Problems with Prof De Meirleir's clinic

I travelled from London to Brussels in mid November 2011 to see Prof De Meirleir. I did it with an open mind as I know some have found him to be very good, but others not. I finally received the tests and treatment regime details three months later. He's proposing amoxicillin, b12, probiotics, vitamin c, 4ME, and then in a couple of months to start gcmaf. That sounds ok to me. I'm certainly keen to try gcmaf and see if it helps. But this is where the problems begin...

I emailed "Kalida" who are apparently the supplier of 4ME. I had no idea what it was (no-one bothered to tell me), but I gather it's basically Nexavir. I expressed my concern about injecting an expensive substance from a company that apparently has no telephone, web site, or address, and operates through a Hotmail account (!). I've emailed them several times, but they ignore my emails. I've asked De Meirleir's clinic for help, and they have just shrugged their shoulders and referred me back to Kalida. I don't know how important this 4ME is to the treatment regime, but I will not be taken for a ride.

I was sent prescriptions for b12 and amoxicillin. My local pharmacy couldn't understand the belgian prescription, but said in any case they don't do enteric coated amoxicillin, so they can't fulfil it. I contacted De Meirleir's clinic, and it's taken them several weeks to reply to my email (after chasing weekly for about 4 weeks), and they just told me my pharmacy "should" be able to provide them. Obviously this doesn't help. It seems I might now have a source for the B12.

I'm so fed up. I've spent so much money travelling to Belgium, the tests, and then I'm simply sent a pile of papers and left to get on with it, with no support whatsoever.

Last year I met Dr Enlander and I decided to go to Belgium as it's closer than New York, but I'm starting to think I've made a bad choice. Dr Enlander replies to emails from people who aren't his patients, but it seems De Meirleir doesn't even reply to emails from people who ARE his patients.

Is mine a typical experience? Can anyone offer any suggestions about how I might proceed? If anyone is taking 4ME from Kalida I'd be reassured to know it is working out ok. Does anyone know if Dr Enlander has any patients in the UK on 4ME/Nexavir/GcMAF?

Ollie

Ollie, I have no direct experience of his clinic, but I did spend a long time working in the health service, and I can tell you that what you describe is completely unacceptable as a way to practice medicine. Where is the monitoring of the patient's progress, care or support in your experience? You deserve better.

There are a lot of people in Belgium and The Netherlands taking 4ME. It's the cheaper version of Nexavir and is on the market since February I guess. 90 a bottle instead of 150. I 'm not taking 4ME, but there are topics about it on the Flemish/Dutch forum. The communication with the company isn't really great but they deliver... The're have been remarks too about the hotmail adress and the unability to find them on the internet, but patients are injecting it. (and no one died yet )

what's the exact name of the AB, or is it just an enteric coated amoxicillin? Maybe try to contact the people from the site below and see if they are selling it.

http://www.stasegem.be/index.php?ukey=auxpage_2

By experience, I have noticed that some drugs available on the continent are not available in the UK. You might want to phone several pharmacists to see if they can get it or at least if they are willing to contact their suppliers.

For the amoxicillin you need.. can you try an online pharmacy if your local one hasnt got exactly what you are after?
......

As far as the other thing goes.. if you are worried about it.. keep doing what you are doing now and speak to other ME patients where you are and find out if they use it and how its going for them. If you hear responses mostly saying that is where they are getting it from and its helping them.. I'd then try to lay fears to rest. What really matters is if its helping people or not.
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Sounds like De Meirleir may be biting more then he can chew one could say if he cant keep up with his own patients.

I know he does a lot of work worldwide..including going overseas doing ME talks and helping doctors/ME specialists in other countries with their ME patients. I once went to hear one of his talks when he was over here in Australia and helping educate both people and doctors too over here in ME.

Seems the world well known ME specialists are either over charging or over working.

Hi,

I am belgian suffering from ME. I take for nearly a year Nexavir and now 4ME. For me it works. I have no problems with Kalida. They delivered quickly and the price now is "cheaper" than before.
I think Nexavir help me a lot, GCMAF also. But it always depends on people symptoms.
I am really sorry to hear that you have a bad experience.
i know that it is difficult to have the medication in England... One of my relative ( who also suffering from ME) buy all his medication in belgium and came back in England with them... Sometimes I do it for him...

If you want more information on my experience, PM me.

Have a good day

Clodomir

Re a/biotics try Dennis the Chemist online or give them a ring they will try to get anything for you and if you need to change it to the UK name the clinic are really good, they will fax the prescription straight to the chemist. It really is a pain, but since the EU stopped the Belgian pharmacies supplying Uk residents (why???!!) it has become hard work to get a lot of the prescriptions filled, best way really is next time, get it whilst you are there, most UK pharmacists look at an EU prescription likes its an alien, not so the above. Re B12 you won't get higher dose than 2ml a week thats the maximum the UK authorities will allow the chemist to supply so even if your prescription is for 10ml they won't give it to you. I found a US pharmacy who will supply the 100ml bottles but never went ahead as I've been too bad to continue with any supplement. You just have to hunt around, these legislations are not to help patients thats for sure. Good luck.

Ollie,
It's much easier if you could buy what you need directly in Belgium.

Hey Olli,

I am a patient of KDM from Germany and he always sends a prescription for a belgian pharmacy with the treatment plan. Then I scan the prescription, send it via E-mail to the pharmacy and they send me everything thats on the Prescription. Takes 2 weeks and I have all the medication included coated Amoxillin.

Henk

Can someone please share email for kalida? I would like to buy 4ME

@penthere This is the email address I have for Kalida: carine.kalida@hotmail.com

The clinic have put me in touch with a company that can supply the B12, so that seems ok.

@maryb Many thanks for telling me about Dennis. I've sent them copies of the scrips, and hopefully they can help.

@sianrecovery Yes, I agree. I previously went to the Breakspear and had a bad experience there also (first business, THEN healthcare) but this De Meirleir experience is really bad. Having said that if his regime works, I'd agree to put up with it. I've been ill 13yrs so I'm fairly used to making pragmatic decisions

I'm still very concerned about 4ME. They ignore any questions by email about who makes it, where it comes from, what's in it, etc. But I suspect if I emailed and made an order they'd respond quickly! Those are the classic signs of a scam, but even aside from wasting money, my main concern is to make sure I am injecting something from a safe source, and I do not have that information. I suppose it comes down to trusting De Meirleir's judgement in the supplier he chose, but it's hard to trust someone who treats his patients with such a lack of care.

Many thanks to everyone for sharing experiences. It's pleasing to hear stories of some of these treatments having positive effects.

Problems in my eyes:

1) His prescriptions work very well in Europe. You can bring them to your local pharmacy or fill them online through a Belgian pharmacy who send the medication to your country. This works in Europe but probably not around the world.
2) There were several points of time where KDM claimed that they found the cause of CFS (H2S, XMRV etc.) but they were wrong.
3) GcMAf, Nexavir etc. work very well for some, for others they don't work at all and for others they do harm. So everyone has to decide for himself if he spends the money. Even is 4ME is fraud, we cannot do anything against it until it's proven and someone goes to court.
4) In my eyes it's not KDMs job to win a price in customer service. Everyone has his/her local doctor. KDM runs the tests and makes a treatment plan. He fills out prescriptions. If you live in country XY and you cannot use his prescriptions that's clearly your country's problem and not his. The only reason why KDM can see so many patients is because he has clear timetables. I don't want him to waste time by talking to certain patients for one hour. The talking leads to longer waiting times and has no use for the rest of us.

Do I think that the situation is OK? No!

The problem with CFS/ME is that there aren't many specialists. It's funny that most specialists (KDM, AW etc.) came to this field probably only because they had children/relatives who became ill with CFS/ME. So what's the consequence? Every ME/CFS doctor is a kind of monopolist. He can treat his/her patients as he/she wants. Most of them treat their patients a lot better than normal doctors do. But in the end, even if a good ME/CFS doctor treats his patients bad, there is nothing I can do about it. As long as he is monopolist he can do whatever he wants. You can choose yourself if you visit him or not but as long as this illness has no clear diagnostic marker and is kept in the shadow by government and media, we will suffer the consequences of monopolistic supply.

@Waverunner I think you're defending the indefensible. My issue is more with the clinic than with KDM himself. The support I need is administrative and operational (where do I get treatments, etc) not advice from the doctor. I'm sure his nursing and administration team could provide what I need, but for whatever reason they're not.

Unfortunately I don't have a good doctor here in the UK, so I'm on my own trying to work out what to do with the pile of papers KDM has sent me.

I also don't agree he can treat people how he likes. Even if he has a treatment that might work, it's still up to me whether I use the clinic or not. We still have choices, and there are doctors who are more supportive of their patients. With hindsight I wish I'd started with Dr Enlander when he was in London last summer, but we live and learn.

My response wasn't a reply to the thread start. It was more a general statement towards what others and I have experienced with KDM. I know that the whole administration of his practice is not very service oriented but more service orientation costs more money and patients probably would have to pay for money then. In the end it comes down to what I said: monopoly. You can visit Dr. Enlander of course but there aren't much alternatives, especially when it comes down to treatment. KDM uses all treatment options available and has access to treatments that other doctors do not have access to.

pharmacy in Belgium+ KDM

HI Henk and everybody.

My brother has been suffering from CFS for 4 years now. Lately he has become completly bedriden and cannot tolarate light or noise
He has been prescribed Azithromycin ,vancomycin and Clarithromycin- all of them enteric coated. They are not available in my country but I have no problem flying to Belgium to get them.
Can you may be help me with contact info of pharmacies in Belgium in which enteric coated is available?
Also I would like to try and do the tests which KDM suggests, so that hopefully someday when he is able, we can go see him . Do you know which blood test he is testing?

Thank you for your help.
LoLE

I always say that if its expensive and unsupported by real, published, credible science, tread with caution unless you like to spend money

Have you tried ringing the clinic and asking to speak to one of his staff? KDM gets hundreds of emails a day. Email is not a good way to get info from him/his clinic. I haven't even *tried* to email him for this reason.

Agree 100% Waverunner.

He can treat people how he likes. But equally you have the right to choose another doctor. I would go with Enlander. I think he would suit your needs more.

Ollie, you are not alone. I know many patients who have been to see Dr De Meirleir and they are having a really hard time dealing with his clinic (it's not just him who doesn't answer e-mails, his secretary doesn't either... once she said to a patient who was chasing something via the phone: "oh, my inbox is just so full I don't even look at it anymore". True story.)

On top of this the doctor himself seems to not always know which patient he is dealing with, for example he might recommend a treatment one day and then the next time say the opposite, with no good explanation.

In spite of this many patients struggle to do his protocol and I've been following quite a few who have been on it for years. I've seen no dramatic improvements, though. I know they happen, but not in this group (I have seen the opposite: people getting worse). Seems like a bit of a lottery if you are helped or not.

But KDM probably knows more about the complexities of ME/CFS than most.