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To say that there was a sharp intake of breath seeing some of the images used in the easy read would be an understatement of monumental proportions.

ME Association has written to the trust. https://meassociation.org.uk/2023/08/the-me-association-writes-to-oxford-nhs-trust-about-inaccurate-and-offensive-job-advert/ Sorry if this has since been shared my brain isn’t functioning enough to read all the posts on this thread..

How does ME get bundled with renal/transplant medicine? Actually, let me guess..nowhere else for it to go? But, what a horror job ad, when applied to ME patients. All the worst tropes wheeled out about us; To communicate effectively, empathically and clearly with team members and other medical...

Unsurprisingly, there are some comments on there already demonstrating why GPs need training..

Snap. I’m in no fit state right now to read it all, let alone respond. But, am hoping to try to break it down into chunks and read/digest . Best of luck to you finding a way too. Edit to sort my post out, signs of where my head is at!

We all have trust issues

Looks like there is an audio version too

It’s up! https://www.gov.uk/government/consultations/improving-the-experiences-of-people-with-mecfs-interim-delivery-plan

‘Technical issues’; code for we’ve been nobbled, again

That was exactly what first came to my mind when I read that there was a delay.. I hope our spidey senses are off on this!

Thanks for sharing @Tom Kindlon. Glad they have now published.

Suspect most of us have blocked him for the benefit of our sanity! But, I’ve taken one for the team and had a look.. He’s retweeted/entered a few convos about microclots (obviously, nothing positive about them) including some piece written by Deb Cohen, who, I think was the BBC journalist who...

Can’t help but feel that all the World ME Alliance members and others who have written, should publish now too. From what @Trish shared, the BMJ has rules that seem to give them wiggle room to use whatever timescales they like to publish, so, one would hope that those writing would be taking a...

Staggering is the right word. I don’t even know where to start as someone who has had (and has ongoing) dealings with an insurer, no doubt influenced by some of these individuals.. I won and they are paying, but not before I was subjected to what my wife described as the worst day of her life...

Presumably whatever response The World ME Alliance submitted has/will fall(en) foul of this same policy too - I therefore hope they will publish their response on their member sites as ME Action did.

I've been using it since April, it's not a life changing app in my experience, but having used for a while, it does start to suggest trends in management. The daily stability score takes a bit to get used to as it measures over a rolling period (I think 7 days), rather than just how you are that...

I quite like this approach, AfME have shared too. Basically 'the world' (ok, I know I'm extrapolating) vs a bunch of snarky, disgruntled doctors who refuse to accept that the science has gone against them and their perceived wisdom. Obviously, the proof will be in the pudding when it's...

It is possible to report the post, which I have done (in my mind for the first sentence). Sadly, it doesn't ask for any justification for reporting, so, don't hold out much hope of it being removed, but can only try.

I was required to engage with V360 as part of my Income Protection award and to be fair, my experience overall was positive - despite my concerns going in. I had 3 Zoom sessions with Beverley Knopps (the assessment was split at her suggestion so as to minimise the impact on me), who was very...

Sonya Chowdhury was also on Times Radio discussing it. They asked people to get in touch to give their experience of ME services in the NHS - email studio@times.radio Can possibly get a bit of noise going, even if it’s on a station listened to by about 25 people an hour