Measuring the severity of ME

A very worthwhile exercise @Graham.

From my guineapig perspective I went through your list and had a total of 7 things I can do, but afterwards realised that it was unlikely that I would be able to do all those things on one day without payback. Each activity independently is different from cumulatively, which we all know.

I suspect I’m not being specific enough about ‘today’, and I think it may also reflect that I’m not as good at pacing as I would benefit from being. I might find it easier to fill in something at bedtime and then add to/amend the following day based on the delayed effect of the day before with an additional followup/feedback question or section?

 

I don’t think that’s frivolous @ Trish - the complexity of activities in real life varies and that’s the sort of thing that people wonder about when filling in questionaires.

Wrestling with that sort of thing that could potentially use up my cognitive capacity very quickly to that point where I can’t fill it in properly and resort to abandoning the exercise or guessing the answer. I appreciate the attempt here to wrestle with that because generally activity questionnaires do my head in.

 

Possibly some of these points have been addressed/are not relevant to this discussion --- haven't read the other posts!

A personal thought is that monitoring activity/ability to walk X metres---, and finding low activity/low functionality, will presumably be open to challenge i.e. on the grounds that patients are deconditioned, as they are housebound, and they are housebound because they do not leave the house to exercise! Therefore, they need to be "encouraged" to increase their activity levels --- PACE --- CBT --- GET!

Also, I'm wondering if activity monitoring/ability to do physical tasks could be made more objective i.e. by moving away from questionnaires and using some form of electronic monitoring instead? There was a recent study which showed that activity monitoring, using an electronic device, gave more accurate data i.e. compared to questionnaires (people overestimated their activity in questionnaires) - @Jonathan Edwards responded favourably re this study. I think this study used a stressor (tilt test?) and then monitored ability to function in the days which followed. The control group, and the people with ME, were clearly separated i.e. by the activity monitoring data.

Solve recently launched a "patient registry"; this incorporates an app which participants use to monitor their activity levels - still relies on the patients "subjective" assessment though.

I'm part of this group European ME Coalition (EMEC) - https://europeanmecoalition.com/

@Michiel Tack

 

My wife can do all but the last, she cannot run. But the others are highly variable, depending how many "mini rests" she gets and all manner of other nebulous variables, or whether she has the "power assistance" help of our beautiful dog, also known as her "outboard motor" .

 

I think that many of you have strayed quite a long way from the original concept, and in doing so, have made it much more difficult. It wasn't intended to measure in any way the complex nature of ME, to reflect its variability, to give a picture of what could be managed in a whole day, or to describe a person's ability to return to work. It was simply meant to be a measure of what different people with ME could actually manage to do as a one-off activity, and to see whether there was a hierarchy of activities that in some way reflected our more complex situations.

It's a bit like a tick list for house-hunting: semi-detached, three bedrooms, bathroom, downstairs toilet, garage, garden, etc. The list doesn't tell you what the house is really like or whether it will suit you, but it does create some sort of categories so that you can anticipate more what you are dealing with.

If I had two people with ME and one scored 12 on the list, and one scored 5, would that be enough to tell me that the latter person was more badly affected than the former? If so, the list works. If not, it doesn't.

I'd suggest that if she needs a mini rest, the answer is "no

Ah, now there's a problem. People quite happily perform all sorts of calculations with the sf-36 data, treating it as a scale, which of course, it is not. The problem with push button statistics is that people can perform all sorts of sophisticated tests without actually having to think carefully about the data. When all I had was pen, paper and a slide rule, I didn't carry out any statistical calculation until I was sure it was necessary.
So my first question to you would be, what do you want to measure and why?

 

Now that's an interesting alternative. I suppose I would previously have been 9/10, whereas now I am more 7/8. Notice that, as with most people, I am unable to give a straight answer. Do you think it is bred into us?

 

I don't want to measure anything, Graham. I am even more extreme than you. I have no interest in statistics. But I do think it is legitimate for people to ask for a formal test to show that two populations in a controlled trial are different, even if what is MORE important is the nature the difference.

 

How we we deal with the person who has had a stroke and also has ME?
Presumably the deficits need to be reasonably ascribable to ME and there has to be a way to nullify any scoring due to the stroke?

 

good idea but the read an email message should say read and understand - i can often read each word accurately but have no clue what the message of the sentence is.

Yes i think including the PIP phrasing and spelling out what 'normally' means, would be key. @Graham as Simbindi keeps referring to i think the benefit wording is good to include for clarification. The guides say something like can you do the task 'reliably, repeatedly (as many times as might reasonably be necessary), safely - including without any negative consequences such as pain/increased fatigue, and in a reasonable timeframe'.

You could include the 2 phrases below as examples

 

might it not be a good starting point to approach this like a research paper.
ie come up with a protocol to make it clear exactly what you are trying to achieve.
Namely is it a scale of severity for pwME or some kind of disability scale.

If it is the former then that must be made clear that it cannot be used for any other purpose.

One of things I dislike with the existing ME severity scales is trying to fit them into the mild, moderate, and severe categories. I would prefer a 1-10 scale with 10 being the most severe and 1 the least.
The other is the descriptive nature ( like @Trish has done ) of all the existing scales which cannot possibly cover all the different scenarios and force you to pick one or two that are closest.

Another approach is to go by symptom severity and frequency. Again this should be made clear that this is in relation to ME symptoms and not general level of disability.

 

To be honest, I wasn't particularly interested whether the limitations were due to ME or a combination of factors.

This is what I had in mind, and if I had had a normal brain, I would have realised that I needed to explain that first.

People, whether patients or researchers, often claim that something they have found improves ME (or whatever else it is). Researchers keep using graded scales such as the sf-36 or Chalder fatigue scale which I think are far too easily manipulated or misinterpreted.

I was looking for a simple, clear-cut, yes/no ranking for what a person can physically do. I'm not interested in how often they can do it (it isn't for work), but in reality if they can only walk 100 yards once in a day, and have to refrain from other activities, then that isn't a "normal" response to walking 100m. So the question about lifting a bag of groceries is to rule out those people who just can't do it without a cost. If I lift a bag of groceries on to a table, it has no particular effect on my functioning the rest of the day, so I would say yes. But I couldn't do it hour after hour: I can't do anything hour after hour – that's a different measure.

I don't think the PIP instructions are relevant here: in effect they measure stamina as much as physical limitations. I think my next step, unless someone can beat me to it, is to devise a simple but clear instruction at the start.

The intention was that it could be used to measure distinct improvement. Then, if anything really helped in a significant way, I would expect it to show up on the scale. It's arguable that something may have had a much smaller effect – too small to register on the questionnaire. But if that were the case, I would argue that the effect is too small to be a reliable effect.

So it is simply meant to be a ranking that can reflect a distinct change in physical abilities. It is not meant to be a description of how a person with ME finds life: that is far too complex a situation to give just a number to. Nor is it intended to represent the complexities of navigating a life with ME. I'd not dream of trying cognitive abilities.

Yes! My thoughts were that a ranking from 0 to 20 could be fine enough to measure distinct improvement, but hopefully chunky enough to cover minor fluctuations.

 

With M.E., surely fatigability is a key symptom? So being able to repeat an activity is highly relevant. The same with PEM. Any scale that doesn't address these concepts isn't going to register a meaningful improvement and actually that in itself means it would be easy for a practitioner to influence how a patient scores the items.

 

Just because UK ESA and PIP benefits assess a specific set of (very limited) functional abilities, doesn't mean that this approach is actually the best approach for what they are intended to do. Many people argue that these assessments should be looking at how an individual can manage in the 'real world', the actual job market, what care and support they need etc. But with M.E. there is no biomarker, so we assess severity based on functional capacity. Isn't what's important then to create a good selection of activities (I would argue including cognitively demanding ones is essential) that capture the full range of how our symptoms limit us?

 

This definitely works best with relative recency, and in those who had a healthy life as adults before. Or at least it's more accurate in that context. It's very hard to capture it properly in the standard circumstances of the 6 months of arbitrary delay, even less so that most people go through many years before the process starts.

So at least COVID offers the opportunity to do this. Without this context it would be hard to properly capture, but we "fortunately" now have this context available to us.

Because once that's done, it's possible to do the same thing as with the SF-36 and build a stratification based on a large population sample to serve as comparison, so that it's no longer comparing with your former health self, but with a normalized sample large enough to account for the diversity out there. Barring extremes, most people are within the same range of things they can do and sustain for long periods.