Is me/cfs a blood disorder?

SNT Gatchaman

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do microclots address why there is widespread collagen breakdown and issues with connective tissues?
This may be the opposite side of the question you're asking. But some platelet receptors involve collagen - I think the idea being that when exposed to collagen from damaged endothelium, they activate, to promote clot formation.

Presumably EDS collagen either has more receptor affinity or has more opportunity to activate platelets via these receptors. That could explain the association between EDS and ME / POTS etc.
 

Oliver3

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This may be the opposite side of the question you're asking. But some platelet receptors involve collagen - I think the idea being that when exposed to collagen from damaged endothelium, they activate, to promote clot formation.

Presumably EDS collagen either has more receptor affinity or has more opportunity to activate platelets via these receptors. That could explain the association between EDS and ME / POTS etc.
Ive been thinking how much regenerative medicine, crisper and stem cells will play in our recovery..
Has anyone seen the work of Liz Parrish. She's trying to stop her son's type one diabetes so has become patient zero. She's 50 but has readded muscle, relengthened her telomeres and brought her body state biomarkers back to that of a 25 year old. Thinning the blood is one thing but there's been a lot of damage done too I presume
 

Oliver3

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A topical subject. Your contribution to the discussion might be to post old research on this subject, or to tell us about your own experiences of using things like blood thinners ect. Maybe you have a theory.
This is interesting. Suramin has bee.n shown to help with blood clots in long covid patients. Pine bark extract helps. I can actually recommend a good brand
 

junkcrap50

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Does anyone know where there is a brief summary of all coagubility/vascular issues and research found in ME/CFS? I vaguely know, mostly just Dr. Simpson's RBC deformability & David Berg's tests, but other than that I couldn't say which tests are abnormal in me/cfs.
 
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I've never really been able to relate to the cold hands and feet thing, is it really that common in me/cfs ? its about 5c outside and I feel really cold this morning, fingers especially, even though it says its 20c in my room, and I feel too tired to go out today, but it could just mean I have a fever. The thing Dr Davis is making seems like it could be useful, maybe he is also interested in this angle of inquiry, if thats true then he was quick on the uptake.
 
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Any news on this front guys?

I recently got venous blood gas done when I was in the ER, and found that I had low O2 Saturation (51 %, range 60-85), low pO2 (26 mmHg, range 30-50), and low oxygenated Hb (50 %, range 60-85)...

None of the doctors seemed concerned (of course?).

Could this be why I crashed so badly when I got covid.? Just microclot issues from the start?

What are people doing for this now? Is that paper from Pretorius where they do a bunch of different anticoagulants something worth pursuing? I don't think that help-apheresis is available in Australia or if it is, I doubt it is readily accessible..
 

SNT Gatchaman

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Any news on this front guys?
Still thinking about how these low SvO2 findings might be explained. An unpublished study by Dr. Karl Morten was presented (in 2018 I think). As far as I know this study has not been extended / replicated / published.

His group took healthy human muscle cells and measured oxygen levels in cells, first in healthy control plasma and then in ME/CFS patient plasma. There was a significant drop, as graphed.

1648369186327.png

This complemented Prof Ron Davis's cross-over study showing something in ME plasma affecting healthy cells. See this blog post for details on these two studies and others.

If the "something-in-the-blood" leads to inefficient oxygen use by cells and drops intracellular oxygen levels, that might lead to oxygen hyperextraction from blood as a compensation. This might lead to the much lower venous oxygen levels observed.

That won't explain the proportion of ME patients that have abnormally high SvO2. Perhaps they have moved to a deeper level of metabolic adaptation that doesn't demand oxygen hyperextraction as a compensation.

Maybe the researchers plan to run this experiment with a range of ME patients' muscle cells. If anyone has seen any updates on this finding, please follow-on in this thread.
 
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Boba

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I just read this article in science discussing a new function of red blood cells being discovered. Considering the findings of red blood cell deformability and micro clots, this might add some sense. Anyone who is medically more intelligent might comment on this.

https://www.science.org/content/article/red-blood-cells-may-be-immune-sentinels

“We can now say that red blood cells have an immune function” in humans and other mammals, Mangalmurti says. Most of the time, she suggests, the cells serve as janitors for normal cleanup duties, sweeping up potentially harmful DNA that leaks into the circulation from the many body cells that die every day. But during an infection or after an injury, this DNA may flood the bloodstream. The red blood cells then sacrifice themselves by encouraging macrophages to eat them, alert the immune system, and trigger inflammation. If macrophages consume too many red blood cells, however, anemia may result
 

Boba

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BrightCandle

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I feel like all the evidence at the moment on myself (CBIS) and the science is pointing towards the fact we are infected and all the ME/CFS symptoms stem from our bodies response to an infection it can't beat. We don't see the bacteria/virus in the blood because its localised (like Covid penile dysfunction guy) but its there burning away in the body poisoning us (bacterial toxins) and/or causing illness symptoms all the time. The question is what is the infection and what actually works to eliminate it.
 
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Boba

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I feel like all the evidence at the moment on myself (CBIS) and the science is pointing towards the fact we are infected and all the ME/CFS symptoms stem from our bodies response to an infection it can't beat. We don't see it in the blood because its localised (like Covid penile dysfunction guy) but its there burning away in the body poisoning us (bacterial toxins) and/or causing illness symptoms all the time. The question is what is the infection and what actually works to eliminate it.
If red blood cells act as an immune carrier and sweep up harmful DNA which can stem from any bodily process (infection, leaky gut etc) than an ongoing process of poisoning us could lead to RBC being busy with their immunological job rather than supporting our system with 02. My biggest problem is fatigue, a fatigued system due to lack of 02 delivery will result an in all the different symptoms we try to manage with our condition. Every human organism is different therefore the symptoms will differ. One could explain everything with dysbalanced RBC capacity. The triggers can be different obviously.

I think mitochondrial or endothelial dysfunction are downstream from a blood disorder. However just a theory from a layman. Pls jump in and correct me. Basically one has to find the crossroad of immonological and energy processes to see how infection results in sickness and the lack of energy. At this crossroad sth is not working properly. We call this a systemic disease and people point to the brain as a source but I think the brain is just suffering from 02 delivery and creates a new homeostasis resulting in all types of metabolic problems. Imagine being up all night when you were healthy or driving a long road at night. I always felt that stimuli were much more intense when I was very tired. My brain was working normally it just hadn’t the energy to process and therefore was overstimulated. Just thinking out loud.
 
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SWAlexander

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If red blood cells act as an immune carrier and sweep up harmful DNA which can stem from any bodily process (infection, leaky gut etc) than an ongoing process of poisoning us could lead to RBC being busy with their immunological job rather than supporting our system with 02.
These were my thoughts from the beginning.
Blood delivers not only C2 it also delivers sugar to the brain. How can any nutrients and minerals be delivered to the whole system, when clots blogging veins and arteries. Except the lymphatic system has no red blood cells, but all nutrients and minerals are there.
In my case, the diagnosis was finally "Antiphospholipid-Syndrome".
Since I´m on blood thinners, my energy is 80% back.
 
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ChookityPop

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These were my thoughts from the beginning.
Blood delivers not only C2 it also delivers sugar to the brain. How can any nutrients and minerals be delivered to the whole system, when clots blogging veins and arteries. Except the lymphatic system has no red blood cells, but all nutrients and minerals are there.
In my case, the diagnosis was finally "Antiphospholipid-Syndrome".
Since I´m on blood thinners, my energy is 80% back.
Thats great! Im pretty sure I benefit from blood thinners as well Which meds and dosing are you doing? And what antibodies did you test positive for?

I tested positive for P-Kardiolipin IgG: 35 (< 10) and P-Beta2-Glykoprotein I IgG: 30 (< 10)
 

SWAlexander

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Has your cognitive function also improved?
Yes, although my brain is not at the point it was before. Corticotrope Insuffizienz (Hypopituitarism) could be also a factor. However, my skin is clearing up.
One other significance. I have less anxiety since I know I survived this horror.
On Oct. 21 I made funeral arrangements. Now I make plans and with caution, I can execute them.
 
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