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Trip to the charite in Berlin, part 5

I was reminded of a passage from Osler’s Web, where Hillary Johnson describes a neurologist talking about the difficulty of diagnosing MS:

Exhibiting the singular logic of the modern clinician, Sheremata explained the problem: “I want to emphasize that the diagnostic criteria for MS are really quite clear,” he said, “but there are patients in whom the diagnosis is not clear.” Doctors, in other words, know very well how to diagnose disease; it is patients, with their confusing hodgepodge of symptoms and signs, who fail to cooperate.
So I was wondering if my confusing hodgepodge and failure to cooperate was going to get me into trouble when I asked Dr Hanitsch if I would be getting a diagnosis.

However, I needn’t have worried. Dr Hanitsch seemed very surprised by my question, then said “well yes, I wouldn’t have spent the last hour talking to you if I didn’t think you had CFS”. He then slightly covered himself by saying that he would be discussing my case with Prof Scheibenbogen before the final report. I was surprised and very pleased to hear this.

Recovering from our mutual surprise, things got a bit more chatty. He asked me if I would be interested in hearing about the research they are doing at the Charite. I replied that I would be very interested. He told me that they are given access to the patient data from Norway, and talked about the difficulty of finding statistically significant findings with 2000 antibodies to look at, and a bit about the research in England. At this point he rather self-deprecatingly said that things weren’t quite as advanced in Germany as they are in England, where they have centres that ME patients can go to and receive good advice on energy management and pacing.

Having suffered two tourette’s outbursts in the last 24 hours, I decided that a third would be inappropriate, so maintained my composure.

“I can see that you are biting your lip, Mr TiredSam*”, said the Dr.

I replied (making a mental note to work on my poker-face) that although I had left England 25 years ago, the impression I got from other patients was that it was one of the worst places to have ME, due to the psychologisation of the illness.

He replied that he when he had visited ME centres in England he had been very impressed. I conceded that I had no personal experience of having ME in England, that he had been there and I hadn’t so I accepted what he said, and let the matter drop. I don’t know which centres he visited, and it’s perfectly possible that he had been to one/some where caring staff ignored NICE guidelines and did their best for the patients.

It was then time to take my blood. I asked if it could be done lying down, and stood up to remove my cape. As I did so, by way of throwing a small grenade over the parapet to see what happened, I said “I was surprised to see that you use the Chalder Fatigue Questionnaire …”



*TiredSam isn’t my real name by the way, it’s a nom de plume.

Comments

I think a Tourettes relapse would have been most appropriate at that point! The ME 'centres' in the UK, if you are unlucky enough to have one (none in Wales, where I live), peddle psychobabble, CBT, lightening process style, push yourself to get better quackery.
 
Nice cape swishing TiredSam, it is important to be stylish and debonair whilst being prodded by medical types. It must be tricky rolling up the sleeves on the SuperSuit far enough for them to take blood though.
My local ME centre are brilliant btw, they give NICE a polite nod then get on with dealing with what they view as a not yet understood neurological-autoimmune illness in as helpful way as they can (drugs and pacing mostly). But I'm one of the lucky ones.
 
"Having suffered two tourette’s outbursts in the last 24 hours, I decided that a third would be inappropriate, so maintained my composure." .....discretion being the better part of valour! My eyebrows climbed for my hairline when your doctor said how much better things are in the UK!
 
TiredSam said:
*TiredSam isn’t my real name by the way, it’s a nom de plume.
Oh I see! And here I was thinking your mum filled in the birth form wrong, confusing "baby's forename" with "how are you feeling now?"
 

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