Re-framing GET as pacing, or vice-versa

[arewenearlythereyet]

ok folks while we're doing this topic we might as well do it comprehensively. so looking at the NHS manual I posted above there was a mention of the AFME booklet on pacing so I decided to revisit it because the AFME website was one of the first resources I had around the time I was first diagnosed 2 1/2 years ago.

it was published in 2013 and I discover that it was written by people from NHS clinic and the AFME medical adviser Alistair Millar

it is toned down somewhat and doesnt strongly emphasise increasing activity in a graded way - increasing as able is the phrase used

when you actually look at the whole thing there's barely any difference from the NHS manual - I'll call it PACE -sugarfree

https://www.actionforme.org.uk/uploads/pdfs/pacing-for-people-with-me-booklet.pdf

I know quite a few folks have blogged about pacing and there are a lot of patient generated resources out there

Im wondering if theres any merit in working on a replacement PACE-less guide to directly supercede the NHS document which can be presented to NICE guideline development committee as genuinely based on patient experience. It could be quite hard to ignore and if they did recommend NHS adopt it it would be a good step in moving to sensible non-harmful non patronising sessions. in my job I would have been able to turn this round pretty quickly by a combination of editing whats there and cutting out and replacing the bad stuff. We all know it is not rocket science. If I pace it as in the dictionary definition of pacing yourself - doing a couple of pages a day i could have an initial version in a couple of months. Obviously I would do a better job on writing standards than when Im just writing informal posts like this. I dont want to do that if others don't see the point or if people feel it is useful but should be a group effort.

its just an idea I wouldnt choose to do this but it is something I can do a decent job on if it is potentially worth doing - any thoughts?

I think it would be a good idea. I’ve bern suggesting something similar on another thread.

Tagging @Graham who has an opinion I believe

If it’s a goer I’m happy to do some leaflet screening or if you want to give me a section to prescreen/edit etc to help (I will need to fit it around work though).

I would also like to rewrite the NHS web site text

Probably need its own thread.

 

[JaimeS]

Im wondering if theres any merit in working on a replacement PACE-less guide to directly supercede the NHS document which can be presented to NICE guideline development committee as genuinely based on patient experience.

GREAT idea!

Also... The ten pence. The posset of gruel. The apple casting us out of paradisical clinics... not sure whether to or

If it’s a goer I’m happy to do some leaflet screening or if you want to give me a section to prescreen/edit etc to help (I will need to fit it around work though).

Ditto on all counts, if you're all right with allowing some rough colonial to have a gander.

The cynic in me says that they pretty much don't care about knowledge based in experience. It is less authentic and credible than whatever has been written down in the textbook they learned from fifteen years back.

All the same... once more into the breach!

 

[JaimeS]

Ah, btw -- check here https://www.meaction.net/resources/reports-and-fact-sheets/

There are some reports on GET that might be useful in formulating such a thing. All created by various ppl, some #MEA, some not, who have agreed to put their info up for the community to use.

 

[Sean]

Isn't there something wrong about the symbolism of the apple?

Apple juice is a laxative.

What that is symbolic of is another matter.

 

[Mithriel]

There is one point that is important about GET that I don't see mentioned.

In 1990 I was advised to do more exercise, but I had a three year old so wasn't able to do more (already fit to drop!) When he started nursery, the bus didn't go right to it so I had a hill to climb. At first I was breathless part of the way up, but after a few months I was able to get to the top no bother. I thought I was cured!!!

Then one day I was coming home and my legs just stopped working. My son climbed into our garden so he was safe but it took me about half an hour to get in the door dragging myself along the railings. I have needed a wheelchair since.

I had increased my fitness, but I had obviously been using my breathlessness as a cue for when to stop. Though that had got better my underlying disease, autoimmune or neurological, whatever, had carried on and I was damaging myself without realising it.

It took about 3 months for the damage to be done - I had been fit before as I did a lot of walking even though I had lots of other ME symptoms, like the way my eyelids would spasm shut so I had to collect my other kids from school while only able to see from a slit - so some of these "success stories" may be nothing of the sort.

People who do well with GET may be masking the illness so it is worsening without their knowledge but the harm will only be seen after the trial is finished or they have been discharged from the clinic.