This is a great diagram. I am so pleased with it and pleased to share it again with all M.E patients.
The
graphic is laden with information and ideas. One of the most
interesting things about it is that, if you observe M.E patients, they
don't stick with one response.
I've seen
patients try different approaches at different times of their lives.
I've seen doctors go in all gung-ho with wild recommendations to
exercise and then back right off when it goes pear-shaped. I've seen activists promote pacing while gradually increasing their own personal energy output on the quiet! Some patients simply waste
away in bed, waiting. Still others oscillate between high and low
activity (so called Boom - Bust behaviour).
Overall, it is as if M.E patients are searching every possible response to M.E in order to find something that works.
As this is M.E, a
highly contentious issue, there are vicious public and private arguments
about which response is THE ONE TRUE WAY and, conversely, there are
those patients who just pick any of the responses whenever it happens to
suit them at the time.
This is all very confusing for the
outside observer: If M.E patients are too ill to get out of bed, why
did I see one running around the park? When M.E patients rest aren't they
being lazy, or giving in to their condition? To the
outside observer pacing can simply appear to be a licence for an M.E
patient to do what they want when they want! And that's not fair.
And it's confusing to patients, even those of us who've recovered all or large amounts of our health and function. It is not easy to explain exactly how you did it!! The learning process is largely unconscious. We feel our way, blind to both our hypothetical energy budget and to the root causes of our conditions.
A medical advisor to a charity (himself a patient)
and I agreed that we had (at that point in time) recovered 70% of our
function. This is huge!! This is massive, this is enough to live a
life!! Both of us wanted to help other patients, but it was not
immediately obvious to either of us how exactly we did it!! And this is
common. You ask a recovered M.E patient what they did and they tell
you:
"Urm... I found a kind of balance between exercise and rest? Or something?"
Not
massively helpful. In fact the single most important thing that these
individuals tell us is that some people do get entirely or mostly over
M.E. I wish I'd known this when I was severely ill. It was like
watching my mind and body dying in front of me. It felt like there was no hope and no way out.
Reports of
recovery include acceptance that both rest
and exercise were important. Obviously both have to be kept within
proportion to the severity of the disease, and just as obviously, as people get
better, they are less limited by symptoms and tend exercise more. I must note strongly, however,
that exercise and rest used in combination seems to be an important
common factor in pretty much every M.E recovery story I've ever read.
But exercise is supposed to be wholly BAD isn't it? "DOCTORS HARMED US!" is the activists' refrain.
It
is awful to think that patients' desire to punish those who they believe harmed them through advice to exercise, may now be the very thing that is
keeping them locked into M.E. *Shudder*
As an M.E patient of 35 years, I know very well that exercise and wild medical advice to exercise can harm M.E patients. I was once out for a 9 month period after a week or so of over-exertion.
My initial response to M.E
was to "run it off". Now; I can't very well complain about medical advice
that was in exact alignment with what I myself initially chose to do! But more
than this:
While I absolutely know that exercise can harm an M.E
patient, I also know that exercise was a vital component in my
recovery. Without it I would still be stuck fast in the tar pit of
Myalgic Encephalomythingmejig.
Had I held onto my belief that exercise
was always bad, I'd not be up mountains. Had I held onto my belief that
medicine had entirely messed up, I'd not have been able to bury the
hatchet with a group of physicians that I respect.
What's most interesting about the diagram is the order in which I've set out the different responses.
When
you accept the idea that both rest and exercise can harm patients,
while simultaneously realising that both are required for human health
you start to see the problem facing all M.E patients.
There is a tiny gap between the over-exertion that surely brings on the awful, crushing, symptoms of PEM, (Post Exertional Malaise) and the under-exertion, that brings on unfitness, Pre-Exertional Malaise and a comparable amount of damage to health. There is however a route between the rock and the hard place. I later found out that Dr Lapp had already christened this feature of M.E, "The Narrow Way".
A balanced view of M.E respects medical warnings about under-exertion and patient warnings about
over-exertion in response to M.E.
When
we lay out common responses to M.E on top of this balanced view of the problem, the responses appear to define a ladder, or as we say here
in Wales: YSGOL.
The ladder appears to define a route out of M.E, one where our response to the condition must change over time.
What
this means is that if you are at a high level of activity, pacing is no
longer an appropriate approach to the management of your M.E.
Likewise, being told to go to the gym and work-out is inappropriate
advice for a severely ill M.E patient.
Where we apply the correct response at the correct time we climb to a higher rung of the ladder.
But
equally, where we stick with a response that has worked in the past, or worse, apply an
inappropriate response, then we are stuck fast, or move back down into the depths of M.E.
This is a boardgame where the ladders can become the snakes.
Afterward:
In a
bit of built-in linguistic wisdom "Ysgol", ladder, is also the Welsh word for "school". How very apt. For we have much to learn about how to respond
to our condition, and as such, it is well worth avoiding falling into
dogma, intransigence, and, I am sorry to say, the cult-like behaviour of M.E activism.
Instead, it is wise to listen to the consistent reports from those M.E patients who have recovered and try to learn how to gain the benefits of both exercise and rest, while leaving the disbenefits behind.
Good luck.
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Its a wonky kind of ladder I grant you. ;)
