ME/CFS specialist in Germany?

[Carola]

A friend in Germany is seeking help for a relative (a young woman) who has been flattened by what sounds like ME/CFS and is getting no help from her local physician (in a town near Munich). Does anyone know of an ME/CFS specialist in Germany? Thanks!

 

[mellster]

The only German specialist I have come across is Dr Bieger - I think he is in northern Germany. Then there is Uta Santos-Koenig in Austria and the guru KDM (Kenny De Meirleir) in Belgium.

 

[Carola]

The only German specialist I have come across is Dr Bieger - I think he is in northern Germany. Then there is Uta Santos-Koenig in Austria and the guru KDM (Kenny De Meirleir) in Belgium.

Thank you very much for these leads, Mellster. I will pass them along straightaway.

 

[hurtingallthetimet]

i think i read once someone posted cher the singer went to germany for treatment for cfs but said it was expensive but worked...i dont know how true it is maybe look it up?
if true maybe affordable for some?
take care

 

[Nina]

Dr. Bieger is actually in Munich, so he may be a good choice. He's a private doctor though and unless you have private insurance it won't be covered. I haven't seen him myself but I might if I was well enough and living nearer.

All the best to your friend!

 

[Waverunner]

Dr. Bieger is actually in Munich, so he may be a good choice. He's a private doctor though and unless you have private insurance it won't be covered. I haven't seen him myself but I might if I was well enough and living nearer.

All the best to your friend!

Dr. Bieger is pretty up to date and talks to KDM on a regular basis. I can highly recommend him.

 

[Wednesday's Child]

I posted this in another thread on ME/CFS in Germany, but I think it's relevant here too:

I'm in Munich and I go to the Burn Out Diagnostic Institute: http://www.burn-out-muenchen.de/
Burnout is a recognised condition here, and the clinicians have a lot of experience in dealing with CFS. I've been seeing them for just two weeks and I'm very hopeful for the future. My ATP and methylation tests showed that my mitochondria are seriously struggling, and a vitamin B12 deficiency was identified. I am still to receive more results (test for leaky gut in particular), and I will be starting treatment for my mitochondria next week. Treatment should take 6-12 months.

I have public insurance and that covers most "normal" tests and the doctor visits themselves, but so far I've paid about €300 for various blood, urine and stool tests. I consider this to be a bargain, as I assumed the clinic would be private. I've been living with CFS for about 6 years now, and I would be willing to pay any money to get my life back. My echocardigraph, EKG, lung function tests and ultrasound of everything from hips to throat were all free.

It's WONDERFUL to go to doctor and not have to battle for the care I deserve, not have to educate them. I don't speak much German but the doctors speak great English.

 

[taniaaust1]

I posted this in another thread on ME/CFS in Germany, but I think it's relevant here too:

I'm in Munich and I go to the Burn Out Diagnostic Institute: http://www.burn-out-muenchen.de/
Burnout is a recognised condition here, and the clinicians have a lot of experience in dealing with CFS. I've been seeing them for just two weeks and I'm very hopeful for the future. My ATP and methylation tests showed that my mitochondria are seriously struggling, and a vitamin B12 deficiency was identified. I am still to receive more results (test for leaky gut in particular), and I will be starting treatment for my mitochondria next week. Treatment should take 6-12 months.

I have public insurance and that covers most "normal" tests and the doctor visits themselves, but so far I've paid about €300 for various blood, urine and stool tests. I consider this to be a bargain, as I assumed the clinic would be private. I've been living with CFS for about 6 years now, and I would be willing to pay any money to get my life back. My echocardigraph, EKG, lung function tests and ultrasound of everything from hips to throat were all free.

It's WONDERFUL to go to doctor and not have to battle for the care I deserve, not have to educate them. I don't speak much German but the doctors speak great English.

Wow.. its very interesting to hear how different things are in Germany even if its called "Burn Out" .. Im amazed they did ATP and methylation and mitochondrial tests etc

 

[Wednesday's Child]

Wow.. its very interesting to hear how different things are in Germany even if its called "Burn Out" .. Im amazed they did ATP and methylation and mitochondrial tests etc

Yes, I didn't even have to suggest the tests! They asked me questions based on the Canadian criteria for CFS at the start of my first session, and then did the tests of my major organ systems. When my heart and lungs didn't perform so well (with no overt sign of pathology) they hypothesised that my mitos were weak and then launched into the blood tests.

I have a different primary care physician here who doesn't take me too seriously - he put me on L-thyroxine for my slightly elevated TSH and had no other suggestions - so I wouldn't say CFS care is universally great in Germany. Nevertheless, there are lots of labs here who do ATP profiles and nitrosative stress tests, so it's a better situation than most of the countries where I've lived!

 

[Valentijn]

Wow.. its very interesting to hear how different things are in Germany even if its called "Burn Out" .. Im amazed they did ATP and methylation and mitochondrial tests etc

Agreed ... here in the Netherlands, Burn Out is treated psychologically, and ME patients get referred to burn out clinics, if anywhere. It's a bit of a disaster

 

[Insomniac]

I am still to receive more results (test for leaky gut in particular), and I will be starting treatment for my mitochondria next week. Treatment should take 6-12 months.
.

Could you tell us a bit more about the treatment for your mitochondria?
What supplements are you receiving for it?

I have looked at the website you provided using google translate. It was fascinating. Thanks for telling us about it.

 

[Lala]

You can also check www.b-c-a.de

 

[Hope123]

It's always interesting to hear about healthcare in other countries, esp. since they call it "burnout", although I can see how a straight translation may or may not capture the nuances of German language. However, as I understand it, "burnout", contrary to the name, is treated (and viewed) seriously in Germany and I remembered hearing how, under German insurance plans, it is not uncommon for physicians to write for visits to a spa or special rehab center for people to recover say from surgery, stress, etc. for a few days or even weeks. We have a raw deal here in the states on average compared to some European insurance plans. The US healthcare system is superb if you have $$$ but can be very difficult if you don't.

 

[Nico]

I've emailed Carmen Scheibenbogen just briefly after the Rituximab news release from Norway. I think she would be a good contact...at least to ask. She did answer 2 of my emails.
http://immunologie.charite.de/immundefekt-ambulanz/ambulanzteam/

 

[Nico]

A friend in Germany is seeking help for a relative (a young woman) who has been flattened by what sounds like ME/CFS and is getting no help from her local physician (in a town near Munich). Does anyone know of an ME/CFS specialist in Germany? Thanks!

I posted a reply at the end of the thread. Carmen Scheibenbogen may have some ideas, or be a doc to go to. Not sure.

 

[currer]

Chronic fatigue syndrome (CFS) is a puzzling medical condition, and one that many people suffer from. Its cause is unknown, and until now there has been no effective treatment for it. Now, a team of Norwegian researchers have had their first treatment breakthrough, using medication from the sphere of cancer medicine. Carmen Scheibenbogen from the Institute of Medical Immunology at Berlin Charité has had many years of experience with the mysterious medical condition, and is convinced that the Norwegian study is a decisive step forward. “This is important news, especially for patients in Germany, as the situation that CFS patients encounter here is particularly bad”, she says.
Chronic fatigue syndrome (CFS) is a medical condition that is not well known, although it frequently occurs. It is said that 300.000 people in Germany suffer from it. Its symptoms are mental and physical exhaustion; sleep disorders, permanent fatigue, impaired concentration and memory, joint- and muscle pains, a flu-like sore throat and headaches. The condition worsens after exertions. In a severe clinical course, the patient becomes unable to work and can hardly leave his bed. Owing to its non-specific symptoms, CFS is hard to diagnose, and is often regarded as a mental ailment.

http://bergento.no/medical-breakthrough-in-chronic-fatigue-syndrome/

 

[Emootje]

I love the Ganzimmun-lab in Mainz, it's a ME/CFS test heaven. They also have great online-seminars, to bad I couldn't understand all of it, because their seminars are in German. http://www.dr-laeuger.de/vortraege/vortraege.htm
I can highly recommend the "Bedeutung von Tetrahydrobiopterin bei der Entstehung von Nitrostress" and the "Immer müde? Störungen im Energiestoffwechsel als Ursache chronischer Müdigkeit" video.

 

[Wednesday's Child]

Ah, I'm a big fan of the GanzImmun tests too!

Redrachel, I'm posting about my treatment in this thread:
http://forums.phoenixrising.me/index.php?threads/greetings-from-germany.20714/#post-315379
...which I will update shortly

 

[Nanou]

Wow.. its very interesting to hear how different things are in Germany even if its called "Burn Out" .. Im amazed they did ATP and methylation and mitochondrial tests etc

How is your experience and results now with that clinic in Munich? Would you still recommend it? I m planning to travel from canada to germany just to get proper diagnosis and treatment. Am so sick of being in prison in my own body!
Any other recommendation ? Or other clinic in Munich ?
Thank you

 

[Nanou]

I posted this in another thread on ME/CFS in Germany, but I think it's relevant here too:

I'm in Munich and I go to the Burn Out Diagnostic Institute: http://www.burn-out-muenchen.de/
Burnout is a recognised condition here, and the clinicians have a lot of experience in dealing with CFS. I've been seeing them for just two weeks and I'm very hopeful for the future. My ATP and methylation tests showed that my mitochondria are seriously struggling, and a vitamin B12 deficiency was identified. I am still to receive more results (test for leaky gut in particular), and I will be starting treatment for my mitochondria next week. Treatment should take 6-12 months.

I have public insurance and that covers most "normal" tests and the doctor visits themselves, but so far I've paid about €300 for various blood, urine and stool tests. I consider this to be a bargain, as I assumed the clinic would be private. I've been living with CFS for about 6 years now, and I would be willing to pay any money to get my life back. My echocardigraph, EKG, lung function tests and ultrasound of everything from hips to throat were all free.

It's WONDERFUL to go to doctor and not have to battle for the care I deserve, not have to educate them. I don't speak much German but the doctors speak great English.

I already sent a reply but to another member by mistake. As I said I m ready to travel to germany, leave my kids and husband in Canada, if it is to have good diagnostic and good results. Am so sick of this!
What is now your feeling about the clinic you re going to? Any results? Do you stay there or just go for appointments?
Anything I need to know? I m also open to other doctors. Am afraid to do the trip and come back without results... What is the name of the doctor you re seeing?
How long is the process? ... As I will have to be in a hotel for a while... That might be quite a cost!
Thank you for you help!