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Does anybody have good experiences with a physician in the Netherlands who is experienced with CFS patients? The doctors that I have seen so far haven't been very helpful.
Physician in the Netherlands
- Thread starter cureminded
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Marlène
Senior Member
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- Edegem, Belgium
Have your tried Dr Musarella in Zeist?
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No, I haven't. Is he/she an Internist? What's your experience there? Have you had any tests that aren't done regularly or treatments that were helpful? Thanks for your reply!
Marlène
Senior Member
- Messages
- 443
- Location
- Edegem, Belgium
You can check for references at www.mecvs.net
Some people share their experiences.
He's an endocrinologist but thinking out of the box as far as I'm informed with very good results.
Some people share their experiences.
He's an endocrinologist but thinking out of the box as far as I'm informed with very good results.
I see Dr van der Molen-Pogoda at the fatigue clinic in Lelystad. It's moderately helpful in getting referrals, and some basic stuff like sleep meds that make ME worse. She also had me do a sleep study, but it's taking a very long time for me to get a referral to an orthostatic specialist.
I also enrolled in their 12 month program at the clinic, which has been a bit helpful for learning how to pace and adapt to being disabled, but the psychologist there practices Nijmegen-style CBT - "you are not patient, you must become more active", etcetera.
I also enrolled in their 12 month program at the clinic, which has been a bit helpful for learning how to pace and adapt to being disabled, but the psychologist there practices Nijmegen-style CBT - "you are not patient, you must become more active", etcetera.
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Thanks Valentijn,
I've seen Dr van der Molen a short while ago. I was a bit disappointed to be honest. She didn't strike me as someone with a lot of expertise on CFS. Not sure if I am going to start the program. It all seems quite expensive and as you mentioned regarding the psychologist, I do wonder if the trouble and the cost is worth the result. I realize that I need to start pacing and adapting, but I'd like to try to fight the thing as well. I'm lookin into the antivirals. The therapy in Lelystad seems based on accepting and learning to deal with it except maybe for trying the L-Carnitine and B12. And i haven't even started fighting it yet....
Have you tried the L-Carnitine? I just started on the B12.
Cheers,
Cureminded
I've seen Dr van der Molen a short while ago. I was a bit disappointed to be honest. She didn't strike me as someone with a lot of expertise on CFS. Not sure if I am going to start the program. It all seems quite expensive and as you mentioned regarding the psychologist, I do wonder if the trouble and the cost is worth the result. I realize that I need to start pacing and adapting, but I'd like to try to fight the thing as well. I'm lookin into the antivirals. The therapy in Lelystad seems based on accepting and learning to deal with it except maybe for trying the L-Carnitine and B12. And i haven't even started fighting it yet....
Have you tried the L-Carnitine? I just started on the B12.
Cheers,
Cureminded
The Carnitine and B12 seem to help a bit. But yeah, Dr van der Molen really knows very little about ME I think. They also deal with burnout and basic fatigue, which probably doesn't help. You can probably get all the same pacing advice here, and save the money for something useful - I wish I had 
I take back the part about being moderately helpful in getting referrals. For my OI problems she put together a plan to see different specialists to get it diagnosed. 1) neurologist (wouldn't examine me), 2) vascular specialist (I'm quite healthy, despite being obese and very sick), 3) ENT/KNO, and 4) Orthostatic Specialist.
Now that I finished with the neurologist and vascular specialist, we emailed the clinic to ask about step 3, and she's sending the referral BUT says that's it. No more referrals, no step 4. Which is pissing me off immensely because the vascular specialist and KNO are totally pointless and I've only been going along with her stupid-ass plan so I can get to the OI specialist eventually.
"We are a treatment clinic, not a research clinic." So why the hell can't they TREAT my OI, seeing as it's a very common problem with ME, and even discussed at length in the CCC that they purport to use for diagnosis? Dealing with Lelystad has just been a huge waste of time and money.
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Hi Valentijn,
That really sucks. I'm sorry to hear this. I was surprised that you need her for such referrals. Sounds like you just need a helpful GP. How's yours? If you don't have a good one, I would try to ask around until you find one. That makes all the difference.
The referral that the internist you mentioned wrote for my neurologist btw was rediclously short. It was one word. not very professional.
My GP might be a bit better now. During the initial fight between her and the ME doctor about who has to deal with my OI (ME doctor "lost" and had to deal with it) I gave her a copy of the CCC with the parts relevant to OI highlighted. I think she might have actually read it, because at the next appointment she was comparing ME to MS, as far as being dismissed by some doctors. She also went out of her way to hint that I should ask her what a neurologist had said to her about me, so she read me that letter when I asked.
But it's still an ME issue and I totally agree that the ME clinic should be handling it. They're the ones calling themselves experts about it, and it's a lot to ask GPs to deal with everything.
But it's still an ME issue and I totally agree that the ME clinic should be handling it. They're the ones calling themselves experts about it, and it's a lot to ask GPs to deal with everything.
And the hilarity from the Lelystad vermoeidheidcentrum (fatigue center) continues.
A couple months ago the psychologist dumped me. I guess she gave up on curing me, once I got the mobility scooter. In the entire 7 or 8 months I had seen her, she never offered any emotional support whatsoever - just nagging me to magically become more active, and admonitions that I'm not a patient and doctors can't help me. And that adorable scowl every time I said "mobility scooter" Then I saw a substitute physiotherapist who lectured me about only using my scooter on bad days. We gave her a concise description of my bad days, and told her the scooter is for good days, since those are the ones when I can sit up long enough to use it.
A month or so ago I had my 3rd crash induced by "relaxation" therapy, after specifically protesting anything involving muscle tensing, and being stupid enough to let her talk me into it. The ergo-therapist wanted to talk about dealing with situations in a less stressful and more productive manner. Not sure how that relates to her specialty or ME/CFS, but it was mildly useful for handling all the BS I get at the clinic.
The physiotherapist, who actually has a mild understanding of ME and OI, had an intern with him, and may have been trying to look like my therapy at the clinic had been effective. When telling him about going on vacation with my fiance and parents in the neighboring countries, he exclaimed about how much better I was doing, that I'm improving, etc ... even though I mentioned the bad crash I had in the process and being too exhausted to do anything after morning outings. Didn't seem to make an impression that I was doing less in other areas (household chores, walking up and down stairs) either, which had left me with some extra energy.
After weighing the current disadvantages (consistent crashes, getting upset by idiots) versus the current advantages (none), I decided to cancel all further appointments. My fiance made the call, and it was done ... I was free! They said they would contact us the following week (this week) to get things settled
Instead, I now have an email de-diagnosing my "fatigue" due to the exclusionary criteria of obesity. Yes, they actually called it fatigue (vermoeidheid). And this wasn't even the Fatigue (burn out) Center calling it that ... it was the polyclinic from the hospital that brags about diagnosing and treating CCC-defined ME/CFS.
On the plus side (hurhur), theoretically we should get a refund of all the "therapy" costs. Since I was sent there as a result of a misdiagnosis We also got the referrals needed for my OI issues, and at least one useful appointment set up which should involve a tilt table.
Do not go to the Lelystad Vermoeidheidcentrum or polyclinic, if you have ME. Huge waste of time, money, and energy. Though occasionally amusing in a very sick and twisted way
A couple months ago the psychologist dumped me. I guess she gave up on curing me, once I got the mobility scooter. In the entire 7 or 8 months I had seen her, she never offered any emotional support whatsoever - just nagging me to magically become more active, and admonitions that I'm not a patient and doctors can't help me. And that adorable scowl every time I said "mobility scooter"
Then I saw a substitute physiotherapist who lectured me about only using my scooter on bad days. We gave her a concise description of my bad days, and told her the scooter is for good days, since those are the ones when I can sit up long enough to use it.A month or so ago I had my 3rd crash induced by "relaxation" therapy, after specifically protesting anything involving muscle tensing, and being stupid enough to let her talk me into it. The ergo-therapist wanted to talk about dealing with situations in a less stressful and more productive manner. Not sure how that relates to her specialty or ME/CFS, but it was mildly useful for handling all the BS I get at the clinic.
The physiotherapist, who actually has a mild understanding of ME and OI, had an intern with him, and may have been trying to look like my therapy at the clinic had been effective. When telling him about going on vacation with my fiance and parents in the neighboring countries, he exclaimed about how much better I was doing, that I'm improving, etc ... even though I mentioned the bad crash I had in the process and being too exhausted to do anything after morning outings. Didn't seem to make an impression that I was doing less in other areas (household chores, walking up and down stairs) either, which had left me with some extra energy.
After weighing the current disadvantages (consistent crashes, getting upset by idiots) versus the current advantages (none), I decided to cancel all further appointments. My fiance made the call, and it was done ... I was free! They said they would contact us the following week (this week) to get things settled
Instead, I now have an email de-diagnosing my "fatigue" due to the exclusionary criteria of obesity. Yes, they actually called it fatigue (vermoeidheid). And this wasn't even the Fatigue (burn out) Center calling it that ... it was the polyclinic from the hospital that brags about diagnosing and treating CCC-defined ME/CFS.
On the plus side (hurhur), theoretically we should get a refund of all the "therapy" costs. Since I was sent there as a result of a misdiagnosis
We also got the referrals needed for my OI issues, and at least one useful appointment set up which should involve a tilt table.Do not go to the Lelystad Vermoeidheidcentrum or polyclinic, if you have ME. Huge waste of time, money, and energy. Though occasionally amusing in a very sick and twisted way
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Hi Valentijn,
I'm sorry to hear that you had such a bad experience. Somehow their incompetence doesn't surprise me anymore. I'm glad I didn't start therapy there. Good luck.
I'm sorry to hear that you had such a bad experience. Somehow their incompetence doesn't surprise me anymore. I'm glad I didn't start therapy there. Good luck.