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

https://www.leedsandyorkpft.nhs.uk/...-long-covid-to-take-part-in-a-research-study/


The University of Manchester are looking for adults with ME/CFS or Long Covid to take part in a study to develop a clinical assessment toolkit.

The University of Manchester are working with people with ME/CFS (PwME), or Long Covid and ME/CFS services to develop a series of questionnaires, called Patient Reported Outcome Measures (or PROMs). These will help PwME/CFS and ME/CFS services identify, understand and quantify people’s symptoms and disabilities, support goal setting and treatment planning, and monitor changes.

This the second PROM – a questionnaire to measure the increase in symptoms after you exceed your baseline activity level. It is called the Post Activity Symptom Scale (PASS) has been co-produced with PwME/CFS and clinicians to ensure the questions capture the issues that are important to PwME/CFS, and it is easy to complete.

The University of Manchester now need PwME/CFS/Long Covid to complete the PASS to check that it produces good quality information. Two weeks after completing it, they will send a link to repeat it. This is so they can check how people’s symptoms fluctuate over the short term and whether the TIMES picks them up.

It will take 10-15 minutes to complete but it can be done in ‘chunks’ to aid pacing. It is fine for someone to help you.

Visit Developing a clinical assessment toolkit for people with ME/CFS and clinical services for more information or email the Chief Investigator Professor Sarah Tyson.

 

Q1. Have you been diagnosed with Myalgic encephalomyelitis (ME, also known as Chronic Fatigue Syndrome (CFS)?

Not clear whether people who have received either an ME/CFS or CFS diagnosis are meant to answer Yes or No. I assume they are meant to answer Yes, given that ME/CFS is used with the following questions.

Q11. Severity of ME/CFS or Long-Covid

I don't recognise the scale. I feel that there is a focus on physical functionality, and misses cognitive and energy limitations.

Q12 or 13. Asks about what causes increase in symptoms. Doesn't ask about/mention development of new symptoms.

Q15. In the last month, what level of physical activity (beyond your baseline) has typically triggered an increase in your symptoms?

Has no option to indicate that in the past month physical activity hasn't caused an increase in symptoms. I might be overthinking it, but I'm unsure if this is asking about a PEM-linked increase of symptoms or 'everyday' increase of symptoms. At the end of every day, I end up more fatigued and less cognitively able than a health person, even if I don't consider myself experiencing PEM, so if I answer on that basis then I would indicate "Very slight physical activity", whereas I would typically answer "Moderate physical activity" if it was about an increase of symptoms associated with PEM.

 

Last question I got to before giving up.

Q16. In the last month, what type of symptoms tend to increase when you have overdone it physically? (tick all those which are a problem for you)

I personally would consider a "level of physical activity (beyond your baseline) [that] has typically triggered an increase in your symptoms", from the previous question, to be different to "when you have overdone it physically". Again, there seems to be no consideration that new symptoms develop.


I gave up as I found myself attempting to understand what the authors meant, rather than being asked something I could answer without excessive thought. I was also disappointed that there is no 'back' button, to be able to go back (obviously) and amend my answers. [ETA: Correction, it does seem possible to go back and forward within sections of the questionnaire]. I also noticed that it is possible on those questions with multiple answers to give multiple, and conflicting, answers. I might try again at a later date.

 

This doesn't look good. They could have asked for feedback on the questionnaire rather than asking us to complete it.

I don't like the severity levels. They've merged together severe and very severe. I'm about 95% bedbound but miles from the very severe, life-threatening end. And then they've tacked on the bit about social & leisure activities,which even if "severely limited", sounds like popping down to the pub or recreation centre. Just big jumps throughout, the second category sounds like very little restriction.

Many of us need care or a wheelchair, but very few of us have that.

As @Trish says not accessible and a whole lot of "what do they mean by that"?

 

I have never had enough support to find a base line, unless someone could provide me with a cook house keeper, a valet, a chauffeur, a gardener and then a property manager to deal with all the staff.

In general at what ever level of impairment life will interfere with any attempt to establish long term stability.

 

I'm sure that nobody talked about 'baselines' until the UK Fatigue Clinics started from around 2005.

The so called 'Baseline' was used in the Fatigue clinics as a starting point from which to increase activity. Many Fatigue clinic patients (not surprisingly) were fooled into thinking the clinics' staff (psychologists, physios, OTs) understood ME because many patients were guided towards initially *reducing* their activity until they found what was supposed to be their 'baseline' - THEN they were guided to gradually Increase their activity, to beyond the so called 'Baseline' and to beyond their initial levels of functioning.

Those Fatigue clinics are responsible for a great many long term relapses, grave long term worsening of symptoms, with huge numbers of ME sufferers going from mild or moderate to severe/very severe and bedbound, from semi mobile to unable to walk at all. A great many of those ME patients never recovered their level of functioning from before they attended the Fatigue Clinics.

 

To my eye the questionnaire asks for far too much 'interpreted' information. With my limited experience of Longish Covid I am never really sure what made me worse or when or whether I am doing less than I would have done or whatever. I just feel knackered and too knackered to think about what I might have been doing. Afterwards I forget the sequence of events.

I think there is also a problem with grades of disability etc. with all sorts of different criteria coming in at each stage. I reckoned I could be in at least 3 categories on one question on the basis of different bits of criteria.

My biggest concern with anything like this is that it is supposed to be used for everything - including ominous sounding things like 'goal setting' and 'treatment planning'. Why should it have anything to do with treatment planning if we have no treatment and no rationale for treatment? If the treatment turns out to be a course of drug Z then I see no reason why a questionnaire like this would be of any relevance.

 

Yes!

 

ooh this one needs a whole thread of its own. Agree! and what people think they are talking about as a concept and what is involved with that when they say it seems as variable as anything (not to mention of course it is another one of those leading terms that suggesting 'you can only go up' in its innate meaning, so 'loaded' like the term 'relapse' for decline/deterioration and so many more)

 

yes and the very concept seems to exempt the possibility that eg within a day one cannot do all of their essential needs. EDIT: ie you have to 'plan/factor in causing PEM' just to do the things that eventually become more problematic if 'not done' and calculate the minimum 'do' before you get worse 'consequences' vs PEM from. And do this for each 'task' you can cut out/down to a 'best you can' rather than 'PEM-free'.

In reality, it's a cross-your-fingers no unexpected visitor calls because you have to shower less than you need/would like and worse situation and working out the lesser of evils compromises between different essential activities being stretched further and further (tooth brushing vs showering vs proper meal eating vs other key things) across longer time-accounting periods than those professions who tend to use the term 'baseline' could even imagine or work with. And the energy used for 'unexpected' knocks out other planned things. So even that is 'just theory' anyway.

Now that is a problem because we've got a term that is both misleading in meaning, and exclusionary to the part of the spectrum that should be most important and given most care in any other medical condition. So the flaws in all of these things probably were just people being crap and lazy or kidding themselves it would help to start with 'something orthodox/already used for soemthing else' but the 'proper tailoring it to ensure it was applicable' never happened, but it has resulted in quite a divisive situation that led to the situation we have.

Which is where those who think they 'fix people' only see the milder and milder cases, because there is nothing to offer (at best) to those who even have mild but not that mild ME/CFS and more severe so they base their beliefs around self-fulfilling 'those satisfied seem to be the ones who attend regularly' and that sort of thing not noticing cart-before-horse because of their behavioural training. And almost noone understanding the more severe because even if they were well enough to try and articulate something much more complex and severe by that point vs milder, it is so opposite to the framework others have been primed with how is it going to get put into words that can be easily filled-in. And how is it going to be well-categorised so the specifics remain but the 'count' can be used of something?

I find the term divisive because immediately if someone 'doesn't have a baseline' they've apparently failed as a patient and can't be slotted into the scale. Importantly for this, I think changing the term and ergo 'reframing what it is we are trying to encapsulate' could lead to more 'medically-related/disability-appropriate' meaningful as far as measures for research items. Is it 'function' we are looking at here for example, or 'overall packet of energy' or 'severity of payback'.

I get the sentiment when it is used by 'friendlies' or allies, but think it again needs a better 'does what it says on the tin' term that is both inclusive and accommodates what real life is likely to look like. But mostly it has to be a term that an illness would use, rather than a personal trainer or coach? Even when the question really perhaps relates to the layperson's term 'greater debility than a normal person would expect from the same activity' eg unable to move for a whole weekend after having a shower.

I get that we also want to accommodate for the cumulative impact, which is laudable, but I'm not sure enough people will have access to enough experience (given thresholds shift as well as situations) without almost quite precise instructions as a 'test' on this attempt. And that probably does need a panel carefully coming up with clever ways of articulating that (which mightn't just be words in a question, but a diagram or something - we might need to actually be creative/think laterally here).

If we don't want all of these professionals to be assuming it's about setting us goals whilst offering no treatment to change the disability underneath, and we don't want to leave almost all patients egged-on to make themselves iller each year until they realised they've been misled this presumption of upward trajectory 'one day' which is so hard to drop (and a problem why I have a problem with this 'magical pacing sales pitch' sometimes), whilst not even offering any substantive change to their situation is strange. And they forget that 'assertiveness' takes energy, even if we weren't being effectively briefed against, which might be hard to also include in a calculation (sometimes the 'doing the activity' is less loss than the 'fight' of saying no).

 

Yeah. That’s my impression from the other side.

I object to these forms on principle. As an advocacy tool I don’t see a value I do see a deficit.

As a clinical tool such forms are rather insulting. Stop making us work for you healthcare professionals, we’ve done this for decades and here we still are with no gold but fools gold. It’s pretty I get that but it can’t be used medically as far as I’m aware.

HCPs love a document to reference but as far as I can see this is just another way to distance themselves from providing…, I’m going there…, ‘personalised care’.

That’s a political thing that the NHS needs to do now that there is a false austerity, passed down from government, making sure there is insufficient funds for actual Dr to Patient care. But I don’t think charities need to involve themselves with support for such things as will disadvantage patients by existing.bThe phrase…”in collaboration with patient representatives” has been used to validate many a valueless (to the patient) document or practice.


I understand the stakes are different but it reminds me of when Action for ME paid for participation in PACE trial so that they could “be in the room” as it was going to happen anyway.

To be called upon to fill out such forms is something awful. I will have to work on my answers using mental energy. It will be hit or miss whether I am capable of accurate reporting on a form with off the peg questions. But it doesn’t matter because whatever answer they get they will fit it into their own pre-existing ideological framework which will almost certainly be to a patients disadvantage. A dehumanising experience.

But all this labour, extracted from me that the department will then use as evidence of them having provided ‘assessment and evaluation’ if I hang around in the system long enough it can also stand in for ‘supportive treatment’ or ‘ongoing monitoring’. **** me if that isn’t a swindle, a con, a manipulation an exploitation.

 

That strikes home.

But is it? The NICE guidelines were based on evidence of usefulness. I don't see that here. PEM is important because it flags up a particular disease dynamic - feeling illi with an aberrant time relation to exertion. That aberrant time relation is what makes it a useful concept to me. Exactly what it feels like to the patient isn't necessarily something useful for professionals to ask about. It is important not to confuse sympathetic listening with extraction of useful information on which to base action.

Careful listening is crucially important, not just to be sympathetic, but also to identify aspects of disease that yield clues about mechanism. I spent years doing that. But that has nothing to do with wasting patients' time repeatedly in clinic gathering what looks like 'assessment' but which provides no useful data.