But she did talk about that generation of doctors trained the wrong way. She did acknowledge we’re still facing that nonsense.
I’m happy for the “general public” who didn’t know much about ME/CFS to hear it wasn’t researched properly because it was thought to be...
Which speciality has claimed Long Covid? I love how “thought to be psychological” is always spoken of in the past sense. “We’re smarter than that...
That was section 28 of the Local Government Act 1988. The Coroner will deal with The Coroners and Justice Act 2009. Lots of Acts have a section 28...
The final part of the Inquest - coroner will hear some more evidence and decided whether a “prevention of future deaths” section 28 report is...
Tell them your carer said they won’t take you, so you’re housebound without transport. The home visit nurses are out all day anyway, what’s one...
I read about DecodeME funding https://www.decodeme.org.uk/decodeme-dna-study-awarded-3m-funding/ Funded jointly by NIHR and Medical Research...
Indulge me please - if the UK govt agreed to fund research worth 100million pounds over 5 years, how would they choose who to distribute it to?
Even a public awareness campaign of how varied ME is and how changeable. When I was mild, someone really had a go at me for “joking” about a...
I think it would be better if you had a scientific advisor, because if you promote something with more holes than Swiss cheese, it will undermine...
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...
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...
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...
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...
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...
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
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