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Interesting. I’ve been wondering about astrocytes and their general housekeeping at the synapse but this seems a bit clearer on a potential mechanism and shared upstream trigger for different virus induced problems. The full paper and PDF is available on Pubmed Central btw PMC | PDF

Really interesting, thanks for sharing @forestglip It seems quite a rare but significant step to be taken.

If people haven’t seen it I made a thread yesterday, some contributions from people for questions to be answered in a FAQ would be good https://www.s4me.info/threads/the-faq-project-a-collaborative-faq-of-me-cfs-science.47085/

We all want that. Hospitals need to stop being places of risk and harm for people with ME/CFS.

We should challenge the misinformation because challenging the misinformation is the right thing to do, not because it is linked to any worsening of outcome for patients. I don’t think we have conclusive evidence that there is a link, only anecdotes, and saying there is, is perhaps unhelpful...

The problem is for many of us that is not an option. We have to try to explain our needs because we need them accommodated. We get brushed off. So we get nothing, no healthcare support for our non ME/CFS needs.

I think that’s the case. Pushing back against disbelieving medical establishment when in a time of crisis is hard. But maybe there’s a fine line here between being disbelieved and the safeguarding excuses? The results are I think similar, the patient gets harmed either way, it’s just wrapped up...

That’s interesting @BrightCandle I wonder if there’s also the filtering of things through parents? Or just how people perceive what children say differently?

I’m thinking more of a community FAQ than a factsheet. It could be broken up into more manageable bitsize bits, making it easier to produce as well as consume. Agree we also need that and am looking forward to it and being a le to share it.

The new forum software has the ability to turn a thread into a more traditional blog article or website like view, which may be useful for this? See this on article threads and or an example of displaying posts to highlight them here or this on featured content.

Thanks @jnmaciuch I’m very much into the more general interferon theories now, I was just unsure of how pDCs fit in, as such a large signal seems like something we would have noticed even if only in some patients in some studies. But if it’s that difficult to measure perhaps not! Great to see...

They seem a bit hung-up on the perceived nature, despite data showing an a tual reduction. I’m not sure how often this level of questioning of patients happens with other conditions The huge range of different criteria for inclusion raises questions of course. However when we get to the...

Muscle strength, muscle endurance, voluntary activation, and perception of effort in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): an overview Nuzzo, James L.; Taylor, Janet L.; Latella, Christopher Abstract Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)...

Do you @Jonathan Edwards or anyone else have any practical suggestions on what we can do to get the charities representing us to change their tune on these points? I know I’ve contacted them when they’ve done things I thought were unhelpful and the responses have guided me to how I think about...

If plasmacytoid dendritic cells are involved and their characteristic is that they produce very large quantities of type I interferon (wikipedia says up to 1,000 times more than other cell types, mainly IFN-α and IFN-β), why do we not see very large quantities of interferon in people with...

Combinatorial Analysis of Phenotypic and Clinical Risk Factors Associated With Hospitalized COVID-19 Patients Abstract Characterization of the risk factors associated with variability in the clinical outcomes of COVID-19 is important. Our previous study using genomic data identified a...

Analysis of Genetic Host Response Risk Factors in Severe COVID-19 Patients Abstract BACKGROUND Epidemiological studies indicate that as many as 20% of individuals who test positive for COVID-19 develop severe symptoms that can require hospitalization. These symptoms include low platelet...

There’s a couple of papers by and often referenced by PrecisionLife I thought it worth sharing in advance of the upcoming results of the LOCOME research project.

Systematic indication extension for drugs using patient stratification insights generated by combinatorial analytics Abstract Indication extension or repositioning of drugs can, if done well, provide a faster, cheaper, and derisked route to the approval of new therapies, creating new options...

A slight tangent but I’m also reminded of this from @Andy which expresses it so well and changed how ai think about things We need charities to be better and clearer on all this. But patients do need to be able to tell their stories and talk of their lived experiences.