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But also the information is relatively new. Many people have had ME for a long time. I had GET and CBT before I had a Facebook profile. NICE guidance release in 2022 - only three years ago. Educated middle class people have no reason to doubt their doctor! I have had this conversation with so...

Now, people believe “ME is real” but also they suspect your problem isn’t really ME. They are always suspicious that you are actually depressed or attention-seeking. You never have the right sort of ME. If you are in bed, severe etc then it’s “too serious” to be ME or you’re just depressed. If...

Erm, as frequently referred to on this site the NHS clinics are terrible, do not implement NICE guidelines, BACME pushes the disregulation model, most clinics are run by “Rehabilitation” physios, yes GET is bad but “pacing up” is fine. There is a world of double-speak and no real culture change...

Is this a story for The Canary? I feel like this needs to be widely known.

We need a regular person to go undercover and expose the level of pointless BS “advice” we get. Apparently when we point out how dumb it is, we are the problem. BRB just setting off to the library. Got my tent and sleeping bag, army supplies rations and phone, see you next week!

I think that’s a really good point, because people don’t know “how” to break away. You’re pretty vulnerable and hanging on to the idea that the medical professionals will somehow help you. How do you explain to everyone -family, friends, employer etc that you don’t want “medical help” any more...

Not much neutrality in Harry’s latest statement. It basically says F U Chalder, F U Graded Exercise.

Remember - if it’s not fixed increments it’s not GET, kids! Just like it’s not a pyramid, it’s an upside-down triangle…

That’s really interesting Trish. I always said the comms around the Tyson project felt like there was stuff in the background we weren’t being told - and not in a paranoid way, it just didn’t quite gel together properly so there had to be some facts or background missing. It never seemed like an...

Out of interest, does anyone know of any ME clinics doing 1-1 work with patients? Having gone around the referral route recently, the two at opposite ends of the country were both offering online group sessions. I think there was an initial assessment and diagnosis appointment but after that...

Perhaps we craft an AGM question to ask the MEA about this use of research funds?

It sounds like what it is - a tool to measure NHS clinic delivery/satisfaction. Which is fine, but don’t tell me you’re doing it for my benefit, when you absolutely are not. The short term clinic intervention also strengthens concerns about the “it’s not GET!” But why not try…doing more...

Anybody want to ask my question? Given that this app moves the admin burden to ME/CFS patients, and given it doesn’t do anything as well as other apps patients can already access*, scrapes free info from the web (like MEA website) and has a function to email professionals which can already be...

I might drop them a line letting them know my thoughts, am sure they will be thrilled. As I said, I do think it was naivety and the mea culpa seems to reflect that.

Same

So the app launch for Clinical Services is tomorrow. And the launch to the ME Community is on Weds.

Ok well I have ME/CFS so this is meaningless, good work Trudie!

Lots of people should know lots of things but they, in practice, do not.

It’s the app trap. It’s added value, isn’t it? Building and supporting the community. Ethically approved research happening now, near you, you can click and sign up. Part of their offering alongside podcasts/blog posts etc.

Basically the same disclaimer. I know I Stan Visible but I really think they’re a bit….pollyanna. They are IT people with LC. They added a research feed feature, it pulls data from a dot gov website, that’s nice, what could possibly go wrong? I think this might be the first difficult...