Your calm and neutral way to describe this hell of an illness is the most valuable thing about the whole video. Big respect ty. Its taking everything from me.
Thank you. This illness shatters dreams. It feels strange talking about it 'from a distance' while also knowing personally what the illness is capable of.
Do you know much about the phase 2 clinical trials of BC007 from Berlin cures? Looks like a breakthrough treatment but can’t find much info on the latest trials
@@me-cfs-strategiesforhealing I've been thinking about getting HELP apheresis in Germany or Cyprus. It's extremely expensive from someone from the Balkans... Can insurance companies cover the costs? How did you find accommodation in Bayreuth and was it expensive? By the way, I am currently somewhere between mild and moderate. I can only imagine how hard it is for severe patients to even travel to Germany and Cyprus... Fellow patients on Reddit's CFS subreddit are negative and pessimistic about apheresis. I don't know. When you have this devastating disease, you literally want to try everything...
I used AirBnb. Bayreuth is expensive unfortunately. You can find AirBnbs (whole apartments) for around a 1,000 Euro p/m - and I had one of these - but most are much more than that (typical is 2,000 p/m), though around 1,500 p/m is also possible. Obviously, you can find single rooms for cheaper in general. Health insurance companies do not cover the treatment sadly. Which country are you from?
@@me-cfs-strategiesforhealing I am from Serbia. The good news is that I feel like I have been recovering since I started supplementing with buch of vitamins, minerals etc. I don't know if it's a good thing or not (or just a placebo?). I also don't think local insurance companies will cover the expenses... They'll rather steal money from you than help lol
That's great you are doing better, I hope that continues. Unless a treatment has been approved by a regulatory body for a specific condition, an insurer won't cover it. And there are precisely zero treatments approved for ME/CFS.
Are there any natural "DIY" ways to do this eg supplements, herbs etc? Something that "washes" the blood too but without having to go to Germany for these procedures?
Not that we know of at this time but there is a study about the vagus nerve stimulator, Nurosym, which showed a reduction in Alpha 1 and Beta 1 AABS after two months use ('non-invasive vagus nerve stimulation in POTS' was the study title, or something like that). So they might respond to efforts to retrain the brain (at least in some people). I came across a research group that wanted to look into medications for the AABS but that is a while away. I'll have a video out in a few weeks on how I think we might be able to heal the AABS naturally but it is quite speculative.
In the study you mentioned they used the Globaffin (Fresenius) columns containing peptides specifically binding IgG. This filter is proven to be very effective in reducing IgG's from the plasma (not just autoantibodies). I have not heard about the other filters you mentioned, but it is important to verify that the other filters are as effective in adsorbing IgG's from the plasma than the Globaffin from Fresenius. Do you have any data on this?
I don't know, I'm sorry. My doctor in Germany just told me about the Miltenyi and Diamed filters. He said they are both effective, just the Miltenyi does twice plasma volume and the Diamed once.
@@me-cfs-strategiesforhealing It is always better to verify than to trust. In case of doubt I would always prefer the filter which was used in the studies (Globaffin) to be sure to get the best result.
I believe not. I think it is only in Germany unfortunately. There is a blood washing treatment in the US called 'plasmapheresis'. I don't know if that takes out AABS or not though.
I also heard that Dr. Isaac Eliaz is offering therapeutic apheresis treatment in th US, but I don't know if he is offering this specific one. Try to contact him. Maybe he knows someone in the US if he is not offering himself.
The auto-antibodies will always come back, all the time the reason they are there in the first place, in excessive numbers, is still there. Remove the reason they are there in excessive numbers and you don't need the treatment, because the body will stop releasing them in excessive numbers. It sounds to me to be a very expensive way of reducing the consequences of the excessive auto-antibodies, while crossing fingers that the problem sorts itself out.
That's a reasonable perspective. Indeed, it is a 'fingers crossed' kind of scenario, hoping that once the body experiences less of a burden (with the AABS removed) that the immune system can follow suit and then produce less of them in the future. And there are studies showing that that does happen in some patients but, on the flip side, it is by no means guaranteed.
@@me-cfs-strategiesforhealing I must admit that i am not familiar with the studies you refer to. Are we talking the same sort of outcome as with hyperbaric chambers, that is to say, it certainly is showing benefits in many cases, but it isn't really conclusive? We know that it works really well when it does, but we haven't got a clue why some patients see no benefits at all, or their symptoms come rushing back, full steam ahead, when they stop.
Check out the scheibenbogen 2018 paper ‘IA to remove AABS in ME/CFS’ which was *fairly* positive in its results. The current BC007 trial is of 114 patients (results in autumn) will give us a clearer idea of what can be achieved when the aabs are removed.
Yes, rather like that benefits but I guess those who don’t see benefits are those who didn’t experience long term reduction in autoimmune response following treatment. Apparently BC007 should be able to achieve immune modulation better than IA
@@me-cfs-strategiesforhealing I still think we are in the same sort of situation as hyperbaric oxygen therapy. It is great to reduce the suffering, even if it is temporary, but it does cost a lot of money. Definitely not for poor people who don't have enough money to pay for the privilege of suffering less, while they wait for the doctors to work out what's really going on. Thinking, hoping, wanting and convincing oneself a treatment is effective, is not the same as proving categorically a treatment to be effective. I think there is a lot of wishful thinking going on with HBOT, and I'm inclined to think they are at it again. Personal opinion, obviously.
