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That sounds relaxing. Maybe they could prescribe them? :emoji_grin: Thanks for highlighting the stress vs worry bit, it confused me and I was going to add something, but you have both covered it.

I would like to see a study on the number of cases investigating stress in Long Covid or ME/CFS compared to other biological diseases. Or how the NIHR (who funded this) justify it and not other projects we badly need. So, they use “Ecological Momentary Assessment” that is asking people for...

Conclusions: Daily stress and worry are distinct factors linked to fluctuations in same-day and next day symptoms of life, with daily stress showing the strongest association—consistent with patterns recognised throughout the history of humanity. These findings highlight the importance of...

I didn’t know much about CrunchMe or Rory Preston, the guy behind it, and the link to their website (a Notion wiki) wasn’t working for me. But I found this article interesting background...

It’s a difficult and obviously emotive topic. It feels like we all want the same thing though and there’s just sometimes a bit of talking past each other and getting caught up in what others motivations are or who is to blame. Maybe we can set that aside? I do think we should all try and focus...

Most of the methods are beyond me, would be good to get more insight from some experts, but if I’m understanding the paper correctly they’re saying (and sorry if this is repeating, just helps me work out what is being said!) Two different viruses, with two different routes (presynaptic...

CX3CR1 has been talked about in various threads and contexts before on the forums. I particularly wonder about the relevance of this The paper mentions this in the discussion too

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)...