Yesterday I blogged about meeting a new friend for a cuppa.
While we were talking she talked about the in’s and out’s of having a child who is Autistic.
Then we talked about the in’s and out’s of having CFSME.
It’s the first time I’ve had to explain my experience of CFSME with someone who knew me before I became unwell and lost touch with me at that point.
The conversation went very well, thank you for asking.
She was concerned, attentive and thoughtful. At no point did I feel she didn’t take it seriously. Afterwards we carried on to talk about lots of other things which is good – because I’m not entirely about the ME, even though this blog makes it seem like I am ;-).
While we were talking though, I found myself describing MECFS like it’s on a spectrum, exactly as she was talking about her child who is on the autistic spectrum.
She understood this and so did I because it was a much better way of explaining ME than the one we currently have, much more intuitive to my experience as a patient.
How CFSME is categorised. High, moderate, severe.
Actually CFSME patients aren’t categorised onto a spectrum, they are clumped together into one of 3 groups: high, moderate and low functioning patients – or ‘severe.’ The severe group are called ‘the 25%.’
When I was a patient in an NHS ME Clinic, I was told that I had ‘moderate’ ME. I wasn’t given any more information about what that meant, I then found that out myself.
The MECFS Spectrum
In reality though, with the potential for anyone with ME to increase and decrease in functioning, I’ve often described it as a spectrum illness.
While I was talking with my friend yesterday, I drew a line on the table with high functioning to the right of me and with severe to the left of me. As I described how the last few years have been, I said:
“I usually sit about here if I manage my life properly.” I gestured to the middle of the moderate section of the table.
“But, I’ve been up here sometimes,” and I slid my hand up to the right, “saying that though I’ve also been in a very bad place,” and I slid my hand to the left.
We need new descriptors of this illness, one that acknowledges it is a spectrum disorder. One that says: “it can mean you are in one place and then improve or decline.”
That, in turn, would help research and treatment into MECFS.
The PACE trial, for instance, would have a different meaning if the entry criteria from the diagnostic criteria was in itself an acknowledgement that CFSME patients can improve and decline along that spectrum.
Do we all have a finite amount of energy to use depending on where we are on the spectrum?
When I’ve sat back and reflected on and analysed my experience of having CFSME, I’ve wondered why it is that some people seem to hold down jobs and relationships, perform other functions like running charities or doing voluntary work, or are carers but still have symptoms of this disease?
I’ll explain that again. I know what I can do to keep as well as possible, what’s in my life and I can cope with and what’s not. How does that relate to all other moderate CFSME patients?
Do I actually have exactly the same amount of energy as other moderate ME patients, but I’m simply choosing to spend it in different ways?
My friend, CB, is also a moderate patient. She, however has different things in her life than I do:
She has a 24/7 relationship
I can spend time writing, she can’t.
I can make it out of the house on most days for a short walk (as per graded exercise therapy tells me I should be doing), but she can’t do that every day.
Conversely, she can hold down a relationship 24/7 and I can’t do that.
She has lots more intimate and close relationships than I do and invests energy in them.
I do a lot more creative stuff and invest energy in that….
That’s a lot of cant’s …
Dealing with CFSME is a lot of trial and error. I’ve tried those things and she’s tried the things I do as well.
There’s a balance and we’ve both discovered what works for us and what we can do before the scales tip against us.
BUT I think she invests as much energy in doing the things she does, as I do in doing the things I do…
And that makes me wonder whether people on the MECFS spectrum actually have the same and defined and quantifiable amount of energy, not a personally finite and un-quantifiable amount of energy.
I also wonder if that amount of energy is quantifiable for stages on the MECFS spectrum.
Can the amount of energy itself be a measurement of how far along the spectrum someone is?
E.g. I have 5 hours before I start to decline in functioning, so I am – here – on the spectrum. So is he or she because they have 5 hours too, but not him or him, because they only have 30 minutes.
Count up that amount of energy …a straw poll or an idea for future research??????
If you got a group of people with all type of ME to detail what they do emotionally, physically and intellectually over a finite amount of time and at the same time you got them to state at which point they started to experience a decline in functioning.
Would that then give a clear indication of the average amount of energy at each stage of the spectrum?
Believe it or not, that isn’t part of the diagnostic criteria for CFSME.
- Define the MECFS spectrum better – as it has done with Autism.
- Suggest whether there is a finite amount of activity at different places on that spectrum.
The implications of that would be HUGE for us
And it would challenge the PACE trial very, very effectively…..
The Diagnostic criteria for CFSME that the PACE trial researchers used suggested that the symptoms of the disease are static and fixed. E.g. if you are in the moderate group, you’ll never be able to increase your functioning past the moderate group unless you carry out the treatment programmes used in the PACE trial.
The ‘successful outcomes’ touted in the research findings celebrate that a combination of GET and CBT is more effective in producing symptomatic improvement than standardised medical care or adaptive pacing therapy.
Well with a large piece of research into energy capacity and MECFS spectrum, you’d look at those research findings in an entirely different context.
You’d say: “Well yeah, MECFS is a spectrum disorder with finite amount of energy at various stages. Of course using CBT works, because it tells you to remove certain perceived negative, draining influences on your activity budget – that then gives you more energy to work with.”
We’d also know from that research that moderate patients near the top of the banding would have, say, an average of 4 hours of activity they can do. We’d know from the same research that high functioning patients would have an average of 6 hours of activity they can do.
MECFS is a spectrum – you can improve and get worse. I felt the PACE trial said, in a nutshell:
“By managing CFSME in this way, some people with CFSME might improve their functioning.”
If we had the researched underpinning the spectrum disorder of CFSME though and then we looked at the PACE trial alongside it, it would say:
“Er, yeah, no shit Sherlock, the spectrum research has told us that already. I know I can improve how I spend my energy budget. I’ve got to make choices about what I spend it on.”
“If I examine and work on what parts of my life that I don’t like or want and that detracts from that amount and deal with them, I’ll buy energy back into that 4 hours limit to do the things I do like and want in my life.”
“We know we can improve and we can also get worse – it’s a spectrum. By the PACE trial saying: “some people might get a bit better by using those techniques, well, tell me something that ain’t already in the definition of the illness!”
Copyright Lindy 2016