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

[Amw66]

This initiative really concerns me as it is so basically flawed, and inputs can be too easily twisted to serve a different agenda
Being somewhat annoyed at life generally this afternoon I have posted on the ME Association Facebook page ( not a page I usually engage with).Comment below - not that it will have much effect, but my blood pressure is a bit lower.


Sadly too much of concern in this initiative than good. Gauging ability, illness trajectory and care input could and should be far simpler for energy strapped and cognitively challenged people. Ethics issues too -as the patient info leaflet has not been available for the first couple of questionnaires will info be disregarded as informed consent has not been given. Who are the regulatory bodies whom info will be shared with ? This project seems to have its inception pre new guidelines- it does not reference NICE guideline terms and concepts and is all but unworkable for severely affected. Where are objective measures? No concept of fatiguability and rolling PEM and its impact. Other conditions have found PROMS to be problematic ( MS to name but one) To what degree is this a coproduction - DeCode ME shows how it should be done - if it was a coproduction the questionnaires and approach would be radically different . This smacks of BACME retaining relevance and influence and justifying existence of clinics which have largely been shown to be not fit for purpose. Sadly MEA looks like being used to offer the veneer of respectability Action for ME offered PACE . Very , very sad.

 

[bobbler]

Just to try and stand back given everything going on currently. Is it 130ish members in BACME?

So maybe 130 staff members to re-educate / de-programme of their false beliefs, and then that number of staff to find who are capable of learning something useful to offer with the correct approach that we are really talking about here?

All of this wrestling with people who perhaps don't want to work in such a changed area/that paradigm ie to change and 'compromise'

is it about 130 people, many of whom might I'd assume just be members but not the 'deep believers' merely there for the contacts and career side of things etc. of being part of 'a group' that everything is being tip-toed around. ie they aren't one mass, but there will be a hierarchy

vs how many pwme etc and their needs etc, and the straightforward approach regarding needs of the illness?

 

[bobbler]

This initiative really concerns me as it is so basically flawed, and inputs can be too easily twisted to serve a different agenda
Being somewhat annoyed at life generally this afternoon I have posted on the ME Association Facebook page ( not a page I usually engage with).Comment below - not that it will have much effect, but my blood pressure is a bit lower.


Sadly too much of concern in this initiative than good. Gauging ability, illness trajectory and care input could and should be far simpler for energy strapped and cognitively challenged people. Ethics issues too -as the patient info leaflet has not been available for the first couple of questionnaires will info be disregarded as informed consent has not been given. Who are the regulatory bodies whom info will be shared with ? This project seems to have its inception pre new guidelines- it does not reference NICE guideline terms and concepts and is all but unworkable for severely affected. Where are objective measures? No concept of fatiguability and rolling PEM and its impact. Other conditions have found PROMS to be problematic ( MS to name but one) To what degree is this a coproduction - DeCode ME shows how it should be done - if it was a coproduction the questionnaires and approach would be radically different . This smacks of BACME retaining relevance and influence and justifying existence of clinics which have largely been shown to be not fit for purpose. Sadly MEA looks like being used to offer the veneer of respectability Action for ME offered PACE . Very , very sad.

Very good comment - I hope that it does have an effect.

I've come to the conclusion from this activity one that it is purely in the misnomer of 'rehab' paradigm - this one has particularly shown up how this measure will lead the targets/treatment/paradigm. A focus on measuring 'doing more activities on the list' and not about health which will lead to coercion in a way that doesn't fit the condition or the paradigm and will just lead and enforce the exact same misunderstandings of it that were supposed to change. These simply can't be used usefully for discussion about adaptations on things that can be adapted to make more room and reduce PEM affected other more important things people mightn't be able to do.

And yes the collection of all of this, with the current questions about the strange list of things under the consent ... with only certain 'definitions' or 'reasons' being allowed to be selected, well it is sewing a deliberate and inaccurate narrative easily. And can very much be twisted.

 

[Kitty]

Sadly MEA looks like being used to offer the veneer of respectability Action for ME offered PACE.

This.

The questionnaire shows zero understanding that our ability to do all activities is completely conditional on (a) how many others we've done or still need to do, (b) how essential it is that day, and (c) what happened yesterday, and the day before, and the day before that.

The only reliable answers most of us could give are No or It Depends.

 

[MrMagoo]

Yes indeed, as people get more experienced they learn to be more tenacious with their envelope because the world has been taught (explicitly by the very people who 'claimed to be there to help us') to give us no truck. And we still have needs of all kinds. Your food shopping goes from being able to enjoy grabbing that as you want to not only being delivered but then having a plan of how it will get to the cupboards. Based on what else is in that week.

Given the supposed justification for doing this project at all is supposed to be 'it will be useful for discussing with your HCP at appointments' to help with I assuming seeing whether your health is going up or down and how to manage it then the focus here is in utterly the wrong place.

Instead of 98 questions and 5 options, it should have been the other way around. So much more detail on the impact of the tasks and what other aspects of life get in the way of how you are likely able to do them. Things you wouldn't normally 'indulge for' so if they are being short-cutted...

Those 5 tasks could be chosen by the individual, but there will be commonalities and if someone aimed to understand the different levels they'd probably be able to cite a list of suggestions off the top of their head for each level. I imagine that showering would be there for every single level - except the more severe you get the more it would be another form of washing and that would still have impacts and issues due to someone entering the room etc. Brushing teeth another. I can't imagine a level where that wasn't difficult when in PEM/stuck in a situation where you are required to overwork vs your health to be able to do it as you want/need and get to work. They will be the areas that will creak at the seams.

And yes, someone might need to mention then a description of what other exertion issues or health decline are leading to that. But given people don't really have choices on things like what your boss required you to do or your kid needed, and that building site next to your office/home jack-hammering all day etc..

A smaller list would give a good professional enough of a sense and a discussion starting point. Even 25 items will be red herring people where a poor HCP fixates on why item 24 was avoided last month.

Given this is non-exhaustive as a list of what could be causing exertion in someone's day and that is an issue cumulatively day-on-day over the space of eg 6months (if it is just over) I can't even say this could be justified to give some sense of ability or disability to someone else.

Spot on -this is an example of the “take a “normal type person” look at what they do in a week and then look at reducing it, when really it should be the other way around, what is the minimum needed to be done (sleep, eat, toilet, wash) and scale up from there.

If they scaled up from the minimum, it would make the questionnaire and discussion much smaller and quicker for very severe and severe pwME.

 

[Trish]

Sadly too much of concern in this initiative than good. Gauging ability, illness trajectory and care input could and should be far simpler for energy strapped and cognitively challenged people. Ethics issues too -as the patient info leaflet has not been available for the first couple of questionnaires will info be disregarded as informed consent has not been given. Who are the regulatory bodies whom info will be shared with ? This project seems to have its inception pre new guidelines- it does not reference NICE guideline terms and concepts and is all but unworkable for severely affected. Where are objective measures? No concept of fatiguability and rolling PEM and its impact. Other conditions have found PROMS to be problematic ( MS to name but one) To what degree is this a coproduction - DeCode ME shows how it should be done - if it was a coproduction the questionnaires and approach would be radically different . This smacks of BACME retaining relevance and influence and justifying existence of clinics which have largely been shown to be not fit for purpose. Sadly MEA looks like being used to offer the veneer of respectability Action for ME offered PACE . Very , very sad.

Thank you for summarising our concerns so clearly. I feel like I'm going round in circles with this, and it's not good for my health.

As I said on another thread on another topic, the Cochrane Exercise review fiasco, I feel like I'm shouting into a void and not an echo of a whisper is coming back. We have been dismissed as troublemakers, not listened to as colleagues who are expert by experience. I feel sad for the pwME who have been drawn into this project with the best of motives.

I feel demoralised, helpless, fed up ...

@sarahtyson, I'm sure you're doing your best to apply your professional and personal experience to this project, and all this criticism has come as a shock to you, but you need to accept than you're getting things wrong. Why not come here and work with us to try to salvage the situation, and create something better out of your work.

 

[bobbler]

Spot on -this is an example of the “take a “normal type person” look at what they do in a week and then look at reducing it, when really it should be the other way around, what is the minimum needed to be done (sleep, eat, toilet, wash) and scale up from there.

If they scaled up from the minimum, it would make the questionnaire and discussion much smaller and quicker for very severe and severe pwME.

Indeed.

It is pretty close to the rehab after a knee op focus of moving through box-ticking can someone walk up stairs, walk down stairs, walk 200m without crutches, run

Job done. Well done rehabber. Bye bye patient, all is fixed.

And nothing to do with an energy-limiting condition where noise, light, conversations also draw on said energy-system and where people can 'do' but the cumulative makes them ill.

 

[MrMagoo]

We have a fundamental disagreement about the nature of the beast, we can’t work together. Proms is a round hole and we’re a square peg.

 

[Lou B Lou]

I think @sarahtyson has no intention of coming back here or working with us. She expressed her contempt for us and her hostility towards us and left some weeks ago. The entire Tyson/Gladwell PROMS in ME project is deeply worrying development and frankly a deeply depressing diversion from what patients want and need. Chalder Scale, too long questionnaires that still fail to address actual ME symptoms and patterns such as cumulative PEM (yep, more questionnaires), and the inexcusable failure to actually comprehend PEM, yadda yadda.

 

[bobbler]

I have just seen that the link to the facebook post from ME Association is here: (1) ME Association - Patient Reported Outcome Measures (PROMs) in... | Facebook

There is another issue here.

Because the survey is sent out by email, this post is very old and so noone will be getting comments of concern flagged unless for some reason they chose to turn notifications on for the old post from April.

Gone are the days (I remember for example when Dr Findlay was discussed) where there was that direct feedback mechanism perhaps, due to how facebook works and things have slightly changed ?

 

[bobbler]

I think @sarahtyson has no intention of coming back here or working with us. She expressed her contempt for us and her hostility towards us and left some weeks ago. The entire Tyson/Gladwell PROMS in ME project is deeply disappointing and frankly a deeply depressing diversion from what patients want and need, Chalder Scale, too long questionnaires (yep, more questionnaires), and the inexcusable failure to comprehend PEM, yadda yadda.

I think she really only had the intention of 'managing that stakeholder'. And if not, then coming up with an excuse why not including them was acceptable (hence fake outburst)

I think the thrust of what this project would be measuring was being planned out in 2013,

maybe adjusted with some other more important stakeholders recently but..

 

[bobbler]

We have a fundamental disagreement about the nature of the beast, we can’t work together. Proms is a round hole and were a square peg.

I think it is worth emphasising that it isn't special to either us or the condition

so I think we are the 'round hole' and PROMS was a very weird peg trying to pretend it wasn't false beliefs hidden in forty thousand questions on a questionnaire.

PROMS is maybe useful for very short-term one-off things that tend to be outsourced, hence the focus on delivery.

I'm not seeing other tools developed for assessing quality of knee and hip operations being used for the assessing the quality of clinical care for cancer or MS or other significant debilitating chronic illnesses - even where there are treatments.

 

[bobbler]

This initiative really concerns me as it is so basically flawed, and inputs can be too easily twisted to serve a different agenda
Being somewhat annoyed at life generally this afternoon I have posted on the ME Association Facebook page ( not a page I usually engage with).Comment below - not that it will have much effect, but my blood pressure is a bit lower.


Sadly too much of concern in this initiative than good. Gauging ability, illness trajectory and care input could and should be far simpler for energy strapped and cognitively challenged people. Ethics issues too -as the patient info leaflet has not been available for the first couple of questionnaires will info be disregarded as informed consent has not been given. Who are the regulatory bodies whom info will be shared with ? This project seems to have its inception pre new guidelines- it does not reference NICE guideline terms and concepts and is all but unworkable for severely affected. Where are objective measures? No concept of fatiguability and rolling PEM and its impact. Other conditions have found PROMS to be problematic ( MS to name but one) To what degree is this a coproduction - DeCode ME shows how it should be done - if it was a coproduction the questionnaires and approach would be radically different . This smacks of BACME retaining relevance and influence and justifying existence of clinics which have largely been shown to be not fit for purpose. Sadly MEA looks like being used to offer the veneer of respectability Action for ME offered PACE . Very , very sad.

I hope it is OK for me to put a direct link to this facebook post here: (1) ME Association - Patient Reported Outcome Measures (PROMs) in... | Facebook

In case anyone wants to like comments or add their own.

Does anyone know whether, however, it would be better to have a new post, or if enough activity happens on this will it feature in anyone's feed?

 

[bobbler]

We have a fundamental disagreement about the nature of the beast, we can’t work together. Proms is a round hole and were a square peg.

It always should have been someone like @PhysiosforME or Workwell etc who understood the condition overseeing something like this whether they did it themselves or formed a team who could.

Never made sense to give the people who didn't want to change the ultimate here is a blank piece of paper to design how your job will be assessed 'tool' under the guise of whatever this was meant to do,

turkeys don't vote for christmas even though we might be people who would see a job as the overarching goal and are happy to adapt to make that happen quite a lot see it as what they want to do etc. and the two have never matched since the old paradigm and guideline was the exact opposite of what was healthy for pwme those who were attracted to said job were often not going to be a match for doing the opposite.

 

[JellyBabyKid]

is the data for me or for the clinician? Is it to help them understand my health and needs, or to give them a false sense that they have done their job by collecting all that info, and perhaps planning a series of sessions with me, where they won't need to really listen, they can fit me into a box labelled, 5 standard group sessions of CBT, or whatever, where I get talked at, probably using a whiteboard, and the group each get a minute or two to give us an update and we get diary keeping homework, and all that palaver. Then we fill in another set of the same questionnaires and we are signed off as done with. Blah blah. No thanks.

I attended (virtually) the rehab course the LC clinic ran. It was two hours once a fortnight and we all said; why isn't it an hour a week? and they replied that it gave us chance to rest in between. When we pointed out that we wouldn't need two weeks to recover, if they cut the session in half there were a lot of blank looks and I think finally a comment along the lines of not being able to split the material up in that way...while explaining that you need to chunk tasks into small pieces, rest in between and pace them out.

standard group sessions of CBT

McRehab.

The ultimately in efficiency, as we are merely boxes to be ticked off... and yes, I do mean that in both senses.

 

[JellyBabyKid]

I feel demoralised, helpless, fed up ...

I feel absolutely bl**dy furious that in the middle of the Post Office scandal, the tainted blood scandal, the Tavistock clinic scandal, the carer scandal, where victims were blamed, dismissed and wilfully ignored we provided expert by experience input and constructive criticism based on extremely painful lived experience and offered solutions and yet, we are still having the same mistakes perpetuated against as the PACE trail over a decade ago and the MEA are sanctioning it, as it is easier to shoot the messenger than face criticism that this might not be a helpful solution for the people it is being aimed at. Lessons are very much not being learned. Wilfully so at this point.

So yes, utterly demoralised and helpless but only fed up in the way that fatigue describes my level of exhaustion - orders of magnitude off.

sending you huge hugs of support @Trish this is really tough to take and you have done your very best to constructively deal with it.

 

[bobbler]

I attended (virtually) the rehab course the LC clinic ran. It was two hours once a fortnight and we all said; why isn't it an hour a week? and they replied that it gave us chance to rest in between. When we pointed out that we wouldn't need two weeks to recover, if they cut the session in half there were a lot of blank looks and I think finally a comment along the lines of not being able to split the material up in that way...while explaining that you need to chunk tasks into small pieces, rest in between and pace them out.



McRehab.

The ultimately in efficiency, as we are merely boxes to be ticked off... and yes, I do mean that in both senses.

A cynic (and the ME Association if they were being on the ball) would be wondering whether this is going to be used to justify funding for treatments that have been banned (anything based on the rehabbers delusion that we have false beliefs - just wish they'd added the line that in the thesaurus 'avoidance' is the same thing):

- if anyone ticks 'avoid' 20 times --> CBT until you change your answers to 'yes and I love it'. Hey presto Chalder can push her video again.

- tick can't/don't 20 times --> rehab

- tick 'with adaptations' for anything --> rehab makes you do it once without an adaptation and claims they've cured you

The only way you escape the circular dystopia is by giving them the answers they want for their promotion on the payscale?

Oh, and any of us who have been to school (or watched Bad Teacher) or to a physio who is either poor or from certain companies knows there is the cliche of getting paid for the full lesson/appt whilst stuffing it with not doing any work yourself by playing a video or getting someone to fill in a sheet. And of course you don't want tests/homework with freeform answers, much better if you just tot up the tick boxes.

SO here lovely way of billing for however many 30min appts ... just make sure that you've enough questionnaires to spend the whole time marking it and totting up the scores.

Well done on them utterly avoid the condition completely.

I'm not sure the issue is just that 'it has to be one of them' in order to sell the measure MEA, I think it is that 'one of them' knows what will sell to the BACME people.

 

[Trish]

A question on duration and scope of the project and funding:

The orginal announcement of the project by the MEA, dated May 2023, says this:
https://meassociation.org.uk/2023/0...nt-toolkit-in-nhs-me-cfs-specialist-services/

The ME Association is very pleased to announce that a £90,000 research grant has been made for a 12-month study that will enable Professor Sarah Tyson (Manchester), Dr Mike Horton (Leeds), and Dr Peter Gladwell (Bristol), to apply gold-standard techniques and develop patient-reported outcome measures (PROMs) and a clinical assessment toolkit to monitor people with ME/CFS who use NHS specialist services.

That suggests the project should be completed this month, with funding presumably to cover the 12 months to now.

The latest announcement from the MEA, posted in May 2024, says this:
https://meassociation.org.uk/research-clinical-assessment-toolkit/

People with ME/CFS have been testing these new assessment tools and recruitment is continuing via the ME Association E-Newsletter. This phase of the study is scheduled to be completed by the end of 2024. Phase II will look at effective ways of gathering patient data and allowing clinicians to access it. Phase III will launch the toolkit to patients and NHS ME/CFS specialist services in 2025.

So my question is, who is funding Phases 2 and 3, taking the project into 2025 and beyond?

 

[NelliePledge]

I think it was mentioned a few months ago that the project is taking longer than anticipated.

 

[petrichor]

The questionnaire in its current state seems flawed in a few ways, but it at least seems better than other questionnaires used in ME/CFS I've seen, which have just been (in my view) blatantly ill-suited for ME/CFS. If this research project at least gets more people thinking about how to actually try to make these measures more appropriate for ME/CFS, that would be a positive