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So you might end up promoting bad science ideas to the media, community and parliamentarians? Sorry but I think that’s the opposite of “perfect is the enemy of good” * we can’t move for “good”, everyone everywhere is doing “their” best. The possibilities are endless. That’s why me, not even a...

im really sorry to ask this and it’s not meant badly, buy why do you want people to write how they would spend £100m? To what end? Is it for engagement?

There was a press release regarding the report, but the report itself is only shown to the parties- not “given” to them. Coroners reports aren’t public. That tweet is just someone paraphrasing what the coroner said.

https://www.rheumatology.org.uk/Portals/0/Documents/Policy/Adult-rheumatology-referral-guidance.pdf

It’s only for the parties at the inquest I think.

My last clinic was part of Infectious Diseases. I know the main “non-ME” people who I’ve met that really get the fatigue have HIV, especially before they got diagnosed or the right meds.

I think that “gap” needs its own public awareness campaign. Which is difficult as we’re only just being acknowledged, let alone understood.

Hi Karen and welcome! Great to hear you are not naïve! Many here including me don’t bother with social media or other online spaces as it’s too much hard work tbh. I’d appreciate if you’d engage with S4ME via the mods or in person! Are you working with the APPG on ME as I think there’s an...

I’m dreading next Friday, although not as much as Sarah Boothby and Sean O’Neill.

I thought this campaign was doing really good stuff at first. I’m gutted that it seems that they’re either naïve or problematic

Well now you had me looking! And I’ve been to the opticians today I’m wearing new lenses, they’ve been unfairly blamed :D

No where was he???

I see Sarah Tyson has signed

I could hear smells and feel voices!

It’s this

The MEA who have not shared the application or reasons for funding agreed.

This is in addition to assessment. It’s pure rehabbing.

You can’t go about asking patients what’s wrong with them. Much easier to write a list and get them to indicate the strength of what you think are the issues.

Is the data this generates going to form the “data set” which NICE said was missing? What was they required for? will patients be giving informed consent for their answers to be used in other purposes? what about symptoms that haven’t been listed? All this tells anyone is “people had...

I had it in hospital it was lovely. Very moreish.