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

[Trish]

I don't know whether Sarah Tyson will continue to read this thread, or anyone from the MEA or BACME who is involved in and has some influence on this project. In the hope of being heard, I offer the following:

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.

I think this is key. If we are to have useful PROMS for ME/CFS they need include the disease specific phenomenon of PEM openly and clearly, eliciting first whether the person actually experiences PEM. Checking whether they experience PEF (post exercise/exertion fatigue), DOMS (delayed onset muscle soreness), EI (exertion intolerance), fatiguability, should be part of this, all of which we are likely to experience in addition to PEM, but without PEM it's not ME/CFS, in which case the person is likely to need different diagnosis and management.

And then secondly, for clinical and personal care, some information on the occurence of PEM eplsodes - frequency, duration, severity, changes in and new symptoms, changes in function - are likely to be useful, so better focused pacing advice and assistance and symptomatic treatments can be provided.

In my email comment on this questionnaire quoted in an earlier post, I suggested that questions on immediate effects of any activity be separated from those specifically on PEM, and that PEM be defined and explained before going on to ask questions about whether the pwME experiences it.

It seems that the opposite approach is being used here, with the term PEM being avoided altogether and vaguer 'post activity symptoms' being used instead. Yet the term 'baseline' is used, even though many aren't able to operate with a known and consistent baseline, leaving pwME in a quandary about which effects they are being asked to include.

The name seems designed to muddle PEM with other effects of exertion:

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.

Post Activity Symptom Scale (PASS) gives no clue that it's about PEM, and even the acronym PASS has the unfortunate association with pass/fail as if it were a test which will be judged. But more importantly, why not PEMQ, post-exertional malalse questionnaire.

I can see some value in asking in general terms things like have you noticed whether particular types of exertion - physical activity, thinking and remembering, social activity or emotional or stressful events - have a more significant effect on triggering episodes of PEM. That might lead to some discussion about what the pwME might be able to change or get assistance with in order to reduce deleterious effects on their health.

On the subject of whether this is a scale or a questionnaire, I think there is an important distinction, in my mind at least.

A questionnaire has questions on different aspects of a subject, in clinical care terms presumably intended to ensure different aspects of the patient's condition are conveyed succinctly to the clinician as a starting point for the consultation, to enable efficient transfer of key bit of information that will affect clinical care.

So for a PEM questionnaire, the aim is presumably to check whether the person is experiencing PEM according to a clear definition, and any particular features of it, such as new or particularly troubling symptoms that might be helped by medication, and whether new assistance is needed with pacing advice and aids, sick leave or adjustments if still in employment or education, provision of mobility aids and care etc.

A few tick boxes, and short spaces for writing a few words, might be useful for this purpose that enable the patient to convey which aspects are particularly important to them in this consultation, the aim being to conserve the patient's energy and help with their concentration and memory problems at the start of the consultation. It could even be done by the patient in advance to help pacing and shorten the consultation.

A scale, on the other hand, seems to be an information/data gathering exercise for clinic evaluation, or for assessing progress with a treatment or both. Since there is no treatment for ME/CFS, any calculation of a figure that's supposed to represent progress is inappropriate, and liable to pressure both on the patient to show 'progress' and on the therapist to demonstrate effectiveness.
This is where misinformation and potential for harm to patients is a real risk.

If i fill in the questionnaire indicating that very slight activity causes an increase in symptoms every day, which is true, but not PEM, then the therapist after a few sessions convinces me that I should rate activity that causes PEM as strenuous activity, my 'score' on the scale will show marked improvement, and the service, which may be as useful to me as a chocolate teapot, will fly through its service evaluation and its therapy approach written up as exemplary.

If I start off by understanding PEM and rate activity that triggers it as very strenuous, even though it is just a 20 minute walk, and then my ME deteriorates and tottering to the bathroom triggers PEM, there is no way of indicating on the questionnaire that I am able to do far less than before. 'Very strenuous' has morphed from 20 minutes to ten seconds of walking, but the score is the same. It may even be better, if I'm crashing less often because instead of trying to maintain a job, I'm lying in bed all day being cared for by a family member. My deterioration will pass unnoticed in my PEM score, so I will be recorded in the clinics data as stable or even improving and successfully pacing.

 

[Trish]

A further thought on baseline.

If all increases in symptoms following any exertion are counted as PEM, then for many of us, the 'baseline' is basal metabolism, ie the use of chemical energy needed to keep the body alive, including digestion, excretion, breathing, heartbeats and basic functioning of all organs. So at its most basic, that is everyone's baseline. Any exertion above that, including stress responses to sensory stimulation and input leads to 'fatiguablity' effects which may be so slight as to go unnoticed or be experienced as, for example, increasing pain, or slowed thinking, and will contribute to the cumulative effects of exertion. For the most extremely affected, this forces them to lie immobile in the dark and silence with even nutrients provided predigested.

For everyone else with ME/CFS, I contend that all stimuli and activity have a cumulative effect on symptoms and functional capacity, and resting between exertions enables abnormally slow recovery. This recovery is usually incomplete as real life impinges on the availability of resting opportunity, and therefore incomplete recovery leads to a cumulative effect of detriment. On the PASS questionnaire, this could mean all activity causes PEM, as it includes immediate and short lasting symptom increases. This is clearly unhelpful.

This pattern of cumulative detriment and symtoms buildup over a day means that trying to identify a single activity as the trigger that tipped us into a delayed PEM state is usually a fools errand. Maybe the focus on CPET as a useful PEM trigger for studies gives a false impression that it takes a single, identifiable activity to trigger PEM in real life. Sure that will be true sometimes, but for me at least, the effect is usually a result of cumulatively doing too much over a day or more.

 

[Kitty]

If I start off by understanding PEM and rate activity that triggers it as very strenuous, even though it is just a 20 minute walk, and then my ME deteriorates and tottering to the bathroom triggers PEM, there is no way of indicating on the questionnaire that I am able to do far less than before. 'Very strenuous' has morphed from 20 minutes to ten seconds of walking, but the score is the same. It may even be better, if I'm crashing less often because instead of trying to maintain a job, I'm lying in bed all day being cared for by a family member. My deterioration will pass unnoticed in my score, so I will be recorded in the clinics data as stable or even improving and successfully pacing.

This is key.

But I'd still like to know who the forms are for. Most pwME are managed by GPs, as almost no one in Britain seems to have an ME consultant (please correct me if that's wrong).

To begin with, a good proportion of those managed by GPs actively avoid discussing ME unless their hand is forced by needing a fit note for work or benefits. Their reasons are well-founded: they risk being labelled inappropriately as suffering from depression or anxiety, or worse still, as hypochondriacs. This would be a threat to their health if they were unlucky enough to develop another serious disease, as it may not be taken seriously until late in the day.

Even for those managed by open minded GPs, there isn't time in a 10-minute appointment to complete lengthy PROMs forms. Nor are patients likely to have scheduled reviews at which this kind of form might be used.

An infrastructure of consultant-led clinics needs to be set up before we can use PROMs, and even then, I'd be surprised if many consultants were enthusiastic. My experience from regular reviews of other conditions suggests they ask a small number of open questions, and allow patients to focus on what's most important to them.

 

[Trish]

You're right about doctors being unlikely to use these sorts of PROMS. If at all it will be likely to be a single number score or scores tracked over a course of therapy sent to them in a report on a course of therapy to put in their records, and likely to be highly misleading as I outlined above.

I think it's significant that this questionnaire is being designed by therapists, with both the leads, Sarah Tyson and Peter Gladwell being physios, and the members of BACME who seem to be involved in it being largely physios, OT's and CBT and other psychological therapists. Therapists are more likely to be involved in rehabilitative treatments and to be accustomed to using lots of questionnaires, as we have witnessed over the years with all the multitudes of PROMS inflicted on us. These seem to be largely intended for the dual purpose of patient level collecting information for patient records and assessing improvement in individuals undergoing rehablitation, and at clinic level for service evaluation.

From reading her bio, it seems Sarah Tyson's professional experience is mainly with stroke rehab where improvement can happen and rehabilitiation is expected to help. I leave it to her to tell us what her experience is with ME/CFS research. Pete Gladwell works in a pain and fatigue clinic including ME/CFS, so is presumably steeped in the culture of such data collection with questionnaires, and theoretically supposed to be an expert on ME/CFS, though past experience with his contribution to AfME booklet on pacing, he's a proponent of pacing-up, which can be as harmful as GET. Whether he's changed his mind since the NICE guidelines I have no idea.

My point is, this looks very much like the product of the culture among therapists in ME/CFS clinics of using masses of different questionnaires, and the idea that if we have to have that culture, it's better to have ones designed with input from the MEA and patients to replace the dire Chalder scale and other inappropriate tools currently used. We don't seem to be able to escape that culture.

It strikes me that my only encounter with a series of visits to a physio for rehab was when I broke my shoulder. There were no questionnaires, but I was given a sheet summarising with diagrams the exercises i was supposed to do, and it changed each week with added movements and effort required.
So not all therapy uses questionnaires.

 

[Kitty]

My point is, this looks very much like the product of the culture among therapists in ME/CFS clinics of using masses of different questionnaires, and the idea that if we have to have that culture, it's better to have ones designed with input from the MEA and patients to replace the dire Chalder scale and other inappropriate tools currently used. We don't seem to be able to escape that culture.

Good points.

I suspect many of us do our best to escape the culture by not participating in these clinics once we've been diagnosed, learned the basics of management, and realised there is no treatment. At their very best they consume valuable energy for little benefit, and the worst are actively harmful.

If they were led by consultants I might feel it was worth participating, as seeing patients is the way doctors learn to manage chronic illnesses. Attending once a year might not help me much, but if I could do it without too much detriment, it would help to develop the specialism. But with a disease like ME it needs to be doctors doing the learning, not therapists.


ETA: I'm not knocking therapists. I've seen some excellent OTs, and I'm grateful for the help they gave me. But I saw them in addition to consultants, not instead of.

 

[Jonathan Edwards]

Something that struck me is that if this 'toolkit' is just for ongoing clinical monitoring then these aren't 'outcome' measures. They are monitoring measures. 'Outcome' implies there result of some process. The process might be a treatment or it might be an acute illness like a stroke - you can have an outcome from a stroke. But for monitoring a chronic illness there is no specific process that has a recognisable 'outcome'. The illness waxes and wanes and there is no way to relate any particular 'result' to any particular event. There are no treatments that produces results sufficiently reliably to be recognised as results of that treatment so the measures are not outcomes of treatment.

Calling measures like this 'outcomes' is likely to perpetuate the rehabilitative mentality that needs to be moved away from.

 

[Trish]

I agree, I think I have said similar several times on this thread. The clue is in the name PROM: 'outcome' and 'measure' are not appropriate for ME.

To give a perverse example, if the outcome measure for a PEM PROM is to be frequency of episodes of PEM on the grounds that good pacing leads to fewer crashes, then the logic is to get everyone sick enough to leave work so they can rest more. I crash less frequently now I'm sicker because I can't go to work and have had to change my lifestyle drastically. My 'baseline' is much lower, but on a PEM frequency measure I'm a success story.

 

[JemPD]

but on a PEM frequency measure I'm a success story.

And, therefore, would then be assumed to be less sick and forced back to work (assuming you were of working age & not of 'independant' financial means)

 

[Sean]

It seems that the opposite approach is being used here, with the term PEM being avoided altogether and vaguer 'post activity symptoms' being used instead.

Any definition that does not include a delayed component, to differentiate between various post-activity responses (PEM, DOMS, etc), will fail.

If all increases in symptoms following any exertion are counted as PEM, then for many of us, the 'baseline' is basal metabolism, ie the use of chemical energy needed to keep the body alive, including digestion, excretion, breathing, heartbeats and basic functioning of all organs.

Worth noting here that basal metabolism is around 75-80% of all energy expenditure, and given the diagnosis of ME requires a large drop in activity levels (typically >50%), then we don't exactly have a lot of discretion in how to spend our remaining activity capacity to start with.

he's a proponent of pacing-up, which can be as harmful as GET.

Basically GET with a new hat.

It strikes me that my only encounter with a series of visits to a physio for rehab was when I broke my shoulder. There were no questionnaires, but I was given a sheet summarising with diagrams the exercises i was supposed to do, and it changed each week with added movements and effort required.

Many years ago I broke a bone in one hand, and it was in a cast for a few weeks. The interesting bit is when I saw the physio after the cast came off she said don't worry about any specific exercises, just do what activities you normally would with your hand, and build up to your normal level of those activities over 2-3 weeks. Worked fine for me.

I suspect many of us do our best to escape the culture by not participating in these clinics once we've been diagnosed, learned the basics of management, and realised there is no treatment. At their very best they consume valuable energy for little benefit, and the worst are actively harmful.

This.

 

[Trish]

Any definition that does not include a delayed component, to differentiate between various post-activity responses (PEM, DOMS, etc), will fail.

A further thought on not naming PEM and not differentiating it from PEF, DOMS, EI and fatiguability:

There is a concerted effort that has been going on for decades in the UK and some other countries to subsume ME/CFS within an umbrella term such as MUS, FND, and various functional and somatic symptom syndrome labels, all of which are proxies for what used to be called conversion disorder and before that hysteria.

They also all come under the heading psychosomatic disorders in this scenario, with any differences such as the existence of PEM wiped out of the definition and/or conflated with PEF/EI and DOMS, and attributed to deconditioning and fear/avoidance of exercise. See also Sharpe et al's invention of the Oxford Criteria in 1990 which explicitly included people with fatigue accompanying anxiety, depression and any idiopathic chronic fatigue lumped together with post infectious fatigue, and which only required chronic fatigue for diagnosis, thus attempting to wipe out any suggestion that PEM was a core feature, and make it disappear.

Still today the same people - Sharpe, White, Wessely, Chalder, Moss-Morris etc. don't seem to understand the difference between PEF/DOMS in people who are deconditioned and PEM. Far from going quiet after the NICE guideline removed the deconditioning/fear avoidance model and CBT/GET approach, it seems to have given them new impetus to spread their unfounded ideas, some even coming out of semi retirement to write articles and get them published in medical journals with all their chums adding their signatures. There are serious conflicts of interest involved.

Also the concept of fear/avoidance of exercise has led to pwME being subjected to swathes of psychological testing and PhD thesis writing trying to pin on us psychological traits such as perfectionism, catastrophising, over-focusing on symptoms, anxiety, depression, anhedonia, burn out etc, and predisposing factors they imagine we have such as childhood trauma, and, most disastrously for children with ME, accusing parents of FII. It's not uncommon to hear of therapists who are supposed to be supporting pwME spending the time digging around trying to pin these traits on them and break their imagined fear of exercise and tell them their symptoms are just normal ones they are being oversensitive to. The whole approach has been and continues to be disastrous for pwME.

Someone who understands this history would never fall into the trap of 'disappearing' the term PEM and replacing it with a vague umbrella term like "post activity symptoms", as in the proposed PASS.

This week has been traumatic for us, with the long awaited NIH study report finally being published, only to find at the heart of the abstract, and contaminating the research findings, a hypothesis of 'effort preference' leading to deconditioning -

Among the many physical and cognitive complaints, one defining feature of PI-ME/CFS was an alteration of effort preference, rather than physical or central fatigue, due to dysfunction of integrative brain regions potentially associated with central catechol pathway dysregulation, with consequences on autonomic functioning and physical conditioning.

which is eerily similar to the PACE manuals

Theoretical model GET assumes that CFS/ME is perpetuated by deconditioning (lack of fitness), reduced physical strength and altered perception of effort consequent upon reduced physical activity.

All this may seem far removed from an attempt to create a set of PROMS useful for clinical care of pwME. I think given the strong negative reaction to our attempts to be helpful, it seems there is still a persistent view within BACME that pwME are subject to irrational fears and behaviours such as catastrophising.

Please, let's put that behind us and assume it was just a human reaction of someone who has worked hard finding their work strongly critiqued. There are important points we are raising. I would hate the human over-reaction of one individual to lead to our work being dismissed.

I would like to suggest Sarah Tyson rejoin this discussion and encourage her co-researcher Peter Gladwell to join the discussion too. If others from BACME and the MEA who are sponsoring and supporting the research want to join us, all the better.

 

[Peter T]

This is the sort of nonsense that given people with ME such a bad reputation, and I have no interest in being further involved.

I have been pondering this phrase as it suggests @sarahtyson is at least in part in a world where people with ME have ‘such a bad reputation’.

That world includes the PACE associated academics whose calumnies of people with ME they were unable to sustain in a court of law or Professor Crawley who has publicly used demonstrable untruths about people with ME and other academics who had the temerity to question her experimental design in public. I am sad that Sarah felt driven to such an outburst but I am much sadder that she appears to have chosen to side with those who have been gaslighting us for decades. I don’t know if Sarah is aware that there are members here who have been involved in unjustified child protection action when families have tried to stop having GET imposed on their children, people who have been involved in fighting sectioning people with ME because they argued against what is now rejected by the current NICE guidelines. I don’t know if Sarah realises how insulting her comment is to a group that includes severely disabled people some of whom supposedly were on police terrorist watchlists because they had the temerity to criticise bad science, also how inappropriate it is to stigmatise an entire group of over three thousand people because you feel attacked by the comments of a few.

I had been building up to a time when I have the capacity to complete this questionnaire as I agree that we desperately need replacements for the terrible existing tools, however I wonder how much point there is when there is such unwillingness to engage with what was intended as constructive criticism and debate. This one comment highlights the enormous gulf between Sarah and a pretty diverse but not unrepresentative group of people with ME, albeit a group that engages in robust debate.

[added - I cross posted with @Trish above, and would not want to seem to be discouraging @sarahtyson from re engaging in this thread, indeed it I would welcome that as often it is when emotions get high that subsequent discussion achieves breakthroughs.]

 

[Jonathan Edwards]

Instead, I have been met with diatribes of, frankly, hysterical projection, catastrophising, conspiracy theories, overt hostility and insults. This is the sort of nonsense that given people with ME such a bad reputation, and I have no interest in being further involved.

I have only just seen this. A think it warrants an apology. Hopefully it was said in the heat of the moment.

 

[bobbler]

A further thought on baseline.

If all increases in symptoms following any exertion are counted as PEM, then for many of us, the 'baseline' is basal metabolism, ie the use of chemical energy needed to keep the body alive, including digestion, excretion, breathing, heartbeats and basic functioning of all organs. So at its most basic, that is everyone's baseline. Any exertion above that, including stress responses to sensory stimulation and input leads to 'fatiguablity' effects which may be so slight as to go unnoticed or be experienced as, for example, increasing pain, or slowed thinking, and will contribute to the cumulative effects of exertion. For the most extremely affected, this forces them to lie immobile in the dark and silence with even nutrients provided predigested.

For everyone else with ME/CFS, I contend that all stimuli and activity have a cumulative effect on symptoms and functional capacity, and resting between exertions enables abnormally slow recovery. This recovery is usually incomplete as real life impinges on the availability of resting opportunity, and therefore incomplete recovery leads to a cumulative effect of detriment. On the PASS questionnaire, this could mean all activity causes PEM, as it includes immediate and short lasting symptom increases. This is clearly unhelpful.

This pattern of cumulative detriment and symtoms buildup over a day means that trying to identify a single activity as the trigger that tipped us into a delayed PEM state is usually a fools errand. Maybe the focus on CPET as a useful PEM trigger for studies gives a false impression that it takes a single, identifiable activity to trigger PEM in real life. Sure that will be true sometimes, but for me at least, the effect is usually a result of cumulatively doing too much over a day or more.

I find this particular 'point on a scale' an important one to point out. If one has become ill enough they get near to this point they do get very aware of it - that there is a point on the MEA disability scale which equates to 'as long as you do literally nothing and have no exertion you don't get worse'. And that you are x amounts of toothbrushes, communications, different types of 'meals' etc leeway beyond that. And of course that is with pacing.

I think PEM is important, but I also think there was always going to be a particularly tough job unravelling the interacting aspects of fatiguability, PEM, ongoing symptoms (which for example you will have constantly the more severe you are but mightn't be as obviously constant in more mild) AND the cumulative.

We have a big issue with this cumulative not being well-covered I think because of the terminology not being there and consistent enough to make discussions on the same level as for eg PEM even. We got lumbered with terms like baseline, flares, crashes and all sorts of conflicting terms. And even the most experienced of us mightn't know whether that battering we are getting from catching a virus is going to leave us in - whatever the term is for 2-3 weeks acute recovery and 4months to get back to feeling on the road to where we were (which is always dicey because we get used to things so probably our estimates normally need adjusting up). OR whether it will be something more permanent. And is that because our threshold lowering in that meantime makes it harder to keep within (given very few of us are in positions that's even possible where we have a consistent, long-term 'baseline' of threshold of activity) etc or not.

I think as all of these jigsaw bits get covered then the later pieces are going to always be more and more complicated because it must be like trying to get one pin in place and then having to not just start from fresh with the next and so on, until the later pieces might be more strait-jacketed in ways that are generally useful to honing things down but might throw up tensions in others.

I did think the other day that having a few examples of 'anchor points' we could mentally do the thought test on to see whether it would be represented well within these might be useful communication tools. And I do think that boundary-point and the 10-20% above it is certainly on that is useful to test whether it can be well-accommodated and described.

 

[JohnTheJack]

I don't know whether Sarah Tyson will continue to read this thread, or anyone from the MEA or BACME who is involved in and has some influence on this project. In the hope of being heard, I offer the following.

I suggest this aware that it's work for someone else, but is it worth a letter* to MEA setting out major points made in this thread?

ETA: *ie email

 

[bobbler]

I have been pondering this phrase as it suggests @sarahtyson is at least in part in a world where people with ME have ‘such a bad reputation’.

That world includes the PACE associated academics whose calumnies of people with ME they were unable to sustain in a court of law or Professor Crawley who has publicly used demonstrable untruths about people with ME and other academics who had the temerity to question her experimental design in public. I am sad that Sarah felt driven to such an outburst but I am much sadder that she appears to have chosen to side with those who have been gaslighting us for decades. I don’t know if Sarah is aware that there are members here who have been involved in unjustified child protection action when families have tried to stop having GET imposed on their children, people who have been involved in fighting sectioning people with ME because they argued against what is now rejected by the current NICE guidelines. I don’t know if Sarah realises how insulting her comment is to a group that includes severely disabled people some of whom supposedly were on police terrorist watchlists because they had the temerity to criticise bad science, also how inappropriate it is to stigmatise an entire group of over three thousand people because you feel attacked by the comments of a few.

I had been building up to a time when I have the capacity to complete this questionnaire as I agree that we desperately need replacements for the terrible existing tools, however I wonder how much point there is when there is such unwillingness to engage with what was intended as constructive criticism and debate. This one comment highlights the enormous gulf between Sarah and a pretty diverse but not unrepresentative group of people with ME, albeit a group that engages in robust debate.

[added - I cross posted with @Trish above, and would not want to seem to be discouraging @sarahtyson from re engaging in this thread, indeed it I would welcome that as often it is when emotions get high that subsequent discussion achieves breakthroughs.]

There is a fine, but important, line between someone who is self-conscious enough that they still believe those having misogynistic terms being thrown at them (often utterly irrationally) should tip-toe with what they say in order to 'not give them an excuse/fodder' and someone who believes genuinely 'this is why they say it'.

I don't want to assume on this, given I did note at one point just how many comments were being responded to within a day, as someone who has ME themselves, and how hard nuance can be to communicate - I'd say as I get more exhausted, but sometimes it starts badly and gets worse for me (and I just hope people put up with it as me trying to convey 'gist' with a lot of circumnavigation of words that might have been better).

From my own point of view I'm saying this rising above not liking any of those tropes at all and thinking that other than when they are being directly tackled or the specificity is pertinent then a generalised term, in a question form (of 'do we need to be careful here because of how it could be used/twisted') might be more helpful to avoid confusion.

I say this because these 'unevidenced tropes' have been the driver/'allow-gate' of significant, evidenced, objective harm I have had and caused significant, unnecessary disability to me. And am keen to have them listed and made into the anti-social flags that they are like any other serious 'isms' would be treated in eg press or workplace. But they have also been levied by those who pushed them explicitly to rhetorically shut me up before I've opened my mouth or 'win' discussions that were being lost on genuine terms.

Having to straddle that divide where there is a cultural 'bathing in' so these things potentially trip off others tongue/eye-roll to the extent one does have to not react (and I can imagine it because now I know what my unrelated workplace and friends, acquaintances and so on might have) if they were to get anything done in the day is something interesting to think about as another important project, particularly given for most conditions an important aspect of breakthroughs involved those with said conditions being able to enter those fields and be welcomed for what they add, and be/find themselves at home.

But I can see the relevance on the task potentially of saying 'these are the people we are trying to nudge' and what they'll throw/how 'sensitive' they act/are. Tricky one that is ironically more relevant to this thread (as I think whether it is a side-note) than I thought.

Is this like the 'Nice guidelines' compromise focus where we just 'got stuck with' the difficult squad (not Sarah but imagining x within all the staff/stakeholders and interpersonal stuff involved here), a certain proportion of whom see us as the difficult squad, and what they'll accept has to be a prime thought and giving them any excuse to pretend 'no they're the difficult ones' as a distraction is something someone sat in the middle is trying to manage. With the old status quo advantage being there for said distractions. If so, and it is relevant, then we might want to agree some more helpful/useful one-liners to better describe these 'complications' that need to be borne in mind?

 

[bobbler]

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?

THis is important, because it notes where ME/CFS really does need something that can allow for things to step in and make a real difference to yes, long-term outcomes and avoiding long-term eg years of disability that could be avoided if people can work out action-plans for these scenarios and find a way that these can not involve the irony of 'a lot of energy from pwme' to get them into place.

The regular check-up type thing is important for knowledge about the condition and many other issues, but something that could actually accommodate where these 'moments of truth' happen in care are going to be pretty key. Which I guess puts pressure on measures, but could be quite powerful to bear in mind as an aim to test the overall processes on?

 

[bobbler]

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).

These are perhaps relevant due to another point also: direct, complex questions are a particular nemesis/problem for those with cognitive fatigue and are draining. On the other hand information presented in a task format (which with instructions could achieve the same end) or allowing someone to prepare notes can be more accessible.

 

[Kitty]

These are perhaps relevant due to another point also: direct, complex questions are a particular nemesis/problem for those with cognitive fatigue and are draining. On the other hand information presented in a task format (which with instructions could achieve the same end) or allowing someone to prepare notes can be more accessible.

Very true. But out there in the normal world, you often meet with the same team (consultant or registrar) for extended periods, meaning you get used to the routine and can ask to do things a particular way.

At one of my clinics I realised I was getting thrown by an unexpected question every time, and then I'd forget things I wanted to discuss. So now I go in and say "Can I start with a report?". They're fine with this; they have things they need to check, but they don't mind me starting with mine. I note down anything I want to raise before I go.

I suppose pwME can still only dream of a perfectly ordinary outpatient clinic, run by doctors practising a specialism!

 

[Jonathan Edwards]

I suggest this aware that it's work for someone else, but is it worth a letter* to MEA setting out major points made in this thread?

ETA: *ie email

I have emailed Charles Shepherd.

 

[JohnTheJack]

I have emailed Charles Shepherd.

Thanks, Jo.