After a careful review of the data, UK and International regulatory agencies confirmed yesterday (18.3.21) that the risk of blood clots after COVID vaccination is no greater than that seen in the general population at large.
We encourage all MPN patients to get vaccinated and to continue their medications around the time of vaccination.
There is no benefit of one vaccine over another, and so we recommend MPN patients accept the vaccine offered to them as soon as possible.
Regarding the results of the study featured on the BBC recently reporting poor vaccine outcomes in blood cancer patients, we want to confirm that MPN patients are likely to have better responses and were not included in the reported study.
Lastly, many thanks to everyone who participated in our recent vaccination survey – we are thrilled with 1010 responses. If you have not yet participated in the survey, it is still open
The BBC put blood cancer patients at 8-13 protection off both jabs is this not the case for MPN patients and what would be our likely protection after both vaccines ?
I’m really worried obviously on this matter after isolating for most of the last 12 months
Some of my younger family are refusing the vaccine which I’m concerned about meeting with them once I’ve had my second vaccine due to the level of protection highlighted in the BBC report,
I have the rare thrombosis mentioned (CVST). Was discovered after I had 'stroke like' symptoms about 2 years ago. Most of it still remains in my head but the blood has found other pathways to drain out (your brain is quite amazing). After investigation of the cause of the CVST, ET Jak2+ was diagnosed as the cause and was probably the cause of a small heart attack 10 years previously. The interesting information I found out on a CVST forum, after my diagnosis, was that there were a lot of young females on the forum and the main cause of their thrombosis was the cotraceptive pill. That might explain the mainly 'young female' population of patients diagnosed in the EU!
I had CVST aged 22 having been on the contraceptive pill. Test for ET didn’t exist then so no way to know retrospectively if ET was a factor (although my platelet counts were normal at the the time).
All other possible causes were ruled out, and by process of elimination diagnosed as due to estrogen sensitivity/contraceptive pill. Rare occurrence but not uncommon.
Due to my age group & ET I’ll be offered Pfizer vaccine here in Ireland, which I was pretty relieved to hear (once bitten twice shy!). If AZ was only vaccine offered I’d be taking it for sure. Clotting risk from covid much higher than any vaccine!
What was the outcome of your CVST? Did you manage to clear it all away? Mine was largely still there after a year so I was told that was it... It was unlikely to change.. .. although two of the veins that go deep into the brain cleared which I was told at the time was very important to my recovery..
I was treated with heparin and a couple of other clot busters at the time, followed by a course of warfarin for about 4 months.
Memory of it is a bit foggy but I think the last MRI I had was about 6months post CVST, which showed partial occlusion, but clear enough for adequate blood flow and other pathways had opened up in the meantime to divert flow if that makes sense? Blew my mind that brains are capable of that! Was also mildly freaked out for a while after by the idea of walking around carrying a large clot in my brain, but it seems to still work well enough 😂
Jury is very much still out on ivermectin! The Irish Professor William Cambell (who developed ivermectin and won a Nobel prize for it) in a recent interview said “So the probability of ivermectin being used safely to kill the virus in people must be considered low” at doses that are safe for humans. On a positive note he thinks it’s possible that safe doses may reduce the rate of viral replication. Clinical trials are ongoing here.
Ivermectin’s manufacturer that its analysis of ivermectin identified “no scientific basis for a potential therapeutic effect against Covid-19 from pre-clinical studies”, “no meaningful evidence for clinical activity or clinical efficacy in patients with Covid-19 disease” and “a concerning lack of safety data” in most studies.
This is a good summary from the NIH of what we know about ivermectin as a potential covid treatment.
au.finance.yahoo.com/news/i... the jury is not out and this was established and trialled early last year. You might like to see all the cited research in this article of another highly distinguished professor of medicine internationally. This can all go into heated debate but when highly regarded specialists from around the world have the hard data of treating successfully almost 100 % of active cases ( if not too far gone) why is this not being accepted and equally on the table? For us MPN patients it is the difference between using 3 combination meds which have been around for decades and their safety profile established or a highly rushed totally new category of inoculation that has no long term safety data on and is showing some real risks? The other established approaches really should have a space be voiced. As of today there are over 52 international studies and peer reviewed research on hydroxychloroquine which irrefutably substantiate its prime position in curing this virus quickly. Fear is not needed but being provoked all the time.
No worries AnBee, there certainly won’t be any heated debates or fear mongering here 🙂 My comment was specifically related to my own experience having had a CVST, and balancing the risk of the very rare possibility of CVST from a vaccine against the much greater risk of Covid related thrombosis.
In the case of Ivermectin it hasn’t been approved for use outside of clinical trial in Europe or the US, which is also the current recommendation from the WHO. Not because it’s an “unsafe” drug, but because it’s as yet unproven to be effective in treating Covid patients. That is what I meant by the “jury is still out”.
If I’ve understood your comment about you having read 52 studies and the research around potential covid treatments correctly, you seem to enjoy educating yourself and keeping up with medical developments. It’s great to meet some fellow research nerds here! You might like this COVID-19 clinical management guide from the World Health Organisation, it’s a living document so updated with substantiated research and recommendations regularly
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