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.


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)


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.


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.


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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'Australian Biologics' testing services do PCR testing for borrelia whole blood/urine/serum, as well as mycoplasmas and chlamydia.

My doctor in Perth,WA uses- 'Infectolab' (great name), in Germany, also for borrelia, erlichia, babesia, bartonella, ricketssiae,etc, and a host of immune tests , CD3,CD57, CD4, CD8 and so on.

Just in case anyone in Oz feels like they are living in a backwater, banjo loving, black pit post appocalyptic wasteland of medical nothingness... there's some options for you :thumbsup:
Thanks beaverfury.
there is a conference in Sydney on Tick/Lyme diseases
This includes the CEO of Infectolab
and the chief medical officer of Australia will be attending.
Hopefully this will be a big leap forward.
So re: KDM. It appears on balance that so far people are having positive experiences with him. I would say that as long as people understand that when seeing any doctor for ME CFS there is little they can do to radically make people better (unless they have an undiagnosed infection), then most people won't be disappointed, no matter which doctor they see.

As someone with no money left from spending it all on treatments that never worked in the past, I can appreciate it is frustrating and sometimes very disheartening to pin your hopes on something you expect you will find useful, and it doesn't quite turn out that way. This is part of the pit falls of going on a private mission to try and discover the many avenues of if, why, how, when, maybe about ME CFS. In medicine there are literally limitless avenues to walk and certainly if you read CFS research, literally hundreds of abnormalities to test yourself for. If we tested for everything not only would we be broke, but we'd have no blood left.....well, even less than usual. :cool:

Certainly in Europe and the UK, seeing KDM seems to be the only viable option at the moment which is difficult for those severely affected or for those who don't have the actual physical support of getting on a train which must take quite a bit of cognitive skill to make sure you travel to the right country when you have ME CFS and don't end up in a Ski chalet in the French Alps on a TGV. :lol:

I'm a fan of KDM I guess, any researcher with new ideas too. I like research as it gives the possibility of trying to join the dots on a seemingly impossible to solve puzzle, our illness. In the UK and also if you ask others, Australia especially, there are few to no laboratories that offer specialist tests.

KDM must be seeing so many people, poor guy. I wish there was a UK clone of KDM but alas Dr Kerr the gene specialist couldn't be accessed privately and has now left London entirely it seems? So KDM it is. Not to be confused with KLM - a Dutch airline company.

From what I can see it seems GC-Maf is the main treatment of choice at the moment, as well as treating infections.
I've always been skeptical, because all the infections I test for are negative. Now I hear though that maybe it's not just EBV, CMV and Herpes class infections but tick borne/bacterial infections that ME CFS can be harbouring also. (Borrelia, Brucella, Ricketssia).

Does anyone find this in their experience to be a rare finding in themselves when KDM tests you for these? I'm biased as I've never had the tests so I naturally cannot imagine myself to be infected with pathogens I have no idea about. Maybe we're often infected with these more rare infections and simply don't know. Which would make sense if we don't look for them int he doctor's office and stick to viruses only.
I was diagnosed with Brucella by De Meirler and currently on antibiotics, not sure how this will affect my disease in the long run, but he told me that many of his patients had other pathogens
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? 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.
I think Pubmed does not list all "journals/science papers" The whole science publication thing is not necessarily clear cut. and not all that is published is true. Even Nature has science that is fraudulent, at least one famous case in physical science.
Thanks for your contributions.
Obviously it is important to consider everything.
This is what makes PR a great site.
Bacteria/viruses etc have been around billions of years or so.
They have been around the block a couple of times.
Modern science has been around 20 years or so (OK maybe about100 if you include antibiotics)
So we have a bit of catching up to do.
Hello Sushi, yes. I am not informed at all about these class of infections and wondered if people who did test positive in Europe were surprised and did they think this quite unusual, e.g did they think they'd be immune to them because of their label of ME CFS and that they were outside the US.

I've never met anyone in Europe myself with ME CFS who says the discovered Borellia,Barteonella etc etc but at the same time I would imagine few people get offered these tests by physicians who believe them to be associated with something like Lyme disease rather than ME CFS? This is what I'm lead to believe when I've asked in the past in the UK for these tests, that Lyme and other bugs are an American problem and not a European one.

I saw you can get these tested at redlabs, PCR as well as serology. Do you think it's probably best to go for PCR first? There seems to be a problem with selecting serology (antibodies) before PCR first because if negative we might wrong assume we aren't infected. Ideally it would be nice if all of these infections could be cultured, but I imagine even if so these aren't available to the public because the demand would be low.
How about a Sydney woman, breast cancer, 20 years ill with something undiagnosed. Diagnosed as having Sarcoidosis some time ago. 2 weeks ago tests came back as having Lyme. Of course the Australian Govt and Drs have "so called proof" that Lyme is not here. Tests
I was diagnosed with Brucella by De Meirler and currently on antibiotics, not sure how this will affect my disease in the long run, but he told me that many of his patients had other pathogens
Am on antiobitics for bartonella myself at De Meirleir. And indeed loads of people seem to have pathogens.
Has anyone read what Dr Jamie Deckoff-Jones had to say on her latest? Pertinent perhaps though only an opinion and one borne through bitter experience. I haven't accessed the Medscape article myself yet:

Having learned the hard lessons personally with respect to unvalidated tests from small labs with special interests, I came across this on Medscape and think it needs to be shared: Lyme Culture Test Causes Uproar.

The link works if you have an account, but here is the first paragraph and exerpts of the article about a culture for Borrelia burgdorferi from a lab called Advanced Laboratory Services:

A new chapter in the Lyme disease controversy opened in September 2011 when Advanced Laboratory Services, Inc, announced the commercial availability of a new culture test for Borrelia burgdorferi. Some Lyme patient advocacy groups and physicians began encouraging patients to have the $595 test, but others are concerned about the early commercialization of the still-unvalidated test. This concern may result in changes to how the US Food and Drug Administration (FDA) regulates so-called “homebrew” or laboratory-developed tests (LDTs)…​
Soon after Advanced Laboratory Services’ initial public announcements about the new culture test, emails and public statements attributed to Dr. Burrascano began appearing on Lyme-related Internet sites, including comments that the culture test was approximately 94% sensitive and 100% specific.​
Dr. Burrascano told Medscape Medical News that the validity of the culture test was established using blood samples provided by physicians and that the identity of Borrelia was confirmed by its ability to grow in Borrelia-specific media, by its characteristic appearance on darkfield microscopy, by reacting to published Borrelia-specific polyclonal and monoclonal immunostains, by DNA polymerase chain reaction (PCR) at 2 different loci, and by direct DNA sequencing. These data are so far unpublished…​
And here is the disclosure statement at the end of the article:​
Dr. Burrascano has disclosed no financial interest in the laboratory, in the Borrelia culture, or in any intellectual property and receives no commissions from the tests. Dr. Burrascano is senior vice president of medical affairs and medical director for Advanced Research Corporation, a contract research organization with the same president and corporate address as Advanced Laboratory Services, Inc. Dr. Mead And Dr. Green have disclosed no relevant financial relationships.​
Oy vey. Here we go again. Another unvalidated test to justify bad treatment. What’s wrong with the unvalidated tests they’ve been using all along? The ones that are almost never negative for various tick borne diseases?

And this, hitting the presses coincident with the WPI promoting Dr. De Meirleir’s lecture, yet another doctor with a history of profiting from unvalidated lab tests. I think I’ll stop now, so my blood pressure stays down, and end on a positive note.
My doctor ordered this "free test" from Advanced Lab Services, and I think it's a marketing scam. The test kit is free, but when you send it in you have to pay $595 by credit card. What's completely free is enrollment in some trial they're going to set up in the future. but they don't even have an enrollment questionnaire yet.

It took a half hour on the phone for my doctor's office to get this information out of the lab people. They are being exceedingly not-transparent.

Not sure this is very relevant to the topic to be honest. Culturing Borrelia is nottiriously difficult and there are lots of people trying to do it. It's controversial in part because not everyone agrees on whether or not the current tests are reliable or not. The FDA do say that diagnosis should be clinical, not based on the existing FDA approved tests though which suggests the FDA don't consider them entirely reliable.

Mayb this lab has a good test, maybe it doesn't, but eventually a culture test from someone will likely get FDa approved and be more reliable. But as we know too well, getting FdA approval is not quick, cheap, or straightforward. At the moment, if you buy a test that isnt FDA approved then perhaps you don't know what you're getting but that doesn't mean it's a scam. Though certainly i would be wary if like Madie you cant get some straight answers when you ask the lab. As I said in my article though De Meirleirs staff were very forthcoming with info when I asked for it, which sounds completely in contrast with this other lab selling this Borrelia test. I'm happy that labs are developing and making tests available though, else your options are even fewer.

As for the bit about de meirleir at the end, I can understand the view, but he wasn't the only one to think XMRV was true was he! People wanted to buy tests for it before it was confirmed, and that was their choice. Personally, I didn't get one because I wasn't convinced there was enough evidence to justify the cost. People should probably be cautious in the same way regarding Lyme tests though I can understand with the lack of good alternatives, why people suspecting Borrelia might still decide, knowing the risks, to buy such a test despite the lack of FDA approval.
From Infectolab in Germany
fresh Borrelia infections in Germany in 2009:- around 800.000 new cases. So if around 10 % get chronic statistically, we find around 80.000 chronic Lyme cases just in Germany.
see also
Don Lewis in Melbourne has 40 Lyme people, newly diagnosed.
He thinks that the immune system with Lyme people was low before the Lyme set up shop.
So he is taking a particular protocol. It is early days.
(it seems many people made their own rash treatment descisions and end up herxing badly??)
Dr. Joseph James Burrascano, Jr is an ILAD's doctor and not a IDSA doctor, which would call into question the diagnostic criteria of Lyme disease used for this test as well as the recognition of chronic Lyme disease which does not have any scientific basis. ILAD's doctorst often prescribe dangerous long standing antibiotic treatment.
When people who have been treated for Lyme disease recover but later come down with its symptoms again, is the illness a relapse or a new infection?

The question has lingered for years. Now, a new study finds that repeat symptoms are from new infections, not from relapses.

The results challenge the notion, strongly held by some patients and advocacy groups, that Lyme disease, a bacterial infection, has a tendency to resist the usual antibiotic treatment and turn into a chronic illness that requires months or even years of antibiotic therapy.

The conclusion that new symptoms come from new infections is based on genetically fingerprinting the Lyme bacteria in people who have had the illness more than once, and finding that the fingerprints do not match. The result means that different episodes of Lyme in each patient were caused by different strains of the bacteria, and could not have been relapse
The IDSA guidelines were the subject of an antitrust investigation in 2006 by Connecticut’s then attorney general and current U.S. Sen. Richard Blumenthal, who examined whether the authors had conflicts of interest and failed to consider divergent medical opinions.
As part of an agreement to end the probe, IDSA voluntarily agreed to a review of the guidelines by an independent scientific panel. In 2010, the group reported that no changes needed to be made, that there is no convincing evidence for the existence of chronic Lyme infection, and that long-term antibiotic treatment of what some doctors describe as “chronic Lyme disease” is unproven and unwarranted.
The Centers for Disease Control and Prevention stands by the IDSA guidelines. Dr. Paul Mead, chief of epidemiology and surveillance activity at the CDC’s bacterial-diseases branch, tells the Health Blog that could change if more contrary evidence emerges.
One explanation for what is described as chronic Lyme may simply be “post-infectious complications,” he says. Studies of long-term antibiotic treatment are mixed, “but overall don’t demonstrate that people on the antibiotics do better than those with a placebo,” Mead says.

ETA. I thought we had a separate Lyme board but it looks like Lyme topics are under Other Health News and Research.
This question of relapse versus new infection then seems to fit Dr Lewis's opinion that the immune system is not working properly before the tick bites. Also could be that there is some immune suppression by existing Lyme which allows another strain to infect??
How do we know that they weren't infected with multiple strains in a single event?
I think both of the above hypothesis are possibly and are certainly food for thought but need to look into these questions more thoroughly to see how probably they are. I need to find some sources and would appreciate any.

Thanks in advance.
snowathlete, I thought this was a marketing scam, not that the test is bad. Sorry if I took this thread in the wrong direction.
madietodd, no worries, no need to appologise. I think the forum could do with a Lyme/Tickborne pathogens section too.
hi all. i heard dr. demeirleir tests for 67 different types of bacteria. would it be possible to find out which ones so one may be able to have testing done in north america?

someone implied to me that for severe neuro cases like mine, he might prefer IV antibiotics (if i test positive for some bacteria)...however, i will not be able to afford IV. i see that many of you were given antibiotics. did dr. demeirleir say anything about IV being better?

thanks :)
can someone tell me if they have been helped with the antibiotcs Dr. DeMeirleir prescribed? Is he prescribing for LPS / bacterial translocation from the gut, or is it always for Bartonella / Borellia? I wish I could talk to someone who knows this stuff! :-/
Is IV just to get more of the actual drug into the blood or is the drug used different? I don't know under what scenario DeMeirleir does this I'm afraid but hopefully someone else does and will reply.