Is me/cfs a blood disorder?

SNT Gatchaman

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If that is whats going on then anti inflammatory drugs might be the way out of PEM. What should show up is an increase in inflammatory substances during PEM.
I wasn't thinking of it quite like that. The inflammatory substances are suggested to be stuck in the micro-clots. There they are likely not measurable in our standard serum blood tests. They may also be protected / privileged in relation to anti-inflammatory therapeutics.

It may be that PEM is more about red and white blood cell dysfunction, but that inflammation is more relevant to our background (resting) state.
 

Oliver3

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I'm going to go with no.

Here's my reasoning. When people say "blood disorder" that means something wrong with your RBCs, like anemia, something wrong with your WBCs, like leukemia, or something wrong with your platelets (although those often get referred to as clotting disorders, rather than blood disorders. All of these things are fairly easy to diagnose and would be hard to miss on the common blood tests where most of us are normal. When you first went to the doc saying you were tired all the time, anemia was probably one of the first things s/he ruled out.

That's not to say that there's not something off with our blood, like the RBC deformability problems some studies show. But other studies haven't shown, I think? I am certainly not ready to say that ME/CFS is caused by RBC deformability issues, even if that is a component, since I don't think we know that yet. And again because calling it a blood disorder would imply that is both the case and the main treatment target, which I also don't think we know yet.

There is something clearly wrong with blood flow and perfusion, but those types of issues aren't necessarily not something categorized as (or caused by) a blood disorder. You could say I'm arguing semantics a bit, but I think it's more a problem of correct disease classification and identifying the underlying problem as opposed to all the downstream problems.

Prove me wrong, science!
I've seen discussion on long covid causing micro clots in blood despite normal platelet tests
 

Wishful

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There they are likely not measurable in our standard serum blood tests. They may also be protected / privileged in relation to anti-inflammatory therapeutics.
So far in this thread I've seen various excuses for why the microclots haven't been verified and why the various potential treatments don't have an effect on ME. I'm still waiting for some evidence actually supporting the hypothesis. A quick check showed mention of microclots back in 1999, so techniques for finding them must exist. So, do PWME have elevated levels of microclots or not?
 

Oliver3

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Has anything else had this effect?
Not that I can think of Andy. But I would also add, what's crazy is I've been feeling freedom from the really awful malaise, but the over extending and crashing. So it's deffo only part of the picture. Ginseng helps with that a bit.
But the malaise element feels less like I'm gonna die on aspirin.
Raw garlic had a much less tangible effect but still noticeable
 

Oliver3

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Not that I can think of Andy. But I would also add, what's crazy is I've been feeling freedom from the really awful malaise, but the over extending and crashing. So it's deffo only part of the picture. Ginseng helps with that a bit.
But the malaise element feels less like I'm gonna die on aspirin.
Raw garlic had a much less tangible effect but still noticeable
I meant not gonna die!!! There's less of a sense of dread too I've noticed. Fewer auras. Non for many days in a row and the ones I get are tiny in comparison.
Maybe if I pace better, I may improve and peg in some of the gains
 

Oliver3

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So far in this thread I've seen various excuses for why the microclots haven't been verified and why the various potential treatments don't have an effect on ME. I'm still waiting for some evidence actually supporting the hypothesis. A quick check showed mention of microclots back in 1999, so techniques for finding them must exist. So, do PWME have elevated levels of microclots or not?
There's no excuses, I guess, it's just noticing patterns and wondering why certain things give positive results.
Most of us on here are just laymen who've learned thing or two aren't we. No access to scientific equipment etc.
So why does aspirin help quite clearly? We don't know but we can wonder out loud
 

Oliver3

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We should have preliminary answer on that in the next couple months. As Dr. Pretorius is including ME/CFS patients in her analysis of Long Covid microclots . And they seem to be working crazy fast with Long Covid.

Fantastic. Just shows what can be done when there's even the smallest bit of will and dare I say it glamour and prestige. But what the hell. Bring it on
 

Oliver3

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I wouldn't know where to put this so I'll add it here. Aspirin definitely helps me. But as with all these drugs, I'm gonna surf my use of it and cycle it, only using it on bad days or when I need to attend an appointment etc,

A few years ago I came across this " neurologist" online by the name of jack Kruse. Sure some people have heard of him.
For me, he's not a particularly pleasant person but he did have some insights worthy of mention I think.
I mention it here because I don't think microclots are the only thing going on ( we all know that I guess).
Basically, as far I could understand his very long winded lectures, he talked about the electrical charge in the cell and how blue light, imbalance of circadian rhythm, carbs leech energy and water from the cell leaving mitochondria flat and a total dehydration of the body which led to impaired blood flow, hypoxia etc.
I sent a link with a blurb of the talk to the open medicine foundation.
One of their team got back to me straightaway, and said where did you get learn ( not in a dramatic way) as we are studying this right now.
I've never really heard anything else about this and wondered if the idea was dropped or just incorporated into a bigger understanding of the metabolism at a cellular level.
So I think personally anticlotting meds will help, but there is smthg doing a number on the mitochondria isn't there.
Just an interesting add on as although I feel better I can still crash.
But the aspirin has lifted my general mental n ohysichal well being although it is a bit hard on the stomach
 

Oliver3

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I never noticed any such effect. Has anyone found anti-inflammatories to be a reliable treatment for PEM?
Well sort of. I tried black seed oil and got almost instant and near total remission for a few weeks. Then it started tapering off although if I use it I still get a certain degree of relaxation.
My pots stopped straight away..I couldn't believe it.
I looked into the constituent parts and there is a massive inflammatory property..ah the name of it escapes me now but my ears pricked up when I heard a French researcher was trialing just the anti inflammatorypart of black seed.
I've often wondered if we were getting that property at a higher, perhaps even intravenous level whether we would go into remission.
Haven't heard what happened to the researcher and his study either
 

Oliver3

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Well sort of. I tried black seed oil and got almost instant and near total remission for a few weeks. Then it started tapering off although if I use it I still get a certain degree of relaxation.
My pots stopped straight away..I couldn't believe it.
I looked into the constituent parts and there is a massive inflammatory property..ah the name of it escapes me now but my ears pricked up when I heard a French researcher was trialing just the anti inflammatorypart of black seed.
I've often wondered if we were getting that property at a higher, perhaps even intravenous level whether we would go into remission.
Haven't heard what happened to the researcher and his study either
Thymoquinine is the anti inflammatory...wonder if that can be given
 
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Basically, as far I could understand his very long winded lectures, he talked about the electrical charge in the cell and how blue light, imbalance of circadian rhythm, carbs leech energy and water from the cell leaving mitochondria flat and a total dehydration of the body which led to impaired blood flow, hypoxia etc.
Sounds like science fiction! How about a more ordinary explaination of what might be going on. Like this....me/cfs starts with the formation of abnormal red blood cells. These are broken down in the vascular system (intravascular hemolysis) releasing inflammatory chemicals (including free hemoglobin) leading to dysfunction of the circulatory system and it is this dysfunction that causes symptoms. Red blood cell abnormalities can be caused by: Some drugs, nutritional deficiencies, infection, excessive exercise, Radiotherapy and probably metabolic disorders. EDIT you dont need micro clots for any of the above.
 

SNT Gatchaman

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Except... standard blood tests in ME are normal. No evidence of intravascular haemolysis, circulating inflammatory mediators etc. I think the red cells are specifically not broken down — they likely persist for their standard 120 days, but have poor deformability.

The micro-clots are a good explanation for all of this - sequestering activated platelets and inflammatory mediators that are still having biological effects, but hidden from our plasma tests.
 

junkcrap50

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What has been found in some studies is a higher incidence of the following clotting markers:
  • Prothrombin Fragment 1+2
  • Thrombin/ AntiThrombin Complexes
  • Soluble Fibrin Monomer
  • Cardiolipin Antibodies (IgA, IgG, IgM)
  • Beta-2-Glycoprotein I Antibodies (IgG, IgA, IgM)
https://pubmed.ncbi.nlm.nih.gov/10695770/
https://paolomaccallini.com/2016/07...e-anti-cardiolipin-antibodies-and-mast-cells/

I am planning on asking my Doc to check the factors above. For those in the US, the Quest Lab test codes that cover them are:

Thrombotic Marker Panel (11345)
Antiphospholipid Syndrome Diagnostic Panel (19872)
Fibrinogen (461)
I keep seeing conflicting information about lab testing. Is there any agreement yet on tests that might help indicate something's wrong?

Dr. Khan also mentioed the tests: TEG and PFA200 test, but seems to mean they're useful mostly in acute covid and while monitoring treatment.
 

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