@Joh is very well informed about Germany, and may have a different perspective to me.
In my experience the situation in Germany is absolutely horrendous. This would be the consensus at the self-help group I go to every 2 months, where some of the participants have been forced to undergo harmful treatment for depression before being considered for a disability pension. The insurance companies have a saying here - "rehabilitation before pension" - which means before you are granted a pension, you have to have tried rehab. As most CFS patients can't work any more, they have to go along with this if they want to claim a disability pension. As CFS is officially classified as a mental health issue, the rehab you are forced to go to is for depression, where the treatment includes an exercise regime because that helps with depression, right? I know people who's remaining health has been ruined by this.
The Charite in Berlin is a beacon of light where their immunology dept researches CFS (nobody says ME here) and will give a diagnosis. They have just stopped accepting patients from outside Berlin because they are so overwhelmed, so I just got there in time before they closed the doors. I wouldn't know where else to go with CFS in Germany, there are some other clinics that say they treat / diagnose it, but I have heard various reports from people who have been and they sound fairly useless - eg there's one clinic where they put the CFS clinic on the 3rd floor in a building with no lifts so by the time the patients have walked down the stairs for their medical appointments they are exhausted.
There are also various private doctors who will charge you thousands to give you vitamin b12 injections and treat you like a guinea pig. They are what pass in Germany for "experts". I avoid them.
I personally have mild ME, so I've been to the Charite for my diagnosis and found a doctor who I never go to unless I want something (last thing was a referral for a tilt-table test) - even he tried to trick me into going to the psychosomatic clinic in my town, but now since I've been to Berlin he just does what I ask. So I avoid any involvement with the health system and tell few people about my illness. If I ever have to go to hospital my wife is under strict instructions not to mention CFS. I manage it myself, rant on PR, and wait hopefully for progress in the USA or Norway so that maybe one day I can come out of hiding and have my life back.
@Janet Dafoe (Rose49)
