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

[godlovesatrier]

Agreed.

 

[Learner1]

She acknowledged that maybe ME/CFS has no Fibrinogen problem.

I'm not so sure about that. It goes up and down depending on how much resveratrol I take.

 

[junkcrap50]

The more I'm in this with different researchers from different research groups the more puzzling it gets.
And since I know what Pretorius found in my blood it's z 10.000 pieces puzzle.

Well this in and of itself is good news. Pretorius found something! In your blood! Hopefully it is confirmed in ME/CFS patients too. At least it reveals more about our illness even if it's a hard puzzle. It is still arguably the most rapid progress we've made in our illness.

Can you give a guess or ETA on the ME/CFS paper by pretorius? Are we expecting a minimum of 12+ months? Or are they fast tracking it like a lot of covid papers and aiming or 3-4 months?
EDIT: Found this tweet below. ME/CFS trial won't be collecting blood until 2022.

 

[Mary]

@Martin aka paused||M.E. - I just saw this thread today - I'm so happy for you and very grateful for everyone with ME/CFS that you're able and willing to give this a try and sharing your experience in such detail!

unfortunately I couldn't talk to Dr Jaeger long enough.

BUT: She acknowledged that maybe ME/CFS has no Fibrinogen problem. We thought about why the one ME patient went from severe to mild after 13 rounds. I had the idea that it also washes away cytokines and she said that was possible bc it does.

It very well might be that filtering out the cytokines was responsible for that patient's improvement - I think this could be a very important finding, if someone can sort out whether filtering the cytokines made such a difference for the ME patient.

At home I was very tired (it was a 12 hrs day!) but not wrecked. This Apheresis doesn't cause harm.

And also I'm very glad to hear that the apheresis didn't cause you any harm! You say you were understandably very tired, but not wrecked, after your day - Would a 12-hour day ordinarily have "wrecked" you? I would have crashed after a 12-hour day (I'd crash after a 5 or 6 hour day!) So did you feel better than you should have the next day, or just the same as usual?

 

[Gingergrrl]

We thought about why the one ME patient went from severe to mild after 13 rounds. I had the idea that it also washes away cytokines and she said that was possible bc it does.

Do they think it could also be washing away autoantibodies (as another possible explanation in specific patients)? Also congrats on being a pioneer with trying this treatment, Martin, and I wish you the best moving forward.

 

[ljimbo423]

It very well might be that filtering out the cytokines was responsible for that patient's improvement - I think this could be a very important finding, if someone can sort out whether filtering the cytokines made such a difference for the ME patient.

I agree. I did a little research and found that it also filtered out cytokines. Maybe it was the filtering of cytokines that caused that patients improvements.

If ME/CFS is caused by a self-perpetuating inflammatory cycle, as ME/CFS researcher Michael Maes has suggested. It could be that lowering inflammatory cytokines in that patient long enough (she did 13 rounds of treatment), allowed her body to heal some. Moving her from severe to mild ME/CFS.

 

[perrier]

Ladies and gentlemen,

first of all: a million thanks to your posts, especially @YippeeKi YOW !! you know the thing with the fan is both sided!

Now the update:
It was an incredibly stressful day but I'm grateful for the people I met and hope to see again. Dr Jaeger and the stuff is great and I saw my friend Asad for the first time.

........
BUT: She acknowledged that maybe ME/CFS has no Fibrinogen problem. We thought about why the one ME patient went from severe to mild after 13 rounds. I had the idea that it also washes away cytokines and she said that was possible bc it does.

....

Martin

I am thinking about this sentence regarding the one ME patient who went from severe to mild after 13 rounds. Are we to understand that she had no microclots? this patient? Dr Jaeger would know what was in this lady's blood, for sure. I am a little puzzled by this. But I understand that so much was going on and the clinic is so busy that not everything gets addressed. Thanks for all the work you are doing.

 

[Strawberry]

I find this theory fascinating (as well as @Gingergrrl comment of autoantibodies) as I’ve been told I have thick blood and unusual sized platelets. I take baby aspirin morning and night, and don’t have issues with bleeding still. Following! And best of luck to you @Martin aka paused||M.E. !

 

[andyguitar]

I agree. I did a little research and found that it also filtered out cytokines. Maybe it was the filtering of cytokines that caused that patients improvements.

It's an interesting possibility @ljimbo423 as if that is the case then it would suggest that the disease is simply a case of, cytokines=inflammation=cytokines=inflammation and so it goes on. So no need for a persistent pathogen. If the researcher are diligent in their investigations it should'nt be hard to work out what is/is'nt going on. Just take some blood before the treatment and do a cytokine profile the another after treatment. And one a month later, to rule out the possibility the heparin brought about any improvement.

 

[Consul]

But it would have removed Martins cytokines as well then but that didnt help.

 

[andyguitar]

But it would have removed Martins cytokines as well then but that didnt help.

If he had any.

 

[SlamDancin]

I find this theory fascinating (as well as @Gingergrrl comment of autoantibodies) as I’ve been told I have thick blood and unusual sized platelets. I take baby aspirin morning and night, and don’t have issues with bleeding still. Following! And best of luck to you @Martin aka paused||M.E. !

How may I ask did you get that diagnosis?

 

[ChookityPop]

I find this theory fascinating (as well as @Gingergrrl comment of autoantibodies) as I’ve been told I have thick blood and unusual sized platelets. I take baby aspirin morning and night, and don’t have issues with bleeding still. Following! And best of luck to you @Martin aka paused||M.E. !

Do you have antiphospholipid autoantibodies causing the thicker blood?

 

[Martin aka paused||M.E.]

If he had any.

I do.

 

[SWAlexander]

This is what scares me most. "Microthrombi and/or microbleeds in Splenium - "Slowing of their though-processes/thinking"

2/ CT shows no abnormalities in lungs, yet pats have clinical disease, Xenon-gas studies showed reduced oxygen uptake in lungs - we don't know why. Prof Gleeson
@UniofOxford running these studies, important research as any.

 

[lenora]

High cholesterol can cause some of these same factors. I have 6 stents, take herparin and baby aspirin as well as a stain drug....and it's still hanging around the 300 mark. It's called familial high cholesterol and, indeed, all of my brothers and sisters have/had it. 7 are now dead, but not one died of heart problems, while my father died at age 40. I've had a mild heart attack.

It's just one more thing that I have. I eat extremely well....no dairy products to speak of (except may 1 tsp. of milk in tea) and I've had it since they first started testing my cholesterol.

My mother drank nothing but whole milk, loved cream and butter and cheese as fast as one could buy it. She had low cholesterol. Sometimes there's no figuring it....just put it down to genes. If your diet is bad, then at least try to do something about it, it's possible to eat well and be restrictive.

Of course I'm sure that no one believes I eat the way I do.....but! Yours, Lenora.

 

[Judee]

At home I was very tired (it was a 12 hrs day!) but not wrecked. This Apheresis doesn't cause harm.

@Martin aka paused||M.E. The fact that you said you were "not wrecked" seems encouraging. Do you think so too?

Also I think someone asked you if you were on blood thinners ahead of time and you said no, right? But when they did this they also did the heparin treatment first, correct? Just trying to get clarification.

I'm also wondering if they discussed with you at all how they will come up with a way to tell who this would be helpful for, if only a subset possibly?

Did they test you for anything like that ahead of time like some of the tests mentioned in this thread and others... APS for instance?

Also will you be getting more of these treatments?

Sorry, if someone asked you these questions already. If you want to have @Push Fwd answer instead, that's okay with me...just in case you're in a PEM crash.

 

[junkcrap50]

It's called familial high cholesterol and, indeed, all of my brothers and sisters have/had it. 7 are now dead, but not one died of heart problems, while my father died at age 40. I've had a mild heart attack.

Why haven't you tried or done or are doing HELP Apheresis? It previously was used solely for familial hypercholesterolemia. You could even use that as a reason to try it for ME/CFS.

Also I think someone asked you if you were on blood thinners ahead of time and you said no, right? But when they did this they also did the heparin treatment first, correct? Just trying to get clarification.

Correct. He was not on any blood thinners ahead of time. I asked him.

I believe the "heparin treatment" is contained within the apheresis machine. No heparin is introduced into the body, before, during, or after. The blood is taken out of body, separate plasma from blood, heparin is added, filter HELP of plasma, then filter heparin out/absorbed, plasma added back to blood, blood back into body.

However, they may be doing something a little differently for LC and might be given heparin to the patient too during the treatment. I don't know about that, but it is possible. (EDIT to ADD: I haven't seen anything like that mentioned on twitter from Khan, Marek, etc.)

 

[SWAlexander]

I believe the "heparin treatment" is contained within the apheresis machine. No heparin is introduced into the body, before, during, or after.

This is what I understand. Maybe Martin knows details?

 

[junkcrap50]

This is what scares me most. "Microthrombi and/or microbleeds in Splenium - "Slowing of their though-processes/thinking"
View attachment 45764
2/ CT shows no abnormalities in lungs, yet pats have clinical disease, Xenon-gas studies showed reduced oxygen uptake in lungs - we don't know why. Prof Gleeson
@UniofOxford running these studies, important research as any.

I saw this too on twitter. Crazy stuff. I wonder if they had to do anything special with the MRI to see the microclots like dyes or mri settings or 7Tesla mri? Lots of ME/CFS patients have had MRIs for various reasons, this wouldn't have been missed in ME/CFS (if it occurs) unless it requires a different setup.