Positive CFS/ME biomarker test

Lisa108

Lisa108

Senior Member
Messages
675
I would be thrilled to learn that there is something like a "Hamburg group" (or any other university hospital in Germany) to finally come up with research in the ME/CFS-field.

At the moment, we have one tiny fatigue center in Berlin (Prof. Scheibenbogen's team), who can accept only adult ME patients from Berlin and sorrounding Brandenburg.
And one tiny center in Munich, for paediatric ME patients.

Unfortunately, I couldn't find any hint yet that the University Medical Center Hamburg-Eppendorf is involved in ME/CFS-research.

@Anetta, would you please answer our questions and not leave us speculating here? Thank you.
 
percyval577

percyval577

nucleus caudatus et al
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1,311
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Ik waak up
Three years ago I have been in Hamburg Eppendorf, and they tested at least the for the common triggers. The infectiologist even said that ELISA tests for borrelia would be nuts, but when the westernblot turned out to be positive - the lab has written: "compatible with late stage Lyme" -, he just said: "No, the test isn´t positive."

This is obviously completely inconsistent altogether, but they probabaly have helped to get me a disabilty, which I can be thanksfull, of course.


Furtheron they wasn´t impressed by my approach of a low manganese diet for killing borrelia. But they - reasonably, I really think - didn´t have any confidence in abx here either, although the infectiologist even offered me one - announcing also that it would be helpeless (obviously they believed in the reality of the symptoms, at least).

Anetta said:
2) Does it mean that I can't have Lyme? I am really fascinated between similarities in Lyme and CFS/ME but can't make my mind up what is what.
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Speaking for myself, I know my two infections and/or triggers: borrelia and then with a catastrophy EBV.

The positive borrelia test actually only really proves that my immunesystem produces/d antibodies typically for lasting borrelia. So, what this right now says isn´t completely clear, although recent research has shown that borrelia can survive over a long time and also abx (still some researcher write against any relevance, :wide-eyed::bang-head:).

I personally don´t think that here in my case any borrelia are left now, or that they would a be problem that I couldn´t handle.


I would say "Neuroborreliosis" and "CFS" are guesses a bit into the blue, so there may be a subset of a borrelia-CFS, and so on. There is a lot to find out.
 
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A

Anetta

Messages
31
Hi Lisa, I am sorry for not keeping you in the loop but the fact is that I also am not completely sure which studies did I participate in. I know it's a collab between university and some pharmaceutical company. I am actually from Russia and was offered to get tested by a girl from our local CFS community who has connections there so of course I agreed, so I sent my blood to Germany. I will get my official results back in January where it should state more clear what was it. But it will state that it's an experimental test and can't be used for a diagnosis.

Sorry guys believe me I just as confused as you are.

Lisa108 said:
I would be thrilled to learn that there is something like a "Hamburg group" (or any other university hospital in Germany) to finally come up with research in the ME/CFS-field.

At the moment, we have one tiny fatigue center in Berlin (Prof. Scheibenbogen's team), who can accept only adult ME patients from Berlin and sorrounding Brandenburg.
And one tiny center in Munich, for paediatric ME patients.

Unfortunately, I couldn't find any hint yet that the University Medical Center Hamburg-Eppendorf is involved in ME/CFS-research.

@Anetta, would you please answer our questions and not leave us speculating here? Thank you.
Click to expand...
 
H

Hajnalka

Senior Member
Messages
910
Location
Germany
wigglethemouse said:
I'm wondering if @Joh has heard about the work at this Hamburg University lab?
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Hi, I haven't been logged in for a while.

Prof. Guse from UKE Hamburg gave a talk at an ME conference at Griffith University, Australia in November 2018. The talk wasn't on ME, the title was: "ADENINE NUCLEOTIDE-DEPENDENT CALCIUM SIGNALLING IN T-LYMPHOCYTE". https://www.griffith.edu.au/__data/assets/pdf_file/0029/564185/Final-Program-RID-3.pdf

In June 2019 this was posted by the NCNED on Facebook: https://www.facebook.com/301252900007181/photos/a.304192213046583/1610443165754808/?type=3&theater
𝗡𝗖𝗡𝗘𝗗, 𝘁𝗵𝗲 𝗖𝗼𝗹𝗹𝗮𝗯𝗼𝗿𝗮𝘁𝗶𝘃𝗲 𝗛𝗲𝗮𝗹𝘁𝗵 𝗜𝗻𝘁𝗲𝗿𝗻𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗳𝗼𝗿 𝗠𝗘 (𝗖𝗛𝗜𝗠𝗘) 𝗮𝗻𝗱 𝗣𝗿𝗼𝗳𝗲𝘀𝘀𝗼𝗿 𝗔𝗻𝗱𝗿𝗲𝗮𝘀 𝗚𝘂𝘀𝗲, 𝗨𝗻𝗶𝘃𝗲𝗿𝘀𝗶𝘁𝘆 𝗖𝗹𝗶𝗻𝗶𝗰 𝗘𝗽𝗽𝗲𝗻𝗱𝗼𝗿𝗳 (𝗨𝗞𝗘) 𝗶𝗻 𝗛𝗮𝗺𝗯𝘂𝗿𝗴, 𝗶𝗻𝘃𝗲𝘀𝘁𝗶𝗴𝗮𝘁𝗲 𝗽𝗵𝗮𝗿𝗺𝗮𝗰𝗼𝘁𝗵𝗲𝗿𝗮𝗽𝗲𝘂𝘁𝗶𝗰𝘀 𝗳𝗼𝗿 𝗠𝗘/𝗖𝗙𝗦

Introducing Franziska Möckl from Professor Andreas Guse’s Laboratory, University Clinic Eppendorf (UKE) in Hamburg, who is undertaking a collaborative research project with NCNED.

Franziska has nearly completed her very important research at NCNED where she has been undertaking research into the role of a specific pharmacological agent for improvement in immune cell function.

This data will be submitted for a publication by mid July.
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It was both very surprising as the UKE hasn't mentioned ME in any other context before or after. I haven't heard anything else about this study.

But this is just what I could find about ME and the university Hamburg, of course I have no idea if it's the trial Anetta did take part in.

Didn't you have to sign some kind of contract or a consent form @Anetta?
 
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