I’m ditching “pacing” it implies you are steadily rationing something. The something is energy and I don’t have it. Energy and symptom...
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...
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...
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...
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.
You’re absolutely right. Its thanks to here that I now refer to “the mythical baseline” as let’s face it, who is able to identify a baseline? At...
I dunno, I think the NHS are working towards computerised records but it’s not all talking to each others GP/hospital/trust. So, paper it is! I...
Afraid not, I’m all ideas and no action. I’d be thrilled if someone else did contact them though.
Orthorexia has been around for so long! It used to be associated with OCD (germs, contamination etc) would cause people to exclude certain foods,...
I wonder if #thereforME would put out a rival one (the NICE one) all the film flam in the care plan is for the BSP brigade’s benefit, not ours,...
Doesn’t matter where they’re kept as no clinician looks at them or has the slightest interest
The BACME care plan has a section for you to rate symptoms and how severe they are. Which struck me as a lot of work to keep updated, with little...
It’s brilliant, Trish. Simple, clear, NICE led. If I wasn’t very crash I’d do a side by side
I dislike both - re-inventing the wheel and tinkering around the edges. This could be either.
Again, it’s developed by medical professionals. Not to be filled out by sick patients who can’t get a medic to be bothered.
Relapsing/remitting is standard though, it’s used in MS
Yes and he’s into both charities now.
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