GlassCannonLife
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Ah thank you, very useful!
Is Apheresis an effective treatment for Long Covid and ME?
- Thread starter Countrygirl
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Ah thank you, very useful!
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mE is not HErpes, just EV. Herpes and EBV is CFS. WHat does your name mean paused ME? LOL
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Yep a snakeoil salesman. But nevertheless I am going to get his cytokine profile done as I am intrigued to know what my profile is like. Especially as I wanna know if I can beat covid. I phoned up the NHS and pretended I had MS not ME so I could get some Paxlovid but they never called back so I reckon they checked with my GP first and they said I had ME which does not count for high risk like MS. It should though. Politics again.
No, it's not really useful to call the NHS about anything except having information sent to different organizations that have registered with it. In return, you do receive information about specific things.
In the early years, we were hoping to get the studies from both HIV and MS (the latter just recognized as a disease" in those days) sent to us since they both involved the immune system. Well, that never, ever happened no matter how many calls or contacts made. Would it have helped? Well, that's the big question.
So Martin, I can see how the NIH would not have addressed your question. It takes many, many years and studies for a disease to be moved from the classification of a Syndrome (a collection of symptoms) to a Disease. That makes a huge difference to all concerned. How are things classified in Germany or Europe generally? Yours, Lenora.
In the early years, we were hoping to get the studies from both HIV and MS (the latter just recognized as a disease" in those days) sent to us since they both involved the immune system. Well, that never, ever happened no matter how many calls or contacts made. Would it have helped? Well, that's the big question.
So Martin, I can see how the NIH would not have addressed your question. It takes many, many years and studies for a disease to be moved from the classification of a Syndrome (a collection of symptoms) to a Disease. That makes a huge difference to all concerned. How are things classified in Germany or Europe generally? Yours, Lenora.
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Dear Community
I’m new to this forum. I will share my story below, but why I post this here is because I would like to have some advise or the latest information regarding the H.E.L.P. Apheresis for LongCovid AND ME/CFS.
Mainly: Are there risks involved?
Meaning do I have to fear that my state gets worse when trying H.E.L.P. Apheresis, OR is it simply either going to help or doing nothing.
Let’s ignore the financial aspect. Yes it’s very expensive and therefore questionable but I would like to focus on the medical pros and cons here.
Because I could try the H.E.L.P. Apheresis and yes, the money is a problem, but far more important is that it won’t do harm. Cause that is my concern, but I don’t know much about it and thought some of you might have gathered some information about that.
So I would love to hear of some know that it is usually well received by ME/CFS patients, meaning it helped to some degree or did nothing, OR if it actually could worsen the state.
Probably hard to answer, I know, but I’m sure some of you are rather deep in this topic, would love to hear from you.
Thank you very much! Oliver
Now, if you want to continue reading, this is my story. I hope I don’t forget anything important, I struggle with quite some brainfog today:
https://forums.phoenixrising.me/threads/40-year-old-swiss-got-cfs-after-covid-vaccine.88188/
And well, now since that story began in my introduction thread (link above) I hope the H.E.L.P. Apheresis might stop my vicious circle.
But of course, I kinda would love to know how other people have responded to this treatment, especially if I should be worried about risks. Meaning it making my ME/CFS worse.
I know some in this community have tried it themselves or follow people who did… So it would be great to know what the current state is.
I’m new to this forum. I will share my story below, but why I post this here is because I would like to have some advise or the latest information regarding the H.E.L.P. Apheresis for LongCovid AND ME/CFS.
Mainly: Are there risks involved?
Meaning do I have to fear that my state gets worse when trying H.E.L.P. Apheresis, OR is it simply either going to help or doing nothing.
Let’s ignore the financial aspect. Yes it’s very expensive and therefore questionable but I would like to focus on the medical pros and cons here.
Because I could try the H.E.L.P. Apheresis and yes, the money is a problem, but far more important is that it won’t do harm. Cause that is my concern, but I don’t know much about it and thought some of you might have gathered some information about that.
So I would love to hear of some know that it is usually well received by ME/CFS patients, meaning it helped to some degree or did nothing, OR if it actually could worsen the state.
Probably hard to answer, I know, but I’m sure some of you are rather deep in this topic, would love to hear from you.
Thank you very much! Oliver
Now, if you want to continue reading, this is my story. I hope I don’t forget anything important, I struggle with quite some brainfog today:
https://forums.phoenixrising.me/threads/40-year-old-swiss-got-cfs-after-covid-vaccine.88188/
And well, now since that story began in my introduction thread (link above) I hope the H.E.L.P. Apheresis might stop my vicious circle.
But of course, I kinda would love to know how other people have responded to this treatment, especially if I should be worried about risks. Meaning it making my ME/CFS worse.
I know some in this community have tried it themselves or follow people who did… So it would be great to know what the current state is.
bensmith
Senior Member
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@LongCovidOli - sorry you are here but happy to have you. I know some with me have gotten worse sadly, but i think some with long covid have also gotten better.
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Thank you for the warm welcome Ben.
Regarding the topic: You say "some with me"... does that mean you also tried it yourself and got worse?
Sorry my English is not perfect, so I'm not sure is what the "some with me" means.
Or are you a doctor?
Also, so you know people with ME/CFS who got worse from H.E.L.P. Apheresis? Do you also know people who got better?
Meaning, do you have any "numbers", a percentage of worsening vs. no effect vs. actually improving?
I try to evaluate what I'm risking by trying it... tough one, I know :/
bensmith
Senior Member
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No problem, some with the disease “me/cfs”
My knowledge is limited, and i don’t think we have studies yet. I know it has helped some with long covid though. And i remember one woman who did it, she had me/cfs. And she got worse, thats all i recall on the topic, hopefully others might have more.
tyson oberle
Senior Member
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- tampa, florida
Why don't you try to contact them to ask if they can check your blood beforehand to see if you have the microclots that HELP Apheresis eliminates to know if this treatment is even indicated for you?
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Thank you. I did that, but they can only do that in one sport (Mülheim an der Ruhr), which is far away from me, going there would be heavy... probably would cause a crash...
And sending blood is not possible, they said it needs to be very fresh.
The treatment itself, the H.E.L.P. Apherese, could be done rather close where I live... but they can't do the tests, so I would have to go in blind...
And therefore I wish I would know some more statistics, meaning how chances are that it could worsen my state... cause there is rather little information about that. Bummer :/
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There are no statistics. It's too soon to know for sure. I know of some ME patients trying it now, some feel a bit better some don't.
I’ll be having HELP next month in Mülheim and they found microclots and platelet hyperactivation in my blood.
From my point of view, the process is pretty safe but hard on the body. 3 to 4 hours treatment and many calories burnt. I'm expecting crashing afterwards and for what I've heard, a lot of pain on my arms.
I’m sorry I don’t have better news or more specific. We’ll have to wait I’m afraid.
Good luck with your treatment and please keep us posted!
I’ll be having HELP next month in Mülheim and they found microclots and platelet hyperactivation in my blood.
From my point of view, the process is pretty safe but hard on the body. 3 to 4 hours treatment and many calories burnt. I'm expecting crashing afterwards and for what I've heard, a lot of pain on my arms.
I’m sorry I don’t have better news or more specific. We’ll have to wait I’m afraid.
Good luck with your treatment and please keep us posted!
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May I ask how your treatment went Akasha?
Good luck in Mulheim, @LongCovidOli.
People are quite right in their replies about treatments. None of us knows how a treatment can affect us....we have every hope, expect a few not great days, but ultimately hope for improvement. Please let us know. Lenora
People are quite right in their replies about treatments. None of us knows how a treatment can affect us....we have every hope, expect a few not great days, but ultimately hope for improvement. Please let us know. Lenora
JES
Senior Member
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I wonder if this is another treatment that gets hyped (forgive me for using the word) for a while and then gets forgotten about. This tends to happen with new ME/CFS treatment paradigms like CCI. They get about a year of hype and then slowly become forgotten. Is this because the results are poor or because the improvement is just temporary? I don't know, so it would be interesting to hear more negative feedback as well if that's the case.
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Apheresis filters your blood and directs it back straight into your own body, so I don't think you have to worry about blood banks