And my mum has PD and her hearing is fine
Honestly I hate the way these things are written up. It helps nobody. Scares people who are well and does nothing to help those with the condition.
This was something I saw in parts of the mental health community with some conditions. Not in huge numbers but it existed. I think it can be present in unexpected places tbh.
Do we have evidence which ties this stratification to the subgroups you have outlined? There is work like PrecisionLife’s which talks of subgroups but AFAIK nobody has shown this fits those groups or definitions. That’s also just one study, it sounds as if they will be talking about replication...
Please, by all means share the papers so we can discuss them. From what I see just about every paper in the field is posted when published, but if we’re missing things we should fill in that gap.
It was the potential pathway I suppose I found interesting in here. But if it’s nothing new/unexpected as @Jonathan Edwards says I’m not sure what to make of it.
The idea of recoverable impacts on synapses from a shared pathway upstream of viruses seemed to tick a lot of boxes. If this process...
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
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 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.
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