Every month I organise ME-Living room groups, meetings for people with ME/CFS. At these meetings we exchange experiences, share tips about our lives with ME/CFS, and make new contacts. I supervise 2 groups: every 1st Monday and every 3rd Wednesday of the month. (Click here for more info.) Because our experiences might be interesting for others as well, I will share the summaries of our conversations here.
There are 3 centres in the Netherlands that specialise in the treatment of ME/CFS as a biomedical (physical) condition:
CVS/ME Centrum in Amsterdam
The CFS/ME Centre in Amsterdam is the centre of Ruud Vermeulen and his team. Their website describes in detail how they work, please see www.cvsmemc.nl.
Stichting Cardiozorg in Hoofddorp
CaardioCare Foundation is the centre of the cardiologists prof.dr. Frans Visser and Linda van Campen.
Their website doesn't really describe how they work, but it does list the studies that could be done. See: www.stichtingcardiozorg.nl.
The experience of their working method within our Living Room group is as follows:
- Extensive anamnesis
- Sleep examination
- Exercise test, in which oxygen and carbon dioxide levels were measured
- Pain test related to fibromyalgia
- Research into orthostatic intolerance
- Trying of various medicines, in consultation
- Referral for sports physiology and occupational therapy
- Regular phone (!) check-ups
- Extensive blood tests had already been done, so these were no longer necessary. Otherwise, various blood tests would have been done to rule out other causes.
Vermoeidheid&PijnCentrum in De Bilt and Lelystad
Fatigue&PainCentre* is the centre of (ex-patient) Pierre de Roy and his team. Their website describes in detail how they work, see www.vermoeidheidenpijncentrum.nl.
* In September 2019 this centre changed their name into Vermoeidheidkliniek (Fatigue Clinic).
On the website of the ME/CFS Foundation you can read general information about possible treatments, both regular and alternative. See mecvs.nl/informatie-mecvs/behandelopties.
This meeting was held in December 2017.