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The De Meirleir Experience

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

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

Image of the Himmunitas LogoTrying 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.

The Eurostar trains at St Pancras, London

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

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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{ 111 comments… add one }

  • Nico January 28, 2013, 3:03 pm

    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.!!!

  • Tally January 28, 2013, 3:08 pm

    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.

  • Sasha January 28, 2013, 3:17 pm

    Thanks for posting this, Joel. Very interesting. Looking forward to hearing more.

  • taniaaust1 January 28, 2013, 5:32 pm

    I really enjoyed reading about your experience. Thanks.

  • Sushi January 28, 2013, 5:36 pm

    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

  • Sherezade January 28, 2013, 5:51 pm

    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

  • snowathlete January 28, 2013, 7:10 pm

    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.

  • GcMAF Australia January 28, 2013, 7:37 pm

    thank you
    thank you
    look forward to a positive outcome
    and further information

  • SickOfSickness January 28, 2013, 7:46 pm

    Thanks.

    I hope you improve a lot.

    The part about his analytical eye is excellent.

  • Sushi January 28, 2013, 7:49 pm
    snowathlete

    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

  • dece January 29, 2013, 3:10 am

    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

  • Valentijn January 29, 2013, 3:12 am

    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.

  • Enid January 29, 2013, 5:46 am

    Thanks for sharing snowathlete and Sushi for KdeM's further talk and thoughts.

  • snowathlete January 29, 2013, 6:35 am

    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?

  • olliec January 29, 2013, 10:51 am

    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?

  • SanDiego#1 January 29, 2013, 11:08 am
    Nico

    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

  • SanDiego#1 January 29, 2013, 11:11 am
    snowathlete

    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

  • snowathlete January 29, 2013, 11:31 am

    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.

  • SanDiego#1 January 29, 2013, 11:46 am
    olliec

    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

  • SanDiego#1 January 29, 2013, 12:11 pm
    snowathlete

    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.

    Sometimes the TMJ can cause headaches, jaw pain, neuro problems and can be very painful to jaw, neck and shoulders. I wear a mouth splint at night so I won't grind my teeth as I have TMJ.
    I am a reg Dental Hygienist and worked for a specialist for years. Guess he is ruling out other
    disorders. The mouth splint works really well. A TMJ specialist should do the impression and splint. It can also help some people with sleep apnea.

  • Nico January 29, 2013, 12:54 pm
    snowathlete

    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'm wondering if the jaw clicking thing is part of the hyper-mobility aspect? When I was a pre-teen/teenager I had to wear a retainer for this. I have some hypermobility (thumb, recently in past year ankle)….anyway…that's just my assumption on the jaw thingy.

    I'm really sad to read olliec's experience. that does shed a dimmer light on the situation overall. darn.

    Re: Dr. Cheney: ha! I heard he charges something like 1,000$ an hour. Is that hearsay? For that price, I hope a pedicure is included 😉 just teasing…but really…I heard that number from someone.

  • snowathlete January 29, 2013, 1:04 pm

    I seem to remember that Temporomanndibular is sometimes related to RA? I think De Meirleir is testing me for this, so maybe thats something he asks and tests for to rule RA out?

  • Sushi January 29, 2013, 1:14 pm
    snowathlete

    Sushi
    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've got "the jaw thing" too–guess it is TMJ–maybe related to EDs? But a lot of us seem to have "the jaw thing."

    Sushi

  • Sushi January 29, 2013, 1:24 pm

    Sorry about your experience, olliec,

    I have always had prompt replies to my emails with questions.

    He does prescribe some meds that aren't available in the UK and some other places–but I believe he chooses them for good reasons. Just a note for others: because of this it is good to get your prescriptions phoned into a Brussels pharmacy as soon as you have the scripts. They will deliver to the clinic so you can pick them up there. They carry all the meds that KDM is likely to supply.

    I am in the States and have to have all my prescriptions re-written by a local doctor because prescriptions are not international. Re 4 ME, I believe the "low profile" is because the US company did not like this med offered at a lower price and with less of the preservative phenol in it.

    Sushi

  • SOC January 29, 2013, 2:55 pm

    SanDiego#1 – thanks :) Regarding the Temporomandibular I just wonder what De Meirleir thinks this has to do with ME/CFS.[/quote]

    I had jaw surgery for TMJ about 30 years ago. They actually broke my jaw and rewired it into proper alignment! Worth it, from one perspective, because the misalignment was damaging my hearing. Now I wonder if it wasn't an ME/CFS thing, although I didn't (as far as I know) have ME/CFS at the time. I am hearing more and more about an association between TMJ and ME/CFS, but I can't imagine what the connection could be.

  • justy January 29, 2013, 3:38 pm

    I have the 'jaw thingy' too! it clicks and crunches when i open my mouth semi wide.

    I think in general there is a problem with follow up with M.E docs in general. I have recnetly had some issued with Dr Myhill about questions and being charged for them – and being left to fend for yourself most of the time. But i suppose they have so many patients, that unless you live nearby and can afford to go in and see them whenever you need to or for follow ups then this is what happens. Ohterwise you get charged a small fortune by Cheney for one to one attention.
    If we all had an M.E literate doctor around the corner from our homes who took insurance or was on the NHS then none of us would have this problem.

    Thanks for the article Joel – very informative.

  • Allyson January 29, 2013, 7:20 pm
    SOC

    SanDiego#1 – thanks :) Regarding the Temporomandibular I just wonder what De Meirleir thinks this has to do with ME/CFS.

    I had jaw surgery for TMJ about 30 years ago. They actually broke my jaw and rewired it into proper alignment! Worth it, from one perspective, because the misalignment was damaging my hearing. Now I wonder if it wasn't an ME/CFS thing, although I didn't (as far as I know) have ME/CFS at the time. I am hearing more and more about an association between TMJ and ME/CFS, but I can't imagine what the connection could be.[/quote]

    Hi Soc, I have a TMJ too – well 2 actually and had heard it was a symptom of ME – in the line of RSIs and joint pain I had heard.
    All these symptoms – and many more – only made sense to me whenn i heard of the theory of ME maybe being a connective tissue disorder – such a broad sweep could only be covered by such a generalised …body part, as it were.

    see this thread for more and tmjs are mentioned about half way through i think

    http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehelrs-danlos-syndrome-stretchy-veins.20351/#post-310872

  • liquid sky January 29, 2013, 8:56 pm

    Hope you find some help from De Meirleir, snowathlete. The jaw thing is frequently found in Lyme Disease. Not sure if he checked you for this or not?

  • David Egan January 30, 2013, 9:43 am

    Isn't it very strange that western governments waste billions of euros / dollars bailing out bankrupt banks and financial institutions and bondholders and fighting endless wars while enforcing cutbacks amounting to billions of euros / dollars in health services, clinics, hospitals, disability payments, etc.. They are undermining and destroying the very foundations of western societies – the health and well being of the people, the workers, the value creators.

    The British government and some other governments are now forcing chronically sick disabled people back into work, while depriving them of the necessary medical treatments to treat their illness. ME/CFS being one example of such chronic illnesses. Its totally outrageous, and shows how depraved some leaders and governments really are.

    And these governments claim there is no money to build ME/CFS clinics. But there is money to do this, plenty of money, billions of euros/dollars, all that is missing is some strategic thinking and actions, and true leadership on the part of governments. The proposals for an ME/CFS clinic on http://www.cfs-ireland.com could be applied in any country in the world, and furthermore, this web site has a listing of the 20 top ME/CFS clinics in the world which have had medically verified recoveries from ME/CFS. The only relevant question is – how badly do we (ME/CFS patients) want it and what are we going to do about it ?

  • Firestormm January 30, 2013, 11:28 am
    Mark

    View the Post on the Blog

    View the Post on the Blog

    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.

    Can I ask if you have been informed what all these tests are for and how effective they are? Only from your account they seem to have been 'standard' and I wonder to what extent this doctor has considered you as an individual or conducted a consultation.

    You also mentioned that Dr De Meirlier – in so far as you were concerned did not take an income from the clinic. This may be true, but I think you will find that he owns or has an interest in the laboratory that processes the tests.

    If this is the case then there is a conflict of interest (not necessarily a bad thing) in prescribing a battery of tests and then treatments (as per Ollie's comment), produced by one's family member.

    I've spent considerable sums on tests that were not considered necessary by the NHS. Sometimes they led to treatments – again not recognised by the NHS.

    At the time I thought I was at least 'doing something' and felt better for it. Afterwards? Not so much.

    I guess we have to 'suck it and see' for ourselves. We're not going to know without trying. I would like to have heard more about your tests and how he determined they were appropriate.

    The 'urine test' reminded me of the exposure he received way back in 2009. I never did learn what came of it all and would like to know. Presumably it never caught on/was accepted.

    I notice though that Cort featured that particular pronouncement on this forum at the time saying that some had termed it the 'big breakthrough'. Is Dr Meirlier still using such a test for the same thing, and thinking it is responsible for ME?

    Thanks.

  • Research 1st January 30, 2013, 12:39 pm
    Firestormm

    Can I ask if you have been informed what all these tests are for and how effective they are? Only from your account they seem to have been 'standard' and I wonder to what extent this doctor has considered you as an individual or conducted a consultation.

    You also mentioned that Dr De Meirlier – in so far as you were concerned did not take an income from the clinic. This may be true, but I think you will find that he owns or has an interest in the laboratory that processes the tests.

    If this is the case then there is a conflict of interest (not necessarily a bad thing) in prescribing a battery of tests and then treatments (as per Ollie's comment), produced by one's family member.

    I've spent considerable sums on tests that were not considered necessary by the NHS. Sometimes they led to treatments – again not recognised by the NHS.

    At the time I thought I was at least 'doing something' and felt better for it. Afterwards? Not so much.

    I guess we have to 'suck it and see' for ourselves. We're not going to know without trying. I would like to have heard more about your tests and how he determined they were appropriate however.

    Thanks.

    Firestorm I would like to help answer you as well and, I hope this answer helps a little.

    The tests KDM performs are ''standard'' in terms of meaning the tests are based on the abnormalities he often finds in patients, from many years testing them. Overtime, KDM has obviously found a whole host of abnormalities to look for in people labelled with CFS or ME. The list is pretty exhaustive, but basically often something comes up that a patient is infected with (Virus, bacteria, zoonotic infection), or deficient in. These tests aren't allowed to be performed in the UK by UK GP's, as then the true nature of ME would be demonstrated to physicians. Believe you me, I have tried and I have seen many GP's and many hospital specialists. None of them allow tests, even if you show a doctor research based evidence.

    Try asking for a cytokine panel, an NK Function test, TILT test etc the NHS will simply say ''no''. This is sadly, why the UK has become the laughing stock of the ME world.(No choice offered to patients). This is inevitable in a socialized cost based health care system. Big brother has to dictate orders what a doctor can and cannot test for. No wonder Dr Myhill was ''reported'' by a sneak to the GMC for helping to give birth to a pig!!!!!

    Dr DeMerlier practices medicine and thus regularly performs medical tests that he has an idea might be abnormal. This idea is often alien to people in the UK who don't have access to a doctor that investigate the vast array of organic dysfunction seen in people with ME & CFS, and instead stick to the NICE guidelines that omit PWME in preference to unexplained non organic Chronic Fatigue….and we know where that leads to.

    I would not recommend traveling to KDM and spending your money if you have CFS or were diagnosed with ME, on the basis you have unexplained chronic fatigue and a few symptoms and can walk around and be active most of the time without classic 'pay back' and relapse from post exertion of body or mind with wildly fluctuating symptoms also that don't have to be associated to exertion at all. E.g on a Monday night you may have a sore throat, on a Wednesday afternoon you may be too short of breath to walk upstairs or from room to room and within two days you can walk down the garden. This is what ME does, it's erratic and the symptoms are largely immune, cardiovascular, and neurological with chronic pain that again, can be all over the place in terms of severity of different body parts. Chronic fatigue, is not. It's a symptom. One symptom. 'Patients' without ME can genuinely believe they have ME without any abnormal tests in their portfolio to suggest this. So for these people it seems a silly idea to waste thousands of pounds on a mere chance you might get lucky.

    Conversely, I would recommend traveling to KDM if you have ME and the classic autonomic dysfunction, recurrent vertigo, permanent headache of new pattern severity worsened by upright posture, cardiac problems that place you in A&E unless you avoid all stress, repeat viral infections, swollen lymph glands, erratic blood sugar control causing hypoglycemia, unexplained significant weight loss, severe chronic pain of an inflammatory nature (Including burning genitourinary symptoms), itching, MCS, bowel problems etc etc etc if you have asked these to be investigated in your own country and this is not followed up and so you have no idea why you are sick.

    KDM's tests give you some idea why you have the symptoms you do. They will show immune activation amongst other things.

    In the UK and indeed anywhere in the world without specialized private health care 99.9% of the time, symptoms are not followed up once a diagnosis of CFS/ME is made. This is because the symptoms are believed by the NHS in the UK, and the CDC in the US to be ''functional'' in nature (non organic). From here on they can be deemed as not a threat to the patient if left alone and not something able to be treated because they only belong to the patient as real (''beliefs'') and engaging with a patient searching for a mystery cause will only keep them focused on ''automatic negative thoughts'', which will delay a recovery.

    If you're used to that in the UK (this is what the Royal Colleges preach as 'evidence based' treatment for CFS/ME), then KDM's test ideas would seem like a Martian had landed in your kitchen and was offering you a bizarre recipe. No wonder people are cautious. I would always be cautious spending money on any treatment if someone told me I had an illness because they couldn't find the cause, and used no tests to come up with this diagnosis. But this is what every diagnosis of CFS/ME is. It means we don't know why you are ill using basic tests for other conditions. So KDM, sensibly, uses specialist tests and not basic tests.

    If it helps, so far I have had most (not all) of KDM's tests he recommends as worth looking at, and indeed, most of them are abnormal. Yes I did cherry pick because I follow CFS organic research, but really, this is the point. KDM is offering tests that are based on CFS organic research, so of course if you have ME (or think you do), you will likely come up positive. If you don't, and every test you have is negative then this is also useful as then you'd know you likely don't have ME at all, but simple unexplained chronic fatigue and thus a diagnosis of 'CFS/ME' is appropriate.

    I cannot travel. But what I do know is there is science in the medicine KDM practices as otherwise me ME 'likely' tests, would not have all been abnormal in the majority if I had only had a simple Chronic Fatigue of unknown cause (CFS/ME). Other patients I have spoken to also have the same abnormal results as me, and they are all severely affected long term patients. So there is a reason that KDM's patients gets the same test results as myself, and that is an underlying organic disease – ME.

    If you look at the kind of tests KDM does, they feature heavily in the ME International Consensus Guidelines. Available here:

    http://hetalternatief.org/ICC primer 2012.pdf

    That to me, is the benefit of seeing KDM. Not especially the treatment (all ME treatment is experimental unless a specific infection of deficiency is tackled) but the fact you can validate your disease as actually being a disease, to yourself and your family via markers for infection, inflammation, immune suppression etc.

    That's really what KDM offers and something that ironically could easily be offered in the UK or other pro psychiatric systems of health delivery, if the authorities allowed. For that to happen, the psych profession's grip on power would need to be dropped because a drug is found to be effective. Something like Rituximab + biomarker to select which kind of patients the drug works for. This may happen eventually, or sooner than eventually.

    A case of sitting it out, unfortunately. Hopefully not until the next millennium.

  • Valentijn January 30, 2013, 1:11 pm
    Firestormm

    You also mentioned that Dr De Meirlier – in so far as you were concerned did not take an income from the clinic. This may be true, but I think you will find that he owns or has an interest in the laboratory that processes the tests.

    Do you have any information suggesting he has a financial interest in R.E.D. Laboratories? I've looked online briefly, and the only indications I've seen imply he does not have an interest in it. Either way, I think it's generally better to avoid accusations of a specific conflict of interest unless you have some proof to that effect.

  • snowathlete January 30, 2013, 1:31 pm

    liquid sky – thanks, thats good to know. I'll look into that. Yes he is testing me for Lyme and that might be why he asked. He also asked if i had even been bitten by a tick, and i havent knowingly, but I pointed out to him that i live in an area of high lyme cases, so he has tested me for that, both PCR and Serology.

    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.

  • Shoesies January 30, 2013, 1:39 pm
    SOC

    SanDiego#1 – thanks :) Regarding the Temporomandibular I just wonder what De Meirleir thinks this has to do with ME/CFS.

    I had jaw surgery for TMJ about 30 years ago. They actually broke my jaw and rewired it into proper alignment! Worth it, from one perspective, because the misalignment was damaging my hearing. Now I wonder if it wasn't an ME/CFS thing, although I didn't (as far as I know) have ME/CFS at the time. I am hearing more and more about an association between TMJ and ME/CFS, but I can't imagine what the connection could be.[/quote]

    This is the first I have heard about a TMJ connection to ME/CFS/ I have had TMJ issues, MAJOR ones since my 20's. Hmmm…interesting.

  • Daffodil January 30, 2013, 1:39 pm

    i thought it was common knowledge that kdm partly owns redlabs and maybe even the other lab in nevada…?

  • snowathlete January 30, 2013, 1:45 pm
    Research 1st

    A case of sitting it out, unfortunately. Hopefully not until the next millennium.

    Indeed. Waiting for the next millenium might not seem so bad in 1999 but in 2013 thats a long wait. As you point you Research 1st, in the UK NHS they just drop you as soon as you have your diagnosis. Job done as far as they are concerned. Not good enough for me.

  • Valentijn January 30, 2013, 1:47 pm
    Daffodil

    i thought it was common knowledge that kdm partly owns redlabs and maybe even the other lab in nevada…?

    From what I've seen, the two labs aren't related, despite the similarities in name. The belgian one also has "N.V." after the name, which has nothing to do with "Nevada" but might add to the confusion. It also looks like Dr Meirleir said he sold his interest in the belgian RED laboratories 10 years ago. So if someone thinks he still has a financial interest, it might be wise of them to find evidence to that effect before making accusations.

  • Shoesies January 30, 2013, 2:19 pm

    Frankly, I do not care if a practitioner is profiting from my treatment as long as it is moral, legal and ethical. I have yet to hear one word about KDM that would indicate that he is not.

  • Firestormm January 30, 2013, 2:23 pm
    Valentijn

    Do you have any information suggesting he has a financial interest in R.E.D. Laboratories? I've looked online briefly, and the only indications I've seen imply he does not have an interest in it. Either way, I think it's generally better to avoid accusations of a specific conflict of interest unless you have some proof to that effect.

    I didn't want to make too big a deal out of this one Val, I was far more interested in Snow's experience and of the tests, but here:

    Friday, 18 May 2012
    Profit and Loss

    The Suhadolnik Connection

    In 1998 Robert J.Suhadolnik , with Daniel L Peterson , Paul R Cheney about, Susan E. Horvath, Nancy L Reichenbach, Karen O'Brien, Vincent Lombardi , Suzanne Welsch, Elizabeth G. Furr, Ramamurthy Charubala, and Wolfgang Pfleiderer produced a paper: BiochemicalDysregulation of the 2-5A Synthetase/RNase L Antiviral Defense Pathway inChronic Fatigue Syndrome Also in 1998 a business was incorporated in Belgium under the name of R.E.D Laboratories , the partners in which included Suhadolnik, Peterson, Charubala, Reichenbach and Pfleiderer.

    The current partner list comprises:

    Catherine Suzanne Armande Bisbal

    Pascale Josse Florence de Becker

    Isabelle Willie Luce Campine

    Ramamurthy Charubala

    Charles Vincent Taylor Herst

    Bernard Lebleu

    Kenny de Meileir

    Daniel Peterson

    Wolfgang Pfleiderer

    Nancy L Reichenbach

    Tamim Salezada

    Robert J. Suhadolnik

    ……..

    R.E.D Laboratories (Belgium) has two subsidiaries, a supplements supplier called Protea Nutraceuticals Ltd and product developer Protea Biopharma.

    Protea Nutraceuticals Ltd is listed by the Dutch Chamber of Commerce as being wholly owned by R.E.D Laboratories, with its Assignee being Marc Fremont, who is also listed as the Managing Director of Protea Biopharma (data Coface Serices) as well as being Chief Scientific Officer at R.E.D Laboratories.

    The listed address of Protea Nutraceuticals (Noordstraat 3, 4641SE Ossendrecht) is also that of Kalida B.V which is also a supplements business, the director of which, the Dutch Chamber of Commerce records as being Carine Jean Rosa de Meirleir-Muyldermans, who is apparently the spouse of Dr Kenny de Meileir.

    The domain listing of kalida.be and kalida.nl records the registrant as being Peter van Oosterhout, whose email links to the website of an engineering company at the same Noordstraat 3 address. The Share, Posted and Paid-In capital of Protea Nutraceuticals Ltd is exactly the same as for Kalida – EUR 90,000, EUR 18,000, and EUR 18,000 respectively….

    Of course I will bow to IVI on this one (and his isn't the only commentary I have read in recent times about the RED Labs businesses).

    It may be that Kenny or his wife are not taking any financial reward from the business, or the clinic, or the tests or the products used as treatments.

    There is no inference on my part that a conflict of interest is in this case a bad thing. So long as people are aware.

    It is an interesting point to discuss nonetheless but it shouldn't detract from the interest I have in Snow Athlete's experience and with what Kenny is believing is now responsible for his patients' condition.

    Thanks for the more detailed comments above Snow. I will read and digest tomorrow if I may. Am rather beat. GP appointments tend to leave me that way as I am sure you can understand.

  • Valentijn January 30, 2013, 3:01 pm

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

  • Sushi January 30, 2013, 7:15 pm

    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

  • Firestormm January 30, 2013, 11:24 pm
    Valentijn

    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 January 30, 2013, 11:56 pm

    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 :)

  • Research 1st January 31, 2013, 12:47 am

    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.

  • alexa January 31, 2013, 1:26 am

    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.

  • Valentijn January 31, 2013, 2:33 am
    Firestormm

    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.

  • Firestormm January 31, 2013, 3:51 am
    Valentijn

    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.

  • Firestormm January 31, 2013, 3:58 am

    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.

  • Valentijn January 31, 2013, 4:21 am
    Firestormm

    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"

  • Valentijn January 31, 2013, 4:39 am
    Firestormm

    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.