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I made my first YouTube tutorial video. That used up a lot of energy! I did it mainly to learn about video editing but also people were asking me for a sock curl tutorial. BTW I normally do this lying down after a bath and it only takes a couple of minutes (explaining in a video takes longer)

An interesting aspect though is when increased awareness of sepsis was in the news a number of us commented that it would be hard to tell apart our everyday symptoms from early signs of sepsis. Charles Shepherd seemed to agree but highlighted not urinating as one for us to look out for (this...

Is Science for ME enough of an ‘organisation’ to actually become a patient voice stakeholder? There’s going to be a NICE workshop next week, you might still be able to get a place.

No, so I’ve submitted the form again and had an email confirmation now :)

I fear we have to register as stakeholders for each bit. ME Action Network has dropped off the list again too :(

The global petition is still open and the general campaign hasn’t finished (though it’s perhaps a bit sleepy ;)) See @stopGETteam on twitter http://www.stopget.org/ https://m.facebook.com/stopGET/ https://my.meaction.net/petitions/stop-graded-exercise-therapy-trials-for-me-cfs...

It is definitely variable, not everyone with PP gets this, but some people with PP get something very PEM like with a delayed response to exercise. I thought of doing this thread because identifying conditions which involve something which could be called PEM came up on another thread. Most of...

That’s good. Perhaps the terminology changed, Professor Google thought the studies dried up about a decade ago when I asked. Probably best to go back to the original focus of this thread about potential under diagnosis/comorbidity of true Periodic Paralysis

There’s a list of papers here http://me-ireland.com/scientific/channel.htm Out of cognitive energy for now...

Not quite sure how we deal with the dual conversation issue? Over there they’ve got to a hint at a link with the Dauer hypothesis http://forums.phoenixrising.me/index.php?threads/skeletal-muscle-channelopathy-na-or-ca-management.56312/#post-937103

Ah I’ve spotted The Other Forum discussing this topic at the moment too http://forums.phoenixrising.me/index.php?threads/skeletal-muscle-channelopathy-na-or-ca-management.56312/#post-937085 I genuinely didn’t see that before posting here

Yes but often simply due to lack of funding for decent research to test them :( The overlap of episodes of weakness, brainfog, sometimes symptoms triggered by exercise or delayed negative response to exercise makes this something that really needs discussion and proper investigation IMHO (see...

@Valentijn it describes itself as a paper ;) I don’t know who wrote it? I’m interested more in the general hypothesis rather than a specific paper. It seemed like it was discussed quite a bit at one point then hasn’t been for a few years. Was this because evidence was found to refute the idea of...

I’ve changed the title of this thread

I found this Phoenix Rising paper written in 2012. In that year I was moving house and then having a bedbound relapse so I wasn’t following research debate. It could be there’s some reason people aren’t talking about this anymore? Eg @JaimeS @alicec @Valentijn does anyone remember? A...

@Inara it is complicated because there are several types. Hypokalemic and hyperkalemic have opposite responses. Potassium is generally a potentially dangerous thing to mess with even if you don’t have PP. Re the false negative I meant if you don’t have a currently known mutation that doesn’t...

70-80% can be picked up through genetic testing. So can be a false negative.

I might just message Suzanne Vernon and ask her opinion.

But the only study citing that hypothesis paper which measures stuff in CFS is: Exercise responsive genes measured in peripheral blood of women with Chronic Fatigue Syndrome and matched control subjects Toni Whistler, James F Jones, Elizabeth R Unger and Suzanne D Vernon*...