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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...

Sorry, I didn't spot his name, but had whizzed through the list, so thought I might have missed it!

Yes, her name and Sarah Tyson both jumped out. Did anyone spot Pete Gladwell?

Totally agree, why don't you contact them and ask?

The survey would need to be completed by pwME (their carers or families), as the MEAction one was. The aim would be for it to be publicised in NHS clinics as well as by charities and other ME orgs.

I've found the DecodeME videos and Q&A, clear and informative

Thanks for the above: BACME's response to a request from Trish asking if more PPI would be allowed to join the conference was: "There will be two Forward ME members attending who can share information with people living with ME/CFS. We have therefore decided that, for this year's conference...

My daughter takes Ondansetron for nausea, not daily, but if we are driving somewhere or she is doing a bit more than usual. It needs to be prescribed. Sorry you are having such a tough time

I am currently a member as we are in the process of applying for PIP, for our daughter. I was very pleased to see the new specific guide. From a quick skim it has several useful pointers for a range of severity. As with applying for UC we will need to emphasise the problem of being able to do...

Would be good if the above link said ME rather than chronic fatigue. (Have just replied to his Tweet asking for this) The headline on the linked page is: Support Myalgic Encephalomyelitis/ Chronic Fatigue research Though the blurb says: "With donors like you, we can find solutions to Myalgic...

Probably best to ask @dave30th. Online view was generally restricted to the coroner, or others speaking. IIRC it was mainly Dave, other press, local and national and Jenny Wislon came with Dr Weir when he gave his evidence.

The original list of questions was compiledby Sean O'Neill the week before the Inquest, when Sarah and Neil were informed that Dr Shenton was not going to be well enough to attend the court. The coroner reviewed the list of questions to be sure they were appropriate. Most of the discussion...

Post from Linkedin re the Br Brian HughesBrian Hughes • 3rd+ • 3rd+Recently retired NHS executive, but not finished yetRecently retired NHS executive, but not finished yet6mo • 6 months ago So today marks a personal milestone in my life in the NHS. After 29 years of my executive career in...

Friend of friend who is a qualified counsellor said a few years ago that when people are referred to her these days, CBT is specified as the treatment. She would much rather use her knowledge and experience to offer her choice of what would help.

Great to hear from you again. :hug: Love the latest blog post

This sectioning is so similar to Bob. He was terrified of it happening again.