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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 Phil Hammond in a workshop for the JLA PSP. The workshops included a wide range of stakeholders and were convened to select in order, the ten most...

Another thing to raise with Sonya, which I think she is already involved with, is linking up with Long Covid organisations, to combat the rehab/BPS paradigm. Does she have any contacts who might be open to sharing the Current Cochrane fiasco with the LC groups?

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 reponses to the Interim Delivery Plan. Or even the DHSC staff who were co-ordinating and assisting the running of the "Attitudes and Education" and...

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 weeks, due to NICE time constraints. It is imperative that a survey such as this is run by a patient centred charity, though BACME can be asked to promote...

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 Maeve Boothby was 27 at the time of her death. She was diagnosed with ME at Frenchay hospital in 2011 and in 2019 it became so severe that she was...

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 clarify, hopefully

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 NICE GDL C'ttee and was one of those who resigned.

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 a very severely affected person) or by "making her feel better if her hair is washed or she can suck on a bit of toothpaste. Ideas based on normal...

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 very severe will not be able to chew/swallow/digest enough nutrition and hydration without some sort of physical feeding support, at least for a while.

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 Ormond St), which moved on to UCLH. It is now part of TRACCS Oh look, they're running a training day on 8 Nov "Getting on TRACC: Working with young...

Does anyone know who Wessely and co use as lawyers? For instance, the Tribunal where it was decided that PACE trial data, or a portion of it, could be released, c 2015. This followed Alem Mathees FOI request. All info re above or any other instances gratefully received by person asking the...