Martin aka Paused and H.E.L.P treatment

[andyguitar]

Does anyone know if HELP apheresis is more efficient at removing micro clots than the available anticoagulant medications?

With a bit of luck we should know in the coming months if Apheresis is needed to remove any micro clots in me/cfs patients. Just depends on what the researchers find. It might turn out that drugs can do the job. Supplements might only go as far as making things a bit better.

 

[Judee]

I’m working on this for months now and it’s time to share it with researchers. I don’t feel this would be a dead end again.

@Martin aka paused||M.E. I'm not on Twitter. Did you ever get an answer from any of the ME researchers on this question?

 

[Martin aka paused||M.E.]

@Martin aka paused||M.E. I'm not on Twitter. Did you ever get an answer from any of the ME researchers on this question?

Never. But I will discuss it with Jaeger next month.

 

[Marjoleine]

How are you doing Martin? You got your second Help treatment, didn’t you? Did is provide some improvements already, even the tiniest? I sincerely hope so!

 

[Martin aka paused||M.E.]

How are you doing Martin? You got your second Help treatment, didn’t you? Did is provide some improvements already, even the tiniest? I sincerely hope so!

I’m ok. Still severe. I get my second treatment in February

 

[Marjoleine]

I’m ok. Still severe. I get my second treatment in February

Ah, I must have misunderstood or misread something, I thought you already had your second. Hang in there and I hope for some good result in feb. Btw, Congrats on the foundation you are working on.

 

[SWAlexander]

I’m ok. Still severe. I get my second treatment in February

Hi Martin. May I ask if you have arthritis as an underlining condition?

 

[Martin aka paused||M.E.]

Hi Martin. May I ask if you have arthritis as an underlining condition?

I haven’t

 

[Sizzle]

With a bit of luck we should know in the coming months if Apheresis is needed to remove any micro clots in me/cfs patients. Just depends on what the researchers find. It might turn out that drugs can do the job. Supplements might only go as far as making things a bit better.

 

[elvira]

View attachment 46740

View attachment 46741

It’s so exciting!!! I wonder how many subjects the study involves.

 

[Sizzle]

From an earlier message I believe they wanted 60 people

 

[HealingFalcon]

Maybe, I am still possible within my natural variance but its been a few months of improvement and if I have PEM now its much larger energy window than I had before, I can do activities with my day. I loathe to really say something is working nowadays because the way this stupid disease works is you have ups and downs and unless it just clearly straight up cures you in a month its too subtle and I am at any given point trying a bunch of different things. There is some OK science behind the microclots and having looked at my blood in a microscope I am confident I have clots in my blood but the challenge is really its not accurate enough to say I am making progress yet only that I still have them.

Did you compare your own blood with that of a healthy control? I saw a few posts on twitter where people said what they thought looked like clots was actually also seen without blood on an empty slide.

And how fast after the blood draw was your blood prepared and observed under the microscope? My lab said that even with sodium citrate tubes it has to be centrifuges shortly after and frozen or observed immediately to prevent normal blood clotting and thus potentially false positives...

 

[HealingFalcon]

I think so. It’s bc I’m in the Pretorius study, so the most important part is the second blood work. But I have a slot at 1100…

You mentioned that your first blood draw was send to South Africa. Do you happen to know if they didn’t look for blood clots until SA? Because to my knowledge the blood has to be prepared directlyb and frozen at -80°C to be able to prevent normal blood clotting and it is very unstable when transported otherwise. Did they use a specific delivery service?

 

[Sizzle]

Did you compare your own blood with that of a healthy control? I saw a few posts on twitter where people said what they thought looked like clots was actually also seen without blood on an empty slide.

And how fast after the blood draw was your blood prepared and observed under the microscope? My lab said that even with sodium citrate tubes it has to be centrifuges shortly after and frozen or observed immediately to prevent normal blood clotting and thus potentially false positives...

Found this document; doesn't mention any freezing
I believe the total process (blood drawn until looking at it under the microscope) should be done within 3-4 hours

 

[Martin aka paused||M.E.]

You mentioned that your first blood draw was send to South Africa. Do you happen to know if they didn’t look for blood clots until SA? Because to my knowledge the blood has to be prepared directlyb and frozen at -80°C to be able to prevent normal blood clotting and it is very unstable when transported otherwise. Did they use a specific delivery service?

Pretorius was there in Mühlheim when she looked at my blood in the fluorescence microscope

 

[HealingFalcon]

Found this document; doesn't mention any freezing
I believe the total process (blood drawn until looking at it under the microscope) should be done within 3-4 hours

Yes the earlier the better but I believe 3 hours would be sufficient...
The document you send states 3000rpm but in Pretorius paper they say 3000g. Something to mind...

 

[Countrygirl]

The Daily Mail covers Asad's story and HELP apheresis.
See how many errors you can spot.

https://www.dailymail.co.uk/health/...PqJGKYGBGO4u6Tjgu240KIZhS0mDovkfKv2eYJEO0irAI

 

[perrier]

The Daily Mail covers Asad's story and HELP apheresis.
See how many errors you can spot.

https://www.dailymail.co.uk/health/...PqJGKYGBGO4u6Tjgu240KIZhS0mDovkfKv2eYJEO0irAI

Well, it is the Daily Mail ))--but it does get the story out there, errors and all !!! Thanks for posting.

What I really liked was this comment by Dr. Khan:

'While acknowledging the importance of treatment based on evidence, Dr Khan adds: "That usually takes years to complete. We don’t have years, this is a crisis now."'

We rarely see this sort of stance about the hundreds of thousands sick and bedbound and suffering from ME--suffering for years and years, unable to work or do much of anything
Bless Dr. Khan.

 

[Countrygirl]

Professor Pretorius has tweeted this article:

What causes long Covid? Scientists are zeroing in on the answer.
“We are really working day and night” to figure out long Covid, one researcher said.

https://www.vox.com/22906853/omicron-long-covid-vaccinated-symptoms-cause

 

[Countrygirl]

This is a German news item about Dr Jaeger and the Mulheim clinic. It has an English translation.

At the end, Dr Jaeger explains how she has been receiving criticism from the medical community about her work, and she mentions, in particular, a psychiatrist who is annoyed that she is undermining the theory that Long Covid is anxiety.