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@butter. 7 plasma exchanges over the time of 10 days. Nothing.

I had 10 plasma exchanges and it did nothing. I have 2 friends who got immunoadsorption in Berlin. It did nothing. If you look into the study from Scheibenbogen in which she claims immunoadsorption helps, look at the step counter. It shows nearly the same numbers. I talked to one of the...

If the coming paper from Dr. Prusty has profound and lasting mitochondrial news, we need to get SS31/Elamipretide to patients to try it out as fast as possible imo. I have high hopes here because its stops mitochondrial fission. Im looking for it for ages now but besides shady china alibaba...

@cassava7 nothing clear yet, but if he gets in this state of deep fatigue, and with the studies i have seen, i think the mitochondrial fission is coming from the adrenergic system. Not saying this is important for Cfs. The mitochondrial fission seen in Cfs could be just a side effect and not...

@cassava7 i suggest watching this video its about a guy who had the most severe fatigue and recovered after they surgically removed both adrenal glands. Nothing else worked for him. No medication. Not even the removal of one gland. Both needed to go.

what do you mean, i just last week got an email telling me that OMF employed a PhD student with a big DONATE NOW button at the bottom for the big news. Whats next, Fluge and Melle got a new facility manager - DONATE NOW. (sarcasm off)

@cassava7 we contacted him this week.

He seems to think its a neurohormone thats doing the mitochondrial fission. Read some papers about ß-adrenergic signaling and mitos here. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6297546/ So do we end up at autoimmune produced adrenergic stimuli again ?

The new machine doesnt cost $30k. The old one did they use right now. And the problem is the old one is a super specialized tool which is not needed for Cfs. The next problem is the old machine needs 24h for a sample. So they build a new one which should cost $200 and can take 100-200 samples a...

thats exactly how i see, im sick for 5years now with cfs. And about after 2 years my sight worsened a lot and looks pretty much just like those pictures now

But there goes my plan to try it out in 2020. Because it wont see any admission anytime soon now. :/

well there goes SS31... https://www.biospace.com/article/stealth-bio-s-elamipretide-flunks-mitochondrial-myopathy-trial/

I find it interesting that a lot of young ppl can be cured/benefit a lot from a proper Immunotherapy early on like iv igG. Always kept me thinking about whats the big difference here. Must be something about the t-cells and the thymus which stops working and just becomes at fatty mass at around 18y.

@FMMM1 they did an Immunoadsorption which just removes the igG. So even if they wanted, i highly doubt they accidentally removed the something in the blood. Also i talked with some ppl from this study. Lets say it this way, the study seems not to reflect what they told me. I got a cycle of 7...

i know that it is a disgusting company move but they wont just give it away for the original price just because you would like them to. Even further, i would expect them to increase the price even more should it really help ppl with Cfs. "Oh, ah new disease we can treat ? Lets just reply it...

In no universe its the same cost as Rituximab lol haha. One dose of Rituximab 500mg is around 2000€ and it last for 3-6 months. One dose of Lemtrada cost 20000€ and it last for 3 days. https://multiplesclerosis.net/living-with-ms/lemtrada-economics-ms-treatments/

"it’s possible to solve ME/CFS in three to five years." Ian Lipkin 2015. Well its his big year 2020.

@ScottTriGuy Data collection ends this year. Early next year is the meeting they said for a possible publication. With Alexion they also found a distributor. Seems like a possible 2020 availability.

I did have one cycle of 7 exchanges over 10 days. Not gonna lie it was pretty exhausting. Sadly it did absolutely nothing for me.

"We found that ME/CFS CD8+ T cells have reduced mitochondrial membrane potential compared to healthy controls." That even further makes me want to finally try out elamipretide.