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

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.

 

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?

 

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.

 

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.

 

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.

 

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.

 

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.

 

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 ?

 

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..

 

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.

 

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?

 

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.

 

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.

 

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.

 

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.

 

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