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

Fainbrog said:
I read that right, 97 questions?!

How is that realistic for anyone to complete, even with the acknowledgment of being able to come back to it numerous times?

I forget what I did 30 seconds ago, let alone how I answered some questions days ago, so, I’d imagine I’d have to revisit what I’d said before and by which time, I’d be broken again and would have to stop.

Kinda glad I have no plans to complete it.
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Also when does someone consent - if it is saving as it goes then someone perhaps can’t even withdraw if they start finding the questions more and more worrying ?

and yes this is the clsssic paternalist fir severe thing of someone saying ‘it’s ok cos they can do it in bits’

well NO

they can’t do that and give informed consent tgat they haven’t been tricked

in fact that’s almost one of the symptoms of severe ME and what makes them vulnerable

I have major issues with this ‘taking advantage of vulnerabilities and not possibly enabling anyone severe to complete in the time frame feeling well and like they are confident the question wirding hasn’t persuaded them/led them whilst tired’

and that informed consent is even possible for what they’ve listed from someone severe

ergo it can’t include being in any way representing severe
 
Trish said:
I decided to tick the boxes so I could see the survey, and completed it.

As with the last survey, I have significant criticisms.

I wrote my immediate reactions in the box at the end, but will go back over it and consider whether to make a more detailed comment. Not that they will take any notice, if past experience is anything to go by. I've kept a copy of the questions for my own use to help me think about what I want to say.

I'll say no more for now, apart from it being far too long.
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I don’t understand how their list can be legal or upheld

given point one can easily be contradicted by them not answering your questions satisfactorily at all

but by that point they say they’ve got your data snd you’ve got to consent to all of that in order to even see the survey or ask a question

so only people who waive their basic rights can participate?
 
MrMagoo said:
Bringing over from a thread about BACME
Tyson and Gladwell due to speak at conference about their PROMS on 16 May
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Trish said:
Which patients are not allowed to attend. I asked. See the BACME thread.
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I think it would be reasonable to expect the MEA and investigators involved to make their BACME presentations publicly available. Maybe that is something worth asking the MEA to do?
 
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The wording in full - also “where it is relevant tome taking part” it’s really odd wording.

I tried to open the patient info sheet but I don’t have a MicrosoftOffice subscription at present. I would have thought a pdf would have been easier all round?
 
MrMagoo said:
I tried to open the patient info sheet but I don’t have a MicrosoftOffice subscription at present. I would have thought a pdf would have been easier all round?
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Trish said:
If you would like more information about the toolkit project please read our patient information sheet here.
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I tried clicking on the link just now and got the message that the link had expired.
I confess I didn't bother to try the link before I did the questionnaire. I assumed I'd already seen it for previous questionnaires.
 
A quick note in case Sarah Tyson is reading this:
I assume this is an error:

79. Take part in gentle recreational exercise e.g. walking, yoga, dancing, golf, cycling, swimming

81. Take part in more demanding recreational exercise e.g. dancing, golf, cycling, swimming
 
MrMagoo said:
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The wording in full - also “where it is relevant tome taking part” it’s really odd wording.

I tried to open the patient info sheet but I don’t have a MicrosoftOffice subscription at present. I would have thought a pdf would have been easier all round?
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It appears to need a Microsoft Business account (at least that’s what it asks me for when I try the link, so, will be inaccessible to the vast majority of those who will try to access it..
 
Fainbrog said:
It appears to need a Microsoft Business account (at least that’s what it asks me for when I try the link, so, will be inaccessible to the vast majority of those who will try to access it..
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According to the error message I received, even if you have a Microsoft 365 account (I do), it needs the email address linked to the account to exist within the University of Manchester's domain.

Unsurprisingly, since I've never had a link with any university, mine doesn't.
 
MrMagoo said:
Do they mean the University’s “regulatory authorities” or what? Who are these regulatory authorities? Info Commissioners Office?
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just thought on this one again.

no it isn’t university anything

they seem to be using the data in some sort of psychometric way so not necessarily looking at individuals patterns might be lowest common denominator which would be an issue. I guess that’s why they don’t want to allow the odd line to be remove lest it throw off their processed calculations which might be influenced by different levels and types?

Is this ‘sign away your rights to have the right for your individual level to be counted’ new for this one?

if so is that because of the fake outburst she caused

or is it because it is peoples activity data [that she wants all these new levels of removed rights in ticking ‘consebt’]
And NB it makes me think even more that outburst was contrived because it was the latter

which has the most privacy and could be used and twisted in the wrong hands of the three - particularly why the heck is this data collected separately to PEM and symptoms when what you can do is limited by PEM or causes symptoms so is absolutely meaningless unlinked

someone should be writing a big old question in the MEA stuff asking why they think it’s a good idea to let people fill in such a long questionnaire even the mildest can’t keep track of the wording

that is asking them to list what they can do and activities … and is removing normal ethical requirements from the researcher side in order for someone to be able to consent

normally you can have your data removed at any time

AND is citing some anonymous and ambiguous’regulator’ they require people to let their data be given to

Doesn’t sound that far off the DWP pace trial trickery/ conflict.

what on Earth are MEA doing here?

if they do one thing it must be to protect the basic rights of vulnerable people with ME and this is the dodgiest thing I’ve seen that I’m. It sure you can or should able to sign away consent to
 
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bobbler said:
just thought on this one again.

no it isn’t university anything

they seem to be using the data in some sort of psychometric way so not necessarily looking at individuals patterns might be lowest common denominator which would be an issue. I guess that’s why they don’t want to allow the odd line to be remove lest it throw off their processed calculations which might be influenced by different levels and types?

Is this ‘sign away your rights to have the right for your individual level to be counted’ new for this one?

if so is that because of the fake outburst she caused

or is it because it is peoples activity data

which has the most privacy and could be used and twisted in the wrong hands of the three - particularly why the heck is this data collected separately to PEM and symptoms when what you can do is limited by PEM or causes symptoms so is absolutely meaningless unlinked

someone should be writing a big old question in the MEA stuff asking why they think it’s a good idea to let people fill in such a long questionnaire even the mildest can’t keep track of the wording

that is asking them to list what they can do and activities … and is removing normal ethical requirements from the researcher side in order for someone to be able to consent

normally you can have your data removed at any time

AND is citing some anonymous and ambiguous’regulator’ they require people to let their data be given to

Doesn’t sound that far off the DWP pace trial trickery/ conflict.

what on Earth are MEA doing here?

if they do one thing it must be to protect the basic rights of vulnerable people with ME and this is the dodgiest thing I’ve seen that I’m. It sure you can or should able to sign away consent to
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There is nothing at all to do with a university that would require this.

I can’t imagine her physiotherapists regulator asking to look at it either

GDPR and anything else would be requiring it was stored safely

anything checking fir fraud would be making sure it came from a real source and wouldn’t surely be any different from many other pieces of research and their regs to keep said data in case it needs to be checked fir authenticity … but they’d expect slso people who removed their consent to be removed


So a regulator of what?
 
Come to think of it.. can anyone confirm how she has ensured that those filling in the survey actually have the diagnosis they claim ie it couldn’t just be accessed by entry it’s making up stuff to skew the data by saying they have ME then ticking they did x y or z?
 
bobbler said:
Come to think of it.. can anyone confirm how she has ensured that those filling in the survey actually have the diagnosis they claim ie it couldn’t just be accessed by entry it’s making up stuff to skew the data by saying they have ME then ticking they did x y or z?
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I don't think that's a serious problem. It might be for some social media surveys perhaps, but I can't imagine the thousand or so participants they have had for previous questionnaires including more than one or two rogue participants.
 
Trish said:
I don't think that's a serious problem. It might be for some social media surveys perhaps, but I can't imagine the thousand or so participants they have had for previous questionnaires including more than one or two rogue participants.
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Thanks for confirming, so it is mainly via the email from the ME Association?

I don't fully understand the list that has been added regarding consent vs this on the recruitment side of things.

I also don't know how they think they have something representative to use, and how they can claim that using the length of survey as a barrier and informed consent / vulnerability and coercion issue (beyond the ability of those filling it in to see through not being coerced or led or tricked) isn't an issue

Am I right in thinking that this is being used to apparently 'black box' I'm guessing which of the questions on said list are 'predictive' (I'm imagining it being like prospecting based on profiles but I might be incorrect, because we've been told little about the techniques they plan on using even when asked directly)... except we can't see the workings behind this and tiny differences in weightings and accuracies could lead to quite different decisions there?

Surely they can't expect someone to fill in even a quarter of this in a clinic,

given there are 3 surveys I don't think anyone severe should be expected to EVER do more than 20 questions in total across all 3.

Otherwise according to psychological science they are using the surveys to produce a change in the answers people give and sometimes their actual mood etc by sheer weight of repetition and questioning, it is known to be really bad and is actually used as a brainwashing technique.

Most healthy people won't put up with much more than that even when they are very relevant and on something they are interested in and know will be heard and produce change.

SO what is going on with all of this? 98 questions? it can't be anything more than a filter for those who are more severe?
 
Fainbrog said:
You would hope it was an error, but..
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doubt it.. that's what psychometric does. Cross-compares consistency of answers

PLus I guess some of these activities (the ones doubled up) can be done at different levels of demandingness. like crazy golf or having a putting machine in your living room vs 18holes carrying a bag around manually.

WHich is sort of why it is crazy to use them unless you wanted to introduce ambiguity to such an extent.

And it shows how little they know about ME/CFS if they listed swimming under anything other than highly strenuous. It is full-body and of course requires changing and showering etc.

other than 'a dip in the pool when already lying on sunlounger dressed in swimwear' limited to holiday situations (which those more ill couldn't do) there is no 'walked 200m to the shop' version of it.
 
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