Pacing is rarely mentioned without its “GET-lite” cousin “pacing up” or “able to do more” and “as your symptoms decrease and improve” I’m all for...
Regular readers of this thread may be interested to know that a new survey has been released - PREM (Patient Reported Experience Measure) Please...
Well, yes as you’ve discovered, once you’re in the red it takes time to get back out of it, stopping what you’re doing isn’t enough as the heart...
The daily score isn’t a guideline on how you’ll feel, it’s a measure of “stability” of your stats and reported sleep. You may feel fine! but...
The point being that it’s not an unknown phenomenon that some people have issues with sensory stimuli. It’s not a mysterious, never before...
Surely it’s a sensory processing difference?
This is a great point, what therapy guidelines say immediate exposure therapy to all sources of distress is the way to treat them?
I might email the BBC because I think it should be clearly stated that NHS England were unable to refer to any guidelines that stated it’s...
Yes I think this is what I felt, but wasn’t sure if I was “over reacting” it feels like “blame”
Ok got it.
Sorry you’ll have to explain it -bad days are due to energy use? Or not?
No, it’s not a paper its a leaflet
I’ve come across some NHS info which says that pwME might not know why some days are good and some bad, whilst it seems there’s no reason, it’s...
It would be nice for a G Monbiot or journo to get in at this stage and follow the bad science for a bit. It feels like this has the right...
Getting really obsessed with Visible and it taking over, apparently
I said nothing about it to the “HCP” Ijust told I was using visible app. Apparently you have to be really careful about Visible because you can...
Brilliant, have got it and will work through it.
I see Nuffield is offering free Long Covid and fatigue/low mood course, thank you Facebook algorithm
I think what irked me was the sentence in bold at the start of the press release “…managing dysautonomia POTS (Postural Orthostatic Tachycardia...
This takes me back to my working years. “Touchpoint” I can smell the consultancy fee from here. That’s a lot of ways to say wait until they’re...
Separate names with a comma.
