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.

 

What genre of quackery is it? Is it the same sort of thing you see online with people trying unproven treatments (eg trying abilify), or something else?

 

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.

 

@TiredSam Have you sen anyone that has given Rituximab?

 

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.

 

Thought I'd share my experience at the Charite Berlin here:

To be quite honest, my visit to there was a bit disappointing. I know they are painfully underfunded so I don't blame them for having nothing more than two borrowed rooms from the tropical institute (luckily the kind nurse/secretary let me lie down in her office so this wasn't much of a problem for me). But I don't understand why they wont at least improve the questionnaires a bit, which focus mostly on „fatigue“ and „tiredness“. This is just very counterproductive, when we're trying to steer away from the fatigue characterization of ME. It may also negatively impact their quality of research as it is pretty difficult to answer some of these questions for patients.

Anyways, being practically severe at the time, when I was up for the consultation with the doctors my brain was completely fried and I couldn't answer most of their questions properly, especially since many of them where rather vague. On top of that, the time frame was very short (ca 15mins), so they kept barraging me with questions even though I couldn't speak any longer, which they didn't seem to understand. So in the end I could only maybe talk about 5 of my many symptoms and they just assumed that was all I had and blamed most of it on my POTS. Now they want me to do another cardio checkup before I can even get near a diagnosis again. And just when I thought I could get a nice long break from the medical profession...great.

I don't discourage anyone from going, it was definitely worth it for the blood work alone, just be prepared and don't expect too much. I'm sure you'll have a much better experience if you are mild/moderate. My biggest regret is not writing my symptoms down beforehand (I stopped doing this a while ago because I always got annoyed looks from doctors when I pulled out my symptom sheet and didn't want them to think I'm making this up because I cant talk freely). If you are severe I'd advise you to call the secretary/nurse beforehand to make sure you don't have to wait in the hall and can lie down etc.

 

A diagnosis from the Charité can help to be taken a little more serious by other doctors or when you're applying for disability. It's the place with the highest profile in Germany for ME but not of much help otherwise.

I wish ME docs here would explain the importance of pacing from the first visit. And be more helpful to diagnose co-morbidities that sometimes can be treated (e.g. POTS) or be helpful for "proving" physical problems.