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Someone should do an FOI on how much the NHS has spent!

Starvation is a natural cause of death. It’s a legally complex area to argue that she wasn’t provided with food/treatment, because she “was” and she refused a further hospital admission. She chose to stay at home, we all “know” she’d have died in hospital but there’s no scientific evidence to...

If reps could just start with “its thought that….”

It wasn’t murder. It wasn’t an accident where a car ran you over. It wasn’t suicide. A heart attack from the shock of seeing an accident is natural causes.

I don’t think it’s great that Binita Kane stridently explained that ME pathology is oxygen to tissue problem as if it was fact. Apart from that, it was brilliant. Covered the 1970s shift to Psychiatry well, the gaps due to no training/send them to Psychiatry

More to the point, a geriatrician who deeply understands physical….and mental health. First prize goes to Jonathan Edwards. Helmsley is a geriatrician https://www.nuffieldhealth.com/consultants/dr-anthony-hemsley

I’d really want to see charities/advocates leading on the “no bed, no pathways, no suitable treatment, no stats and we don’t even know how many pwME in the UK” type of thing in the media off the back of this. The Times - NHS Bosses reject calls for specialist ME care Non paywall...

I’ve heard of it, I feel like it came about back in the “dirty hospitals/MRSA” scandal days but I might be imagining

Thank you for the updates Hutan and the tweeters. It’s looking likely there will be a S28 report!

It’s just a few minutes of deep breath in and out. Mine broke ages ago, but it did relax me. Brought my heart rate down.

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 psychological, but we know it’s biomedical. Also it can be very serious and deadly. Thats enough for now. The “post office scandal” type public inquiry can come...

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 type of thinking, aren’t you?”

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 or clause 28. There’s a very uninteresting s28 of the Equality Act 2010

The final part of the Inquest - coroner will hear some more evidence and decided whether a “prevention of future deaths” section 28 report is necessary.

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 more on the list?

I read about DecodeME funding https://www.decodeme.org.uk/decodeme-dna-study-awarded-3m-funding/ Funded jointly by NIHR and Medical Research Council Led by the ME/CFS Biomedical research partnership - made up of advocates, researchers and patients. So the key players are all there, that’s who...

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 serious illness - their school friend was bedbound with ME so they thought that’s what it was. They didn’t realise you could be mild and have a job. I now...

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 you. which would be a shame because your reach and messaging has been really good so far. You referenced that the £50m thrown at Long Covid wasn’t the...