What could they do about this? Other than have a statement on their own website?
Reminder to Sonya, that the clinics and therefore BACME members, only ever see people at the milder end of the spectrum. This was confirmed by Dr...
Another thing to raise with Sonya, which I think she is already involved with, is linking up with Long Covid organisations, to combat the...
Re The Delivery PLan It would be good to know if anyone with lived experience of ME was involved in reviewing or analysing the large number of...
Repeating this ME Action survey or similar would be excellent. (Sian was involved) It was prepared very quickly and only ran for a couple of...
Thanks John and Lucibee. This version contains No 4, which was absent from Dave T's and other online versions: "4 CIRCUMSTANCES OF THE DEATH...
Also, let's keep BACME at the centre of what we produce, because they're all good chaps, have been doing this for years and we are looking forward.
Totally agree @Hoopoe, if there was a fraction of the understanding and empathy there is for pwMS, the burden of living with ME would be halved.
My mother in law died of this, so it would be good news for my daughter. Also my sister in law, her daughter and grand daughter. Edited to...
Worrying to see Dr Terry Segal of the notorious UCLH paediatric/adolescent clinic. Also Joanne Bond Kendall, who was physio in Bath and on the...
I've done acouple of screenshots, which should be easier to read or expandable.
BACME was involved in all three working groups, with 3 of them involved in the "Living with ME" group.
OMG, this sounds dreadful.
I'm so pleased that you are doing well @siobhanfirestone and many thanks for posting your treatments info on here.
Absolutely, there are physiological limitations, that cannot be remedied by raising her up 30 degrees a couple of times over the weekend (GET for...
Plus, even though we don't know the physiology we know that, as people deteriorate they have less energy/battery and for some of thos ewho are...
So sorry about this @tuppence.
People with moderate ME can also be harmed by lack of understanding of its impact, as Graham was.
Many thanks @Valerie Eliot Smith. Have sent your response to the person asking the question, who is closely involved with the inquest.
When considering nurses, be aware that one of the main dangers to youngsters with ME is a nurse consultant who ran the CFS service at GOSH (Great...
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