• Phoenix Rising needs funds to operate: please consider donating to support PR

Trip to the charite in Berlin, part 1

After 2,5 years of ME and 9 months of waiting for my appointment, I have finally been to the Institute for Medical Immunology at the Charite (University hospital in Berlin), where they see CFS patients in their immunodeficiency outpatients’ clinic, under the direction of Prof. MD Carmen Scheibenbogen, whose ME/CFS research has been discussed on PR.

Here’s their webpage:

http://immunologie.charite.de/en/pa...tpatient_department/chronic_fatigue_syndrome/

And here’s the old PR thread where I described the run-up to my getting an appointment:

Advice please - seeing a psychiatrist on Friday

I was told on the phone by the Charite to expect a 3-hour appointment, so took 3 days off. Berlin is a 6-hour journey by high-speed train, so that’s one day to travel there, the day of my appointment, and a day to travel home, all arranged by my wife, who came with me for the trip. We booked 2 nights in the guesthouse on the same campus as the clinic, no cheaper than a hotel, but within a short shuffling distance to the clinic, which was the main thing.

The train journey went well, if well includes leaving half an hour earlier than originally timetabled and taking a different route. 20 years ago I virtually lived on trains, teaching 120 one-day seminars a year at my customers’ companies all over Germany, so being on one again after so long I couldn’t help remembering how, in my early thirties, I used to hop on, find a seat and casually swing my heavy suitcase onto the top rack. Now I shuffled on and flopped into the seat booked by my wife, while she followed carrying all the luggage and found somewhere to put it.

I was struck by the vast array of people all going to or from somewhere and how varied they were, which brought home to me how nearly all of my life now is spent on the sofa in my living room or shuffling between my car and a classroom. I made a mental note to get out of the village more once all this ME business is over :meh:.

I sat in my corner, an old man with his reminiscences, trying to have an overdue pre-emptive rest but being distracted by the woman opposite me speaking into an invisible phone. I finally got my eyes closed but was disturbed again by everyone around me suddenly rustling sweet papers all at the same time. A waiter had come offering free sweets to the passengers, so everyone at my table obediently took one and put it in their mouths. For some reason this amused me, until I realised that I was sitting there with a silly grin on my face and had become the train looney that twenty years earlier I would have made sure not to sit next to.

In the evening after checking in to our guesthouse, we were walking towards a nearby restaurant when I suddenly and unexpectedly suffered a loud public outburst of tourette’s mixed with apoplexy. When my astonished wife looked questioningly at me, all I could do was point to the words over the entrance to the building we had just passed – The Robert Koch Institute.

Whilst I knew that the Robert Koch Institute had just published an absolutely appalling report into CFS, discussed in this thread here:

Blog on a said-to-be-bad official German report on ME/CFS (German with link to English translation)

in which I had written this:

It seems to be just an uncritical review of the English language literature up to 2014. I can't imagine Carmen Scheibenbogen or the German ME advocate group Fatigatio (http://www.fatigatio.de/aktuelles/) were asked, or if they were their answers must have been ignored.
I had no idea that when the report’s authors chose to completely ignore the research going on at the Charite, the two Institutions were a mere stone’s throw apart on the same campus, and that all they would have had to do would be to walk round and ask for an interview. I briefly considered a mere stone’s throw of my own in recognition of this astounding feat of ignorance.

The day ended with me tucking into a plateful of the best asparugus I have ever eaten, together with a glass of red wine, so all’s well.

Comments

Good writing, fun to read. Did you get any dirty looks when your wife was carrying all the luggage?
 
Ah took me back to my time in Berlin where l lived a couple of stops away from Charite (Lichterfelde West) but had no idea l could have gone there for treatment but then again maybe l saved my money. Oh the trains in Germany!
 

Blog entry information

Author
TiredSam
Views
241
Comments
6
Last update

More entries in User Blogs

More entries from TiredSam