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Well if you go to a baker, you’re going to get bread. Engage a physio, you’ll get physio.

Did we ever determine who his professional registration is with? Is he a medical Dr or a PhD Dr?

Do you promise that, if I say I don’t believe in them….:speechless:

Oh. I did wonder if he was “getting all up in” Maeve’s case and it seems I was right. Poor Sarah.

Exactly, none of us are going to Ibiza for a 48hour rave then going “ooopsie, might have overdone it a bit, silly me” these “booms” are just average activities for healthy people. Not even extreme activities for healthy people. What booming are vs pwME doing? Opening their eyes? Eating twice in...

But “boom and bust” as a reasoning for GET? And it’s CBT friend. It just never made sense to me. Do some exercise, then do more of it the following week. Irrespective of how demanding all other elements of that week were. So even if I had a week in the office and the next week I was travelling...

Maybe they only exist if you believe in them, so if you don’t demonstrate an effort preference for believing what you’re told over what you’ve experienced, you’ll never see them!

And social media suggests we are not the only ones writing a letter, comments on SM are also critical.

We know exercise can release endorphins. A bit of exercise coupled with feeling ok and achieving something is going to boost the average mood.

Boom and bust has the air of irresponsibly doesn’t it.

Thank you for writing this! It’s speaking to my soul. I don’t know if anyone has ever studied how many pwME had a catholic upbringing, butI’m default programmed to blame myself and fell “not good enough” and having the “boom and bust” exploded has made me feel lighter. when I can do a bit more...

Thanks for doing this @Trish

I’m ditching “pacing” it implies you are steadily rationing something. The something is energy and I don’t have it. Energy and symptom management from now on.

I think pacing would be easy enough if I didn’t have ME. And they don’t ever need to “follow through” on their pacing advice. How do you pace when you don’t have enough energy to clean, you don’t have support from friends or relatives and Social Services say you need to pay for a cleaner, they...

I think pacing has to be called “try to pace” it’s only ever an attempt. and actually it is managing the tiny amount of energy, as well as you can, in the hope it prevents deterioration. Pacing literature is toxic wellness. It sounds as if all you need to do is pace, which is easy, and maybe...

The survey may be weasel-worded however The response boxes had plenty of room for me to type the concerns I have!

Yes it’s total power imbalance

You’re right. It’s not good enough. No more “boom and bust” No more “if you feel you can increase…” No more “find your baseline”

Even the MEA posts on socials are hard work! I’ve seen ppl comment how it’s hard to follow links, difficult to navigate and the response was just “that’s how SM is configured” actually telling their audience, who are saying”we are struggling” to suck it up.

MEA and AfME seem to be playing really nicely with Gladwell and the BACME crew. I’m not sure why, but I think it’s too hard to change it from within.