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I think it’s more the latter. I believe he has a relative who has had ME for many years, it was mentioned by him in an interview early on, but not going to discuss his personal life beyond what he has made public himself. In any case, he’s paying a subscription to leave comments. Not exactly...

This is his legacy. It’s not the glory he imagines it is.

This is really interesting and will be a great article, thanks for explaining it to us non-medicals

Similar.

The consultants gave that sort of line didn’t they? The Gastroconsult guy (I felt he was obnoxious) and Dr Strain, am sure I recall them talking of terms of her death being inevitable within x number of months.

That’s nice. How does the coroner explain Whitney Dafoe being alive and able to write to her, I wonder?

No they can both mean the same thing, to make a mistake. I’d argue faux pas would be more relevant to the doctors in fact, because it’s them being significantly and embarrassingly wrong, whereas cock-up is used more in jest.

I think you might have made one with the coffee at court!

No, they don’t.

Can’t find the report itself on the coroner’s website

I read a story about an Australian TV presenter who died from Motor Neurone Disease recently. She couldn’t digest food and rather than pursue further hospital treatment she decided to take palliative care. It struck me that there are similarities to Maeve’s situation. The difference is that...

I saw the funding for the role when reading their accounts. I think it’s been and gone.

They would be so demotivated if they didn’t help us get a positive outcome. Imagine having to go to work knowing you’re basically useless.

I’m actually seeing a future where we have to stand outside the hospital with leaflets saying “going to the ME/CFS service?” And handing out counter-propaganda. And we can’t even stand up or get there!

And who cares what ticks are in the boxes? The subsequent advice would still be “pace better” and maybe “speak to Adult Services” (who will not provide help, but the assessment takes so long you will have been safely discharged from this clinician before you find that out)

The MEA employed a person on a Fixed Term to look at NICE implementation and liaise with the NHS trusts to get it implemented, so they really know what they’re talking about. The MeA have really been pushing for implementation and I don’t think they’ve got very far.

That is just one hospital though. And 5 was an average, I think they said they had actually seen 7 in the past year? And there are 42 Integrated care boards in England, so if each has 7 patients 7 x 42 = 293. Just in England.

They can’t ask 1. As they don’t agree with using wearable tech. They think they are going to provide 2 and 3. No HCP is going to determine what my “energy envelope” is, the last time anyone tried to was in CBT and look how that worked out. Also I hate the term energy envelope what has an...

Whataboutery. The effort of having to explain from scratch to each person you interact with, what your illness is and what your needs are, just for them to start a debate about it.

That’s Trish. I have t read it properly yet as it’s already hacked me right off. I do not “overdo it” I am forced to do more than I can comfortably manage.