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

I can’t see an NHS service with the capacity to even sit and go through the answers to be honest. Nobody in the NHS ME/CFS or LC spends this amount of time per patient. And if they did, I’d like them to spend that time in another way. I can’t believe I’m no longer upset on behalf of pwME, this has “jumped the shark” into farce and I don’t want a HCP having to deal with it, either!

I’ve been in the system recently and most of it’s done as online groups, which will cover most everything (whether you “need” it or not) quick and dirty, cheap as chips.

 

Yep it’s called being honest and getting consent without wearing them down with unnecessary questions then hiding the relevance with ambiguity

 

I really hope if it goes ahead, for the question “do you want to be able to ask questions…” everyone ticks “no” because it’s daft.
I don’t care how many times Sarah Tyson talks about “gold standard” and “good quality” this is nonsense.

 

This is essentially what the Montgomery v. Lanarkshire case on the question of informed consent decided. It is the second time on this thread where I've had occasion to reference it, the last was 6 months ago with the last survey. This time I've found a 10 min overview presented by a Doctor on the case for ease of reference. What the Doctor in this lecture doesn't mention is that the Supreme Court brought the case law into line with the 1999 GMC guidance at the time of Nadine Montgomery's first claim before the Scottish Court. In other words, this is not new law. The Supreme Court clarified the law.

For those up to a bit of reading here a the legal assessment of it from Browne Jacobson with a brief discussion regarding on-line consent.

Decision making | Consent for treatment | GMC guidelines | Browne Jacobson


ETA Would help if I actually added the video Medical Law - Informed Consent - Montgomery v Lanarkshire Health Board - YouTube

 

Perhaps worth posting on MEAs social media

 

Just a performative tick box exercise. that looks good to bean counters but is of no real help to patients.

 

I doubt that any accountant worth their salt would find performative box-ticking valuable exercise. They know better, because they count things, and here it's basically no pluses and lots of minuses. A competent accountant would definitely not find this valuable. Well, all they'd do is report that it's not. If someone wants to go ahead anyway that's their problem.

Executives and politicians are about the only other group of people who would find this valuable. In addition to, clearly, MDs, therapists, clinicians and health care administrators. Clearly in a category of their own.

 

Don’t you mean no pulses?

 

Grumpy woman syndrome this morning exorsized by posting on MEAs Facebook page .

"How will this be used. Protocol for analysis / stats available ?
Rather than a root branch change to provide consultant led services, this facilitates more of the same which have clearly been shown to be not fit for purpose for the majority . Until clinician's have a firm grasp of the illness via education nothing will change and BACME simply don't have a clue and are struggling for relevance .

Little understanding of anything other than mild .
No differentiation between fatigability and PEM, or the cost of filling in questionnaires like this.

It would have been illuminating to have questions linked to severity on
How long did it take you to complete
How many breaks did you require
What did you sacrifice to engage with this
Was PEM invoked
Then there might be inclusive, accessible, meaningful dialogue .

So far removed from reality it's very sad.
FUNCAP exists , no need to reinvent a wheel which has inherent flaws .

The plot has been lost ".

Not that it will make much difference , but it needed said .
Does anyone know what 25% group male of this ?

 

Response received from Sarah Tyson .

How will this be used. Protocol for analysis / stats available ?
No the stats plans has not been publicised; this isn’t a trial. But we are using response rates, floor and ceiling effects, Cronbach’s alpha and inter-item correlation to assess construct validity including uni-dimensionality and redundancy; thematic content analysis for content validity; Spearmann rank corelations for criterion-related validity; analysis of variance for discriminant validity. We have not assessed ret-test reliability here as the CAN-Meis not intended to be used repeatedly. In the other assessments were we have assessed this, we have used independent t-tests and analysis of variance; the mean and standard deviations of the differences to calculate the minimum detectable difference; and analysis of variance to assess sensitivity to change.
None of the assessments in the toolkit are related to the professional background of the person who is receiving them. They would be used by a consultant/doctor as much as any other professional.
If you have a look at my replies to other comments, you will see that we have taken great care to make the the toolkit relevant and accessible to people who are more severely affected. This is reflected in the high proportion of participants who are more severely affected.
This assessment does not refer to PEM, there is a separate assessment for that. The paper regarding the development of the assessment will submitted for publication shortly.
In the analysis, we will be looking how people’s needs differ at different levels of severity.

 

Ok well we can all use technical jargon to describe something that isn’t very good.

Anybody able to translate?

she didn’t answer all of the questions did she?

 

I've posted the following

Sarah Tyson Sarah these are standard tests . The questionnaires have been worded to gain specific data. There should be a published stats plan for analysis as there will be defined outputs and types of outputs. If there is no plan / protocol we are back to ad hoc analysis making data fit which is the reason the whole shebang is a mess .

Re accessibility for severely affected - a large part of this simply isn't and for those who chose to engage , the effects of such lengthy questionnaires on health can be significant. Would you risk deterioration for this ?
By trying to adopt an approach which seeks to have the same questionnaires for all severities risks producing something that fails to deliver firvany severity .
The MS PROM is a mess . There's much to learn from it.

 

Sarah, if you’re still visiting the forum and reading this: you’re still talking down to people and it is rude. You could answer the question without pointing out that you have answered the question elsewhere (in other comments which the asker has not read) and without assuming a lack of knowledge (about the application of statistical tests) as demonstrated by your attempt to haze with a list of tests, presented without context that would make the list meaningful.

 

I don’t think it’s actually worth asking Sarah Tyson anything, partly because of the way she answers (long, but incomplete) and partly because of her brusque style. Perhaps the same questions could be put to Peter Gladwell, or the ME Association?

 

I’d like to just highlight the massive own goal of “the assessment does not refer to PEM, there’s a different assessment for that” PEM being one highly specific feature of ME/CFS but also one which can be disregarded when assessing how ME affects you? Is this real? I have no words.

 

I'm confused on what they are claiming to achieve. And also get a sense there slyly might be under it an attempt to re-jig the definition of what ME/CFS is according to CDC and new Nice guidelines ie what we should be moving towards

Really what this needed if done properly first and foremost was for those who were 'qualified' ie definitely had PEM, definitely had x, y, z severity of ME/CFS to be working to get the description of the main symptoms and how they operate/would feel or seem to newer individuals only filling in and working on these things. Then maybe building from there.

I don't get what this is at all at a stage where we don't really know who has filled it in other than the fact that they have had to consent to such a huge amount of data intrusion and also that they have to have been able to complete all of these ridiculously long questionnaires - hence it has been operated as a filter.


This is hardly moving towards a tighter more useful definition and accurate description and measure of the condition. It feels a nonsense that will merely (much like what's been done in the past) be used to muddy the waters. Which is the most transparently counter-productive thing that someone could be doing at this stage. And I suspect an external validity issue for it all.

And as usual they've made it so extreme with added survey after survey, with each having more extreme consent and more abstruse questions that the critique would be so extensive for each they've worked out it's like when noone will read the email trail of evidence because there is too much ie make something so ridiculous no bystander or even interested party can even get to the end.

There really should be laws about this. But hey it seems from talk about legal aid etc and wait times for anything and how much energy is required in anything people have worked out if you can't access enforcing logic or decency then they don't exist. That will be where we are at if this goes into operation getting it picked back out.

But .. right at this moment that isn't the position.... this is a charity - that has paid for it (so can do something before then), that doesn't seem to be concerned that this has been taken into territory where the wool must be being pulled over their eyes because there is no way even if they were all up with the intricacies of methodology and had time that that small number of staff could get anything from this to be confident given how black-boxed it has been made. And at that point it isn't for the 'author' to prove trust they should realise but it is absolutely their responsibility to only release it and keep their name on it if they can guarantee safety etc. And noone can.

They don't seem to realise that as the people who provided the 'access' ie how would this have been claimed legitimate and how many would have filled this out if it wasn't for MEA being the ones distributing it? SO it is actually 'on them' if this has any consequences, not 'on Sarah and Pete'.