Is Apheresis an effective treatment for Long Covid and ME?

[bensmith]

Ok to clarify, dr asad is saying that me and long covid are not being allowed physical medicine if they are diagnosed with a variety of issues, including me, autism etc. under nhs rules.

I believe that is what country girl posted. I was brain foggy earlier and still am lol.

 

[bensmith]

Sorry martin thats stupid! I am having similar trouble with a doctor in dallas, texas. I call them constantly and they will not get back to
Me. It’s terrible.

 

[BrightCandle]

The same happened to me with Dr William Weir. I chased him a bunch in 2019 but I gave up after the 6th call to try and get an appointment. Seems to be a trend with doctors specialising in ME, they seem to be overloaded and not the best organised, not sure why that is but its a common trend.

Still until we see papers for LC and ME sufferers getting cured and to what extent its a bit early to be worrying about how it gets rolled out, its exciting that potentially points to the problem and an answer but we are still pre paper.

 

[bensmith]

On the usa help facebook group, they say you can take aspirin for a few weeks then donate plasma. They say this should be similar/the same as help. No idea if true.

 

[Breagjam]

What the hell… why? This is really sad to hear. So was martin seen before they implemented this policy?

Any movement on getting this treatment in the us yet? I know officially no but still thought i’d ask.

Hey Ben, this was a tweet from Asad Khan (British citizen) with an attachment showing the crazy policies of the NHS (British medical service) and Asad was mad about it, it wasn’t his policy
Doesn‘t have anything to do with HELP apheresis, I don’t think….

 

[5vforest]

On the usa help facebook group, they say you can take aspirin for a few weeks then donate plasma. They say this should be similar/the same as help. No idea if true.

If this is true, then plasmapheresis would also be an effective treatment. From what I understand of the biology (very little), plasmapheresis would indeed remove the clots. But I have also seen posted that plasmapheresis might not have the same effect as HELP apheresis.

I call them constantly and they will not get back to
Me.

This seems to be very standard. I guess there is just such high demand for good ME specialists that they are even more overloaded than most other docs. See this thread: https://forums.phoenixrising.me/thr...-be-less-scattered-and-more-responsible.85692

 

[bensmith]

This doctor was a normal doctor(well a functional) but yeah : (

The group seems to think that help is basically gold standard, and that eoo inus and plasma donations would be some level under that. Not as effective but certainly more accessible. Gotta worry about passing the blood on, but apparently they should check your blood and dump it? I cant remember the reasoning

 

[Countrygirl]

Sorry, I think he refers to the apheresis team. That they won’t accept you for the list if you have severe ME

There seems to be some confusion here. That post was referring to the NHS Long Covid clinics stating they will not include anyone who also has autism, or is receiving help for a mental health condition, or who has severe ME. plus some other exclusions They are basically excluding anyone who is ill and are gearing up to just see the worried well, it seems.

 

[bensmith]

I saw on reddit of negative censorship on some of the help facebook groups. Of people posting their negative experiences and the posts getting deleted.

I also heard about the “list” not being true as well. People just calling and going.

Also hearing that help will likely not help neuro issues. Asking for screens of them saying such atm.

 

[GlassCannonLife]

On the usa help facebook group, they say you can take aspirin for a few weeks then donate plasma. They say this should be similar/the same as help. No idea if true.

Maybe tell them to throw it out though! Lol

Edit: just saw you mentioned that further down

 

[bensmith]

I have an ex girlfriend who runs a plasma donation center. Yeah def want them to toss it. Not sure if she would help me or not. Apparently they are supposed to throw out our blood for some reason anyway

i should clarify it should be a poor mans version if help. But maybe some improvements can be seen.

 

[5vforest]

There are some places where you can get private-payer plasmapheresis in the US, the problem is that it's quite expensive to do more than once.

Also worth clarifying how much plasma is being removed.

Maybe removing 750ml of plasma isn't enough, and that's why "apheresis is necessary." (In the words of whoever is saying this.)

 

[bensmith]

Is this different than donating plasma?

apparently it is. Which is why it costs. Wish i wasnt bed bound so i coukd at least try the plasma route.

 

[SWAlexander]

As we all know by now Dr. Jaeger´s waiting list is very long.
So, I started writing to different Apheresis providers asking if they would/could provide Heparin-Apheresis, in addition to their specialty Apheresis such as CRP, high cholesterol, leukemia etc.

In my email to all I asked specifically about my problem: "Is your facility equipped to remove F2 – F10 (von Willebrand factor)." We should mention what kind blood issues we have.
I don´t have any answer yet, but if many people would write, it may pushes the subject/issue and encourage facilities and hospitals to adjust their already existing equipment.

In addition, I wrote to the Company Pentracor GmbH, asking if their blood filter approach could be helpful in in ME/CFS patients with different blood issues.
Phone number: +49 (0) 3302 20 94 49 – 0
Neuendorfstraße 23 b / d
16761 Hennigsdorf (Germany)
E-Mail info@pentracor.de

Here are some other contacts:
Healthcare in Europa
CRP apheresis: First successful treatment of Covid-19 patient
https://healthcare-in-europe.com/en...sfully-treatment-of-covid-19-patient.html#top
different country contacts: https://healthcare-in-europe.com/en/contact/

Peter MacCallum Cancer Centre
305 Grattan Street
Melbourne VIC 3000 Australia
https://www.petermac.org/services/treatment/haematological-treatments/apheresis/what-apheresis

Apheresis Safety for high-risk patients
B. Braun Melsungen AG
Carl-Braun-Straße 1
34212 Melsungen, Hessen
Germany
https://www.bbraun.com/en/products-and-therapies/extracorporeal-blood-treatment/apheresis.html

Please understand that I´m only sharing my activity without expecting others to engage, if they don´t find it helpful.

 

[junkcrap50]

and that eoo inus and plasma donations would be some level under that

What is "eoo inus" ?

I've seen INUS aphersis or "INUSpheresis," which claims to be able to remove many different things from the blood. But is only found in functional medicine/integrative/CFS/lyme type "clinics" in europe, so it appears to have less credibility.

I saw on reddit of negative censorship on some of the help facebook groups. Of people posting their negative experiences and the posts getting deleted.

Link? What subreddit? I haven't seen it on /r/covidlonghaulers.

On the usa help facebook group, they say you can take aspirin for a few weeks then donate plasma. They say this should be similar/the same as help. No idea if true.

Looking for the mentioned censorship and negative experiences, I found this post, where this vaccine injured individual had success with plasma dilution via plasma donation.

https://www.reddit.com/r/covidlonghaulers/comments/oo6eev

Right now, I’m currently at two plasma donations, July 6th and july 16th (22% of my plasma each time), and I’ve seen improvement on each of my symptoms, each time. I might do a third plasma donation soon to see if I can get even better. I’m still not 100%, so I do not want to sugarcoat this.

 

[junkcrap50]

So, I started writing to different Apheresis providers asking if they would/could provide Heparin-Apheresis, in addition to their specialty Apheresis such as CRP, high cholesterol, leukemia etc.

In my email to all I asked specifically about my problem: "Is your facility equipped to remove F2 – F10 (von Willebrand factor)." We should mention what kind blood issues we have.
I don´t have any answer yet, but if many people would write, it may pushes the subject/issue and encourage facilities and hospitals to adjust their already existing equipment.

It's a good idea. As it's a big potential market for long covid sufferers and there's lot of COVID research funding available.

If you're up to writing letters, try Cytosorb:

I wonder if CytoSorb (https://cytosorb-therapy.com/) is thought to be used in Long Covid patients. It has been used in many studies for severe Covid (https://cytosorb-therapy.com/en/covid-19/). With the sudden new interest of HELP apheresis, and HUGE demand for it, I wonder if Cytosorb's company would be interested in studying it with Long Covid. It's available around the world, most commonly in Germany/Europe & India. But it is still only granted emergency use authorization.

There may be still more to filter out besides the microclots, for those that don't respond to help apheresis. And hopefully ME/CFS patients can piggyback off the long covid demand.

It would be a big money maker for them. Right now there's 7,000 patients on the help apheresis waiting list, with each infusion costing $1300, totaling $9.1 million. Then multiply the how many infusions/sessions are needed, say average of 5, that's $45.5 million or more. I don't see why there wouldn't be 7,000 more Long Covid patients signed up for several Cytosorb sessions. There's huge demand for LC treatment.

It would also be easier for patients and much more widely available. All it needs is a simple blood pump, looking at some of the pictures. So nearly any place could do it.

I may try to draft a letter to Cytosorb describing the potential and the current research/treatment with HELP Apheresis. It could also be sent to doctors or clinics in Europe who use Cytosorb. I'd gladly let anyone else who is better at writing than me write it as well.

Anyone on twitter could share it to the #TeamClots people as an FYI and possible solution for those nonresponsive to HELP.

 

[SWAlexander]

junkcrap50
I´m not sure that there are 7,000 patients on the help Apheresis list. If yes, are they qualified for this special treatment, according to their underlining condition?
Example: only one person I know, besides me, had a test for von Willebrand factor (mentioned by Dr. Pretorius).

We need to do the preliminary work by asking doctors for special blood tests.
As much as I like to see Dr. Jaeger as a patient, she has her specialty and I respect this.
This is the reason we need specific blood tests to know what we need treatment for, and find a provider with credentials.
BTW, Plasma Dilution will not remove CRP or any other marker, if specialty filters are not installed.

 

[BrightCandle]

We need to do the preliminary work by asking doctors for special blood tests.

This I think is key. We need the blood test available so we can assess this more widely in the ME community. Just like with the CBIS and urine samples I am firmly of the belief we need to understand how many people pass the test for this problem. Alas since the plasma test isn't normal its not going to be easy to get it done at the moment. So much of this is happening backwards at the moment and there are millions of people wanting a treatment/cure. I hope the basic process gets sorted once the paper is released.

 

[Judee]

they say you can take aspirin for a few weeks then donate plasma

I would say to please be careful with aspirin. Even 8 weeks after stopping it a person's risk of heart attack and/or stroke goes up 37%. It has a rebound effect.

Maybe better to use nattokinase or lumbrokinase, even possibly grape seed instead.

Anyway, something to research.

Ken Lassessen talks about supplements for thick blood here: https://cfsremission.com/2015/09/08/thick-blood-supplements-for-cfs/

 

[smithsj]

Is anybody here in/around New York City and wants to help me try to convince some doctors here to try looking for clots? I've found that it helps to have a few people ask. If so, let me know and we can discuss.