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I still hope that the something in the blood keeps being true, but i got a cycle of 7 plasma exchanges 2 months ago. Did absolutely nothing for me. Doesnt confirm or deny anything. Still i would have hoped for a change for the better if you believe its something in the plasma.

Still waiting for SS31/elamipretide to be market ready. The phase 3 trail for Primary Mitochondrial Myopathy (https://www.stealthbt.com/programs-pipeline/#pipeline - MMPOWER-3) ends this year. So with some luck it will be available 2020. If its in the price range of copaxone im definitely gonna...

Its proven that there is disturbance in the autonomic nerve system. Everyone who is still drinking coffee, coke, alcohol, energy drinks has only to blame themselves tbh.

Ppl need to drink water to live, who would have known without a study.

Interesting. A lot of ppl with Cfs have a bad skin perfusion and are very pale. Seems like its not just a centralization from the body, more like a bad perfusion in the whole body. Including brain and organs. Holding the breath is a strong parasympathetic trigger. But it seems its totally...

Well, if its true, no one should ever recover from Cfs then. There would be no cure, no treatment. bad prospects for sure.

Mhh ok sounds pretty dubious after looking into your links. Did some ppl from the forum really try dichloracetat or Meldonium ?

@Jaybee00 oh thanks for letting me know haha. Didnt hear his name before. Was just browsing through some studies and found it an interesting read. Because my main symptom right now is frontal brain pain and brain fog to the grade that i forget my own name :/ thats why the Meldonium treatment...

https://www.sciencedirect.com/science/article/pii/S0306987719309831

@Hutan that sounds absolutely plausible to me. Maybe also want to look into this. OI and POTS after vaccination.

So i looked up a lot of studies again for graves disease and rituximab. For me it still seems to only help with the graves opthalmopathy and not the disease itself. Also it seems strange to me why you would prefer a medical removal of a life dependant gland instead of trying to treat it with...

@Hutan maybe you want to watch this.

@Hutan https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5541141/ i used this method. Its a test for GPCR autoantibodies like seen in CFS. Because of the physiology of the heart you can measure around 15 different antibodies at the moment. Amongst other things a1, ß2, M2, nociceptin, AT1, ET. So...

@Jonathan Edwards Thanks for the response. Im not a native english speaker so please forgive me any mistakes i maybe make in showing my thoughts now. I didnt measure my autoantibodies with a standard binding assay to just show the amount or just the existence. I used a bio essay, a model with...

I talked with Dr. Scheibenbogen about the study. It also was just a proof of concept. 10 ppl got an immunadsorption with no further follow up medication or treatment. 9 out 10 said they got an improvement out of this ( mostly for around 2-3 weeks, just as long an immunadsorption without further...

The negativ Rituximab trial doesnt rule out an autoimmune cause of ME/CFS at all. There a different types of antibody producing B-cells. Varying on each person they can be produced by earlier B-cells who still have an cd20 epitope or by long living plasma cells who dont react to Rituximab...

Well i have a positiv tilt table and also these antibodies. Getting a plasma exchange next week. So i can tell you pretty soon how imported that is haha

Thanks a lot for the answer. Dont know what to expect but will definitely give it a try. I was tested positiv for ß2, M2 and nociceptin receptor autoantibodies. So lets see how life is without them for a while.

Heyho, short introduction from my side, im from germany ( english is not my native language so please overlook possible grammar mistakes :) I got CFS after an infection with the legionnaires disease in 2014. I tried a lot of different therapies by now (some examples: Rituximab, Rapamun) and im...

checks out for me tbh. they found ß2 autoantibodies in asthma. And im a strong believer in autoantibodies still for cfs/fibro/crps