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Me too! Not restless legs specifically, although I do sometimes get it, but in PEM, particularly in bad PEM, I cannot stay still at all.

I find the idea of autism being an autoimmune disease profoundly unsettling. I don't know, obviously I have what we now call level 1 autism, and there are people who are far far more disabled by it than me whose lives would be transformed by a hypothetical cure, and that's very important to...

Interesting! As in starting then?

I was about to suggest F&M - it would be interesting if dara produces more 'responses' to see what would happen if they tested for this before and after giving dara/improvement. Was not aware of this part! Maybe just naturally ocurring remission? Except you mention the prolactin peak is way too...

One of the things I find really interesting about this is the case report that this abnormal buspirone stimulated prolactin release returned to normal in a patient once they had recovered from MECFS.

Well, I think it's probably no great shame this person isn't working in MECFS research anymore if they think many/most pwME have a somatisaion disorder. That's exciting! Hopefully something exploring this avenue can get set up soon.

https://www.proteinatlas.org/ENSG00000112763-BTN2A1/single+cell According to the charts in here BTN2A1 is very highly expressed on neutrophils and central nervous system macrophages - have we discussed this? This image shared elsewhere by MECFS science shows the cns macrophage statistic, the...

Too late :emoji_sweat_smile:

This makes a lot more sense to me than the idea there's lots of different diseases. In the eMSN thread @ME/CFS Science Blog points out that BTN2A1 is quite highly expressed on eMSN.

Could there be a link between this and some sort of gdT cell pathology? Like, BTN2A1 mediating some sort of erroneous signalling from gdT cells to eMSNs? Or even vice versa?

Does anyone have any information about exactly what this would entail? I'd love to contribute more in some way but I don't know if I'm right for this/it's right for me.

This is exactly what the doctors who gaslit me into destroying everything thought was wrong with me. Like, they didn't say the part about vicious cycles of monitoring, but the physical trigger no longer being there stuff they did, and the monitoring stuff is clear from how they treated me and...

It's weird isn't it! Glad I'm not the only one.

Yeah I realised after I posted my VSS and after shadows with reverse colours have been around since my prodromal phase but became much more pronounced when I got worse.

Incredible poem Veronica. And extremely poignant. Found poetry isn't always my favourite thing but it seems so appropriate here somehow. I was wondering if you might be willing to message me the names of some of the magazines you've submitted to that you find respond positively to poems about...

I have all of these! They started as soon as I became severe. If I stare at my phone too long I also get the afterimage of horizontal dark but translucent 'bars' across my vision where the phone was. This all started exactly on my severe onset.

This would make sense to me. When I deterioated to severe, light sensitivity and eye pain were two of the things that immediately became most prominent and intense, as well as sensitivity to sound. I did have a leser degree of sound and light sensitivity as a mild pwME, and as a moderate these...

My light sensitivity is very much tied to my severity level and is better when I'm doing better and worse when I'm doing worse. As I understand that seems to be the norm.

Okay I deleted the bit about less family support. I have kept the bit about sympathy. I made no comparison and it is undoubtedly true in my opinion and experience.