Search results

Yes, it is a meme, I used it to create mine!

Shame. Maybe he has changed? I like that he states there’s no treatment or even agreed management of ME though. I wish he’d tell BACME.

Of course, that’s what all this is: they can’t admit they don’t know and there aren’t any answers.

I really don’t know. We don’t get tested for viruses like chest infections or flu. It was flu-like, sweating, sore throat, cough, fatigue but never really very serious, just a bad cold, a bug, maybe a day off work, maybe skip the gym that week. I also developed hay fever and eczema during this...

The “caught a virus but didn’t get better” is really common and repeated everywhere. I certainly would have agreed. But actually, I’d been getting “a virus” every other month for some time, and it was many years before I was introduced to the idea that for pwME maybe things were going wrong...

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.