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

[sarahtyson]

I hope they don't confine their patient consulatation to patients currently attending clinics, as they tend to be newer patients who may not be wised up on long term effects and too ready to accept what they are told.

The main data collection will be open to people with ME, whether they are, or have been patients of ME services, or not. It is important to understand that the purpose of this study is not to assess the effectiveness of, or satisfaction with ME services (or otherwise) but to develop the means of doing so. The next stage is to use the measurement tools to detail pwME's difficulties and needs, evaluate (and support development of) services

 

[sarahtyson]

If there really could be a good way of clinics assessing symptoms, severity levels and capacity to function physically and cognitively that could be very useful, both at initial diagnosis and over time in regular reviews. Whether that can be done by questionnnaire alone, I doubt, but there's at least got to be something better than the usual Chalder questionnaire.

I'd like such assessment to include patients being lent wearable monitors to assess activity, sleep, heart rates etc for a couple of weeks say once a year, and doing Nasa lean tests or tilt table tests and other assessments for orthostatic and other problems. I'm doubtful about doing 2 day CPET's for everyone as it tends to trigger sometimes prolonged PEM, and would be out of the question for severe patients. But there may be other gentler testing possible.

Yep, that's the idea. I appreciate you are sceptical, but assuming your experience is limited to ME, then you won't have experience of well-developed, psychometrically robust measurement tools so it perhaps not surprising. My experience of doing so in other conditions is that its possible and helpful. Using 'wearables' and activity monitors seems so obvious, doesn't it? Except when one looks at the detail - they aren't terribly accurate or reliable; it is far from clear which parameter should be measured for whom, when, or how or how the data should be interpreted. Also it is overly simplistic to assume the relationships between pathology; impairment and activity are linear (although I can fully see the attraction of the idea) - in ME or any other complex, multi-faceted disabling condition. So even when we do find a biomarker or physiological marker, and monitor how they change, that will not directly relate to changes in what one is able to do or how one feels. Sorry.

 

[Trish]

Hi, Yes I also have ME (thats why I retired early for te University of Manchester) and have been carer of sone with ME for many tears

Hi Sarah, thanks so much for joining us and responding helpfully to our concerns and comments. I also am both a pwME and a carer for my daughter with ME for many years, so lots of fellow feeling here. I'm pleased this project has involvement of pwME on the team.

I'm not sure about Gladwell. I get the impression from his influences on AfME documents and stuff we've heard about the Bristol clinic that he doesn't really get ME, and tends to recommend pacing up.

No he doesn't. I don't know where you got this impression from. He fully understands and implements pacing and

To explain my concerns, I understand he wrote the 2020 AfME guide to pacing,
https://www.actionforme.org.uk/uploads/pdfs/Pacing-for-people-with-me-booklet-Feb-2020.pdf
which we discussed in detail on this thread:
https://www.s4me.info/threads/pacin...oklet-revised-and-updated-january-2020.13320/
As you can see our members had significant concerns about it. My comment about it is here:
https://www.s4me.info/threads/pacin...d-and-updated-january-2020.13320/#post-232201

I also understand the clinic he works in did the less than scientific SEE ME project that the original AfME Toolkit for Professionals was based on. We were so concerned about it that I wrote an open letter explaining my concerns and the Toolkit was supsequently withdrawn.
See this thread:
https://www.s4me.info/threads/open-...-me-about-the-toolkit-for-professionals.7629/

As for working with BACME, I think you will understand that historically BACME have been on the wrong side on ME treatments, supporting the CBT/GET approach of the old NICE guideline and before that.
Some of their more recent material is an improvement, but there are still some problems. I'm sorry I'm too exhausted to find them now.

I reviewed a book recently by Dr Gerald Coakley and Beverly Knops called 'Living with ME and Chronic Fatigue Syndrome' published in 2022, so it was published after the 2021 NICE guideline. I mention this because it says Beverly is a trustee of BACME and actively contributes to training. She also worked in the Bristol Clinic with Gladwell.
Yet I found the book scarily bad.
Here's our thread on it
https://www.s4me.info/threads/livin...-sept-2022-bps-views.29552/page-3#post-438770
Here's my review on Amazon.
https://www.amazon.co.uk/gp/custome...ef=cm_cr_dp_d_rvw_ttl?ie=UTF8&ASIN=0241557216
__________________

Sorry to load you with all that lot, but you did ask - I leave it to you to decide whether to follow the links. I don't criticise people lightly.

Having thrown all that lot at you on your first day here, I do want to reiterate that I'm very pleased you are working on this project and trust that you, with your experience as a carer and pwME, will be able to set others straight when they get things wrong about ME.

I hope you'll stick with us and discuss progress on the research where possible. I do think it's very important that there are better PROMS for ME.

 

[sarahtyson]

If you mean Isle of Man, I think they are mentioned in the context of having a combined ME/CFS and LC service, unlike in some other places where services, if they exist, are separate.

What have the Isle of Man got to do with it? Well ..... Juan Corlett is the Chair of the Isle of Man ME Support. Over many years, IoM ME Support have been working with Manx Care (the IoM health service) to develop a ME service for the IoM. Pragmatically, long-covid has recently been added in to the mix becuase, you know the pandemic. They have developed constructive, collaborative working relationships with all parties, drawn on best practice, and applied the NICE Guidelines to produce an exemplar service. I know Juan through a family friend who is a relative of Juan's. Conversations between us, and then members of Manx Care were the catalyst for this project. Juan is a co-applicant because of his personal experience of ME, exceptional leadership and managerial skills, and experience and know-how of working with multiple agencies to develop services.

 

[Trish]

Yep, that's the idea. I appreciate you are sceptical, but assuming your experience is limited to ME, then you won't have experience of well-developed, psychometrically robust measurement tools so it perhaps not surprising. My experience of doing so in other conditions is that its possible and helpful. Using 'wearables' and activity monitors seems so obvious, doesn't it? Except when one looks at the detail - they aren't terribly accurate or reliable; it is far from clear which parameter should be measured for whom, when, or how or how the data should be interpreted. Also it is overly simplistic to assume the relationships between pathology; impairment and activity are linear (although I can fully see the attraction of the idea) - in ME or any other complex, multi-faceted disabling condition. So even when we do find a biomarker or physiological marker, and monitor how they change, that will not directly relate to changes in what one is able to do or how one feels. Sorry.

I accept that wearables aren't the complete answer to monitoring, but I do think they could contribute significantly useful information. For example an activity monitor that measures accurately time spent upright/feet on the floor, and movement can give a very good measure of the amount of actual physical activity a person can do each day. Of course that's not the whole picture, but for me it gives far more useful information on my severity level and restrictions to my daily life than, say filling in a list of things I can and can't do.

It deals with the problem of saying, I can climb stairs, but only if I don't also have a shower that day or cook a meal. It helps with monitoring the cumulative effect of the whole day's activity. I agree things like a Fitbit aren't entirely reliable, but using one has made an enormous difference to my frequency of crashes once I realised the level of daily steps I need to stay within. And for scientific purposes of monitoring patients, there are much better wearables being produced now.

I think any assessment of how much physical activity a person can do must include measurement of actual movement, not just questionnnares. Sure it's may not be a linear measure of illness severity, but neither is any questionnaire. Why not develop a measure that combines both? And also some form of cognitive fatiguability and capacity testing.

 

[bobbler]

Prof Sarah Tyson works in rehabilitation, has done some work with Physios4ME, and recently wrote a letter with David Tuller in response to Saunders et al (2023): “A new paradigm is needed to explain Long COVID.”

Dr Mike Horton works in psychometrics and scale development/validation.

Dr Peter Gladwell is a physiotherapist working in the pain / ME/CFS service in the North Bristol NHS Trust. He's also active in BACME.


Hi, Yes I also have ME (thats why I retired early for te University of Manchester) and have been carer of sone with ME for many tears

I've had a quick look at Dr Mike Horton and notice this one as a recent paper he was contributor on.

Does this give a sense of what he/you as a group might be looking at doing here with ME/CFS re: the psychometric type scales?

https://www.s4me.info/threads/the-m...d-or-post-covid-19-syndrome-2022-sivan.27803/

 

[sarahtyson]

They’d read that and just assume you have a gilt complex.

No, the gold standard "trope" does not mean EBM. The gold standard to which I refer is the US FDA recommendations for the development of PROMS. These have been accepted and widely used for years. You see, there is a wider research world than just the PACE trial and ME. I realise you, and other posters may not be familiar with the methods I am proposing to use, but that does not mean they are without merit or worthy of derision.
I'm afraid I don't understand the rest of the post "Which, yeah, basically means "plastic-painted gold tchotchke" than actual gold-plated. So much marketing and hype in this profession. They take the absolute least reliable, most biased and ineffective, methodology known and call it "gold plated" as if it means anything. It's made to look expensive, and it is, but it is strictly ornamental."
Perhaps you could explain what your objection is, and why you feel my work is "plastic-painted gold tchotchke ... So much marketing and hype in this profession.... and the absolute least reliable, most biased and ineffective, methodology known". Ive been called many things in my life, but a "fake gold academic" and '"purely ornamental" are novelties, could you justify them please?

 

[sarahtyson]

I accept that wearables aren't the complete answer to monitoring, but I do think they could contribute significantly useful information. For example an activity monitor that measures accurately time spent upright/feet on the floor, and movement can give a very good measure of the amount of actual physical activity a person can do each day. Of course that's not the whole picture, but for me it gives far more useful information on my severity level and restrictions to my daily life than, say filling in a list of things I can and can't do.

It deals with the problem of saying, I can climb stairs, but only if I don't also have a shower that day or cook a meal. It helps with monitoring the cumulative effect of the whole day's activity. I agree things like a Fitbit aren't entirely reliable, but using one has made an enormous difference to my frequency of crashes once I realised the level of daily steps I need to stay within. And for scientific purposes of monitoring patients, there are much better wearables being produced now.

I think any assessment of how much physical activity a person can do must include measurement of actual movement, not just questionnnares. Sure it's may not be a linear measure of illness severity, but neither is any questionnaire. Why not develop a measure that combines both? And also some form of cognitive fatiguability and capacity testing.

I fully accept the logic of your views, I have spent a good deal of my previous life working through the detail of such thoughts/hopes/expectations. It would be great if they could be fulfilled, but the reality is that, at present there are no reliable, accurate devices that provide the right type of data, that can be easily and quickly downloaded, and interpreted to inform clinical decision-making. Believe me - I have looked, a lot for a long time. Maybe there will be one day, but in the meantime .....

 

[MSEsperanza]

Hi @sarahtyson & welcome to the forum.

Great to have you -- as an expert who's also a person with ME/CFS and a carer -- on the forum engaging with this important discussion.

Not able to add much now but you might be interested in previous discussions on the forum -- we have several threads on related topics.

Don't want to post too many links now but the most relevant I think are these:

https://www.s4me.info/threads/bias-due-to-a-lack-of-blinding-a-discussion.11429/

https://www.s4me.info/threads/which-outcome-measures-are-most-important-for-clinical-trials.29829/ (members only)

More discussions related to the issue can be found using the tag search, e.g.:


https://www.s4me.info/tags/outcome-measures/

https://www.s4me.info/tags/subjective-outcomes/

Edit: These are mostly related to clinical trials but I think similar bias and thus observable discrepancies between objective and subjective measurements will also apply for the purpose discussed here? And can't simply be explained with objective measures being not reliable?

 

[sarahtyson]

I've had a quick look at Dr Mike Horton and notice this one as a recent paper he was contributor on.

Does this give a sense of what he/you as a group might be looking at doing here with ME/CFS re: the psychometric type scales?

https://www.s4me.info/threads/the-m...d-or-post-covid-19-syndrome-2022-sivan.27803/

Mike leads the Leeds Psychometric Lab. He is the world's 'go to' expert on Rasch analysis. This is the statistical approach we will use to assess the psychometrics of the measurement tools. He and I have worked together for years to develop several clinical measurement tools. He is a top bloke. He has no involvement in the ME world. His role is to do the stats, he is blissfully independent of the whole ME baggage thing and long may he remain so. He collaborated with Manoj Svan et al, playing a similar role in the development of the Covid-19 Rehab tool.

 

[bobbler]

There have been lots of instances where institutions that don't understand ME/CFS and related diseases put up their own "pet" patients, who they know will not be challenging. People are just being cautious, on the basis of past experience. BACME has certainly been problematic in the past.

Agreed. I think that airing valid concerns on the basis of what has tended to happen historically isn't something that should raise an eyebrow when past history has shown the norm means these things are likely and need to be therefore raised and noted to at least note foreseeability issues. I this instance the PPI group was BACME is post-2021 guideline in timing so obviously pertinent as a potential likelihood.

I don't think an organisation that has been 'problematic in the past' are appropriate if they are demanding trust or being aghast at questions based on making sure it is different from the past and thinking it is strange rather than sensible - whatever the cohort was be it pwme or a completely different sector and group of people.

I would expect/hope anyone getting into this area could be understanding this reassurance isn't a strange 'special request' but seems something that does need to be checked 'isn't the same as it has been previously'. Sorry [to future researchers] needs to come from the predecessors and past behaviour/research really rather than it being something for pwme to be apologising for being put in the position where they have to, and should, ask.

And I do think that any group for anything in any sector asking questions checking that if patient involvement is going to be claimed what it actually consists of and is it representative etc wouldn't be unusual, but when so many landmines/hitches/cracks have been unveiled over the years in some ways this has been done in the past it would indeed be sensible to make it an open topic of conversation?

It is sort of one of 'the big things' about where ME/CFS research needs to be heading in including really representative patient input actually driving/leading (rather than feeding back with at best ability to make tweaks after something decided) and looking at how those more severe can actually be properly represented given the spectrum is key in understanding the condition, and making sure that even research nevermind services/treatment are accessible and appropriate. So I would expect it not to raise eyebrows anyway given where you'd hope cutting edge research would set it sights re: this sort of aspect being updated vs the old (or even other conditions).

Paternalism has been a big issue historically for ME/CFS, and still is, even 'within the community' sometimes, and I can't think of another way of this being kept under control without a good way of ensuring patient representation is broad and properly representative and weighted.

I do feel reassured at the comment noting that it won't just be looking at people signed up to clinics, and specifically that being because it needs those pwme who have longer experience of the condition - given we've all probably done the 'thinking we've cracked it' at various points only to find out there is more to the rollercoaster etc.

 

[sarahtyson]

There have been lots of instances where institutions that don't understand ME/CFS and related diseases put up their own "pet" patients, who they know will not be challenging. People are just being cautious, on the basis of past experience. BACME has certainly been problematic in the past.

Im not sure who are institutions to which you refer but, I read this post out to my family. The thought of me being anybody's 'pet patient" or that I will not "be challenging" has raised a giggle, so thank you. I realise there is a lot of baggage for everyone whenever ME is mentioned. You probably wont be surprised to know that some BACME members also have historical concerns, war wounds and cynicisms. Tbh I'm not terribly interested in the history, my focus (and the rest of the team) is to work constructively with all parties to develop and improve services and thus pwME's experiences. The times have changes, it is time to move forward.

 

[bobbler]

Jo, Im sorry your heart has sunk. The gold standard to which you refer is the recommended methodology for the development of PROMs from the US FDA. It details the methods and standards to develop patient reported outcomes to ensure they are fit for purpose, be that clinical or research use. These have been accepted and used world wide (by me and many others) for years. Have you heard of COMET? I presume you have, given you work in RA. Their way of working is based on the same 'gold standard'.

I won't start an essay on clinical measurement, and the pros and cons of PROMS right now but I am happy to discuss. Safe to say that my research in other chronic, disabling, complex conditions (and other people's of course) has shown that using a range of PROMs (I prefer 'clinical measurement tools' tbh, as measuring outcome is only one small element of their usage) improves patients' and clinicians' understanding of the nature and severity of the difficulties patients face and their needs; enables more accurate and objective monitoring of progress and outcome; facilitates treatment planning, speeds clinical and joint decision-making, enhances communication both between professionals and between patients and professionals; and supports service evaluation and development.
I don't doubt you felt asking folk how they were was just dandy, but It doesn't offer that degree of information, which is why effective services expect more.
Help me understand, what are you sceptical about? Why do you think charities should not spend their money on research that will support services to deliver more effective patient-centred care? What are the 'healthcare politics games' of which you speak? The whole point of co-production is to work collaboratively and constructively (with pwME as well as clinicians) to build on all parties' knowledge, skills and experience so the end product meets everyone's needs and 'works' in practice/real life. The end product will be "what professionals like to think helps" as well as what pwME (and their supporters) think will help, plus the data that supports it. Whether you feel that is 'proper' evidence or not reflects on your understanding of this field of research than the methods used.

Hi Sarah,

Nice to see you here and thanks for contributing and telling us about your background and experiences.

Just so that I can contextualise this could you confirm what 'field' you are coming from when you are mentioning that this is better for 'offering effective services'.

I think knowing 'which services' the focus is perhaps helps to note here, as I assume these will be the measure of those? and their 'effectiveness' etc


I say this because many of us think in terms of medical care, and clinics being monitoring the condition and their health medically as well as potentially other forms of adjustment/support

It might be useful to somewhat 'itemise' which specific bits within this such PROMS aim to cover/measure? And are these things that e.g. a clinic would use to demonstrate 'usefulness' or 'where the money has gone', or are they more akin to the old-style satisfaction or improvement/recovery usage of such data?

 

[Trish]

Im not sure who are institutions to which you refer but, I read this post out to my family. The thought of me being anybody's 'pet patient" or that I will not "be challenging" has raised a giggle, so thank you. I realise there is a lot of baggage for everyone whenever ME is mentioned. You probably wont be surprised to know that some BACME members also have historical concerns, war wounds and cynicisms. Tbh I'm not terribly interested in the history, my focus (and the rest of the team) is to work constructively with all parties to develop and improve services and thus pwME's experiences. The times have changes, it is time to move forward.

Re 'pet patients' I just mention Esther Crawley and say no more.

Re baggage, I'm curious to understand what you are referring to with BACME members having war wounds, cynicism etc.

I completely understand that your focus is on moving forward. As a researcher working on making things better for pwME that's fine and as it should be.

But I can't agree yet that times have changed. Yes there have been some steps forward, eg NICE and DecodeME. But for many of us here nothing has improved in our care or lack of it, and for every step forward there is another fightback from the old guard.

We see the psychosomatic views every week in the media on both ME and LC; research papers making all the old assumptions and missteps; lack of progress in implementation of NICE by NHS England; and powerful individuals like Wessely and Garner each in his own way fighting to retain the psychosomatic view of ME/CFS and using underhand and overt ways to influence the NHS, NICE and probably Cochrane. And this is happening in other countries too.

We spend a lot of our limited energy on this forum picking apart and trying to do something about all this, so please forgive us if we sometimes come across as cynical and negative, and too quick to criticise. It's pretty traumatising taking on board all this ongoing damage to pwME around the world week after week. It's not about looking backwards, it's about recognising and bearing public witness to the harm still being done, and trying to provide critiques and responses to try to contribute to change.

 

[bobbler]

Mike leads the Leeds Psychometric Lab. He is the world's 'go to' expert on Rasch analysis. This is the statistical approach we will use to assess the psychometrics of the measurement tools. He and I have worked together for years to develop several clinical measurement tools. He is a top bloke. He has no involvement in the ME world. His role is to do the stats, he is blissfully independent of the whole ME baggage thing and long may he remain so. He collaborated with Manoj Svan et al, playing a similar role in the development of the Covid-19 Rehab tool.

Thanks Sarah,

I did do a quick read of his page and noted these things - and nice to have you confirm he is a top bloke and you know him well. I assumed his focus on this would, as those papers were, be the psychometric scale part. I thought it would be nice to get a sense of what the 'psychometric' would focus on, hence looking up his research - I have a psychology background, so I'm aware that this can be a pretty broad area in applicability/context (eg as far as things used for job interviews or air traffic control). But note his background in exercise science and health/medicine but recent focus on the stats stuff so didn't know how much to assume re: that

Am I right in taking from your answer that what you mean is that he is 'a fresh start' so the data and measures from him would start from scratch rather than drawing on past psychometrics he might have worked on with others in other contexts? and be driven by your starting from fresh as your own team - and wouldn't be building on other scales in similar literatures?

Or, if it is going to be drawn on, I'd be interested in answers re: my question was about the recent study he was involved in, that was about Covid-19, but specifically Long Covid/Post-covid (The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) patient-reported outcome measure for Long Covid or Post-COVID-19 syndrome)
- which seems to have measures in it too, so it would be good to know if it is this sort of thing that would give us a 'flavour' of what might be being looked at in that area?

The paper itself is here: https://pubmed.ncbi.nlm.nih.gov/35603810/

and there is also one focused on the psychometric analysis here: https://pubmed.ncbi.nlm.nih.gov/34676578/

which has the following quote in its abstract:

This is the first study to examine the psychometric properties of an outcome measure in patients with PCS. In this sample of patients, the C19-YRS was clinically useful and satisfied standard psychometric criteria, providing preliminary evidence of its suitability as a measure of PCS.

So I did wonder whether given this, the psychometrics might be for this project likely to be along similar types of lines/these papers might provide some flavour etc?

I'm sure that you can see why it is an obvious and straightforward question in my mind to ask, even just given how literature often works (building on other existing scales in similar areas) - is this study and its scales/measures similar or going to be any type of starting point for yours?

 

[MSEsperanza]

If the idea is to monitor how PWME are getting on I suspect the best way to do that is what I always did for PWRA - I asked them how they were getting on. They would tell me all sorts of different things that mattered to them at the time. I am not sure why one would want anything else.

Maybe a difference is that talking about RA symptom and coping with the disease and treatments is not as 'complex' as talking about ME/CFS symptoms and coping. Talking about PEM is difficult as is talking about coping/ pacing -- just recalling and giving an account of all the things that matter to me with regard to coping with my illness is very exhausting.

So a good assessment tool maybe could help.

Agree that it's crucial that assessment happening in clinical service must not be used to measure treatment/ coping effectiveness or service quality. Without a control group that's not possible. Yet my experience in rehabilitation clinics in Germany is that they do exactly this. Which can lead to clinic staff manipulating patients' assessment -- as happened to me so that medical discharge reports were not only wrong but also meant it needed another decade before my severe disability and incapacity for work was officially acknowledged -- with dire consequences for me.

 

[MSEsperanza]

assuming your experience is limited to ME, then you won't have experience of well-developed, psychometrically robust measurement tools so it perhaps not surprising. My experience of doing so in other conditions is that its possible and helpful.

Could you give examples?

I don't get why you need psychometric measurement tools for monitoring patients with ME/CFS.

I think a smart symptoms/ activity diary could be helpful if doesn't need too much time to fill in?

Also with regard to wearables, I agree they have to be validated / adjusted for ME/CFS, but there has been so much progress in the development of them -- why not prioritize adjustment / validation of wearables instead of psychometrics?

 

[sarahtyson]

Thanks Sarah,

I did do a quick read of his page and noted these things - and nice to have you confirm he is a top bloke and you know him well. I assumed his focus on this would, as those papers were, be the psychometric scale part. I thought it would be nice to get a sense of what the 'psychometric' would focus on, hence looking up his research - I have a psychology background, so I'm aware that this can be a pretty broad area in applicability/context (eg as far as things used for job interviews or air traffic control). But note his background in exercise science and health/medicine but recent focus on the stats stuff so didn't know how much to assume re: that

Am I right in taking from your answer that what you mean is that he is 'a fresh start' so the data and measures from him would start from scratch rather than drawing on past psychometrics he might have worked on with others in other contexts? and be driven by your starting from fresh as your own team - and wouldn't be building on other scales in similar literatures?

Or, if it is going to be drawn on, I'd be interested in answers re: my question was about the recent study he was involved in, that was about Covid-19, but specifically Long Covid/Post-covid (The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) patient-reported outcome measure for Long Covid or Post-COVID-19 syndrome)
- which seems to have measures in it too, so it would be good to know if it is this sort of thing that would give us a 'flavour' of what might be being looked at in that area?

The paper itself is here: https://pubmed.ncbi.nlm.nih.gov/35603810/

and there is also one focused on the psychometric analysis here: https://pubmed.ncbi.nlm.nih.gov/34676578/

which has the following quote in its abstract:


So I did wonder whether given this, the psychometrics might be for this project likely to be along similar types of lines/these papers might provide some flavour etc?

I'm sure that you can see why it is an obvious and straightforward question in my mind to ask, even just given how literature often works (building on other existing scales in similar areas) - is this study and its scales/measures similar or going to be any type of starting point for yours?

I and the rest of the team will work with the pwME and clinician advisory groups to develop draft tools. We will collect data using them via electronic surveys. Mike will complete Rasch analyses on the data and then we - me, him, research team, advisory groups will decide how/whether to revise them to ensure constructive and content validity.

 

[sarahtyson]

Could you give examples?

I don't get why you need psychometric measurement tools for monitoring patients with ME/CFS.

I think a smart symptoms/ activity diary could be helpful if doesn't need too much time to fill in?

As I've explained in previous posts, activity monitored could be useful if they worked. And maybe one day they will. But at present there isn't anything that is usable at a service level.

As for examples, in my research page at UoM there are links to the projects I have done in stroke, neuro rehab, musculo-skeletal and rheumatoid conditions, chronic pulmonary conditions, children's major trauma. Take your pick.

 

[Shadrach Loom]

No, the gold standard "trope" does not mean EBM. The gold standard to which I refer is the US FDA recommendations for the development of PROMS. These have been accepted and widely used for years. You see, there is a wider research world than just the PACE trial and ME. I realise you, and other posters may not be familiar with the methods I am proposing to use, but that does not mean they are without merit or worthy of derision.
I'm afraid I don't understand the rest of the post "Which, yeah, basically means "plastic-painted gold tchotchke" than actual gold-plated. So much marketing and hype in this profession. They take the absolute least reliable, most biased and ineffective, methodology known and call it "gold plated" as if it means anything. It's made to look expensive, and it is, but it is strictly ornamental."
Perhaps you could explain what your objection is, and why you feel my work is "plastic-painted gold tchotchke ... So much marketing and hype in this profession.... and the absolute least reliable, most biased and ineffective, methodology known". Ive been called many things in my life, but a "fake gold academic" and '"purely ornamental" are novelties, could you justify them please?

This would best be addressed by @rvallee . You’ve quoted my weak pun in reply to his post, thus tagging me rather than him.