Search results

I'd like to see a trial of approaches to teach and support people with newly diagnosed ME/CFS to pace, approaches something like: 1. Friendly and experienced ME/CFS nurse spends an hour with the person discussing pacing, provides a pamphlet with basic guidance, link to some online resources and...

Just wanted to express my sadness that you and your daughter had this experience, an experience that so many of us have had versions of. It is absolutely not ok. People whose lives have been so throughly upended, especially young people, need and deserve nurses and doctors with curiosity...

I understand your point, even agree with it a bit. But I think it is valid to look at the methods of getting messages across - for example, demonisation and discrediting of people opposed to one's views; stereotyping - and assess how effective they are. It can contribute to people being more...

I think you are right, that multi-causal was not how 'multi-system' was meant, but 'multi-system' is another vague term, along with 'complex' and 'holistic' that invites each reader to apply their own meaning. We don't need to give scope for multiple interpretations when we are describing the...

Well, we don't really need everyone onboard with good science. We just need a few to make the breakthrough, and quite a lot more to champion it. And then the people tied up in their own world views will be irrelevant. But sure, in the meantime I'm all for doing what we can to build systems...

None so blind... I cannot understand how people can write this stuff and not see the holes in their assumptions.

And I thought this bit accurately conveyed the excruciating pressure to present oneself, especially as a representative of a disabled community, just right: And it was notable that BPS proponents describing people with ME/CFS who are vocal in extremely negative terms was not missed by these...

Thanks for talking to Slatman, @Grigor, I'm sure you helped move her towards a better understanding. I thought that point was interesting. It's an argument for the use of the term 'people with ME/CFS' rather than patient. Where we can we should provide more positive descriptions e.g...

I've only read a bit, but I've found it interesting. The perspective of someone who seems to be coming from outside the debate could be helpful, even if they haven't properly understood some things. For example this: I bet a lot of the patient representatives who use 'multi-system' don't...

It's true that people in both the BPS and the 'ME/CFS is biological' camps can be way too certain about things. Both can cause problems. The paper seems to be a review of national media in the Netherlands between 2013 and 2018.

I don't think I can be bothered giving this study much time. A definition of PCC as at least one elevated symptom at 3 months is just way too loose. There are too many problems with assuming test-negative controls didn't have Covid. And the mixing of symptoms (and therefore different causes...

These are the main findings relevant to Long Covid. In the first panel of a. This is just for the Lugano cohort for some reason. The No long covid is at 12 months, but the Long covid is at 6 months. I don't know why. The story is that the levels of chemokine autoantibodies in the No LC group...

I was initially a bit excited about this paper - I liked the idea of it. But I don't think there is much here. A lot of the paper is actually comparing people who had been infected with Covid with never infected healthy controls. Selection of Long Covid cohort Although it talks quite a lot...

That was my impression too - swamping the existence of post-Covid ME/CFS with a version of the 'well, we're all tired [but most of us just get on with things]' response to people reporting debilitating fatigue. And it just so happens they can also make the case for lots of money to be spent...

It sounds to me as though these channels aren't vascular; a very recent finding https://news.harvard.edu/gazette/story/2022/05/skull-channels-key-to-detection-of-brain-infection-injury/

Just as aside, it's a bit sobering to read about a mutation in the Covid virus that makes it infect mice. I'm not sure if that's just a lab thing or if it is out there in wild mice. The virus must be mutating its way through a whole lot of species. From the discussion: they talk about...

Spike S1 protein triggers proteomics changes in the mouse skull marrow, meninges, and brain They did similar sorts of things with the mice, looking at proteins in the skull and brain tissues 3 days after the injection of the spike protein or controls. As in the human tissues, they found...

So far, this is a nicely written paper - it's quite straightforward for such technical things. From a German team. Proteomics profiling of COVID-19 patient skull marrow, meninges, and brain samples They compared the proteins in the skull and brain tissues of 10 Covid-19 patients and 10...

SARS-CoV-2 infection in the human skull, meninges, and brain They found viral spike protein in the skull marrow niches, skull marrow channels, and meninges of 17 patients who died during an acute Covid-19 infection and no viral spike protein in samples from control patients. They suggest that...

That's a first sentence that might raise a few eyebrows from respiratory physicians, I'm not sure that that is what they meant. I find this quite interesting. Viral persistence with long periods of latency would be a straightforward answer to the question 'what causes ME/CFS?'. I think it is...