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

[whiskytrot]

Thank you very much for the report and undergoing the treatment to find out more info for the community.

'One thought on why ME/CFS patients may not collect much fibrin in the help apheresis filter, at least initially. ME/CFS patients may have more of the fibrin laid down along the blood vessel walls instead of freely floating microclots, due to the length of their illness and/or clearance of the microclot instigator, ie, virus.'

This was the first thing I thought of when I heard what had happened yesterday. Most ME patients have had ME far, far, longer than LC has been around. if the fibrin adheres and hardens on the lining of the blood vessels the disease's pathology may be changing over time? Sigh The patience needed over this is unfolding research is worse than waiting for NICE LOL! Dear heavens. Lets not lose hope.

 

[whiskytrot]

I also wonder if there was any difference in the three patients with regard to their covid antibodies and vaccinations (and blood type?).

 

[bensmith]

Interesting thanks. I wonder if id see benefit since i got me from covid. Assuming that these folks are different.

 

[andyguitar]

micro-clots may still be present, but be more organised at the margin of capillaries in long-term (or just some) ME. They may be less available to clearance by apheresis if less of the load reaches the venous blood. In that case anti-coagulation may be more useful than apheresis.

Or the micro clots might just be in one very small area of the brain. The drug Nimodipine has been reported as being useful for me/cfs (also used for migraine). No clinical trials of it (for me/cfs) but it's come up often enough to suggest there is a real benefit from it. If I remember correctly it improves blood flow in the brain. Another thing worth pointing out is the probable benefits of Abilify which seems unlikley to be of use against micro clots directly, but which might be of use if microclots were present in that very small region of the brain and interfering with dopamine receptors.

 

[Martin aka paused||M.E.]

To me, the possibilities would seem to be:

1. LC is not ME (but has symptom overlap)
2. LC is ME but not all ME has the same pathogenesis as LC

Yep. That's the biggest piece of the puzzle now. I am not allowed to talk about details because it could compromise the study but I can tell you that we all now have to puzzle a lot.

What I am allowed to say is what I already told William Weir: LC may lead to ME, but it's not the same and ME/CFS is an umbrella term for a) many subsets or b) many illnesses who look the same. I told him that he needs better methods in the future (did that politely, don't worry). He agreed on that.

So, in the end we have to rethink many things. I don't want to mention a certain name or project but many findings have to be downstream effects and what happens in Germany atm is more than promising.

Last, not least I want to say: there wouldn't be so much good science without Jaeger, Pretorius and the Apheresis guys from the UK.

I put everyone in my heart and we will continue to work together. Then maybe with my NGO, too, if the board - me and a few others - and the medical advisory board think it makes sense.

 

[godlovesatrier]

Totally agree. So many bloody subsets. How are we meant to navigate all the potential treatments and select the right ones. Two years ago we were demanding biomarkers after the nanoneedle and we still need the same to discern subsets.

I think until then it's going to be pretty hit and miss and a case of interogating your own medical history and blood tests to dicipher what you might have.

Certainly uses up our previous energy stores and sanity that's for sure.

 

[perrier]

Thanks Martin, really herzlichen Dank! Subsets seems to be the conclusion. Most interesting would be to know if the lady who had ME for 7 years, and after Apheresis was alleviated had microclots. When do you think this information will be public? Also, I understood that aside from you there was another patient with ME who had treatment. No news on that one. Also, I read (not sure of fact)that Dr. Pretorius is now looking at ME blood in SA. And that she plans an ME Apheresis trial in SA. Was any of this confirmed? Hard to know what is hearsay and what is fact, these days.

Determining blood clots should be relatively straight forward, shouldn't it? Although Pretorius etc say a fluorescent microscope is required.

Thanks again.

 

[Martin aka paused||M.E.]

Thanks Martin, really herzlichen Dank! Subsets seems to be the conclusion. Most interesting would be to know if the lady who had ME for 7 years, and after Apheresis was alleviated had microclots. When do you think this information will be public? Also, I understood that aside from you there was another patient with ME who had treatment. No news on that one. Also, I read (not sure of fact)that Dr. Pretorius is now looking at ME blood in SA. And that she plans an ME Apheresis trial in SA. Was any of this confirmed? Hard to know what is hearsay and what is fact, these days.

Determining blood clots should be relatively straight forward, shouldn't it? Although Pretorius etc say a fluorescent microscope is required.

Thanks again.

I did not have the chance to talk to her sadly. She found sth yes. I wish I was allowed to tell you what.

 

[ljimbo423]

Subsets seems to be the conclusion.

While I agree that there are many subsets in the way ME/CFS symptoms are presented, I don't think that means there are many root causes. Even though there are many different "triggers", I think there is primarily one root cause.

Since ME/CFS affects almost every system in the body, maybe every system, (including the brain), it makes sense that symptoms would very, sometimes dramatically, from person to person.

A persons genetic makeup, diet, lifestyle, past infections-etc, (epigenetics) all shape a persons immune system, endocrine system and all other systems in the body. I think these genetic and epigenetic factors cause symptoms unique to that person, but with the same root cause in most of us.

Given these different presentations, I'm very interested in seeing how H.E.L.P. might help those of us with ME/CFS.

 

[perrier]

Totally agree.

Certainly uses up our previous energy stores and sanity that's for sure.

This is brilliantly put indeed: and a person can start to go insane as he/she endures all the symptoms and the inability of research to come up with the etiology. Nevertheless, I am still questioning on what basis Pretorius is doing the ME study (if she will do it) in SA? She must have looked at some blood, or why would she do this? Any answers more than welcome.

 

[godlovesatrier]

From what I can gather she must have found something in the blood. Or as you say wouldn't be doing it. Mind you I've only just learnt about this today so it's all very new to me. I am sure someone else knows more than I do.

What annoys me is...is it just another bloody rabbit hole. To be less pessimistic I think with all the research going on we could well see several more breakthroughs over the next few years and indeed the next 6 months as to blood based issues. I certainly hope so anyway.

 

[junkcrap50]

Yep. That's the biggest piece of the puzzle now. I am not allowed to talk about details because it could compromise the study but I can tell you that we all now have to puzzle a lot.

As long as there are new pieces discovered to work with, that's still a big win.

Last, not least I want to say: there wouldn't be so much good science without Jaeger, Pretorius and the Apheresis guys from the UK.

Hear, hear!

Nevertheless, I am still questioning on what basis Pretorius is doing the ME study (if she will do it) in SA? She must have looked at some blood, or why would she do this? Any answers more than welcome.

I think she is doing it just out of good intentions & pure investigation. Because LC & ME/CFS are very similar/have a lot of overlap. And I believe from what I've read on twitter that she and others, including LC patients, are sincere that they don't want to leave ME/CFS patients behind. They now understand and feel what it's like to have an invisible illness & frustrated with doctors & research, despite just a short amount of time.

 

[Martin aka paused||M.E.]

I think with all the research going on we could well see several more breakthroughs over the next few years

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.

 

[Shanti1]

@Martin aka paused||M.E. Thank you for sharing your experience with us, it is so valuable. I hope you get benefit from the treatment, what they found, and being able to converse with these great researchers. You have definitely fought for it and your persistence is an inspiration. I'm wishing and hoping for the very best.

 

[lenora]

Hello @Martin aka paused||M.E. - I'm sure that yesterday left you totally exhausted, but hopeful that something will work.

Tell us what you can when you're able. We all have enough patience and understanding of that process. I'm sure you've learned a lot that most of us don't/won't have an understanding of. Good for you! Yours, Lenora.

 

[Martin aka paused||M.E.]

@Martin aka paused||M.E. Thank you for sharing your experience with us, it is so valuable. I hope you get benefit from the treatment, what they found, and being able to converse with these great researchers. You have definitely fought for it and your persistence is an inspiration. I'm wishing and hoping for the very best.

Thank you very much

 

[Marylib]

@Martin aka paused||M.E. I hope it works out really well for you.

 

[SWAlexander]

Hi Martin.
When you posted on Twitter: “I will not live long because I am too seriously ill with #MECFS ... so I dedicate the rest of my life to ME/CFS and related diseases.” I was very scared for you.

Maybe we all should write in chronological order, what could have been the eventual trigger, or how this illness begun.

 

[godlovesatrier]

Not sure if we have official mortality rates for severe. But while severe is a spectrum in itself it would make for dark reading.

I don't mean to be morbid or upset anyone but we've spoke about data before and the lack of it. If we had data for severe patients and number of years taking mortality into account that could be compelling? If that didn't wake people up nothing would? 🤷

 

[SWAlexander]

Not sure if we have official mortality rates for severe. But while severe is a spectrum in itself it would make for dark reading.

I don't mean to be morbid or upset anyone but we've spoke about data before and the lack of it. If we had data for severe patients and number of years taking mortality into account that could be compelling? If that didn't wake people up nothing would? 🤷

In 2000 my editor told me "nobody can read this (dark reading) without getting depressed - you must write a happy ending".
I told him - there is no happy ending, there is only reality.