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I feel so sad reading this. Me too though. l won’t ask and no one has offered. For the reasons you describe for you and your daughter.

I :heart: this.

What an exciting project thanks for sharing this with us all!

That’s a find @Lou B Lou Ugg.

Thanks. Are the old ones still available to search? And Where would this article ought go, do you think?

Oh yes my angel! Please do. I feel like it’s like those articles on ME from 1993. Real historical gems in all their gorey splendour.

What when did that disappear? Is this the same as media articles on long COVID because I think that maybe the one I am thinking of here anyway? I’d say it would be Covid first because we’re still in a viral pandemic and moving into an even more deadly one. This article specifically is about...

Thanks for sharing! @Kalliope. Having scanned this it has some really good quotes from the people interviewed. But wee sneaky snarky little bit of propagandising from the author. Have you shared on the Covid media thread too?

Apparently.

Umm the header image of seated woman hand to head. Does not bode well. That and the fact that it’s the Guardian of BPS asking for your details and photo. Still it’s a simple form with a couple of contribution options and you may reply anonymously.

Yes I agree this was a very promising start. But it’s also true that we don’t know what will happen until it happens. With the best of intentions other priorities may overtake the in house literature review. Additionally long before this interaction with S4ME a great many people with ME and...

Yes. No, it isn’t.

I’m sure they do realise! Yes exactly it is.

The following is all from memory because I can’t re read the letter so apologies if I am misremembering or misrepresenting. It was in the reply to @Trish from Sonya. In the context of Trish saying that people from S4ME would happy look at materials and give feedback and Sonia replying that if...

You’re not wrong @Sasha that AfME could benefit some help, given they’d not managed to review and update their materials or associations in years clearly they do. But as @Trish & @Jonathan Edwards have mentioned in various places AfME have made it quite plain that they don’t want it to come...

Yes. I have all kinds of pain and heavy flu symptoms that can hit me almost instantly as well as rapid fatigue which may occur on its own. Fatigue is the word I’d use to describe a loss of function and strength and clarity and vague illness symptoms. I still don’t think of this as the onset of...

My argument wasn’t that patients don’t use those particular terms. Or many others too. It’s that patients in general with many horrible diseases including cancers will subscribe to ‘unhelpful beliefs’ and the wrong kind of terminology. I have no doubt that BACME and others on their side of the...

:sneaky:

Oh that’s a shame. I was hoping this was a good sign.

I don’t think safeguarding proceedings could reasonably be said to be triggered by patients or carers using the wrong terminology. Especially not this particular terminology. Brain fog is the word that doctors nurses OT’s and social workers have used for my symptoms. I have never once used it...