Care and Support Plan template free to download, Action for ME

MrMagoo said:
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 dont do that.
No, I can’t “just hoover one room each day, not the whole house” I can’t stand up long enough to do that. Or batch cook. And the house is becoming unsanitary. And it’s getting me down. And I’m tripping over stuff. So how do I pace? Oh and I have a hospital appointment next week.
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agreed!
 
MrMagoo said:
First of all, pacing is really hard. And you need to think about it, yourself, how you’re feeling, all the time. But don’t get obsessed with it. Notice what your body tells you! but practice mindfulness. Don’t dwell on pain, distract yourself but don’t forget you have to pace. Record your symptoms so you can review your health, but don’t focus on symptoms all the time as it can get you down. Don’t overdo it, but don’t do too little.
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The Goldilocks Theory of Managing ME. Requiring, of course, the help of an expensive expert to guide you down the Healthy Path of Moderation.

If I could get these 'experts' to understand just one thing it would not be the direct experience of the disease itself, it would be just how patronising, paternalistic, intrusive, invasive, insulting, infantilising, demeaning and degrading to patients is their whole shitty psycho-behavioural fairy tale, from the clinic to policy and medico-legal advice, and beyond.
 
Posted by AFME this morning
Perhaps gives insight into the background and reality of things

" We are very grateful for all the feedback shared about how this resource could be improved and also, how it has already been a useful resource for many.


s stated in the resource itself, we developed the template whilst working closely with people living with ME/CFS and are particularly grateful to the group of patients at North Bristol NHS Trust’s Bristol M.E. Service, who adapted the ‘This is ME’ guide to make it into a longer Care and Support Plan.

Ideally, an assessment by an experienced doctor would inform the development of any care and support plan. However, we also know that, from the thousands of calls and emails we respond to each year, that many people with ME/CFS don’t have access to an experienced clinician. This resource therefore aims to help people self-advocate for their needs; a right that is supported by the NICE guideline and the NHS constitution.

https://www.gov.uk/government/publi...-for-england/the-nhs-constitution-for-england"
 
I don't want a group of patients at the Bristol North Clinic speaking for me. Surely it was leaflets for patients written by the North Bristol Clinic that AFME used to send out to patients until relatively recently ( a few years ago, but not that long) that still recommended CBT and GET.
 
Lou B Lou said:
I don't want a group of patients at the Bristol North Clinic speaking for me. Surely it was patient leaflets by the North Bristol Clinic that AFME used to send out to patients until relatively recently ( a few years ago, but not that long) that still recommended CBT and GET.
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I have rather cheekily posted the MEAction clinic review of 2019 in which Bristol didn't come out too well in reply to this post . Someone will no doubt respond that thiing have changed - from the template it would seem not.

There seems to be a real effort at embedding a paradigm that should be being discarded. Sadly our charities don't seem to have much of a clue.
 
where Goudsmit says she got her initial concept of 'pacing'.
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I don't wish to bore anyone by delving too deep into the history, but this is an important point. The concept of activity pacing also appears in a number of places in the historic psychological and behaviouralist chronic pain literature well before its adoption by pwME, and it means something quite different there - something more like baselining-and-pacing-up rather than pacing as we as pwME understand it today.

In fact I wonder if some of the NHS clinics' confusion around pacing is based on what psychologists were taught about the term in the behaviouralist chronic pain context.

As just one example - this reference is from as far back as 1988:
pacing_chronic_pain.jpg
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I (and I'm sure other pwme) worked out a form of pacing many years before I'd even heard of pacing. Although I did work out I had to plan for certain activities, hospital appointments etc, and rested in advance (nobody told me to do that), tried to simplify things, on the whole the pacing developed in a kind of fluid, organic way, that still works for me. I had heard the term 'Listen to your body' in relation to ME and that helped a lot.


Edit Add: When first ill I went from moderate to severe/very severe within months. I didn't have a clue what was wrong with me. No carer. Just a friend who brought in food twice a week. Isolated. Couldn't use the phone even. But I concluded that whatever it was I had, that people could die of it. It was very scary. So the 'pacing' at that time was not anything I worked out, just trying to survive.



The idea of having to keep an activity diary and time myself is a cognitive horror to me. I just couldn't do it. It must be a great strain for pwme with significant cognitive disfunction to follow the diary keeping/time yourself instructions from the clinics.

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