The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

It must feel as though you've had a bit of a baptism by fire @SNT Gatchaman but please stick around. I've found this thread interesting and informative and I have no doubt the vast majority, often silent, have too.

Edit: Ooops - I spelt your name incorrectly

 

Dear @SNT Gatchaman,
This has been a most riveting thread, and I wish you would not leave, and I wish you would keep offering your views. These are new developments, and it is very important to discuss them, to look at them from all sides Dr Pretorius is a thorough researcher and she will produce a paper soon based on her time in Mulheim and what she finds there. I understand that more blood will also be sent to her once she returns home. Please do not leave this discussion. Many thanks for very interesting posts, which kept me glued to your every word. Please do not leave. Thank you.

 

@SNT Gatchaman

Good on you! It’s quite a learning curve with lots of pitfalls, especially while having to live with the illness. Look forward to hearing about your scientific process and research outcomes. E tū, stand tall, we are all in this together.

 

Oh I'm not planning on leaving! Well - not till every last one of us is cured, the prevention is found, the guilty are castigated and the site is finally archived for posterity.

I just thought it would be better for me to stop writing about this until we had more primary sources to refer to. Conjecture on disease mechanisms might have been fine as far as we could take it, but conjecture on what was happening with experimental treatments was causing trouble. As @Trish said, a few pages in — somewhere after the apheresis video — focus drifted. Entirely understandable.

I look forward to Prof Prestorius' discoveries and perhaps also our local researchers here in NZ will make a good contribution. When this is all solved I expect the executive summary is still going to require a couple of stiff gins to make it through. (I'm assuming I'll be able to drink alcohol again by then).

And, thank you for the kind words — not necessary but much appreciated.

 

@SNT Gatchaman
Thank you I have found your thoughts helpful. This thread was here to follow up the microclot and vascular issues being seen in covid and long covid. It’s useful to have a real time record of this line of enquiry. Over time we can judge the science itself.

Open and respectful debate is healthy I really hope for lots of your input as more data arrives so I can weigh this up.

 

It has been a very useful discussion @SNT Gatchaman.

S4ME has evolved into a place where scientific debate is genuinely hard edged and that can seem uncomfortable but it is the way science needs to be done.

When people get interested in a particular theory digging out all the arguments sometimes turns up things that are important. In the thread on IVIG I see that I had missed recent stuff that is relevant and surprisingly positive.

Moreover, getting absolutely clear why one explanation or another does not quite fit is a crucial part of the process of working out which explanation might fit.

Unfortunately immunology (like neurosurgery) is just as much full of empire-builders with preconceived ideas as psychiatry. There may not be the same gaslighting involved but I am not sure it makes that much difference. There is potential for harm and shoddy methodology. So scepticism has its justification!

 

Oh, Les Simpson was a lovely man. He came to speak to the Merseyside ME group years ago. Then later I had quite a long correspondence with him, but dead computer meant it all got lost, and also I lost his email addy.

From what I recall there was a specific way of collecting blood for his test. I never had the test myself, for reasons I don't want to go into, but they weren't anything to do with his ideas or methodology. I think it never went further after he died, suspect there just wasn't anyone over in New Zealand at the time who had any interest.

 

https://twitter.com/user/status/1460358120786513921

 

I know that pwME do get shortness of breath and heart palpitations but I wouldn't say these apply to everyone or that they are our main symptoms. I don't really get either particularly badly. This makes me wonder if those affected by clotting are a particular subgroup of pwLC (hopefully a large subgroup if the treatment turns out to work), but maybe won't apply to many of us.

 

I do experience those symptoms regularly, specially after waking up, I'm pretty sure there must be many ME/CFS subgroups with different etiologies

 

It comes and goes for me depending on how deep in PEM I am. At the moment I'm suffering shortness of breath when lying down in the afternoon because I've overdone it with watching a show that I liked.

 

https://medicalxpress.com/news/2021-11-antihypertensive-drugs-effective-hereditary-cerebral.html
Antihypertensive drugs are effective in hereditary cerebral small vessel disease

 

https://twitter.com/user/status/1469293882584309764

 

Health Rising: Clogged Pipes and Microclots: Are ME/CFS, Fibromyalgia and Long COVID Endothelial Cell Diseases?

 

How can they know this without being able to ask the mice? A mouse can't tell you it has PEM or sound sensitivity.

 

That comment was superceded in-thread as below. It was observations of behaviour that suggested symptoms, such as markedly reduced activity, slowed movements etc.

 

So you have some researchers attempting to study ME and/or fibromyalgia in mice where it is impossible to use questionnaires and other researchers studying the same conditions insisting that they can only be studied by subjective self reporting through questionnaires. Am I missing something here?