Ik spreek niet goed Nederlands. Zo ik schrijf in Engels. Overzicht: slecht plaats.
My first appointment was 26 september 2011. The nurse did "load testing", which was just me laying there for a few minutes with clamps on the wrists and ankles. I then spoke to Dr Wester, who seemed to have a good understanding of ME. I was already taking hydroxyB12, though I also tried the prescribed carnitene. The carnitene didn't help.
I had to wait 2 weeks to see the internist again, instead of it all being in one appointment. In the 2nd appointment, the internist was Dr van der Molen, who seemed far less educated in ME. She put me on amitriptyline and melatonin. They both made me much worse while I took them, which is very common for ME patients. (Hint: if the patient is very likely to have orthostatic intolerance, giving them drugs that can CAUSE hypotension is a very bad idea.) Eventually she also prescribed valerian, which didn't help, but the magnesium prescribed with it helped my stomach and muscle twitching a lot. A sleep study was also done, though by then I was sleeping fine due to finding the right supplement.
She wrote the diagnosis for me, and used the CDC definition instead of the CCC listed on the VCL website.
I wanted to get my Orthostatic Intolerance diagnosed (and hey, maybe treated!), but they didn't want to deal with it and told me to go to my huisarts. I explained to the huisarts, and showed her the CCC brochure in Dutch where in describes OI, and she said it's clearly an ME problem. She tried to get in touch with Dr van der Molen, which was impossible. So I emailed the coach to ask the coach to tell Dr van der Molen to contact my huisarts.
Eventually I got the appointment with Dr van der Molen, which apparently never happens because the only appointment form they use is the one for new patients. Dr van der Molen took my blood pressure, and said she'd refer me first to a neurologist, then to a vascular clinic, then to a KNO, then to an OI clinic. The neurologist chased me out, and sent my huisarts a somewhat nasty letter about ME patients not having problems that neurologists can help with. The vascular clinic determined I'm very healthy, despite being very overweight and very sick.
Then I emailed the coach to ask for the next referral, to the KNO (really a dizziness clinic, yay!), and the coach responded that I would not get any more referrals because they are a treatment clinic, not a research clinic. My Dutch fiance gave them a very sharp response using the sort of bureaucratic language they would understand, and eventually we got both referrals at once. Though on the phone, the coach told my fiance that he (the coach) also has ME and this testing didn't show anything for him at all.
I signed up for one year with the vermoeidheidcentrum. The therapy from ZorgTeam was confusing at first, because some therapists were telling me to do more, and some to do less. After getting the results from the SenseWear, they all started telling me to do more.
The (female) psychologist in particular would encourage to be more active, but never say how to do that when having orthostatic intolerance and a very low threshold for post-exertional malaise. I even crashed several times from the relaxation therapy, when that therapist would tell me to tense and relax muscles. The psychologist also said "you are not a patient!" and "doctors cannot help you!" when I said I was getting referrals for orthostatic intolerance. In one of the first visits she suggested getting pregnant.
This "je bent geen patient" line was familiar because it had been discussed on the PhoenixRising.me forum, and I found it in the Dutch CBT manual for passive patients, written by our good friends at Nijmegen. In retrospect, they believed I was an "active" patient because I was crashing so much until the SenseWear said I was "passive" when I was being very careful about pacing. So that's why I got the abuse from the psychologist, and even the ergotherapeut was telling me not to cut back on activity while I was still crashing frequently, though the ergotherapeut did relent when my condition steadily deteriorated.
The active/passive patient dichotomy assumes that our behavior causes us to either push too hard or to be lazy and do nothing. If we are not active, it must be because we are passive. There is no recognition of different severity of ME for different patients. Passive patients should also have financial and physical support cut off, to help us recover by seeing that we can be independent Needless to say, they were not happy when I got a mobility scooter.
I hadn't been able to go to the supermarket for over 6 months, but any mobility aid was still viewed by the psychologist as a bad thing.
She cancelled the rest of our appointments when it became clear I would not be cured by her "therapy". Last week we cancelled the rest of my appointments due to crashing too much and the annoyance of listening to their crap. (And an ME center with STAIRS? I suppose that should have told me everything I needed to know about them at the very beginning.)
They said they would contact us, and they did today. But not about me leaving. Instead they emailed to say that I cannot have "vermoeidheid" because I am overweight. They didn't even have the decency to call in "chronishe vermoeidheid"
But on the plus side ... maybe I get a full refund now, since they're saying they made the mistake in diagnosing me (and therefore made a mistake in sending me to a fatigue center). Though I will not be surprised if I am invited to their Obesity Clinic. Yes, the same internist and some other familiar faces are involved in that one too.