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

[SWAlexander]

I think there are really interesting things now going on showing that my theory that most users here hate is not so wrong: we don't have the same pathology... ME/CFS is an umbrella term. The only thing that is congruent is the symptoms...

This could be the reason why many doctors can't relate or are reluctend to diagnose ME/CFS.
What is included in the big list of symptoms we could show doctors?

 

[perrier]

This could be the reason why many doctors can't relate or are reluctend to diagnose ME/CFS.
What is included in the big list of symptoms we could show doctors?

The thing is that many ME patients have really done the rounds, done hundreds upon hundreds of tests, seen many specialists, and nothing has turned up. So, what manner of illnesses are these that no one seems to be able to pick up. And some of us have travelled the world seeking out help, and none was forthcoming.

 

[Martin aka paused||M.E.]

Is there anything the rest of us could have tested?

I will answer to this as soon as I have the permission

 

[lenora]

Hi @Martin.....So you're off to S. Africa now? I hope you're feeling somewhat better, hope always does that to us.

May I ask what your cholesterol levels are? Also, were they always at or about the same level? Anyway, best of it all as you embark on this hopeful new journey. Yours, Lenora.

 

[Martin aka paused||M.E.]

Hi @Martin.....So you're off to S. Africa now? I hope you're feeling somewhat better, hope always does that to us.

May I ask what your cholesterol levels are? Also, were they always at or about the same level? Anyway, best of it all as you embark on this hopeful new journey. Yours, Lenora.

My blood is off to SA.
My cholesterol is about 160. so high but not too concerning . My LDL cholesterol is higher but I don’t know how high it was at the last lab test.

 

[lenora]

Interesting....my cholesterol is also high and the good one (I always forget) is much lower. As I've aged it has become worse....so one would think that apheresis would help that, wouldn't you?

So your blood gets to make the trip alone. Well, just as well as I know you could get easily tuckered out. I hope things will work out for you....you've certainly tried. It's good to see you smiling with you hood up again....here's hoping that translates to your mind. Thanks. Yours, Lenora.

 

[Martin aka paused||M.E.]

Collaboration

 

[Breagjam]

Collaboration View attachment 45872

Y’all are an inspiration! I’d have like to have been a fly on the wall in that conversation 😊

 

[lenora]

@Martin aka paused||M.E. .......You do realize that you're an inspiration to all of us, don't you? I can see that the two of you hit it off, and that's just great. Take care Martin, and don't overdo it. Yours, Lenora.

 

[Martin aka paused||M.E.]

@Martin aka paused||M.E. .......You do realize that you're an inspiration to all of us, don't you? I can see that the two of you hit it off, and that's just great. Take care Martin, and don't overdo it. Yours, Lenora.

I don't know if I'm an inspiration. But thank you. I just know that I'm not the only one and as a lawyer, I have a strong feeling of justice: no one should be damned to rot in their beds.

 

[YippeeKi YOW !!]

I don't know if I'm an inspiration.

You totally are !!!

 

[Martin aka paused||M.E.]

The thing is that many ME patients have really done the rounds, done hundreds upon hundreds of tests, seen many specialists, and nothing has turned up. So, what manner of illnesses are these that no one seems to be able to pick up. And some of us have travelled the world seeking out help, and none was forthcoming.

You make an important point here. So, I think it's possible that we don't have the tools (technology) yet to catch or recognise the responsible molecule. But what we can do is measure the outcome of X. And then theoretically go back to the cause. And if we have done that and a (good) computer simulation showed that the theory is reasonable, then we can go on and try to falsify the theory. The best case is that we can't falsify it because we have then done a drug study that proves the theory.

 

[SWAlexander]

I don't know if I'm an inspiration.

Yes you are. Thank you.

 

[SWAlexander]

Ebba Biotech Webinar: Prof. Resia Pretorius (21.11.25)

 

[GlassCannonLife]

Anything interesting you can share from the discussion with Dr Khan @Martin aka paused||M.E. ?

Or are there any updates on your plans with this treatment - waiting to test/investigate the other things they found in your blood?

 

[Martin aka paused||M.E.]

Anything interesting you can share from the discussion with Dr Khan @Martin aka paused||M.E. ?

Or are there any updates on your plans with this treatment - waiting to test/investigate the other things they found in your blood?

Unfortunately no. And nothing I could openly share.
I'm still waiting for Dr Jaeger to call me back.

 

[lenora]

The tests today are so sophisticated compared to when we started this journey. It's almost like another language as more and more things have been discovered.

One things that hasn't changed is the heartbreak this illness causes. We're all grateful for those who travel and report back to us on the newest technologies, what has/hasn't worked for them....and rest assured that there will be plenty of new things in the years to come. Thanks to those who try. Yours, Lenora.

 

[SWAlexander]

I know for sure German doctors don't care. This time it is not about me. My friend´s husband Lab results (4 month ago) showed Factor 8, posible von Willebrand factor (VWF) (X Chromosome). No explanation, no fallow up, no nothing. I am so mad.

 

[Marylib]

Thanks @Martin aka paused||M.E. . Hoping for the very best for you and thanks for sharing. I've never understood why everything has to be such a secret? But maybe that's my naivete in terms of commercial products and patent applications.

 

[Martin aka paused||M.E.]

But maybe that's my naivete in terms of commercial products and patent applications.

Because it contains unpublished data and I'm not the one to decide because it's not my study.