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

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

 

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

 

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)

 

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.

 

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.

 

this

 

This is a really good point.

None of this should be in any way antagonistic, it should be completely collaborative.

 

But it's not and never will be collaborative. Sarah Tyson and Russell Fleming don't do collaboration. They presume to speak for us, or do the pseudo collaboration of Tyson's questionnaires. Keith Geraghty is an independent academic.

 

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 ?

 

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

 

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.

 

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.