Search results

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 down to energy use. I don’t know why it’s bothering me so much - is it true? I don’t know that it can be proved, can it? Or is it the “blaming” tone...

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 ingredients to Bea story in its own right and a good live example of how BSP poisons the field.

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 get obsessive with it and it can do more harm than good.

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 Syndrome and OI Orthostatic Intolerance)…” reads as if dysautonomia is just POTS and OI, and from then on it’s as if dysautonomia can be used...

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 ready to return; reduce workload when they do.

Can I just repeat what I said elsewhere, other questionnaires are like “meh” whereas I feel like FUNCAP looks into my soul!

I’m not a scientist but I’m learning. Not sure where the blame lies here, but the headline on this story made me feel something was off, hence I posted here. So, dysautonomia is usually an umbrella term for some kind of issue with the autonomic nervous system (Google tells me) occurs in a...

https://meassociation.org.uk/2024/06/me-association-professor-manoj-sivan-to-develop-new-protocol-for-dysautonomia-in-me-cfs-and-long- sorry Dont know how to copy the text

Side issue, but someone doing “something” about all the things you can’t control would be good. And I probably mean a journalist, maybe some research? On this false standard that we can rest and pace as if we live in a sealed box. My cat can do this, because I’m his owner and I supply all his...

There was a negative incident fairly recently with Sarah Tyson ! She’s undertaking research funded by the ME Association and has ME herself. She called us all catastrophising hystericals and said no wonder nobody wants to work with ME (paraphrasing).

Visible doesn’t include sleep data, it asks you whether your sleep was ok/fair/poor/awful. They don’t estimate capacity, they give a rating each morning based on how stable your HRV etc is. I actually don’t care what my morning score on Visible is, I find that I can be overcome with fatigue out...

They are more reliable than a 90 question survey asking you to recall activity in the past month

In Ean’s MEpedia page there’s a good, sourced overview of S Wessely. Including M Williams. I agree the researcher doesn’t need to be “told” of his involvement, they can read more about it if that’s what they’re interested in doing.

Seriously, well done and I hope it’s a useful conversation.

Ok please remember not to threaten their lives, you know how pwME are terrifying and abusive/s

WOW excellent update! Hooray!

He still lives on the Isle of Man and works in IT, and photography. I don’t recall where I saw this, sorry. He fully recovered and I think he gets a fair amount of requests which he doesn’t take up. He’s easy to find on LinkedIn etc https://me-pedia.org/wiki/Ean_Proctor