UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

Are you?

 

This

 

NG 206 . Care and support plan , managing symptoms .
Not a treatment plan - this terminology is obsolete.

I haven't looked at the questionnaire . I'm a carer and could not accurately respond . Some form.of assessment tool which is an accurate reflection of the impacts of this illness and doesn't suffer from the inbuilt ceiling effects of others is sorely needed , and I hope that something positive, specific enough and accurate can come of this .

However from the thread this looks like it's trying to be something for everyone , and that never works out well You can't keep everyone happy all the time and in trying to do so you may end up with a toolkit that lacks tools, or has the wrong tools.

My daughter is borderline moderate/ severe and we are acutely aware it would not take much to tip into severe.
Whilst there are event triggered crashes , cumulative effects ( from all types of input ) are insidious , more difficult to track , less acknowledged, and probably drive more PEM episodes ( I would vouch generally not just in my family). Is this not widely known within HCP circles ?

PEM is not simply symptom exacerbation - this is misinformation which belittles it's effect . It's not a simple ramping up ( even with bells on), pwME commonly report additional " PEM only " symptoms and these may differ between physically induced or cognitively induced PEM. That this is not acknowledged at this stage for a potential toolkit is worrying.

Life simply gets in the way - a support and care plan should seek to reduce life's impacts as has been mentioned by others - this is not treatment, but the provision of the kind of support that reduces social burdens - aids, accommodation ,financial support . .....

There is too much of a gulf between mild and severe to have a single accurate PROM and my usual gripe is that nothing is designed to reflect the experiences of severely affected - when looking at mild ME , it could be a different condition. It is so rarely understood. You could argue that even the mild/ moderate border is a significantly different animal from simply mild manifestation .

There needs to be objective definitions - effects are a further limiting in function , the only way to gauge this is by having some nuance as to extent / range of functional impact as well as symptoms / subjective descriptions .

Out of interest , what do PROMS lookalike for other progressive degenerative conditions ( as this is the reality for a not insignificant number ) MS?

 

Interesting question. I Googled MS and PROMS and got this hit first.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9326853/

It looks as if they don't work!

 

PEM/PENE is typically delayed. I may be exhausted with exacerbated symptoms from doing an activity, but the full force of PEM descends the following day or the day after and the next. Any activity attempted while in PEM makes the PEM effect much worse and delays any return to my original level of functioning before the PEM. It's not unusual to be seriously knocked out for weeks or months with PEM, not for minutes, hours or days.


Edit
@sarahtyson

 

This. I'm not severely ill, but I've never experienced PEM that only lasts minutes or a couple of hours. I find it worrying that something so transient is described as PEM, as it suggests a fundamental lack of understanding of what is arguably the defining phenomenon of ME.

I quite understand what @sarahtyson means about clinical notes and so on, but if I were being managed on an ongoing basis by a health professional, I would expect a much more general assessment:

How are you feeling, compared with the last appointment?

What's your general function like – better, worse, or the same?

Is there anything that might help?

Is there anything that's worrying you?

These are the kind of questions we go through at consultant reviews for other conditions. They're deliberately non-specific, as everyone's illness, life situation, and personal priorities are different. They allow me to focus on whatever is most important at the time, and the doctor to check for signs of progression or improvement; they also capture a record of the broad trajectory of my illness. If there are major changes or the doctor sees something worrying, a further appointment can be arranged to look at them in more depth.

I don't really understand why the management of ME would be different, or require a questionnaire that's so detailed and specific that it's never going to work for everyone (and actually risks working for no one).

 

@Hutan the link doesn’t work for me?

 

Link doesn't work for me, but can access thread from main page

 

Amazing job @Trish, i hope they listen.

 

Utterly incomprehensible.

“What level of physical activity triggered a worsening of symptoms?” With the options of “no physical activity is possible” and “very little physical activity”?

What on earth is “very little physical activity”?

Rolling over in bed? Using the toilet? Brushing teeth? Showering? Fetching a glass of water? Going for a five minute walk? This survey can’t distinguish between very severe and moderate ME.

If this project is to continue, rewrite it in terms of ADLs. The current phrasing is entirely detached from our lives.

 

Hi @sarahtyson. Thanks for engaging here in what may feel like quite a robust discussion.

I'm not in the UK so haven't completed the questionnaire. The following comments are based on the patient info and snippets posted here so are necessarily based on limited information. Some general comments first with more specific ones in later posts.

Improved PROMS that accurately document an individual's ME and PEM is something we sorely need which is why I'm spending so much effort on this. It's also important - crucial in fact - that the resulting data can be easily and correctly understood by people who are new to the ME field.

As you'll know, most current tools have a high level of ambiguity. Ambiguous language is the most obvious problem especially when people are not aware of the ambiguities and assume everyone shares their particular interpretation of a term. Most clearly demonstrated in this thread by the many different understandings of PEM, more on this later.

A very common reason for misunderstandings is that we try very hard to express exactly what we mean but fail to take into account how the reader/listener is likely to interpret our words once they've filtered them through their own life experience and prejudices. In the context of ME we're always battling some very deeply ingrained convictions others hold about our illness. There are a number of instances where the language used is playing into established prejudices, I'll mention a few later but you may want to review all your work through this lens. Ideally you would test how people interpret your proposed PROMS not just on a wide range of pwME from outside your own group's circle but also on people liable to hold unhelpful prejudices, be that poorly educated medical professionals or members the general population (which would give you an indication of how future pwME and their carers might interpret the PROMS). I don't know if you have the funding to do this sort of additional qualitative research, I hope you do.

Another large contributor to ambiguity is, I think, due to the current tools mixing functional levels, activity levels and symptom levels in unhelpful ways. It looks to me as though you have tried to address this to a degree in some sections but not all.

Overall my impression is that you're trying to do too many different things with a single questionnaire and it's not always clear to me what the practical value of some sections really is, some seem to be documenting for the sake of documenting. When there is no clarity there's also a greater risk of the tools being used in a manipulative fashion especially if used to evaluate a service provider's work. You could put an introduction to every session along the lines of we're asking these questions because they can help patients/carers/doctors/other to do x, y or z. This would help with formulating clear and to the point questions and it would help the people answering them with interpreting them as intended.

More specifics in the following posts

 

Baseline activity

You said baseline activity was the preferred term. That may be so but it is highly likely it is 'preferred' simply because of familiarity; it seems to be the term historically favoured by the UK clinics. This history also means that many people will also have internalised the concept that baseline activity is something you first find and then apply GET to. This may not be what you're trying to suggest but that's how many will interpret it. Energy Envelope is by far the preferable choice here.

Here are some thoughts I drafted some time ago for a different thread but didn't get around to posting but they fit just as well here

Baseline is an acceptable shorthand for any symptom load and functional level that is not PEM. The term isn't ideal in that it suggests a precisely ruled line when the reality is more of an inexpertly spun string of wool, fuzzy around the edges, thinner in some places, thicker in others, not quite lying flat and no two section of it exactly alike. But it's still a recognisable single piece of string that is distinguishable from the sections where it got all knotted up into a big tangled ball. It's useful to have a term that contrasts PEM and non-PEM territory even if the borders are fuzzy. We've searched and so far failed to find a better term for this. I guess one could get more technical and say something like 'within the range of the normal fluctuations of my baseline function' but that's getting away from shorthand use.

Baseline referring to activity levels is a different story altogether. In the UK in particular there's the history of baseline being the place where one starts GET. That alone is reason enough to not use baseline to refer to activity levels. There is no need to do so either; we already have a better alternative available and in common use, namely energy envelope. Whilst not ideal either it does work reasonably well to get the main message across, i.e. to stay within your limits. Like with the woollen string analogy it helps to visualise the envelope not as something perfect, like a brand-new crisp white envelope. My envelope is a tattered, crumpled thing I've tried to flatten and smooth with moderate success. So the space inside is larger in some places and more cramped in others and there are some really squeezed sections where some external object is weighing on the envelope. But even though it involves some fumbling about in the dark to get a sense of where the edges are it's still a helpful concept, stay within whatever your current envelope is and you'll be mostly ok, step outside it and there'll be trouble

 

Severity levels

I like that there are 5 levels rather than the usual 3 or 4.

I also like they're simply called Level 1/2/3/4/5 rather than mild through to (very) severe.

I like that there is less mixing of functional levels, activity levels and symptom levels than in the existing scales and that you have (mostly) stuck to functional levels.

I don't like some of the specific references to things patients 'need' at a given level because those 'needs', while frequent, are not universal but listing them creates an expectation that without them the patient can't be as severe as they say they are.

To illustrate, I'm broadly at level 4 but I don't use a wheelchair because it doesn't matter whether I walk 50m myself or am wheeled about, I'll crash regardless. I've been able to organise myself so I hardly ever have to cover that distance so there's no point in me having a wheelchair.

To illustrate further, years ago during a period of milder ME I was misdiagnosed with MS. There was an astonishing number of people - including a doctor - who questioned that diagnosis on the grounds that I wasn't in a wheelchair. As it turned out they were right about the diagnosis being wrong but their reasoning was faulty and based on wrong expectations.

So categorical phrasing like "needs a wheelchair" are problematic. You could rephrase as "some may need a wheelchair" or "many find a wheelchair increases their mobility"

While I think your severity level descriptions are an improvement on existing ones I'm not clear what purpose these levels serve? I can see they have some use where a brief description is required in advocacy or educational materials but beyond that?

For assessing functional level in a much more informative way for patients and doctors, have you had a look at the FUNCAP? It's pretty good, actually by far the best ME questionnaire out there. IMO it should be adopted widely rather than everyone reinventing the wheel.