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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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?
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.
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.
That these clots appear in other diseases anyway and three of the ME patients had RA.
Excellent overview here of all the coagulation research prior to today's study in ME/CFS:
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 🔶🇪🇺
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.