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AGM next month as well

I made this meme and wasn’t sure where to put it It’s a hand sinking in the sea and the ME clinic reaches out, high 5s and says “just pace” and the hand sinks.

Yeah but that’s got to be spelled out and written down, basic care isn’t working right now so it needs to be specified. Deaf people aren’t given translators or even a piece of paper with writing explaining things, palliative patients are shoved in noisy corridors for days…

We are saying the same thing - we need safe care. With a broken leg there is a op, a cast off then build up gently. With cancer there’s treatments, then build up, with MS there’s a relapse, then build up. With us we just…are. So we now need to build up…A crash isn’t seen as a massive warning...

Everything NHS thesedays is a pathway, a format, a checklist. All we need are decent pathways/checklist things because there’s no real “thought”.

I think that thees an issue with the different experiences people have with different disciplines. And this goes to the heart of the problem. I’ve had terrible experiences with physios and psychiatrists, so I would probably now write them off. However if I’d been seen by, say, a Physios For ME...

Thank you. I was trying to share info back then and quite a few times it was not well received and I was told to pipe down! It was strange to see it play out. The rush to be vegan, take antihistamines, keto diets, supplements…people declaring it had made such a difference, a few weeks later...

Many things thesedays are described on a “spectrum” for example Autistic Spectrum. The idea of levels of ME severity or an ME spectrum is totally missing in most public discussion. In addition, the progress or deterioration of ME isn’t really discussed because they will always cite there are no...

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...