'Pacing for people with M.E.' Action for ME booklet - revised and updated January 2020.

Job creation and vested interest, BACME style

 

This
Basic theory and signposting to other resources/ info

 

Actually, I do think there is a place for extensive guidance, for two reasons (would need to be of better quality that this booklet though...):

One, because the limitations ME places on us are just too surreal for the newly diagnosed to truly comprehend. I certainly didn't get it. Yes, I started pacing as soon as I learned about it and thought I was doing all the right things. Which I did - but unwittingly not nearly strictly enough. It would never have occurred to me that something like taking a shower or talking on the phone for 5 minutes could be a problem. It had to be specifically pointed out to me. Nor was I able to believe that excessive PEM could lead to permanent deterioration even though I'd seen a sentence to that effect somewhere. I needed a much stronger warning than that.

While in the end learning to pace inevitably involves individual trial and error, I think - hope - the number of serious errors could be reduced if people got really good, early, and extensive information. The 2-page Emerge info sheet is excellent as an introduction to pacing but I don't think it's enough on its own.

Two, there's so much confusing, misleading and plain wrong information on the Internet that newly-diagnosed patients will stumble across that there's a need for something to counter it.

That's something I only realised after spending the last few months writing up some notes I'd made some time ago after conversations with an ME veteran who was helping me get my head around pacing. Turns out a large chunk of my notes aren't instructions at all but myth-busting, i.e. about stuff I'd read on the Internet, found confusing and run past my mentor who explained what was nonsense and why. I found that immensely valuable at the time and still return to it occasionally.

The scary bit is that despite this early and extensive mentoring I still didn't appreciate just how low my limits were and that exceeding them too much would lead to deterioration. Maybe I'm particularly thick in that respect, or maybe it's impossible to truly understand until you've made yourself more ill. Maybe we can't save others from going down that same road - but it's worth trying.

To that end I've given my tidied-up notes to ME Awareness NZ to see if any parts of them could be of wider use.

 

I think at some point however unfortunate, we all must learn some things by our experience.

I find this illness surreal. There are still days I have moments where I think -- this can't be happening.

IMO good detailed guidance will still need independent validation by the person experiencing it.

 

I think @Ravn makes good points. It took many, many years before I took it seriously enough.

Getting the idea in my head that just because I felt able to do something and really wanted to get that thing done, didn't necessarily mean it was okay to do it.

There is an element of but surely a 5 minute phone call? Especially, when everyone around you is encouraging you to do more.

On the other hand there is so much to get your head around....you cannot literally write a complete guide that will manage to get it perfectly right for everyone.

Perhaps 2 documents side by side. Companion guides. Common ME myths and misunderstandings & Pacing. When you request one, you automatically get the other?

However, as @Trish states, the more you cover, the more you need to address the pitfalls:

While I recognise many find the HR monitor a useful tool I have made myself much worse by using one. Nothing wrong with the monitor, but because changes needed in dose of thyroid meds, fluctuations in hormone levels, plus occasional anaemia can alter HR. Very easy to interpret the information incorrectly.

So if you were to include information on using HR devices or any other pacing aid you would need to point out where evidence is anecdotal (we haven't had trials with HR monitors that I know of), plus we would need to clearly document at least the common co morbidities that confound the information a HR monitor provides.

Whatever is in the document, it's focus should be on safety and protection of the patient's health rather then making it seem okay to find ways to do a bit more.

 

For me the point of a HR monitor isn't to tell me that I'm doing okay.

It's to tell me that I've overdone it before PEM hits, to give me warning so I stop, as soon as is practical, and prevent me making things worse.

Just going off my HR is under a certain value so I must be okay to do x,y, and zee, doesn't work for me.

Just as significant a warning, for me, is when my HR is in the 30's.

 

I like the idea of a myths busting pamphlet.

I don't know if there are any legal concerns to consider.

 

Perhaps rather than try to encompass that kind of detailed information re HR monitoring in an information guide the guide could provide links the person could explore when they're interested or ready to take on the new information?

It seems to me that links to old style static documents may be of limited use in that the advice doesn't suit everyone or becomes outdated. Documents should also let readers know about responsibly run sites (like this) where patients can discuss their experiences and highlight good points and drawbacks that might not otherwise be considered.

 

I found the 2013 version (not sure if it's the same one as was being amended after AfMEs 'epiphany').


(Note this is from the old version but still "
We are particularly grateful to Peter Gladwell,
Clinical Specialist Physiotherapist, Frenchay Hospital,
for his guidance on updating this booklet")

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

 

Oh no it hasn't.....

 

I detect some legal liability risk there...

That is demonstrably dangerous and baseless b*******.

 

Thought I'd wait for the first round of feedback from the folks at ME Awareness NZ before deciding where to take it. Could take a while; I exhorted them to carefully pace themselves wading through the lengthy document. The irony that you need to pace to read about pacing...

 

I think it's because most people without ME, and even some patients with ME, think one of the main problems is that ME patients are either not trying hard enough (have no motivation) -OR- are quitting far too quickly when they feel even a few tiny symptoms.

Sad to say that many folks don't seem to trust ME patients.

Edited to add: It's also important to counter the natural tendency to do too much and the disbelief that small actions could really cause a crash (as @Ravn points out in post #86 above)

 

[Bolding mine]

1 Really disliking the use of the word mental there. My preferred word is cognitive but maybe that's a personal hang up?

2 do most people find their limits slowly widen? Or is it just when people initially learn to pace themselves? Does anyone else find that there's a limit no matter what you do?[/QUOTE]
My limits have shrunk, no doubt. I look at things I used to take for granted even three months ago and can’t imagine how I did them.
You know, the more I hear from the charities, and I mean all of them, and the NHS, the more I just feel like we’re just being patronised. I often wish the NHS would just openly admit their ignorance; only when you understand where you actually are can you form a proper plan. In the meantime I’ll be happy if they just leave me alone. Pardon the rant!

 

Re: sleep I think the only advice they should be giving is to sleep exactly as much as your body will take. The body won’t sleep if it doesn’t need it. Never yet heard of someone sleeping themselves to death. Now the opposite, that is true