S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire

I will look up the whole "Questionnaire" used by the Norfolk & Suffolk Service- which patients say can take up to an HOUR to do---- which the service manger told us -they uploaded to the "NOD Database"- yes, you know the one- BACME-Bristol -EC etc- BUT this was closed down in 2015 and discontinued I was told by the guy with responsibility for .....so who is telling Porkies here?

 

The NIH: Version 1.0 of ME/CFS Common Data Elements

https://www.commondataelements.ninds.nih.gov/MECFS.aspx#tab=Data_Standards

eta:cant see the CFQ on there but there are a hell of a lot of scales for all sorts

 

Exactly my feeling! Assigning a number scale to it somehow, magically, legitimises it. That statisticians (and others) rarely seem to look beyond the numbers has always baffled me. It has to make sense if it is to be of any use.

 

Isn't this the case for most claiming scientific authority?

 

The problem is that aspects of intelligence are measurable, but until we can really define what it is the big idea of intelligence is not measurable. Now stupidity, that is not measurable, though we can assess rationality and evidence.

 

This is just an aside, but the way I measure my own fatigue has varied over the years.

1) How long can I hold my arms above my head? I've always been able to raise my arms, but at my worst they would drop instantly I got them above my head.

2) How many stairs can I walk up before I start to hurt or start to run out of air? There have been periods in my life when I could only get upstairs on my bum, going one step, waiting for a bit, then another step...

3) How long does PEM last before I'm back to "normal for me"? This one is very subjective and depends on different things. For example, how much effort was I expending and for how long, to cause the PEM in the first place.

 

This was me in the early years. Now its not that my battery is low, its like somebody pawned it to feed their addiction. If I find out who ...

 

That is a big issue in ME that questionnaires typically fail to address.

 

Yes. A well managed patient might be much sicker but have no PEM, purely from good pacing or other strategies.

 

This appears to be mostly an artefact of history, post 1988.

 

I bet the immune system is exerting itself like crazy. It does not have to be muscle exertion.

 

I had said that before, and suggested a gas analysis without exercise might tell us a lot. Metabolic function is most probably badly compromised at that end of severity.

 

Absolutely. It's like part of an illusionist's trick. Take something airy fairy and intangible, stick an arbitrary number on it, and then convince everyone that anything with a number must be solidly tangible and OK. Unfortunately it's an illusion that seems to have been working far too well.

 

(excuse my lack of science) ... i'd like to see a scale that translates to real life ... and similar to the decibel scale ...

when i was 'mostly well', i could cycle 50 kms and only be a little bit tired, recover within a few hours. [100%]
with moderate ME, i struggle to walk 50 metres, slowly, and it takes me days to recover. [0.01%]
with mod/severe ME, i struggled to walk 10 metres, and had extreme symptoms (pain, loss of cognition, partially unconscious) [0.002%]

for people with ME who are bedbound tubefed and barely conscious [0.00000000000000001%]

 

It would be good if science had a way to properly (i.e. objectively) measure energy efficiency for PwME. There must be ways this is already being done, in sport for example. Useful energy out divided by total energy in, per unit time. Energy in is relatively simple, just adding up calories consumed. Energy out not so simple, but surely it's been sussed by now? Both at macro and microscopic levels? Over a few days. Trending what happens.

 

I had this done in 1993, using two different methods. The first is gas analysis, which I keep pushing, though you also need to have a controlled or measured diet to find out what is being consumed. The second was for the brain, and was a tagged glucose scan.

I did badly on both, and that was as a mild patient.

Metabolic rate testing is very old, but I am not sure how much formal research has been done, especially in ME, or how commonly its used.

 

I did not realize till this post that me becoming severe has been a change from could do things but paying for it later to can't do things because i don't have the energy in addition to paying for it later (plus worse cognitive functioning and worse sleep pattern)
Thank you, this clears up the transition, though i can't quite place a date to it but this is something to think about

 

I like your percentages, @pteropus ! I look at the standard scales for activity, and their percentages, or their number scale, and get frustrated that in no way do these match reality, unless the scale is logarithmic, like decibels. But of course, the decibel scale represents the way that sound is perceived: I certainly don't perceive my present life as being 20% of my active one.

One of the problems though is that we expend a large amount of energy just staying alive. Do we count staying the needs of staying alive, or do we focus on the energy left over to actually do things?

Now I'm completely making these numbers up, but if we use 500 to stay alive, and, when healthy, can spend 500 being active, what happens when we have ME? If we still use 500 to stay alive (and I know that we struggle, so in reality use less), but our activity amount drops to 50, have we dropped to 55% (550 versus 1000) or to 10% (50 out of 500)?

 

A rough analogy, albeit different timescales, is boiling a pan of milk on an electric cooker. For this analogy let's also assume the pan cannot be removed from the hob. If you wait until the milk is just coming to the boil before turning the ring off, the milk of course all boils over the sides (post exuberant milk?!). So instead you have to try and guess ahead of time when you think the heat needs to be turned off, before the signs are actually there, so the milk hopefully just comes to the boil at the same time it would stop boiling over! Takes practice.

 

revision history document
quite a lot of changes made in the last few months:

https://www.commondataelements.ninds.nih.gov/Doc/Updates/MECFS_CDE_Revision_History.docx

https://www.commondataelements.ninds.nih.gov/MECFS.aspx#tab=Updates