Countrygirl
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I heard today that the woman who was bedridden for seven years with ME and had a few HELP apheresis cycles (four, I think) is now able to walk 15 kms. This information came from Dr Jaeger.
Is Apheresis an effective treatment for Long Covid and ME?
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bensmith
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Can you imagine. I literally dont even let myself hope to that degree.
GlassCannonLife
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Yeah for real. I feel like we'd all need some significant therapy for the PTSD from this if we ever make it out.
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Whoa!! Do you know if she was EBV-onset, or something else? And do you know if she was one of the three that we already know about (two helped, and then the thing being Martin), or another one? And are you in touch with Dr. Jaeger directly, or are you hearing this through an intermediary? And another question: do you know if she had any sort of anticoagulation medications in addition to the HELP apheresis?
It would be useful to know if she had the same make up of clots as the LC people. Dr Pretorius explained in detail what was inside these LC micro clots and their nature. I hope we read a paper soon about what Dr Pretorius/Jaeger see and find in ME.
Also, some patients know that EBV triggered their ME but others don’t know except that it was a ‘virus’ or ‘infection’
Also, some patients know that EBV triggered their ME but others don’t know except that it was a ‘virus’ or ‘infection’
bensmith
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They also said it should be viewed as therapy and not cure. Although it does cure a minor number.
junkcrap50
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Well, you are right. I haven't independently confirmed the waiting list is 7,000 patients. But that is what has been shared on here and twitter. The original post I think was someone who was doing treatments or was signing up for it.
bensmith
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I heard you can circumvent the list if you just call different treatment places, although i’m sure the list to see the main place is extensive.
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I tried to email Dr. Beate Jaeger two ways (one at her email address, one at her clinic's) to get on their waiting list, but never got a response. I've never actually seen a list of all of the clinics, so I don't even know how I'd go about doing that. Occasionally I see somebody mention on the Facebook group or elsewhere mention that they're going to this or that city in Germany or Switzerland, but that's it.
bensmith
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It would def help to be german i think.
SWAlexander
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It is a therapy. Dr. Jaeger never claimed "cure".
How do you know "it does cure a minor number?" and what kind of pathological clot´s were removed? PCR, von Willebrand (Factor) or others?????
This is basically and partially what apheresis can do (without surgical intervention) when clot´s are not too big in the brain. BTW, no study is revealed yet.
We should wait before we speculate.
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SWAlexander
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Yes, many of us contacted Dr. Jaeger, incl. myself, without an answer - yet.
Judee
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Someone started a FB page for long haulers and HELP Apheresis for the US.
I saw it today when I was logged into FB.
I didn't join but I think I found it pretty easily just by typing in HELP Apheresis in the search box when I was there today. You could join the group and see if they have more info on US doctors doing this.
Hi Countrygirl, it seems like you have a good link into Doctor Weir who in turn has lots of information about this... does he have any suggestions of the specific additional bloods tests that patients should be getting and where they might be able to get those in the UK? Would be a good start to then work out whether it's appropriate to start the meds.
Countrygirl
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I believe (relying on memory) that she was the woman who was treated alongside Asad in late September. As he told me that people with EBV are very clotty, she probably started with glandular fever........but I am making an assumption here. Yes, she is one we already know of and has clearly been working hard on her fitness levels until she told Dr J she can now achieve a 15 km walk.
Dr Weir talks to Dr Jaeger on the phone and he rings me 2-3 times a week about the clinic he runs from my house and the help the patients need. He also then relays the information to me about apheresis and lets me know what can be shared at this stage. The above information was from yesterday's discussion with Dr Jaeger.
I don't know whether she had anticoagulants. I can probably find out.
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bensmith
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I was told therapy over treatment was a concept clarified by a patient in conversation with on of the doctors at clinic. Could be bs but its what someone claimed on reddit.
I think obv we all want it available, and they/i have no proof of this shift in framework, but its just what i heard. I’m sure it’ll become more evident this year, it’s not like autovax, many people are talking. Sadly most are long covid so their reference point for sick is actually quite healthy.
I think obv we all want it available, and they/i have no proof of this shift in framework, but its just what i heard. I’m sure it’ll become more evident this year, it’s not like autovax, many people are talking. Sadly most are long covid so their reference point for sick is actually quite healthy.
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They confirmed the waiting list is around 1700 people a week ago in the FB group, not 7,000 patients. Apparently there was some kind of mix up with the 7000 treatments that equals to?
Before the list was agreed by all the clinics you could contact directly and obtain an appointment, right now every clinic uses the list (all of them are in Germany and in January also Cyprus). They don't want to give the clinics information to not collapse their phones and inboxes. The TAA manages the appointments with the clinics I think. Yesterday they said right now, the waiting time it's about 6 months to 1 year, but that could change if more clinics open.
For what I understand, when your turn arrives you can talk to them to try and pick the clinic that best suits you depending on availability.
I have been on the list for a month, if you are interested in the treatment I highly suggest you to do it too. I also contacted Dr. Jaegers clinic without response. They seem pretty overwhelmed...
That's amazing!!
SWAlexander
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I don´t understand who "The TAA" is. Bin to this site but I could not find a "impressum" (leagle required in Europe).
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Sorry, the apheresis association (TAA) (https://apheresisassociation.org).
I think they are just volunteers, patients like us that started this as a way to help. Don't really know who actually runs it, a guy named Markus created the FB groups, maybe @Countrygirl knows more? I doubt they are a legal entity yet but It looks like they are doing what they can, and it's plenty IMHO.
SWAlexander
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Thanks Akasha.