Positive CFS/ME biomarker test

[Anetta]

Hi guys! I had participated in clinical trials of biomarker test for CFS/ME that took place in Hamburg university lab and I got positive result. I also scored 10 out of 10 on the severity scale (I am moderate in real life but I am sick only for 8 months). Now I have a few questions based on that test and wondering if anyone is interested to discuss it. Having in mind that it is still experimental test I still would like to mull over:

1) My friend who has mild CFS/ME (she has full time job) has also scored 10 out of 10 there so there is hardly correlation between test severeiy scale and current condition of pwME (although it was suggested by the researchers)
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. They did test very sick people who also have some kind of PEM (late stage cancer, AIDS) and they were negative. They didn't test people with confirmed Lyme disease (like there is such thing lol).

Anyones 5 cents would be appreciated

 

[pamojja]

What biomarkers have been tested in that trial?

 

[Anetta]

Nanoneedle by R. Davis

 

[Lisa108]

@Anetta,
University Clinic of Hamburg-Eppendorf's Lab?
When?
How?


I was not aware of any collaboration between Hamburg and Stanford... Would you please tell some more?

 

[kangaSue]

I was not aware of any collaboration between Hamburg and Stanford... Would you please tell some more?

https://www.healthrising.org/blog/2...e-nanoneedle-scores-big-in-first-me-cfs-test/

 

[Dakota15]

Is Hamburg in Germany? I had no idea that Ron and his team we're collaborating the nanoneedle in Germany..

 

[Lisa108]

Sorry @kangaSue, but I can't find anything about Hamburg in the text.

But @Dakota15 is asking more precise than I had: Hamburg in Germany?

 

[HansG]

@Dakota15 @Lisa108 From the context of what @Anetta explained in her welcome thread, yes, Hamburg in Germany.

 

[HansG]

Btw. good news, that there already international tests of nanoneedle.

@Anetta : Can you give us some details, e.g. wich department was running the study? Who was the MD in charge?

 

[Anetta]

Unfortunately I do not have any details I can share like links etc. I happened to get in by chance. I know a girl who has connections in this university and she was collecting blood. I don't think it's anything open to public yet.

Yes Hamburg in Germany.

 

[Anetta]

When I have official results back I will share it though!

 

[Dakota15]

When you say scored 10 out of 10, was this by word of mouth from the doctor / lab then if you don't have official lab results? Just curious

 

[Anetta]

When you say scored 10 out of 10, was this by word of mouth from the doctor / lab then if you don't have official lab results? Just curious

Yes I heard this from lab by the phone. They also told me they will recheck it and when the trial is complete they send me some kind of official paper.

 

[Dakota15]

Very interesting! Please keep us updated when they send you the official paper, I'm really curious how it will read

 

[Lisa108]

I couldn't find anything about it on the "German Clinical Trials Register"-hompage. (A study has to be registered there as a prerequisite for publication.)

Nor on the research portal of the University Medical Center Hamburg-Eppendorf. (Although this is under construction and not many studies are online yet.)

Would love to find out more!

 

[Janet Dafoe]

Ron Davis and Rahim Estfandyarpour are not collaborating with anyone on the nanoneedle yet. It's still being developed at Stanford and Rahim, at UC Irvine, is developing one that will process 100 samples at a time, necessary for figuring out "what's in the blood".

see this new thread https://forums.phoenixrising.me/threads/nanoneedle-update-finding-whats-in-the-blood.78592/

 

[Lisa108]

Thank you so much for taking the time to comment, @Janet Dafoe (Rose49) , and for clarifying things (here and in the other thread). Very much appreciated!

 

[BeADocToGoTo1]

Hi guys! I had participated in clinical trials of biomarker test for CFS/ME that took place in Hamburg university lab and I got positive result....

Thanks for sharing. I am very curious which specific markers they are testing for. If you find out, would you mind letting us know?

...They didn't test people with confirmed Lyme disease (like there is such thing lol)...

What do you mean by this? There are many tests available, which might be useful looking into if you suspect that you have Lyme disease. These are ones I had done to help rule it out, for example:

● Lyme Disease Panel HNK1 (CD57)
● Tick Borne Disease Panel
● Babesia Microti
● Bartonella PCR, IFA, ePCRx3
● Rickettsia
● Yersinia Enterocolitica
● Borrelia Myamotoi
● Ehrlichia Chaffeensis
● Anaplasma Phagocytophilum

 

[wigglethemouse]

I'm wondering if @Joh has heard about the work at this Hamburg University lab?

 

[wigglethemouse]

I'm speculating here but it is entirely possible that this Hamburg group are using a commercial cellular impedance analyser with an adapted salt stress test to develop their own diagnostic test based on the "nanoneedle" work.

Alain Moreau presented at the Stanford Symposium in September and at the NIH conference in April about his use of the CellKey cellular impedance analyser and how he was testing compounds and measuring impedance changes in Jurkat cells soaked in patient plasma.
https://forums.phoenixrising.me/thr...ponsored-by-omf-discussion.77623/post-2231272