Search results

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.

Thinking about this a bit more reminded me of the arguments I’ve made about the psychology of persuasion and people’s emotional investment. That we as patients probably should focus less on those who will never change their minds, those medical professionals who have been vocal and influential...

Agree with a lot said here. Also talk of ‘lived experience’ is increasingly common but particularly in groups who have been dismissed and frankly, have nothing else to cling on to. But I mainly want to add that I think trust is an important step. Most of us have lost that trust in systems and...

So they seem to use this FSMC Fatigue Scale to determine if people had fatigue and then called that CFS or sometimes ME/CFS https://www.sralab.org/rehabilitation-measures/fatigue-scale-motor-and-cognitive-functions

This popped up in a search. Looked potentially interesting but quickly became clear it’s one of those papers that conflates ME/CFS, CFS and fatigue The Association Between the Occurence of Sensory Integration Disorders, Depression, and Chronic Fatigue Syndrome in Patients with...

That’s interesting, so it looks as if they have ME/CFS following LC, and are trying to work out how to study it. The recognition that PEM is key for ME/CFS and it is often incorrectly conflsted with fatigue is good too. As is the highlighting of FUNCAP. I agree with @Utsikt though that there’s...

Here’s the figure showing virus sequences detected by group