The occurrence of hyperactivated platelets and fibrinaloid microclots in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

[godlovesatrier]

https://twitter.com/i/web/status/1534221461476585473

 

[SWAlexander]

Inflammation, folic acid and flavonoids.
3 weeks ago I stopped eating tomatoes to find out if flavonoids trigger skin allergies.
Yesterday at 6 pm I took folic acid and eat 1/2 tomato and this morning I had "red poke dots" all over my body.
I also experienced inflammation, and elevated/swelling in the sinus system.
Now, which of those two is the culprit?
Please tell me if you have had similar experiences.
Thanks.

 

[godlovesatrier]

Did you mean to post that as a new thread? @SWAlexander

 

[godlovesatrier]

Quote from Dr Berg's interview which I think is also 2001. Interesting here that he says it seems 40% of ME patients have this issue but the rest do not yet he was unable to finish his follow up research to figure thes things out:

Drew
I wanted to say first to Dr. Berg that I’m very grateful. I’ve had Chronic Fatigue for 15 years and your research and findings offer hope to not just myself but I think all of us who have been struggling with this condition for so long and we’re looking for that ray of hope and this seems very promising. I wanted to ask just very quickly as a sufferer, what tests should I go out to have and should I start on the heparin or is it necessary to have multiple tests before I begin heparin?

Dr. Berg
Excellent question. We offer what’s an ISAC panel and we’re looking at these 5 markers to see how activated the patient and it’s important to know if the platelets are activated because in addition to anticoagulants you may need an anti-platelet drug like 81 mg of aspirin a day. And the other thing is that we need to have the hereditary thrombosis risk panel which is 8 different proteins, and this is the extensive part, and these proteins then tell us where the genetic defect is. Dr. David Bell who participated with us in the blinded study started 4 patients on heparin and the first one did very well and the other three did not and I suspect, by genetic predisposition, that those 3 that didn’t respond have the hypofibrinolysis and that’s where our research is taking us now.

 

[SWAlexander]

Did you mean to post that as a new thread? @SWAlexander

Not really as a thread, more like a question about where and how inflammation or hyperactivated platelets are created. Now covid is mentioned as a source, but inflammation was there before covid.
I´m going in circles with my thoughts.

 

[mitoMAN]

Clots are probably found in many many diseases. They might cause some of the symptoms but not the entire picture.

 

[BrightCandle]

There has been some suggestion that its a part of the innate immune system, just another way the body ties up an infection until the right response can be created. I saw a discussion about it on a podcast some time last year were one immunologist said this was known and everyone else looked at him blankly and were like "really? I don't recall ever seeing a paper on that". So its not well known or he was just wrong. Its possible its innate immune response to an infection.

 

[godlovesatrier]

S4me thread saying much the same thing. That these clots appear in other diseases anyway and three of the ME patients had RA.

So maybe even if they did treat these symptkms - as I think Hass been the case for people here who've travelled to get the tests and treatment from this forum? That even with that they don't see a huge improvement.

Then again plenty of threads about people improving on heparin. Found another poster on s4me who said the same thing. Could do more fatigue was not as bad post injection.

 

[Sad Dad]

What I'd like to know is has anyone seen improvement from heparin and seraptase etc?

My daughter has been on Heparin for a little over a month and has seen definite improvement. Not massive, but it appears to have raised her baseline.

 

[godlovesatrier]

That makes 4 people from this forum and 1 from s4me with minor but noticeable improvements.

I'll be honest if it helped working memory as much as one PR poster then I'd be impressed as I need good working memory for my job and the only thing that helped that was beta glucans which I've had to stop taking.

 

[godlovesatrier]

https://twitter.com/i/web/status/1534612098956857348

Now whilst this is all great didn't Dr Lerner say it was a vascular disease in the 90s? I thought he not only identified left ventricle function abnormalities, but also categorised it as vascular. Maybe I am off here though. Still POTS or even milder forms of OI/dysautonomia like I have could potentially be explained by heart issues. Also in my particular case my heart didn't work properly when I was born (briefly) so maybe there was an issue there anyway? Of course that will be unique to me.

I guess I am just impatient to see someone lock a symptom or aspect of the sickness down to a specific finding.

 

[SWAlexander]

Clots are probably found in many many diseases

Yes I know and I believe it is, at least in my case, possibly inherited. I have antiphospholipid syndrome (APS).
Is early childhood herpes the cause?

 

[Rufous McKinney]

That these clots appear in other diseases anyway and three of the ME patients had RA.

This paper was cited in another paper...regarding RA...its pretty interesting and worth looking at ...

https://journals.sagepub.com/doi/full/10.1177/1535370216681549

Major involvement of bacterial components in rheumatoid arthritis and its accompanying oxidative stress, systemic inflammation and hypercoagulability

 

[godlovesatrier]

Excellent overview here of all the coagulation research prior to today's study in ME/CFS:

https://livingwithchronicfatiguesyndrome.wordpress.com/2016/08/23/heparin-for-me/

 

[Rufous McKinney]

Excellent overview here of all the coagulation research prior to today's study in ME/CFS:

I saw negative comments about Dr. Berg recently in a PR thread when somebody posted some of his work.

Sounds like its more likely these issues ARE going on than not, so is Dr. Berg vindicated?

 

[godlovesatrier]

Tbh these days I just try to look for vindication based on quantity and to some extent quality. It seems that historically if things keep being found. Then it's not remotely by chance. So I use that as a predictor of things.

So I think vindication is difficult because I'm not sure anything so far apart from the small change in the nice guidelines has moved the needle. Not sure what it would take to vindicate any doctor in this field as they get shat on from a great height.

On s4me they are tearing the micro clots team a new one.

 

[Countrygirl]

It appears that Prof Pretorius cannot get her paper published. According to Prof Kell:

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@dbkell

First actual marker in a debilitating disease. "I am afraid we are not persuaded that these findings represent a sufficiently striking advance to justify publication in <some self-absorbed journal run by kids>" (Not even sent for review.) Onward and upward.

 

[GlassCannonLife]

It appears that Prof Pretorius cannot get her paper published. According to Prof Kell:

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Prof Doug Kell CBE #FBPE #FBPA #ABTV
@dbkell

First actual marker in a debilitating disease. "I am afraid we are not persuaded that these findings represent a sufficiently striking advance to justify publication in <some self-absorbed journal run by kids>" (Not even sent for review.) Onward and upward.

It's pretty standard to aim for a few rungs higher than you think you'd actually get though when you first try to publish something.

 

[andyguitar]

On s4me they are tearing the micro clots team a new one.

Oh really? So who would know more about this subject, Prof Pretorius and her team or the posters on that website?

 

[godlovesatrier]

It's pretty shocking on s4me actually. Jonathan seems to just kill any conversation. @andyguitar

Having read about the treatments for this tonight they are supposedly the most risky ones you can take for ME. Potential for some nasty cross reactions with other supplements. Lots of interactions.

But I guess with the right supervision people would see benefit.