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I just asked ChatGPT and it said the main points were around lack of diagnostic test, reframing ME/CFS from BPS to medical, lack of specialist services, lack of research, lack of assistance with benefits and social care. In summary it said UK and US patients all pretty much faced the same...

I honestly don’t know how they could get their foot lodged in the mouth so regularly. At this point they’re just trolling pwME

The cynic in me wonders whether it’s a weird recruitment drive for the members website. Why such fanfare that CS had input into a nothing article on an unknown webpage.

Over on Social Channels… The MEA proudly announced that Charles has given input/advice on an article. They have said to read the article you should “search the article name in the graphic” so they are promoting an article, their involvement, but not providing a link.So far, so annoying. The...

I also get a hormone rush - I assume that’s what it is, no idea really - usually during PMT for a few hours I feel like the Incredible Hulk, I really need to go for a run/long walk/clean the whole house, and I can. Feel able to undertake feats of strength, would have an go at lifting a car if...

I wrote a whole post on why

Shame you chose such a divisive which will prevent that. And wrote an article conflating two different things which shouldn’t be. Meta. Maybe you’re the “lesbian AIDS” writer, well intentioned but erasing us, the ME/CFS community. Very post-post modern.

Super offensive then, as I suspected. As usual with ME/CFS this is “everything about us, without us” I hear EDS is being erased, why not write about that from your own experience?

Hello I found the title concerning due to my understanding of jokes from the 90s UK that it was unfair lesbians wouldn’t get AIDS (which is untrue, in particular in instances in South Africa of so called “corrective rape”). Even in 1999 the film “Boys Don't Cry” was released, I think there was...

Interesting. I am lucky in that I was able to get a suitable ground floor home and have some input into a kitchen-diner. I spend a lot of time thinking about how to organise it so it works for me, as well as small changes like coloured lights to create variety. It’s probably a very rich seam of...

I always feel like pacing implies there’s enough available, if only I would manage it properly. If I don’t have energy it’s because I stupidly burned through it all instead of pacing myself.

I knew I was seeing double then couldn’t find the other one, had to search a bit!

That’s a lot of info about you. Can you explain briefly please?

Thread to discuss latest PEM questionnaire here https://www.s4me.info/threads/dsq-pem-survey-depaul-university-open-october-2025.46456/

Also colloquially I think of pacing having positive connotations - either doing a run, or boozing. It’s usually something enjoyable you will be doing for a long period “the Wedding is at 12 and they have the reception booked until 2am, so pace yourself at the bar!”

I love rationing. In UK it has strong connotations of not being enough, meagre etc due to food rationing lasting so long after WWII. In the UK saying something is rationed really causes a “Sharp intake of breath” it’s not fun, it’s imposed on you, it’s hard to manage.

After reading @Trish excellent overview, I think “pacing” needs replacing. It’s over. I’m not using that word again. What a muddle.

I absolutely can’t wait to get stuck into it probably next month.

I should add this was after I told her I can’t speak or cook or use an oven or leave the house. She was also unable to describe who would buy these hypothetical cupcakes from me.

If only I could speak all day! The last time the job centre decided I needed a job, the woman was quite insistent I should start a business making cupcakes.