Search results

Yeh I am wary of making people identifiable so I’m not sure if I should say?

Yeh there was someone at the meeting (who was anti BPS) nevertheless arguing for ‘a balance’ of BPS & non-BPS on the committee as though that was the best we could do. I wanted to scream noooo but the facilitator moved us on

I was trying to work this out. It seems different groups have different priorities - some more on children’s rights, others on social care etc. Also I worry that there is a strand of thought allied to the ‘ME & CFS are discrete entities’ notion that says that GET/CBT might be effective for some...

They seem much more interested in patient testimony/surveys etc. this time, which is the right approach I think. Of course they are also subjective but patients reporting that treatments have caused them harm/exacerbated symptoms is not to be dismissed & I think is not something that competes...

Hi. I think there were two psychiatrists on the table nearest the door. I went to speak to them after to try and work out what their MO is. One seemed vaguely sympathetic (but sometimes I think that can be a bit of an act) and the other not as much. From people who were sitting on the table...

can I ask how you get hold of ketotifen? is it prescription?

eep I've also had bad reactions to medications come to think of it. argh yeh I know how you feel! at least it seems there are some doctors that can treat it in the uk..?

oh yes please, I am in uk (London)

does anyone know how good GPs are in general with MCAS? I'm guessing generally not great?

aha. yeh I guess i'm trying to see if these kinda symptoms can be explained by ME, but that does look like something I should investigate! (I think i'm loath to be open to the fact I might have an additional diagnosis, I don't want any more!) I've started a lovely photo album of all of this but...

oh yeh I also get the burning scalp thing, but put that down to bleaching my hair to death (which it could well be I spose!)

Hello! I was wondering if anyone had any ideas about the following or gets similar symptoms? In themselves they're not particularly distressing or serious, but it's always nice to have more info... . little body twitches/shivers/jerks (not sure of best word to describe) - nothing to do with...

wow I really am overwhelmed by everyone's feedback. :hug:

(sorry - I didn't mean to imply that there aren't people who belong to multiple groups)

I think a good way to increase the article circulation is to tag groups that might be allies - disability journalists/ groups/orgs, feminist groups, lgbt groups for example, and politicians etc; to try and spread the story beyond us & to build solidarity & recognition of similar ways in which...

can I have a fish pie?

Perfect thanks

Thanks. Yeh I just found the FOI thing - seems it was dismissed on legitimate grounds?

Hello again - I've just been reminded by someone I'm speaking to about children especially being diagnosed with mental health labels like 'persistent refusal syndrome' when they don't get better by a certain point or refuse treatment. Again, if anyone has any personal experience of this or...

oh yeh really good point re the email! thanks :)