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Lessons from ME/CFS: Finding Meaning in the Suffering
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Netherlands CFS Treatment

Discussion in 'ME/CFS Doctors' started by Valentijn, May 27, 2011.

  1. Valentijn

    Valentijn Activity Level: 3

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    I'm an American living in the Netherlands since August 2010, and diagnosed with CFS as of two weeks ago. I just visited my huisarts (GP, PCP) for coordinating further testing/treatment, and she's trying to send me off to the lovely psychologists at Nijmeegs Kenniscentrum Chronische Vermoeidheid (Nijmegen Chronic Fatigue Knowledge Center) for a little CBT and GET.

    According to their website (via Google Translate), the "chronic fatigue" they treat has no physical causes. CBT, GET, and pacing are the only therapies used, and the it looks like the only testing done is to rule out other diseases. I was wondering if anyone has gone there and can give me any feedback on whether it was useful at all. I told my huisarts I thought it would be a waste of time, because I don't have a cognitive or behavioral problem, but a medical problem with real physical signs.

    I asked about the CFS clinic at Lelystad, which a co-worker at my volunteer work mentioned since she has a friend going there. My co-worker didn't know anything about it though, and my huisarts didn't even know it exists. Eventually I agreed to look at the Nijmegen clinic website, and she agreed to write a referral to either Nijmegen or Lelystad if I request it.

    So anyone have experience with those here? Or other CFS clinics in De Randstad area?

    Thanks,
    -Val
  2. Snow Leopard

    Snow Leopard Senior Member

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  3. richvank

    richvank Senior Member

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    Hi, all.

    Take a look at how PWCs rank the average effectiveness of GET and CBT on CureTogether.com:

    http://curetogether.com/chronic-fatigue-syndrome/treatments/

    GET is ranked the very last, (just below drinking alcohol!) and CBT is 30th from the bottom out of a total of about 170 treatments and lifestyle changes.

    By contrast, the methylation treatments are running 20th from the top, and in terms of actual treatments (excluding the helpful lifestyle changes), they are running in third place, after Low Dose Naltrexone and Yeast Treatments.

    As a native American of Dutch extraction, I continue to be disappointed at the "official" treatments recommended for ME/CFS in the Netherlands.

    Best regards,

    Rich
  4. waiting

    waiting Senior Member

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    You could google this recent paper by scientists in the Netherlands, especially Dr. Vermeulen, who is identified with the "CFS/ME and Pain Research Centre in Amsterdam, Waalstraat".

    Vermeulen R(1), Kurk R (1), Visser F (1) , Sluiter W(2), Scholte H.(3). Patients with chronic fatigue syndrome performed worse than controls in a controlled repeated exercise study despite a normal oxidative phosphorylation capacity. Journal of Translational Medicine 2010;8:93. 1CFS/ME and Pain Research Center Amsterdam, Waalstraat 25-31, 1078 BR Amsterdam, The Netherlands 2Department of Neurology, Erasmus MC University Medical Center, Rotterdam, The Netherlands 3Department of Neuroscience, Erasmus MC University Medical Center, Rotterdam, The Netherlands
  5. Valentijn

    Valentijn Activity Level: 3

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    I finally got a referral to Lelystad today, and signed up online. It looks like they do most of their communication online. I created a user account, then spent about 3 hours going through their intake questionnaire. A big chunk of it was the SF-36. It looks like now I wait for an email to set up an appointment.

    After registering, I got an automated email with an attachment. According to Google Translate, it looks like they charge 85 euros per month, in addition to what is covered by insurance. Or maybe that's just for extra various types of therapy (coping with chronic illness, pacing, physiotherapy, etc, and no CBT or GET) . I'll ask my Dutchie to read it for me :p

    My GP still thinks it's "tussen de oren" ... guess she didn't bother to look into it more when I disagreed with what she'd read from Nijmegen.
  6. Jemal

    Jemal Senior Member

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    I have no experience with them Valentijn. I have read mixed reports about them on the Dutch ME/CFS forum. They are not curing people, but nobody really is at the moment, so that's not their fault. Some patients have improved, some have remained the same. I don't think you have much to lose. I think they charge extra for the tests and therapy, but not sure.

    I am Dutch myself, by the way. Luckily my GP didn't think I was losing it mentally. He sent me to a rheumatologist and internist in a regular hospital, but they could find nothing wrong with me. They did quite a few tests, so they did put in some effort. In the end they sent me away with the first medicine of choice when faced with a patient that has fibromyalgia or ME/CFS here in the Netherlands: low dose Amitryptyline (they don't prescribe it for depression, but nerve pain and to help you sleep). I do think it has helped somewhat with the pain and fatigue.

    Anyway, my GP was willing to prescribe me antibiotics when I asked and that helped as well. And he offered to help me get tested for XMRV in Belgium. So I am pretty happy with him, he's supportive. Too bad you found one that wanted to send you to Nijmegen. My wife once suggested to me I should go there... she didn't know the whole history of that place though, she thought she was helping me :D

    Oh, I also saw a doctor from work. She made a nice report that stated my complaints probably didn't have a mental cause, so that was nice. There are still good doctors over here :D
  7. Valentijn

    Valentijn Activity Level: 3

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    I did some research on the Dutch forums and it looks like Lelystad is free (covered by basic insurance) for the intake appointment, where they also make a firm diagnosis if it's appropriate. They do little testing aside from a Sense Wear armband that measures activity, and can also record sleep problems. I haven't seen any treatments listed by their patients aside from the supplements available on their website (B12, acetly-L-carnitine, co-enzyme Q10, and a couple others). I think they may also prescribe drugs for sleeping problems. The waiting list is 2-4 month for the intake appointment with an internist. Signing up for treatment costs 85 euros per month (1,020 euros, not covered by insurance) and usually must be done for 12 months. This provides for three sessions involving consultations with a dietician, a psychologist, a physiotherapist, an occupational therapist, and a rehabilitation therapist. You can also email you case coordinator twice a month with questions for any of the above.

    The CFS center in Amsterdam costs 450 euros for the intake appointment and includes a ton of tests, from what I have heard. But they are very research oriented and may not be as helpful in treating CFS-related problems.

    It sounds like a lot of Dutch CFS patients end up going to KDM after going through Lelystad or Amsterdam. But Lelystad and Amsterdam are still useful for getting a firm Dutch diagnosis.
  8. Valentijn

    Valentijn Activity Level: 3

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    I finally got an appointment to Lelystad VermoeidheidCentrum (Lelystad Fatigue Center)! It's not til the end of September, so it looks like the official waiting time between signing up and seeing someone is about 3.5 months.

    The email says the appointment is two hours, with a load capacity scan the first hour, and a visit with an internist the 2nd hour. All medical info (anything from docs, etc) should be sent to them two weeks prior to the appointment, because they won't have time to process any new info during the appointment. I have to bring my ID, my health insurance card, and the referral from my GP.

    According to their website, the load capacity scan includes an ECG (differential electrocardiogram), HRV (heart rate variability to determine balance between sympathetic and parasympathetic), and pulmonary function test.
  9. Jemal

    Jemal Senior Member

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    Good luck Valentijn and please report back if you can. Always interested to hear if someone can help us.
  10. Anne

    Anne

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    Does anyone know anything about the CFS/ME and Pain Research Centre in Amsterdam? They seem to be doing good research!
  11. Valentijn

    Valentijn Activity Level: 3

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  12. sprankel

    sprankel

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    Yes they are doing good research :).
    If you canĀ“t pay them, you can tell them so you can make some arrangement.
    Valentijn likes this.

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