brussels it was within fairly easy reach.

I contacted patients of his via the internet and heard good things. Indeed, most of the patients I spoke to had recovered somewhat and those that had not improved did not regret seeing him. De Meirler has worked on this illness for more than two decades and has seen thousands of patients. He was one of the authors of the Canadian and International Criteria. I also read a lot of his research papers, and watched a load of his videos on the net. I liked what I read, I liked what I saw.


Booking an appointment



Trying to find details of De Meirleir's clinic was not as easy as I thought it would be, but in the end a friend was able to point me to the clinic's website: Himmunitas.

The website was not what I expected. It is not flashy and it doesn’t contain a great deal of information, but it does show you where the clinic is located and provides contact details. So my lovely wife contacted the clinic on my behalf and inquired about seeing De Meirleir. We then went ahead and booked a two day visit to the clinic, Monday and Tuesday, to see De Meirleir and have investigative testing carried out. I didn’t need to get a referral from my GP. The waiting time was around two months - better than I expected. The clinic promptly emailed us some information explaining their standard procedure, and information on pricing.


Getting to the clinic

I quickly applied for a new passport. I haven’t left the country since I came down with ME/CFS and my old passport photo, taken when I was fifteen, no longer bore any resemblance to the sick looking man I am now (border control might have let me out, but I doubt they would have let me back in again). I then proceeded to book the travel. It's worth booking the Eurostar early when the ticket prices are quite reasonable. The earliest train on the Monday won’t get you to Belgium in time for your 8 am appointment, so you’ll need to travel up the day before. I then booked the train down to London, from Wiltshire where I live, and waited for the date to arrive.


Snow

In the week leading up to the trip it snowed. A lot. I began to wonder if the trip would have to be cancelled and I felt pretty worried about it. I checked the Eurostar website the day before and about half of the trains were cancelled. Fortunately, not mine, though there would be speed restrictions in place.

On the day, I caught the train to London’s Paddington station and despite the snow it started running on time. Then the train stopped. I looked out of the window and saw open fields. Something was wrong. The driver spoke over the intercom and explained that there was a defect on the rails ahead. My heart sank. Fortunately the driver decided to risk it, and going very slow he proceeded forward over the defective rails. You could feel the bumps as the carriage went over them but soon it was behind us, and cautiously, the driver opened up the throttle. We arrived in London ten minutes late. I had less than an hour to get to the Eurostar terminal at St Pancras. A friend from London told me not to bother with the underground but to get a taxi. Although a little more expensive, you get to sit down and it is a few minutes quicker. He was right – it was quick and easy. The ride cost £12.

Eurostar (Image curtesy of Arripay)

Eurostar

I made my way to the Eurostar terminal and went through passport control. It was tiring having to take my coat off and empty my pockets. I was starting to lag. I proceeded straight to boarding and had to walk from carriage three to carriage fifteen. It was a long way. Next time I will try to book a lower carriage number.

I found my reserved seat which was a table seat. Mistake. These seats have the least leg room and it really is significantly more cramped than the non-table seats. The train left on time and it really was quick under the sea; in no time at all, we came up into French daylight. We stopped at Lille and a few passengers got off. The doors shut. We did not move.

The train manager spoke over the intercom, and informed us that there was a fault and a technician had been called, and soon we would be informed if we could continue our journey, or not! But forty-five minutes later we were back underway. Phew!

The Eurostar terminates at Brussels Midi, which is the southernmost station in Brussels. De Meirleir’s clinic is near Vilvoorde to the north of Brussels. I made it to Vilvoorde and made my way carefully down the snow covered steps and out to the bus stop. Dark. Cold. Tired.
I scanned the timetable for Zondag (Sunday in Dutch) – no buses running to the hotel. Luckily everyone in Belgium speaks English and a girl at the bus stop offered to call me a taxi. After a half hour wait in the snow the taxi showed up and drove me to the hotel.


The Hotel

I stayed at the Euro Volley which is actually a sports centre. It's full of young, healthy, giant people with long legs and arms. I carried my small suitcase up the single flight of stairs and made it to my room. I checked the time on my phone. It was about 8 pm and I was supposed to fast from then until Monday afternoon. No chance, I was starving. The hotel cafeteria is closed on Sundays and the receptionist recommended a restaurant a five-minute walk away. I was already tired but I had to eat, so I wrapped up warm and started out.

The walk took fifteen minutes because of the snow and ice and I felt like an Arctic explorer who had run out of food. I forced myself to carry on until I reached De Drie Fonteinen (The Three Fountains) Brasserie. Good service. Good food. It was worth it. I struggled to make it back to the hotel afterward, but somehow I did. Straight to sleep.

I had booked the same taxi company that had picked me up from the station, to take me to the clinic at 7:30 on Monday morning. Big mistake. It didn’t turn up, but the staff at the hotel were helpful and sorted it out for me. The best thing about the hotel is that they will drive you to and from the clinic/station for a small charge, you just need to book it with them in advance at the front desk and in hindsight I should have relied on them instead of this other taxi company. I got to the clinic ten minutes late at 8:10 am.


What was the clinic like?


Himmunitas Clinic Interior

The clinic was larger than I expected. It was warm (which was good) and brightly lit with fluorescent lights. These might be a problem for some people with ME/CFS who are sensitive to bright lights, but fortunately I don't have that problem. The receptionist was friendly and welcoming. She handed me a two page questionnaire to fill in and directed me to a room where a nurse would start my lactose breath test.

The nurse welcomed me, explained the breath test and took the first reading. I then went to sit down and wait to see the man himself. Five minutes later I am called in. I shake his hand and sit down opposite his desk. I hand him a two page summary that I put together, highlighting my medical history, exposures, key problems. He reads it and asks a few questions: Do you smoke? No. Do you get pain in your jaw? Yes (and it clicks). Have you been bitten by a tick? Not that I know, but it’s certainly possible. Several more questions are asked and I can see he is listening carefully – he is thinking, diagnosing, predicting, deciding.

I ask a few questions of my own. He gives me straight answers. Soon, the appointment is over.

Now, this is not a consultation in the sense that most are used to, it is really about giving De Meirleir information so that he can start thinking about your case, decide what tests to run and so on. It is short, but I honestly don’t think there would be any point in it being any longer.


What is De Meirleir Like?

Now, let me tell you a bit about De Meirleir: he is not warm. Now don’t go jumping to conclusions. He is not cold; that’s not what I am saying. I believe he cares deeply about his patients, and I think people misunderstand why De Meirleir comes across as he does. He is professional and efficient and his manner is what it is in order that he can do his job properly.

Over the two days that I was in his clinic there were about twenty patients in the building and I wasn’t even there all day. We make a sorry looking bunch: sick, tired, desperate. Only about two people looked less ill than me and one patient spent the whole time in bed in the room next door on a drip.

De Meirleir doesn’t stop all day, he goes from one patient to the next, each patient walking in with this illness and their emotional baggage in hand, and we all want the same thing – we want him to make us better. But actually, secretly, we all want something else as well – we want him to listen to us, to hear how bad we have it and to acknowledge it. But actually he already knows. He is confronted with it all day long and if he allowed himself to engage too much on an emotional level he wouldn’t be able to do his job. It would be utterly soul destroying, and I still find it remarkable that he is able to do the job at all.

So, instead, he focuses on each person as a case. He takes it seriously, and looks at each person as an individual with different problems and different needs, but there is a barrier in place that lets him do his job. At one point when we briefly touched on something outside of ME/CFS, the man suddenly came alive in front of me; passionate and talkative. This was the real man before me, but as pleasant as the man is, I realised that he is not the man I need. The man I need is the clinician, the man who looks at me not with warmth, but with an analytical eye.

I should make another observation at this point: De Meirleir is a man committed to our disease. He could easily go and work on something more fulfilling, more self-serving. But he doesn’t. My understanding is that De Meirleir doesn’t even take a salary from his clinic, his only income coming from the University where he is a professor. It is hard to imagine how he finds time to conduct lectures, but somehow he does. Indeed, it is not just De Meirleir who works hard at the clinic. All his staff do. They don’t stop all day, going from one task to the next with great efficiency. The clinic runs like a well-oiled machine, working at full capacity at all times and with great professionalism.

After my appointment with De Meirleir I stayed to finish my lactose breath test (several tests half an hour apart) and the nurse provided me with a stool test kit and a pot to piss in (more than the UK government ever provided me with) and I returned to the hotel for a rest. The next day, the hotel driver dropped me off at the clinic and I began my fructose breath test. The nurse ran through the blood tests that De Meirleir proposed to run, which would go to three different blood labs. He provided me with a copy of the tests and asked me if I was happy with them all. He explained what they were all for and I signed off on them. I was pretty happy with the tests being run. Only one I thought was perhaps not worth running but I decided to go ahead with that one as well.


Blood

Then came the blood draw. I wasn’t looking forward to this; usually a phlebotomist will stab me a dozen times in frustration in an effort to find a vein and it’s quite an ordeal for us both. But not so this time. I hardly felt the needle go into my arm and he got it right first time. He took all the blood needed and it was over in no time. The guy knows what he is doing. What a relief.


Cost

It is expensive, but it is good value. The fee for seeing De Meirleir is €80. That’s nothing – my train to London cost more – and there is no charge for any of the other staff. The travel and hotel cost about £350 in total. The largest expense was the testing. It varies from one patient to another, but for me it will run to a little less than £2500. The same tests in the UK would have cost significantly more. The clinic bill you for the consultation and some of the tests on the day, and the rest are invoiced to you directly by the blood labs.

Obviously, this is a lot of money, but I see it as money well spent. This will confirm or rule out a great many viruses, bacteria, moulds and parasites and will also give me a status on my immune system. I think this is invaluable as these facts, personal to me, will tell me at least some of the problems that I have and knowing I have these problems, I can treat them. All in all, it has cost a little under £3000. I am grateful to my family for pulling together to cover the cost.


What next?

My results will take two months or more to get to me. A number of the tests need to be cultured and that takes time. Then I expect a further delay as De Meirleir will presumably take a look at them before they are sent to me. I will then review the results and have a further consultation with De Meirleir either in person or over the phone. At this point I will start treatment.

There are no guarantees with any of this, but even if it doesn’t work out for me, it’s hard to imagine I will regret it. I will have done everything I can to get better and I know I have seen one of the best ME/CFS doctors there is.


Joel was diagnosed with ME/CFS in 2009 but struggled with the illness for some time prior to this. He loves to write, and hopes to regain enough health to have his novels published.

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And now you know the partner list is out of date by a decade. So what's the point?

 

A couple of points: I think Research 1st was right on about the testing. In my experience, the tests that KDM orders are both diagnostic and screen for the best treatments for the patients. For instance, GcMAF is one of the treatments offered, but not everyone will do well with it. So, it is important to screen for factors that would indicate that the patient is not likely to respond or might have bad reactions--like IRIS. Some doctors prescribe GcMAF without these tests and some of their patients get IRIS--which is no joke.

Also, while the tests do add up to a lot, I believe they are less expensive than the same tests at a US lab--if you can find a doctor to order them and a lab to run them. And, even if you manage to get these tests, you need someone to interpret them and "put them all together." This is priceless and is not included in the price of the tests, but is included in the fee for your consultation with KDM. The patient receives a several page report when all the test results are in.

Not all patients get the same tests--yes, some are screening for the abnormalities commonly found in ME patients, but as Snowathlete mentioned, some are specific to your history. In a patient's first consult with KDM, you can almost see the wheels turning in his head as he evaluates your history and previous tests and puts it all together to get a picture of what is happening with you, the individual patient.

Because I came from overseas and needed to have blood drawn for tests the day after my consult, he took my file of previous tests and history home with him so that his test recommendations would be available for me in the morning.

I don't think it is necessarily a conflict of interest to have an ME specialist involved in a research laboratory (I have no idea what, if any, that relationship is). If new research is indicating that "such and such" could be a factor in this illness, having a research doc advise a laboratory on the design of appropriate new tests seems to me like a boon.

Sushi

 

And now you know the partner list is out of date by a decade. So what's the point?

I presume that 'current partner list' means, well, current. As in pertinent to the date of that article i.e. May 2012. What's your point? I am informed however from a colleague in the country that the situation is complex as it often seems to be when pouring over company structure details. Perhaps IVI can directly post the detail from which he was quoting - when he next surfaces.

Anyway, back to the thread...

 

Firestormm - I dont know which tests he runs "as standard", but I expect some of them are tests that he runs on most people, yes. Probably the stool test is one of these, and some of the immune tests, and then there are tests that I think he runs depending on your history, symptoms and previous results you might have had. I dont know if Lyme is a standard test or not.

I know some of the tests he is running specifically because of my history, like toxoplasmosis because I used to have a cat around the time that i became ill, and some blood tests that have been out of range before when I was tested by the NHS. These tests were back in 2009 so I think he wants to see how they are now.

His nurse sat me down and explained what each of the tests were for before I agreed to them. I probably could have put in more about the tests but the article as it is is already pretty big at close to 3,000 words, but I have posted all my tests on the forum if you want to look there though.

Yes, I heard that he doesn't take a salary from the clinic. He uses several different labs (three in my case). One of these is http://www.redlabs.be/

I think he was involved in the set up of redlabs originally and helped develop a number of their tests. Of course, as you point out, that doesn't mean there was any impropriety involved. But I agree that avoiding potential conflicts of interests is of course preferable. I read that he is no longer involved with redlabs in such a way.

I think people have to make their own decision on whether to take a prescribed treatment, and where to buy that from. I think there are risks buying and taking anything whether it be made by a big company or a little one, and I think its good to find out as much as you can and then make your decision based on as much information as possible. If, like Ollie, you dont feel you have enough information, then I understand a reluctance to buy/take it.

From my point of view, the NHS does zip for me, and if i want to get any improvement in my health in the next few years, then i have to take matters into my own hands. As I say at the end of my article, my decisions dont come with any guarentees, and I could end up in your position looking back, but I dont think that is a certainty. On the other hand, if i do nothing then im pretty certain i will remain as ill or worse.

The urine test I just had, was something different from the one back in 2009. I did buy that test you're talking about, back in 2009. I dont know if that test is still being sold or not, but my impression is that it wasnt quite the breakthrough it was thought to be a few years ago. I had the slip from that test in my records though, and in the appointment, he asked if it came back positive or not. For me, it was negative.

As I said, I appreciate you candor, Snow. I will have a look at the tests prescribed if I am able and see what RED LABS are using them for these days when I get some more time.

I think one my own failings in the past has been - and this applies to NHS and well as other doctors - has been that of trust. I have trusted them to decide what to interpret from my consultation, what (if anything) to test for, and to interpret the results (if there were any), and then to trust in their diagnosis and/or prescription.

Not saying of course that placing one's trust in a doctor is a bad thing, but I do look back and think to myself 'What were they actually testing for? And how was the result interpreted?' End of the day I suppose it all boils down to opinions. I used to think that the more doctors I saw the greater the chance of a change to my circumstance through, I presumed, better and more appropriate treatment.

So, I inevitably headed towards those doctors who were outside of the NHS. Again not necessarily a bad thing. The NHS is not infallible and neither are those doctors who work for them (and many of those work privately also). But I think when my own money was being needed, I was more cautious - at least I like to think I was.

Of course being an ignorant patient and layperson I was in reality perhaps too trusting. At the time of course I thought I was doing something positive and perhaps felt that the treatments prescribed were in some way more likely to succeed. Looking back I was a naive sod.

I must have had a body-worth of blood taken over the past 15 years. I could tell you a bare fraction of what was being tested for and probably less what it was they found, or didn't find, or more importantly how relevant those results were deemed to be.

Same goes for pee and pooh. Endoscopies and Colonoscopies. I recall recently seeing that Invest in ME were advertising that they wanted to fund research into the gut. Maybe this is still something worth consideration? Though whether in relation to ME or to IBS more generally I couldn't say, but I think this was where - in the past - De Meirlier was heading.

I have never really seen the point of prescribing supplements as treatments for ME unless it is to build us up if we are in a particularly bad way nutritionally. I can't see how such a thing - and I have been there done that - could possibly correct some defect in our gut for example.

Anyway, from someone who spent a lot of money in the hope that testing and more appropriate treatment would point the way, I shall be interested to learn more of your continued experience with this particular clinic. I will take a look at the tests and the treatments if I can find more information out about them.

But whatever the possible conflicts, whatever the tests and treatments prescribed by this clinic turn out to mean, I do wish you and everyone the very best. Sometimes something can and does kick-start our move towards remission. We might not really understand why but if 'it' works then who cares?

Take care. I've not been able to try that Eurostar yet myself. Sounds like a great way to get across the channel. Pricey though but then I'm speaking from a position of relative poverty these days

 

I agree with Sushi, not that this is a competition.

Redlabs is a small lab. It offers a few research based specialist tests for a very competitive price as mentioned. Big labs, offer 100's if not 1000 tests. One can get 'lost' inside big labs easily and waste a lot of money. Redlabs tests are mostly ME CFS specific, preventing this.

If people want to act upon the results, they can if they wish. Either they get retested at a validated laboratory to confirm results for legal reasons or just keep the results for their own health knowledge base. (What most patients do). Redlabs offers choice, something people with ME CFS rarely have, very rarely.

Without KDM I and others would have little immunological evidence that they are immunologically ill. Patients who use Redlabs who gain this evidence are very grateful for the laboratory services offered. I'm sure others mirror this opinion who have been sick for decades and neglected with no access to appropriate medical care.

#Redlabs offers tests at prices most can afford without large profit margins of commercial labs.
#Redlabs offers tests PWME find it hard or impossible to access that prove they are organically ill.
#Redlabs make it clear their tests are for a research basis on their test forms.

Lab results from Redlabs in someone severely affected with CFS, (possible ME), are worth it.
They are often abnormal and prove ongoing significantly elevated levels of immune activation, inflammation, and even immune suppression. This aids people to remove themselves from a misdiagnosis of Fukuda CFS, and CFS/ME (in the UK). Both of these diagnostic criteria for CFS ME do not allow for explained reasons for 'chronic fatigue'.

When we see any doctor privately in the world, they are all selling their products and services to us for profit, namely, their knowledge. E.g. you see a doctor, they tell you CFS is treated with CBT/GE, do no tests associated to having ME and you pay $800 for the service or you pay for it through taxes with the NHS.

For me, that is a worthwhile conflict of interest. People selling CBT and GE for ME, (that has no scientific basis) and telling patients it is 'evidenced based'. Complex immunology changes from test results naturally challenges the scientific basis of using CBT and GE to ''get better from ME''.

Now that's a conflict of interest people should be worried about and the entire private medical system and socialised medical care systems engage in it on a grand scale saving trillions of dollars by refusing medical research to make people better from subsequent drug therapy who have CFS ME. Research that if permitted, would be aided by Redlabs findings, no less. Redlabs is thus a valuable commodity and helps reduce mental suffering in ME patients who otherwise have scant evidence they are sick and unfairly remain accused of having a biopsychosocial disorder.

Not a situation anyone would want to remain in place I'm sure.

 

I have been a patient of KDM for about a year and a half.

He is very effective and this can be seen as cold but i like that he did not ask me a lot of questions. In the past doctors have asked me and i can tell you how i feel for hours. KDM took extensive lab testing and then deducted from the lab test how i felt. it was lovely to sit in front of a doctor who said , does your bladder burn? ( yes) tummy like a pregnant woman ( yes)

I agree with the problem of the scripts, my swedish pharmacy was not impressed and it took some time, but i always got help from the clinic.

Redlabs have given me an abundance of usefull information that i have tried to take to my regular swedish doctor, she just shakes her head, she will not include information from any other source into my file. KDM found my Brucella but my swedish doctors won't accept it since it did not show up on their test ( a notoriously hard test, many false negativs, no false positives)

KDM is dedicated and hardworking. I have been on enteric coated antibiotics. 4 ME, GcMaf, and now on antibiotics for brucella. I am not sure if i am better, i have only been on the treatment for 10 months and i have had times when i have not been able to afford the shots. during this time i have felt ok sometiems and shit sometimes.... like ME

I will see him again in march and we are starting to monitor my antibodies to see if i could have a normal pregnancy and a healthy child.

his daughter has ME, and has a healthy child.

My sister works in an lab and she says that redlabs prices are normal and just for their work. who profits? who cares, i would rather someone gets rich from my recovery than my demise.

KDM tries to give me hope, and i would take it if i had ever heard of a ME sufferer getting a lot better.

 

I presume that 'current partner list' means, well, current. As in pertinent to the date of that article i.e. May 2012. What's your point? I am informed however from a colleague in the country that the situation is complex as it often seems to be when pouring over company structure details. Perhaps IVI can directly post the detail from which he was quoting - when he next surfaces.

IVI is not a valid source. The closest thing his post on his blog comes to a real source is a website where people can pay for records, which probably is just a dump of all information ever associated with the company, with no regards for how current that information is. For example, IVI lists "Dexia Ventures" under "current partners", even though they ceased to exist in 2002. There's no sign of actual records, much less current ones, indicating what you claim. Whereas there are claims that Dr Meirleir says he sold his interest in R.E.D. Laboratories 10 years ago.

If you're going to make accusations that someone is denying, I think it's a good idea to first find some proof of those accusations.

 

IVI is not a valid source. The closest thing his post on his blog comes to a real source is a website where people can pay for records, which probably is just a dump of all information ever associated with the company, with no regards for how current that information is. For example, IVI lists "Dexia Ventures" under "current partners", even though they ceased to exist in 2002. There's no sign of actual records, much less current ones, indicating what you claim. Whereas there are claims that Dr Meirleir says he sold his interest in R.E.D. Laboratories 10 years ago.

If you're going to make accusations that someone is denying, I think it's a good idea to first find some proof of those accusations.

Oi! I didn't make an issue of this Val. You are. I said most recently that IVI will probably come along and quantify his article. Here's another source. It was Johan with whom I most recently conversed. In his reply to a comment he received he confirmed that De Mierlier was still a partner.

I say again - it matters little if there is a conflict of interest. What matters is that patients are aware that there could be. I am not saying that Kenny is deliberately testing patients with tests he has developed, processing those tests, and through some commercial venture with which he and/or his wife are connected is purposefully creating wealth and that it is all in some way fraudulent.

As a former business person I would suggest that from a business perspective it makes financial sense for a private clinician to have his own clinic/laboratory interest/and be able to offer tailored treatments. Wraps it up nicely and maintains control (to a greater or lesser extent) and yes, it could maximise return.

It doesn't mean that what he does or prescribes by way of treatment is for shit. If people don't want to take on board what IVI has researched and said - or Johan for that matter - then fine. I merely pointed it out - as did Ollie.

You could always ask Kenny to declare his interests as could any patient of his come to that. I am actually more interested in the efficacy of his tests and treatments than his commercial relationships or how much he earns each year from the patient charges.

I don't think I have done anything wrong here. I haven't defamed anyone. WPI for example had interests in laboratories responsible for testing patients over XMRV at least and I believe Kenny was testing similarly for patients over that one too.

Indeed from memory and whilst on the subject in at least one of his papers from 2009 I think it was (will check) he refers to the possibility that XMRV infection was in-line with his thinking in terms of the 'damage' to the immune system.

Here's another post from Johan who was a patient of De Mierlier's asking about the XMRV testing that this doctor performed and his interpretation of those tests.

I don't think I want to continue this line of conversation with you. If you feel that in drawing attention to this contention I am in some way at fault - then please report my posts and let's let the moderators decide.

If all of this gets deleted or moderated by them then so be it. Personally I wish it had been left as it was when I made my first comment. But you're the lawyer so you probably know far more about all this 'You can't say that on the internet' malarkey than I could possibly ever hope to.

 

Am a little lost. Is there any reason why when I type 'De Meirlier' into the ncbi pubmed database it only results in the one study from 1991? http://www.ncbi.nlm.nih.gov/pubmed?term=De Meirlier

I think I'm probably doing something wrong. I know he's published more than that. Not used the search function before. Am such a dunce Danke.

 

Am a little lost. Is there any reason why when I type 'De Meirlier' into the ncbi pubmed database it only results in the one study from 1991? http://www.ncbi.nlm.nih.gov/pubmed?term=De Meirlier

I think I'm probably doing something wrong. I know he's published more than that. Not used the search function before. Am such a dunce Danke.

It's "De Meirleir"

 

Oi! I didn't make an issue of this Val.

Yes you did, when you brought it into the discussion as a means to call into question the tests being suggested by Dr. Meirleir.

I said most recently that IVI will probably come along and quantify his article.

Your statements may be based on IVI's poor research, but you are still responsible for them. "IVI said" is not a proper source. To avoid similar embarrassment in the future, it might be a good idea to check your sources first.

Here's another source. It was Johan with whom I most recently conversed. In his reply to a comment he received he confirmed that De Mierlier was still a partner.

Yes, I read that. And as you did, you'd be aware that someone on that page claims Dr Meirleir says he "stepped out when it became a lab/went commercial in 2003." And you would also be aware that Johan provided absolutely no response when asked where he got his information about Dr Meirleir still being a partner. I don't think asking for a credible source of information is such a hardship. Again, "IVI and Johan said so" is not a credible source.

I don't think I want to continue this line of conversation with you. If you feel that in drawing attention to this contention I am in some way at fault - then please report my posts and let's let the moderators decide.

I'm a big fan of free speech. But I'm not a big fan of the "I don't want to talk about this anymore, but I'll keep pushing my point" posts. If you don't want to continue this line of conversation, the solution is easy. But if you keep insisting or implying that there is some undeclared conflict of interest that should cause us to distrust Dr Meirleir and the tests he uses, I think you should accept that some people are going to continue to disagree with you.

 

But if you keep insisting or implying that there is some undeclared conflict of interest that should cause us to distrust Dr Meirleir and the tests he uses, I think you should accept that some people are going to continue to disagree with you.

That is NOT what I was doing, Val. How about transparency? Knowing who is behind what is being sold and whether or not what is being sold is actually a medical treatment. You adverse to that also or maybe you too think I am some damn plant?

This is forum. I dare say many folk were aware of his connections and his former research findings of XMRV and testing etc. I ain't writing a dissertation here. Or penning a lecture.

If you would like some sources outside of those expressed by those two I have already linked, then you'd have to wait. I understand that much of it is in Dutch but I have asked.

It isn't a big deal who or what Dr Meirlier is or isn't associated with. And yes I realised that in replying to you originally I was indeed raising it but it was I thought in response to you declaration that his disassociated himself 10 years ago with Red Labs.

There is some contention over that matter. It is hard for me being in the UK hence the link to Johan. I suggest we leave it there.

You know I don't think there is anything wrong with me being sceptical. I have been burnt by those who operate outside of the NHS. I won't name them. The thing is that ME works against us being a condition(s) defined solely by symptoms.

It leaves us more open to opinion and to treatments and tests and financial and emotional/mental loss. Sometimes (at the time) it is all too easy - as I know - to feel a need to 'do something' rather than - I don't know - learn to accept that this is my lot in life now and to make the most of it.

I have experienced periods of relative remission where activities are easier to perform and these were NOT caused by any treatment or protocol that required financial expense.

Yes, it's my own experience and I am perhaps biased but I would say I am healthily biased. I don't see anything wrong - speaking generally and not in connection to De Meirlier - in asking questions.

I haven't asked enough in terms of tests and recommended treatments as I said before. On forums we are trying to gain a greater knowledge and understanding - an appreciation of the known facts if you like.

Sometimes we don't have the ability to gather the information for ourselves and so we share. There's no judgement. I am not telling people not to buy McMAF or whatever it might be.

We all make decisions. We are all responsible for them. I'd rather be informed as much as I am able before embarking on such a financial investment again.

I tell you what. I will now send an email to De Meirlier's clinic asking for a financial interests disclosure. I doubt if I will get a reply but I might. If I don't then that won't infer a judgement on my part against De Meirlier.

 

I always knew KdM was a director of Red Labs Belgium - it didn't bother me, I don't see why a doctor should present this information before treating you or doing tests, its irrelevant. As long as the lab is reputable and used by other sources then what's the problem?
I haven't had any improvement, I don't blame KdM though, I'll do a couple more visits and hope something works, people pay their money and put their trust in ME doctors, no guarantees but the lucky ones may get an improvement, and improve their quality of life, dramatically for some.
As for the clinic, my e-mails have always been answered promptly, prescriptions faxed over to UK chemists very quickly, repeat prescriptions put in the post the same day of request. Brilliant nursing staff when you visit, I could go on.

I hate these picky discussions, I'm not saying they shouldn't happen but their are just irritating for me, why not focus on the fact that he doesn't charge a lot for consultations, you get the choice what tests you want done and a price list up front, and they aren't astronomical, other private clinics charge much more.

 

Thanks for your experiences Maryb. It's great to hear the clinic in Belgium can fax over prescriptions to other countries like the UK, presumably a benefit of being in the EU? I was always thinking how one would cope with hostile doctors in the UK who might block prescriptions written by other doctors out of the UK.

It's really positive to see patients able to finally engage with medical care and and then hopefully make some improvements in their health by having alternatives to treatments that dont' work (CBT, GE).

 

Firestormm, we have listed some research papers by Kenny De Meirleir and others supporting his findings at http://www.cfs-ireland.com/scientific/1.immune.htm
There are categories for other biological dysfunctions and accompanying scientific papers on our web site at http://www.cfs-ireland.com/listing.htm
And the Scientific Evidence section gives one a good scientific overview of the illness - http://www.cfs-ireland.com/scientific.htm

As regards conflicts of interest and Kenny De Meirleir, it may be a consideration but it is far more important to measure the effectiveness of his diagnosis and treatments in terms of people recovered or partially recovered < 70% full capacity / full health.

We have a listing of 20 top ME/CFS clinics in the world on our web site www.cfs-ireland.com and have contacted them with a view to establishing exact number of recoveries and partial recoveries. If one recovers, does it really matter if there are conflicts of interest ?

ME/CFS is a multi-layered illness encompassing many biological abnormalities and dysfunctions and infections. And these need to identified, with precision, and treated individually or in paralell. Our web site examines this in detail. ME/CFS is difficult to diagnose and treat, and old outdated dinousaur socialist medical systems in Europe cannot possibly diagnose and treat sucha complex multi-faceted illness. A privitised health system based on new technology, innovation, dynamism, hard work and productivity, openness to new ideas and new insights , and financed through universal insurance schemes is the only realisitic hope for European countries And its very achievable.

 

I'm very eager to keep following this thread and I would like to say thanks to Mark for writing such a great article about his visit. Dr. KDM, clinic and Redlabs appear to be providing pretty close to the best value of treatment in the world. Doing all of this while providing studies and clinical trials. He always seems to be following the data that is present in research and uses it to further the treatment to his patients, which I can't say is true fo a lot of the other CFS specialist. I understand at times the data seems to want to go in diffeent directions and I believe that is directly due to different subsets that will get sorted out over time I hope.

Thanks again for a great article!

 

I'm very eager to keep following this thread and I would like to say thanks to Mark for writing such a great article about his visit.!

Apologies for any confusion: I merely published the article, Joel (snowathlete) wrote it. (Technical changes should make this clearer in future). I agree it's a great article.

 

Thanks Joel!!!

 

I found the following among Dr. De Meirleir's research.
Here is a list of De. Meirleir's research:
http://www.ncbi.nlm.nih.gov/pubmed?term=De Meirleir K[Author]&cauthor=true&cauthor_uid=19086101



Mods. Do we need a separate thread? I don't want to take away focus on SnowAthlete's experience.

Barb

 

I found the following among Dr. De Meirleir's research.
Here is a list of De. Meirleir's research:
http://www.ncbi.nlm.nih.gov/pubmed?term=De Meirleir K[Author]&cauthor=true&cauthor_uid=19086101



Mods. Do we need a separate thread? I don't want to take away focus on SnowAthlete's experience.

Barb

And why the heck didn't that work for me? I am definitely going nuts