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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Comments

Thank you for sharing your experience. It sounds promising to me..... and I look forward to learning more about the test results and treatment plan. So glad you could get out of the UK to see this Dr.!!!
 
Thank you so much for sharing this with us.

I am planning to do a similar trip to one of the ME/CFS specialists. Do you maybe remember which specific viruses, bacteria, etc. you got tested for?

I have medical insurance in my own country so it would be a great financial load-off if I could do some of the test here, before I travel.
 
Thanks for posting this, Joel. Very interesting. Looking forward to hearing more.
 
Thanks Snowathlete,

Very good write up. Yes, the phlebotomists! I am also one who usually comes out with bandaids stuck all over my arms, but he always gets me on the first prick and always finds a good vein--I am thankful for that.

BTW, did you notice that there is an elevator at the Eurovolley?

And, today Prof. De Meirleir is giving an interesting talk:

http://myemail.constantcontact.com/...xpert.html?soid=1109135005876&aid=vxnWBHmcpME

ME/CFS From Infectious Disease to Autoimmune Disorder

I hope we hear some reports soon. The audio recording is supposed to be available soon.

Best,
Sushi
 
Hi SnowAthlete, I'm very happy for you, that you had the opportunity to meet a great doctor and I'm praying now that he will be able to help you. It would be great if you could post a list of the test you did, maybe I can get my insurance here in my country to pay for some of them. Please, keep us updated about the results and the treatments. Keep the hope up, you are in the hands of one of the best doctors.

Best wishes,

Sherezade
 
Thanks everyone, I'm glad that you have found it interesting.

Sushi - there is a lift?! How do I miss things like that? I must have been walking around with my eyes closed. Thanks for letting me know; I will certainly use it next time I go!

Sherezade - thank you; I'm certainly open to prayers - I'll take all I can get! Yes, I just posted most of my tests on a thread in the 'ME/CFS Doctors' section on the forum. Hope you find them useful to know and I hope you have some luck getting some testing paid for by your insurance. Do let us know how that works out.
 
thank you
thank you
look forward to a positive outcome
and further information
 
Thanks everyone, I'm glad that you have found it interesting.

Sushi - there is a lift?! How do I miss things like that? I must have been walking around with my eyes closed. Thanks for letting me know; I will certainly use it next time I go!
We're all half dead by the time we get there! I had a big bag so I asked...it is sort of behind the stairs.

Quite funny for the patients to watch all those healthy giants play volleyball. They have two extremes of guests. :rolleyes:

I never found that restaurant you went to...is it farther down the street that the Eurovolley is on? Or back toward Himmunitas?

Sushi
 
Sushi: about 400m further down the street (away from himmunitas) and then you need to go right (a small street in the woods), this leads straight up to the resto :)

Kind regards
 
Thanks so much for the article, snowathlete! After I try a couple more things in the Netherlands that are covered or semi-covered under health insurance, I'll probably be off there as well.

I have the jaw thing too. Left side started clicking a year before I got sick, then the right side got painful and "stuck" like it needed to click a couple weeks before my full ME symptoms started. And the blood drawing thing ... eek! "Hunt the vein" has been a constant game since I got sick, and 6 months ago there was half an hour of trying, being sent home, going back, still couldn't find it, so taking it from the hand. And then almost passing out :ill:

Anyway, great article, and you're an excellent writer.
 
Thanks for sharing snowathlete and Sushi for KdeM's further talk and thoughts.
 
Sushi as dece says, it's about 400 meters turning left as you leave the eurovolley. When you reach the track road into the woods, you know you're in the right place because there is a sign there at the road entrance. It's about the same distance again, into the woods.

Valentijn Thanks, that's very kind of you to say.
I don't know what the jaw thing was about exactly, but he obviously thought it was significant enough to ask about. I didn't think about in relation to my ME but I did get it about the same time and it's bad enough that I went to my GP with it - he dismissed it of course. I wonder if anyone else has any insight on that?
 
I also travelled from the UK to see KDM, and I was very disappointed indeed - for me it was a total waste of time and money.

I stayed at the Campanile Hotel (just about ok, but heavily overpriced), the taxi was an hour late for me too, and for anyone else who stays there do be aware there's a bus that goes from the station right to the clinic, you don't need a taxi. No idea why the clinic didn't tell me that.

The time with KDM wasn't enough for him to take a history from me, let alone talk about symptoms or treatments I'd found that worked - he seemed only interested in his process, his questions. It took nearly four months before I heard anything after the appointment. I was expected to spend large amounts of money on all sorts of treatments with no explanation even of what they were for just where to buy them (commissions?). I was told to get enteric coated antibiotics, and sent a Belgian prescription. It's impossible to use the prescription format they provided in the UK (no postal address on it, required by law in the UK), and enteric coated amoxycillin do not exist (eventually they confirmed they don't need to be enteric coated). I spent two MONTHS emailing the clinic, getting no reply, getting unhelpful answers, being sent replacement prescriptions (twice), being ignored, chasing them over and over again, asking questions about the treatments, getting unclear answers - it was incredibly irritating and a horrible waste of time. I gather KDM travels a lot, but it seems if anyone emails a question when he's not there, no-one replies to the patient. One treatment proposed was "4ME" - I'd never heard of it. I eventually discovered it is his own manufactured equivalent to Nexavir, but I was to buy it from a "company" (I was told it was his wife's business, I've no idea if that's true) with no web site, no phone number and operating through a Hotmail account - when emailing an order they are very quick to respond, but funnily enough when asking any other questions (what is it? where is it made? what are the risks?), they don't bother to reply. It's appalling that a doctor suggests I buy a substance from such an unclear source and inject it. I made a decision to proceed at my own risk, I started treatments, relapsed, and ended up selling the supplements and switched to another doctor. I didn't like KDM's manner, his team were completely unhelpful once I'd left the clinic, and there was no support for me during treatment. KDM is clearly a very smart man, and highly committed to this illness, but as a physician, he didn't meet my expectations. What use is a doctor if he throws a shopping list of pills at you, and then leaves you to fend for yourself when there are problems?
 
Thank you for sharing your experience. It sounds promising to me..... and I look forward to learning more about the test results and treatment plan. So glad you could get out of the UK to see this Dr.!!!
What a great writeup and detail story. Looking forward to more on your results and treatment.
San Diego#1
 
Sushi as dece says, it's about 400 meters turning left as you leave the eurovolley. When you reach the track road into the woods, you know you're in the right place because there is a sign there at the road entrance. It's about the same distance again, into the woods.

Valentijn Thanks, that's very kind of you to say.
I don't know what the jaw thing was about exactly, but he obviously thought it was significant enough to ask about. I didn't think about in relation to my ME but I did get it about the same time and it's bad enough that I went to my GP with it - he dismissed it of course. I wonder if anyone else has any insight on that?
The jaw thing is Temporal Mandibular jaw problems. Where y0u can't chew or bite your food properly. Your jaw is out of alignment. There are Dental specialist just for it.

San Diego #1
 
olliec - thanks for sharing your experience; its helpful to hear a different experience. Sorry it wasn't a great experience for you personally though.

SanDiego#1 - thanks :) Regarding the Temporomandibular I just wonder what De Meirleir thinks this has to do with ME/CFS.
 
I also travelled from the UK to see KDM, and I was very disappointed indeed - for me it was a total waste of time and money.

I stayed at the Campanile Hotel (just about ok, but heavily overpriced), the taxi was an hour late for me too, and for anyone else who stays there do be aware there's a bus that goes from the station right to the clinic, you don't need a taxi. No idea why the clinic didn't tell me that.

The time with KDM wasn't enough for him to take a history from me, let alone talk about symptoms or treatments I'd found that worked - he seemed only interested in his process, his questions. It took nearly four months before I heard anything after the appointment. I was expected to spend large amounts of money on all sorts of treatments with no explanation even of what they were for just where to buy them (commissions?). I was told to get enteric coated antibiotics, and sent a Belgian prescription. It's impossible to use the prescription format they provided in the UK (no postal address on it, required by law in the UK), and enteric coated amoxycillin do not exist (eventually they confirmed they don't need to be enteric coated). I spent two MONTHS emailing the clinic, getting no reply, getting unhelpful answers, being sent replacement prescriptions (twice), being ignored, chasing them over and over again, asking questions about the treatments, getting unclear answers - it was incredibly irritating and a horrible waste of time. I gather KDM travels a lot, but it seems if anyone emails a question when he's not there, no-one replies to the patient. One treatment proposed was "4ME" - I'd never heard of it. I eventually discovered it is his own manufactured equivalent to Nexavir, but I was to buy it from a "company" (I was told it was his wife's business, I've no idea if that's true) with no web site, no phone number and operating through a Hotmail account - when emailing an order they are very quick to respond, but funnily enough when asking any other questions (what is it? where is it made? what are the risks?), they don't bother to reply. It's appalling that a doctor suggests I buy a substance from such an unclear source and inject it. I made a decision to proceed at my own risk, I started treatments, relapsed, and ended up selling the supplements and switched to another doctor. I didn't like KDM's manner, his team were completely unhelpful once I'd left the clinic, and there was no support for me during treatment. KDM is clearly a very smart man, and highly committed to this illness, but as a physician, he didn't meet my expectations. What use is a doctor if he throws a shopping list of pills at you, and then leaves you to fend for yourself when there are problems?
Interesting post. A lot of these specialists are like that. I will have to give Cheney his credit.
I really never felt left out -at least for long
. I e-mail him all the time and complain or let him know what is working or not working and so far he has given me many other options. Simple things. He is expensive. I am doing better on his Protocal. He is definitely not disinterested and while you are there he is working only on you and your problems.

San Diego#1