Help! in english

[impatient]

Hello there, I hope you can help me, sorry about the english, I moved to the Netherlands only recently and I cannot write in Dutch.

I have been severely affected by ME/CVS for several years, then my health improved quite a bit thanks to years of rest and meditation, and I moved here to the Netherlands. Now it seems that I might go back to being homebound, at least from time to time, I need to ask you:

are there any associations of patients that provide assistance at home? My idea was to volunteer in the periods when I am healthier, and pray I won't need it myself.

and: can you suggest a good doctor in Utrecht that understands CFS? I had a very disagreeable telephone conversation with a doctor in Nijmegen, apart from that I don't know anybody.

Thank you for reading!

[tanto]

Hi impatient,

Can you read in Dutch?
However, I will try my best in English.

I am sorry you are homebound again.

Maybe you can inform on Paul van Meerendonk: http://www.biologischmedischcentrumbmc.nl/

He had lots of experience with CFS-patients. There are some patients of his on this forum.

I wish you lots of succes,

Tanto

[annemoontje]

Dear Impatient,

Welcome here as well as in the Netherlands! I'm so sorry to read you're homebound again.

are there any associations of patients that provide assistance at home? My idea was to volunteer in the periods when I am healthier, and pray I won't need it myself.

Although I really admire your willingness to help others in better times while you're sick yourself, I must urge you not to do so. This will guarantee a set back and possibly permanent decline or even becomming bedridden. Please, the best way to help is to go to Paul van Meerendonk as Tanto suggested. He's very capable and understanding. And although he hasn't got the answer to ME/CFS, no one has, he has helped many a long way.

I hope he can help you some and preferably a lot! For questions, also about other things in the Netherlands, please, don't hessitate to ask!!
Annemoontje

[bloemetje]

Hello Impatient! Welcome on this forum. Sure, we would like to help you out. It has benifits for us as well: we can train our brains with talking and typing in English So don't hesitate to ask questions.

For now I would think that Paul van Meerendonk is indeed the best option, even though I haven't been there. The other options are the centers in Lelystad and Amsterdam, but both have a long waitinglist. You could consider being added to that list, just so you can make your mind up in the mean time. But Amsterdam is closed untill next Monday (July 14th), so don't bother trying to call them before that date.

Good luck with all! With kind regards, Bloemetje

[Eressea]

Well, first: welcome to the Netherlands, and welcome to this forum! I'm afraid the Netherlands isn't the best country to be when you've got ME/CFS. Nijmegen is the worst place to be really, we call them the Nijmegen Mafia (or inbetween-the-ears mafia).

By the way, I moved your topic to "ME(cvs)/FM Algemeen" (ME(cfs)/FM General), the helpdesk is meant for people with a techinical problem

I know another woman with CFS who recently moved to the Netherlands (I assume it isn't you, she doesn't live near Utrecht), who's had the same problems finding doctors and good care etc. If you want to talk things over with her, I can get you in touch with her.

I'd suggest Paul van Meerendonk too, I think he's your only option. If you have sleeping problems, you might want to consider going to the Slaappoli (sleeping clinic) in Veenendaal/Ede, which takes 20 minutes with the train to get there (if you go to Veenendaal, it's a 1-2 minute walk from the train - if that's too much I can drive you from the train station). Though I wouldn't advise you to expect much help there, if you're lucky, you'll get 10 minutes with the doctor, and then it's waiting to see if the melatonin helps you. The good thing about the Slaappoli, is that it's free, you don't need to pay money, it's normal healthcare. To get there, you'll need to contact your MD. For Meerendonk, there are a lot of (alternative) medicine and research you need to pay, and I'm not sure whether a consult costs money, too.

You've also got De Meirleir, in Belgium, he's really, really good and worldwide known with ME patients. But he's expensive, and his medicine is expensive too, and health insurance hardly ever cover it... And then there's the problem of getting to Belgium. From Utrecht Centraal it is accesible by train, but it drains your energy.

are there any associations of patients that provide assistance at home? My idea was to volunteer in the periods when I am healthier, and pray I won't need it myself.

No, I'm afraid there isn't anyone who does something like that... We've got a little problem with patient associations, the biggest (ME Stichting) likes CBT and Nijmegen a lot, so that's no use, we've got the Steungroep (Support Groep), they assist in things like getting benefits, going to court etc. The ME/CVS Vereniging is a very small group that stands for a biomedical cause of CFS, but there aren't many members or assistence like that.


By the way, I see we've got a lot of English speaking people here Wow

And Bloem, I know you long for the summer, but I think July is meant to be February

[bloemetje]

Lol! I am known for my bloopers, so I am glad you smiled today thanks to me. It means that at least in that tiny way I was useful and successful today

[louisa]

Hello impatient,

Welcome to this forum!

Kind regards, Louisa
moderator ME-gids.net

[lano]

welcome to the forum and the netherlands offcourse. If you have any questions don't hesitate to ask, most people here speak pretty good english, and everyone is always willing to help.

[ernesto]

Hello impatient,

Welcome to this forum.
Maybe it's possible to use GoogleChrome, then you can click on translate webpage, so you can read all the subjects in english.

[Gast]

hello impatient,

welcome to this forum!

[impatient]

Oh, so many replies! (delight) thank you so much, I am trying to answer individually, but first thank you for the doctor's name, will go for sure. I can read Dutch a little bit, but writing is still out of the question. De Merlier I knew before, but his therapy is immunological, while I have mostly neurological symptoms, so I prefer to focus in another direction. And thank you for the information about the "politics" here, Njimegen left me a really bad impression, I am glad you agree. Well, groetjes allemaal!

[impatient]

*I know another woman with CFS who recently moved to the Netherlands (I assume it isn't you, she doesn't live near Utrecht), who's had the same problems finding doctors and good care etc. If you want to talk things over with her, I can get you in touch with her.*

Eressea, could you please send me the contact of your friend? It would be so nice to know somebody else who has to deal with this in a foreign country..

[impatient]

Dear Impatient,

Although I really admire your willingness to help others in better times while you're sick yourself, I must urge you not to do so. This will guarantee a set back and possibly permanent decline or even becomming bedridden.
Annemoontje

Dear Annemoontje, thank you, in fact I meant "when I will be better" - until two months ago I could walk and do things without almost any limits for one year and a half, so I wish I thought about it before so yes: in a hopefully not so far future (some months? fingers crossed) Are you very affected yourself? all the best

[annemoontje]

Dear Annemoontje, thank you, in fact I meant "when I will be better" - until two months ago I could walk and do things without almost any limits for one year and a half, so I wish I thought about it before Sad so yes: in a hopefully not so far future Smile (some months? fingers crossed) Are you very affected yourself? all the best

Ah, then I misunderstood ! I recognize your optimism and love your attitude, although you might want to be carefull with thinking in months. I did that for years and only got worse and just since last year accept that I really don't know when of even if I'll ever be good enough for a somewhat normal life. Not to scare you, but to warn you, maybe it doesn't apply to you, you never know. I'm pretty affected, I'm housebound, lie on the sofa all day and depend on almost everything on my boyfriend; all my food, drinks, often help with drying myself after showering, max 3x/wk, and dressing, very often with going to bed and undressing. On most days I can just go to the toilet myself but on a lot of them not. On some days I also need to be fed by my boyfriend and is chewing already a great challenge and effort.. Luckily he works at home most of the time and is able to come home on mornings or days he does work at the office anytime neccessary.

About DML: he treats patients based on their abnormalities. Since ME/CFS is a neuro-immunedisease the immunesystem is an important part and is what makes a lot of his patients recover greatly and go back to work, school, life. Not everyone though, there's a group of appr. 30% he doesn't get much result in functioning, but can he limit the amount of decline and relieve some of the symptoms or their impact. The neurological part is mostly a result of the various problems of the immunesystem. ME/CFS is not curable or treatable as a disease, hopefully htis changes soon with the discoveries and developments since 2009

[Eressea]

Impatient, I have asked my friend if I may give you her email address, I'll PB you when/if she says yes