ME/CFS Doctors in Germany

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That's a decision I've actually had to make, having lived with ME in Germany for the last 7 years. I've had a few ME/CFS docs recommended to me, some very well thought of by patients groups. Having checked them out (and I'd really love to find a good one), I've never found anything except high-priced quackery and a wonderful bedside manner. The patients who recommend them don't seem to get any better year after year, although some of them end up talking like they've swallowed a medical dictionary, which sounds impressive to other patients at self-help groups. The dictionary swallowers end up with status and authority in self-help groups, even though I'm sure they don't really understand what they're talking about.

I never say anything, it seems rude to criticise sincere, desperate and very nice people who are trying to find answers and help others. But my honest opinion is that those doctors should know better and be ashamed of themselves. I certainly wouldn't go near any of them.

 

Any genre you want, many doctors offer a pick 'n' mix of sciencey sounding stuff (unproven treatments / off-label medications with at best anecdotes or small dodgy studies to support them), lots of supplements (vitamin B12 injections etc are popular), to the more esoteric mindfulness / stress reducing type of stuff. They basically mention everything they can think of or find anecdotal evidence or small dodgy studies for, then pride themselves on starting with a comprehensive approach and then narrowing it down to meet the specific needs of the individual patient as if that's a virtuous process which proves how much they take the patient seriously.

But if they haven't taken the evidence seriously in the first place the doctor and patient are just going through a ritual which leaves the doctor earning a good living and the patient no healthier but considerably poorer. In the process the patient will sing the doctor's praises to other patients and maybe adopt the vocabulary and claims of the doctor. A couple of years later the patient will express surprise to the group that these treatments are no longer working, and assume that their ME must be changing or getting worse, so new tests and treatments need considering.

Even my diagnosis from the University hospital in Berlin included the following:

Of their recommendations I tried: Zinc, D3, NADH, Omega 3, B12, and Coenzyme Q10. None of them made any difference, although as ME fluctuates it was hard to tell, and hard not to ascribe any temporary improvements to whatever I was trying at the time. Coenzyme Q10 blew my head off. I didn't try stress reduction through "mind-body therapy" such as autogenic training, yoga, meditation, breathing therapy. My preferred method of stress reduction is by ranting online. I did try pacing.

At least the information from the Charite (University hospital) contained provisos and cited the studies they were based on, so I could look them up online, or find out what people who are much cleverer / better medically educated than me whose judgement I trust thought. I recollect that I found most of the evidence for these recommendations to be poor, and felt disappointed that the Charite was recommending them.

The above treatments and many more are recommended by German "ME specialists", who all seem to be private, and seem to base their approaches on their own pet theories or "clinical experience". I regard what remains of my health as too valuable to allow them to gamble with it on the basis of poor evidence, and it is for them to bring the evidence, not for me to disprove anything. I just don't find their claims credible, and I've yet to meet a patient who they've cured. I have also met patients who have improved without going near these private doctors. It's just not a ritual I want to pay to be part of.

 

The most well-known example of that in Germany is Olaf Bodden, a former footballer, who came down with CFS in 1997 which finished his football career. He was improving but took Rituximab in 2013, after which he got much worse and ended up in a wheelchair. I've read that Dr Scheibenbogen at the Charite didn't test Rituximab any more after that.

More recently (after the phase 2 trial) I think some doctors in Germany may have been offering rituximab for 10,000 a go, but I don't have any facts, and don't personally know anyone who tried it.

 

There's some useful content on the Charite in Berlin here:
News from Germany