Blog: Frozen in Amber, "Energy systems and pacing in ME/CFS"

https://chronicallycaroline.com/2020/06/29/energy-systems-and-pacing-in-me-cfs/

 

I'm just reading her 'Losing a beloved career' article, and she says that progress in research was largely thwarted "for five years" by the dreaded PACE study. It was a lot longer than that, even in the US, wasn't it?

 

Dr Mark Guthridge has put together a twitter thread on the issue of ME/CFS and exercise
https://twitter.com/user/status/1278308004845109249

 

Is it actually true and if so what are the concrete benefits? I am confused by the language used.

If 'in theory can be trained to be more efficient .. ' (the rest of that bit sadly reads like a GET apologist wrote it)


It either is or isn't. If correct there would be lots of patients doing this and reporting back.

What am I missing in what seems like otherwise a useful analysis.

 

My guess, and only a guess (I'm not qualified for anything else), is that any improvement might be pretty marginal. Maybe that is what pacing is about, getting the most from what little you have. Maybe that is why my wife has improved slightly over the years, but only slightly. She is good at pacing.

And it does say "in theory".

 

She mentions this paper by Workwell https://academic.oup.com/ptj/article/90/4/602/2888236 which talks about the short interval training but it's a conceptal model and I can't find any data on this approach being tested on real patients.

It may be that even if a program is designed by and overseen by blah, blah blah it simply doesn't work or the benefits returned for the exertion are not worth it.

I know she said "in theory" but the language used doesn't seem to match up with that.

Where is this "well designed pacing program that harnesses both systems"? I'd like to use this to do some useful things and show a benefit in a tangible way.

 

Even the good guys in this field seem to be really struggling with the idea that the activity limit in ME is not negotiable.

Doesn't mean it won't vary over time, or that by careful management and lots of practice patients cannot improve their situation over time and make the most of what they can do.

But it is still just learning how to live within the harsh and unforgiving limits imposed by the disease, not how to 'overcome' the limits.

We see a parallel with how governments and populations are currently responding to SARS-CoV-2. It is quite clear that the majority still don't get the central fact that we humans don't set the rules of this game, the virus does. All we can do is learn those rules and live by them (until we get a vaccine).

Same with ME.

 

From the videos I have seen by Mark Van Ness I think he is talking about the way I improved what I can do. I lost all my carers so I ended up spending all day in a chair or bed with a plastic tub of sandwiches for my dinner and a water bottle because it took all I could to get to the toilet.

I started by standing on my own for a few seconds and over the course of a couple of weeks I was able to get to the living room door without help (still needed a frame for vertigo though). That was 20 year ago.

By making changes that were within the first minute of moving I gradually managed to walk to the kitchen and now I can get to the start of my garden and have a seat. Now this is nothing like normal, but the difference it has made to my life is difficult to overstate.

When I read the Workwell papers and listened to what they said I realised that I had done what they call anaerobic training. I have many setbacks and when I my dysautonomia became much worse I was almost back to where I started. Each spring it takes weeks to get into the garden again but I can manage without payback though how much I can do varies day to day.

Some people are just too ill to do anything but the advice fits in with the way I could do things if I broke them down into steps when I was less sick. Like hoovering over a few hours.

It is basically a way of pacing with tiny little extras building up over months.

 

What you describe took me 5 1/2 years to reach that point.

During the first several years of illness I was only able to 'build up' when I started feeling better.

 

Exactly. It is nothing like GET and is not a cure just a way of getting a little bit more out of life if it is possible.

In the videos, they also talk about small changes you can make that can help like packing your shopping into bags in categories like freezer, fridge, cupboard then when you get home you just put away the freezer one.

Sadly the very severely affected can't take advantage of this way of thinking but it might help people to not become so bad if they keep exertion under two minutes.

Nowadays, I will do something for about a minute and a half then rest and have found that my heart rate shoots up if I carry on beyond that. (Not counting the POTS things, of course)

 

Anything that might eventually give even a tiny improvement is worth considering.

However, something they don't seem to acknowledge is that it can take a very long time for a very tiny, if worthwhile, improvement.

That tiny improvement can be completely wiped out by all sorts of things beyond our control - a heat wave, a neighbour's building project, catching a cold, the clocks going forward or back & so on.

In addition all this breaking jobs down into smaller tasks and needing to be extremely organized is in itself an huge extra burden on those with cognitive symptoms.

I'm not saying it's not worthwhile but, to a certain degree it's twiddling at the edges when what we really need is appropriate care and support. For example, if a carer were available to help with washing & dressing or there was help available with basic housework & putting the shopping away then at least some precious energy might be released for things that might make life more bearable. Like a chat with a friend or being able to sit in the garden for a bit.

In addition, there is an unrecognised psychological impact of being highly organized, highly disciplined over a very long period of time for a tiny, if worthwhile, gain only to have it snatched away from you because the clocks changed or something. Living with ME takes a vast amount of psychological and emotional resilience and that in itself takes energy.

 

That's how I do when I get my groceries delivered to my home - things that go in the freezer first, then leave the rest for several hours and then what needs to go in the fridge, cupboard the following days etc.

 

Yes, workflows. Adjusting workflows to best suit the need is a very sensible approach to always consider.