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

NelliePledge said:
Yes Adrian some of us have flagged up that use of trackers should be considered and there are symptom tracking apps like visible (which already incorporates the Norwegian FUNCAP questionnaire as a monthly review)

unfortunately these comments have fallen on deaf ears and 20th century models are presented as gold standard
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But not cherry picked and separated data - the reasons the trackers have become of worth is when eg with @MrMagoo recebt example they’ve been trained to learn peoples bodily reactions aka threshold and are describing these with ‘being in the red’

asking someone to only report the what they did that morning from that tracker I’m- which is the format of these surveys - is dissembling quite deliberately that time pattern of action consequence

just as the supposed PaeM questionnaire seems to be dissembling PEM
 
Adrian said:
I've not been following this debate but it occurs to me that developing a new PROM could be the wrong approach. A PROM is basically a questionnaire that gets people to fill in symptoms/abilities/etc retrospectively (which isn't great when there are cognitive issues). Equally ME has a huge range of symptoms many of which could be relevant in a clinical context where symptoms could be treated (or help given).

We live in a world of rapidly changing technology and could we have new approaches to patient recording rather than a occasional PROM (its all very 20th century!)

Many have smart phones (with interactive screens, accelerometers, microphones)and there is readily available cloud compute for storage and processing along with AI for interpreting what people say.

Hence I have a question: If you were able to record daily records of symptoms + some notion of underlying symptoms what would work? Some sort of diary recording (say allowing someone to say or write 'I overdid it yesterday so I'm feeling crap today' or 'feeling more dizzy when I stand up' etc or even 'excited about family visiting tomorrow'). - We have transformer networks that do transcription and classification/interpretation of text which could then feed into a patient symptom record which could be augmented with accelerometer or phone/laptop usage data,

Or would an app asking for worst symptoms of the day work.

I feel we could come up with a much better interaction model that could help capture a patients experiences in a way that could be summarized and used for clinical decision making.
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Ps the PROM also isn’t just 20th century but only used to measure ‘delivery’ and not impact or whether the treatment works in areas that were never proper clinical biomedical conditions - mental health and where a hip replacement has been outsourced and rehabbed seem to be the examples

all of this traces back to a Crawley et al (2013) paper (which include PD white) and concluded these were needed when they spotted their data in clinics taken over same time period and method as pace showed no effect on physical function (so a PROM needed to change measures as they barely eeked out some claimed impact from the CFQ)

Gladwells research on PROMS (recently only just published but begun back then and completed years ago) actually dates back to just after then
 
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bobbler said:
The issue no one talks of is coercion and all of the forms that come under this (social pressure , culture, all these links to schools, benefits, employers everything on which someone’s ability to live relies)

And these measures not striving to protect safety of those who will be handing over what will be treated as exam results as much as medical exam results. All activity logged against their name as a record inferring all sorts. If someone will lose their job if they aren’t seen to improve to start getting back to work that’s going to coerce results. Do you get forced to say you managed to increase something and it isn’t finishing you off so you don’t lose your house and that gets logged as ‘treatment worked’? Are they solving people getting pushed into increasing - whatever it does to their body- with no responsibility from the HCP if that leaves them more disabled 12months down the road?

These things shouldn’t, and wouldn’t in any normal clinical context of other illnesses, be being fed off all of the place.

along with no objective measures that show the actual health and physical function - just either short term ‘can’ or subjective self-report ‘did’ behind which many life sustaining pressures (or eg ‘we will remove your freedom’) might be levied
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If they aren't collecting clinical data, or heart rate in reaction to any of these 'days' are they really looking and interested in having their 'rehab beliefs' researched to see if it really makes anyone better health-wise or more ill? Or is this a rehab-based measure (PROMS are used by rehabbers) to be read only in the way rehabbers would read them. There is no clinician who will be looking at clues for what this means regarding the illness, or the individual and what it is doing to them.


This looks like, and is, just another change the measures to try and distort things. It's a facade of just enough pretending it is physical function whilst avoiding all possible clinical data. It's activity monitoring of those who they believe need rehabbing. The PASS isn't PEM, the symptom stuff is so lengthy they know noone can analyse all the floor and ceiling effects built in or prove the exacerbations.

What beliefs do the ME Association have that they think this will help? Can they point to the part of the illness or how more or less unwell someone has become that this is measuring or where any of said measures are in here?

All this and the BACME stuff is is a re-run of the following, but with further adapted measures to avoid their hiccup where they realised even the SF-36 showed up it didn't work: Treatment outcome in adults with CFS: a prospective study in England based on the CFS/ME National Outcomes Database, 2013, Crawley et al | Science for ME (s4me.info)
 
Adrian said:
I've not been following this debate but it occurs to me that developing a new PROM could be the wrong approach. A PROM is basically a questionnaire that gets people to fill in symptoms/abilities/etc retrospectively (which isn't great when there are cognitive issues). Equally ME has a huge range of symptoms many of which could be relevant in a clinical context where symptoms could be treated (or help given).

We live in a world of rapidly changing technology and could we have new approaches to patient recording rather than a occasional PROM (its all very 20th century!)

Many have smart phones (with interactive screens, accelerometers, microphones)and there is readily available cloud compute for storage and processing along with AI for interpreting what people say.

Hence I have a question: If you were able to record daily records of symptoms + some notion of underlying symptoms what would work? Some sort of diary recording (say allowing someone to say or write 'I overdid it yesterday so I'm feeling crap today' or 'feeling more dizzy when I stand up' etc or even 'excited about family visiting tomorrow'). - We have transformer networks that do transcription and classification/interpretation of text which could then feed into a patient symptom record which could be augmented with accelerometer or phone/laptop usage data,

Or would an app asking for worst symptoms of the day work.

I feel we could come up with a much better interaction model that could help capture a patients experiences in a way that could be summarized and used for clinical decision making.
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they've separated cause and effect (immediate and delayed). And the exact thing that is not required in ME/CFS is for someone to aggregate large groups in things like activity, adn then symptoms in order to disappear the exact patterns that have been shown by all the good scientific research that meant the guideline was changed in 2018

the issue isn't 'can you walk 200m'. it is a condition of 'thresholds' that relate to PEM, harm and illness, and deterioration from doing x either on one occasion or cumulatively.

this measure is absolutely about disappearing the important bit which is taking the individual and looking at the connections between all three of these.
 
Adrian said:
How about a summary of how someones symptoms change with activities written in a short paragraph and derived from data recorded at the time. The problem is that people forget especially with cognitive issues or represent the most severe issues rather than the complete picture. So why not have some one record their situation as they see it at the time and automate the summarization for clinical situations (in a way that a doctor could interact with). And I'm not talking about a long actometer trace. More people saying what their symptoms are as they are of concern or just after and then using AI methods to transcribe, interpret and summarize (the technologies are now there to enable that now with the latest language models). So I'm thinking we could look at how recording can be transformed over the next year or so in a way that could deal with issues with ME. I'm thinking in terms of monitoring (detecting change and treatable symptoms) rather than diagnosis.

It just feels like technology is bringing radical new possibilities and healthcare will at some point catch up.
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that's the safest and most appropriate one, and also closest to an actual 'medical' appointment. ie pointing people to how to use such tech but without the privacy issues of expecting them to download their intimate what they do every minute of the day all year round, bodily stats and all sorts - which is surely a massive GDPR issue. Plus cherrypicking of that given the horrific attitude of so many would lead to an utter off the scale risk profile

If it really were being used to 'help' people in their interactions in their appointments then a summary paragraph is what would be most useful anyway. It would also be possible to skip to the 'most important to you' issues, so that people could pick out activities like 'having a shower' or 'wanting to talk to a friend' and report on those without having other people's 'shoulds' enforced onto them as extra reporting work and distorting where their insufficient bucket of energy should be directed.

But of course the other thing is that it normally isn't a doctor. And there is nothing here even if there were a clinician and a scientist that would lead to them having clues to be able to do trials or investigate treatments that might improve someone's health?

But it will be a BACME person. Which leads me to the second issue I'm wondering what the ME Association are doing regarding safety here - because any other illness in this situation would surely be talking massive red flags.

Another major inappropriateness for people who've been harmed by the very same people I can't think of anything more abusive than expecting the same person harmed by them to hand over more data about themselves to the person who might claim they did it with 'good intentions' but hasn't actually deprogrammed or refuted those old beliefs and those are responsible for the deteriorated health ie injury that person is living with at the time. Which can then be manipulated with perceived threats if it is those people yet again being able to hold writing reports to various people over them.

And even if they are not the utter nightmare of having someone assessing in intricate detail if how you live is right according to their non-knowledge wrong-headed beliefs and disinterest in the medical aspects. Again. When it is a condition that is nothing to do with being caused by either mental health or not doing enough. As emphasised in the guideline. Normal people going to a GP find it intrusive when they get asked the odd inferential question. The abuse this involves given the 'end data' (of threshold and consequences from actions people want to be able to do health-wise) isn't being confirmed, just the 'raw data' to for this group be stuck in detail onto their file in a very distorted narrative given it will be limited context to their questions chosen. You can't then add in your boss made you do a 60hr week or noisy neighbours or all the highly relevant exertions. It's rehab-focused when it is 'activity' and not 'exertion' which can be done to/is without choice.
 
JemPD said:
I completely agree, but the challenge is that Sarah Tyson... IS a patient. And the mother of another patient. Russell Fleming is a patient. Keith Geraghty is a patient.

Clearly it takes more than simply being a patient, to understand why PROMS arent the ideal thing

Just to clarify... not intending anything personal to any of them with that comment, just wanted to illustrate that its not as simple as patients vs researchers/rehab professionals
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this
 
It would be interesting to know when this actually started .

It smacks of a process and methodology that's sat on a shelf awaiting funding.

Has it been turned down by other sources ?

Decode ME has provided a benchmark for PPI in research . Had this been collaborative it would have looked rather different.

The " testing" via the MEA - is this solely via social media, or is this being offered via the existing clinic network ? And is this part of the protocol ?
 
Jonathan Edwards said:
The monitoring should be possible, but what would you do with it?

For asthma and diabetes we have well documented treatments that provide evidence for doing this in this situation and that in that situation - more bronchodilator or more insulin maybe.

For ME/CFS we don't have that. We don't even have any data showing that pacing according to monitoring of activity is helpful. Patients develop an idea of how to pace but who knows whether some numbers on an App are more use than how you feel today?

Everyone wants to measure things and everyone wants to find reasons why this happens or that, but measuring things and providing reasons why this happens are exactly the things that are wrong with current rehabilitative treatment paradigms. Recommending measuring things when we don't know it is any use is what we are up against.

But I would agree that what are desperately needed are research studies that fin out if measuring things is useful.
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From monitoring I would see three things:
1) Are symptoms changing and hence should a patient be reassessed incase something else is happening
2) Is there a treatable symptom (or if a symptom treatment has been proposed is it helping)
3) Is a patient generally improving or getting worse in which case the support provided may need to change,

But I don't see much beyond that being achieved. Perhaps some additional recording of symptoms to help confirm diagnosis.

I could see an additional value to such recording in that it may be possible to construct a pacing advisor that would help point out activities leading to PEM (which I assume on first diagnosis could be useful)
 
bobbler said:
Ps the PROM also isn’t just 20th century but only used to measure ‘delivery’ and not impact or whether the treatment works in areas that were never proper clinical biomedical conditions - mental health and where a hip replacement has been outsourced and rehabbed seem to be the examples

all of this traces back to a Crawley et al (2013) paper (which include PD white) and concluded these were needed when they spotted their data in clinics taken over same time period and method as pace showed no effect on physical function (so a PROM needed to change measures as they barely eeked out some claimed impact from the CFQ)

Gladwells research on PROMS (recently only just published but begun back then and completed years ago) actually dates back to just after then
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PROMs are used more widely than ME. I think Sarah Tyson has worked on them in other areas.
From my perspective they are not measurement tools as they are not capable of making reliable measurements.
 
bobbler said:
But it will be a BACME person. Which leads me to the second issue I'm wondering what the ME Association are doing regarding safety here - because any other illness in this situation would surely be talking massive red flags.
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The ME association are trying to make sure that clinics follow the new NICE guidelines and don't still do GET.
bobbler said:
And even if they are not the utter nightmare of having someone assessing in intricate detail if how you live is right according to their non-knowledge wrong-headed beliefs and disinterest in the medical aspects.
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My point is that there is no one available to look at every aspect but AI systems could summarize (and that could be looked at by the patient first).
 
JemPD said:
I completely agree, but the challenge is that Sarah Tyson... IS a patient. And the mother of another patient. Russell Fleming is a patient. Keith Geraghty is a patient.

Clearly it takes more than simply being a patient, to understand why PROMS arent the ideal thing

Just to clarify... not intending anything personal to any of them with that comment, just wanted to illustrate that its not as simple as patients vs researchers/rehab professionals
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If I were working in this area the first thing I would do is set out what the PROM is trying to achieve and hence define the properties that it needs to have. For example, if change across a population is being measured then some sort of linearity is necessary. If it is a clinical tool then it needs to give information that is useful to a clinician in a way that is easier to get or more reliable than just talking to a patient.

Once such properties are defined a test plan can be put in place to try to demonstrate that properties are met including what ever necessary experiments (that may for example be comparing clinician performance with or without the tool).
 
Amw66 said:
It would be interesting to know when this actually started .

It smacks of a process and methodology that's sat on a shelf awaiting funding.

Has it been turned down by other sources ?

Decode ME has provided a benchmark for PPI in research . Had this been collaborative it would have looked rather different.

The " testing" via the MEA - is this solely via social media, or is this being offered via the existing clinic network ? And is this part of the protocol ?
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Yes what PPI was there at the initial stage of scoping out the project, the assumption appears to have been for a bunch of questionnaires from the start rather than designing a product suited to PWME
 
NelliePledge said:
Yes what PPI was there at the initial stage of scoping out the project, the assumption appears to have been for a bunch of questionnaires from the start rather than designing a product suited to PWME
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Exactly this.
Chris Ponting' has often said that the input of pwME in Decode ME from the start proved key to how questions were framed and how things were delivered.
This looks like lip service
 
Amw66 said:
Exactly this.
Chris Ponting' has often said that the input of pwME in Decode ME from the start proved key to how questions were framed and how things were delivered.
This looks like lip service
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It is. They decided what they wanted to do, then asked some pwME for feedback. They also engaged here and chose to disregard all feedback.
That’s not PPI that’s doing a focus group.
 
Yep. When researchers etc say they have engaged input from/consulted with, People with ME - my heart sinks. It seems to be so easy to elicit collaboration from patients who - from where we/long term informed astute patients are - appear to be simply compliant.
 
MrMagoo said:
It is. They decided what they wanted to do, then asked some pwME for feedback. They also engaged here and chose to disregard all feedback.
That’s not PPI that’s doing a focus group.
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It isn't even doing a focus group.

It is pretending to have patient input. Then coming up with a pretence that apparently only those who agreed and nodded were worthy of being counted as 'constructive'

Weirdest process I've ever seen. And I've run focus groups and surveys and the like. I'm imagining trying to use the same slander to claim why I cut out any comments for anything I've done, and it just isn't something you'd ever think of doing in the first place.

Such a weird old attitude to claim such a thing as 'constructive' - that's BS. Who on earth is falling for that wheedling?

If you have defined remits at a certain point where input needs to be directed then you note it on your research plan, or take on board all input: that she wasn't prepared to be upfront and write down how limited a context she was intending on allowing feedback, and that she planned on sifting it for whether it 'agreed' with her (not the same as constructive) makes it .. well there are all sorts of official and strong terms for that in governance and research terms.

In a focus group then you have defined topics and sub-topics, if someone begins talking about Neighbours and Home and Away or mentions something you would have thought of but can't then you still code it. Unless it is entirely informal and then the extent of those normally means the person doing is the person in the group anyway or will get to hear the whole thing (if appropriate). And when you nudge back onto topic noone is surprised because it has been upfront to begin with.

ME Association missed a key stage of the briefing and sign off in not either requiring her to sign off precisely what extent of feedback would be, or are being conned if it has been left open and it isn't even being retrospectively defined. You have to be up front if you ignore x number of comments and feedback from a population you claim it represents. You can't just waive your hand and say ...'pah, don't worry about it they just weren't constructive'. Imagine.

She needs to take responsibility if she engaged in something, whilst not wanting to be upfront about the limitations on what she was actually allowing input for. There is no justification in any research for only taking 'favourable' which unfortunately 'constructive' sounds like a worrying pseudonym for and makes her look not professional. It was very weird of her to resort to insults to distract everyone because there was little need for her to comment at all, so she chose to cause said distraction in order to stop feedback.

From the moment she did that here, and I hear elsewhere then her intimidation and silencing behaviour corrupted any claims of people being able to give feedback or her getting any input.
 
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