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I’ve had it since I was young. Yes, the ocular muscles are needed so the eye can track and focus. Mine just gives out whenever they fancy. I still think “why don’t I put my glasses on” even though I have them on.

I’m wondering why TPN was offered late September. We heard how it wouldn’t be safe, would cause sepsis which would be fatal, earlier on. Was it offered because she was on end of life care, and so at that stage the “risk” of it killing her was balanced against her being in the process of dying...

After years, I met an optician who explained to me that my eye muscles (there are 6 in a ring around the eye) don’t function as usual, they don’t work together either. He asked if I had Chronic fatigue? He said he sees it a lot, he can tell. Made sense to me.

This is very true, I’ve had experience of the Guardian saying nothing supportive, but silently changing editorial direction. They’re very risk averse due to low staffing and tight margins.

my bold - going to write this out and put it in my wallet in case of hospital admission. This is why, whenever you get something minor done like looking at removing a mole, they warn of a 30% chance of X happening etc. All other specialisms seem to do this as a matter of course, it seems overly...

Here’s my twitter notes from Friday. Thanks to ME Advocates Ireland. Statement read by Kate Jenkins nurse and clinical matron RD&E She will be speaking to the statement of Ms S Hughes KJ has no personal knowledge of Maeve or Sarah. She is responsible for patient safety and can influence...

Yes but they’re all becoming eligible for a free bus pass and pension

They know the tide has turned and that’s why the best they can do is that “I’m an agreeable chap, let’s all join together” bit by Miller. Whilst they try to get their teeth into Covid and FND

A short piece on Channel 4 news

If we start from the theory that ME isn’t one thing, it’s a collection of illnesses which overlap or are similar, makes sense that some people find a treatment useful and others don’t.

This is the thing, to some extent we’ll have to manage our expectations about the outcome as it will never go far enough for us. My “work brain” is flagging that to me, but my heart breaks, because I know exactly how this happened. We all do.

This, thank you. The Coroner will likely conclude medics/DCC didn’t have appropriate training or knowledge. We know that gap exists thanks to BPS - the Coroner will recommend that gap is filled. I think Sean has probably been very canny in referencing the BPS brigade and the disbelief of...

Ah I just saw it being shared around. I’m trying to tackle the district nurse evidence and to be honest it’s just hard going. She did basically nothing.

A log by David J Black aka Scottish Legal regarding Sean O’Neill’s reference to Sir S W, I’ve not read yet but think it’s along the lines of “who is Simon, what has he done, why he is wrong” https://www.scottishlegal.com/articles/david-j-black-cherchez-la-shrink

Sean O’Neill- Coroners decision on 9 Aug and a Further hearing 27 Sept to consider whether a Prevention of Future Deaths report is needed

Th mail are STILL using that side panel “explainer” of Me saying the treatment is GET and CBT despite the charities writing to them <angry face> it’s actually an interesting article worth a read, apart from that. A lot more info from Dr Shelton.

Telegraph (no paywall)https://archive.ph/folpH Times (no paywall) https://archive.is/5GWpz

with regards to any next steps - changes in NHS, Social care, research funding, even calls for a public inquiry, I’d hope the MEAssociation and AfME have these things in mind, have sought the appropriate legal advice, comms advice as to whether to raise them. Of course we’re starting to think...

7pm twitter and in real life, light a candle if you’d like to join in

Right after the decision is my view.