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

Shh don’t tempt fate :whistle:
:)

If I wanted to put something controversial out in a way that minimised backlash from the informed ME/CFS community, I would time the announcement to coincide with the release of the DecodeME results. Either we will be happy and excited and busy planning. Or we will be disappointed and taking consolation in Netflix or some other distraction available to us. And so, either way, we could miss something we really should be keeping an eye on.

It will be interesting to see if anything of that sort happens.
 
:)

If I wanted to put something controversial out in a way that minimised backlash from the informed ME/CFS community, I would time the announcement to coincide with the release of the DecodeME results. Either we will be happy and excited and busy planning. Or we will be disappointed and taking consolation in Netflix or some other distraction available to us. And so, either way, we could miss something we really should be keeping an eye on.

It will be interesting to see if anything of that sort happens.
A good day to bury news…
Hopefully they will be obsolete by the time they’re finished. I can dream!
 
Can anyone give me a super short rundown of what the project is about?

The MEA spent £90,000 on a project led by physiotherapist Professor Sarah Tyson to develop a set of questionnaires intended to be part of a 'toolkit' to be used by UK ME/CFS clinics.

Prof Tyson's past experience was mostly as a physio in a stroke clinic, she has no background treating ME/CFS, but she has mild ME/CFS herself. She had Pete Gladwell, physio who runs the Bristol ME/CFS clinic, and who has produced problematic resources for AfME, working on it with her.

The questionnaires she developed which some of us joined in testing were dreadful. She joined the forum and participated on this thread, but tended to act as the expert rather than listening to criticisms and suggestions, culminating in her grossly insulting forum members.

The forum sent letters of complaint and criticism to the MEA. They were dismissed by the then chair of trustees, who has since resigned or been sacked.

Open letters to the UK ME Association trustees about a research project developing PROMs, led by Sarah Tyson

The MEA have been silent for months about the project, which was intended to be completed by the end of 2024.
 
The MEA spent £90,000 on a project led by physiotherapist Professor Sarah Tyson to develop a set of questionnaires intended to be part of a 'toolkit' to be used by UK ME/CFS clinics.

Prof Tyson's past experience was mostly as a physio in a stroke clinic, she has no background treating ME/CFS, but she has mild ME/CFS herself. She had Pete Gladwell, physio who runs the Bristol ME/CFS clinic, and who has produced problematic resources for AfME, working on it with her.

The questionnaires she developed which some of us joined in testing were dreadful. She joined the forum and participated on this thread, but tended to act as the expert rather than listening to criticisms and suggestions, culminating in her grossly insulting forum members.

The forum sent letters of complaint and criticism to the MEA. They were dismissed by the then chair of trustees, who has since resigned or been sacked.

Open letters to the UK ME Association trustees about a research project developing PROMs, led by Sarah Tyson

The MEA have been silent for months about the project, which was intended to be completed by the end of 2024.
Thank you! That sounds like a complete farce. I understand why you hope they’ve dropped it!
 
Thank you! That sounds like a complete farce. I understand why you hope they’ve dropped it!

I think it was initially sold as something that would develop better measurements 'of ME/CFS' and if I remember this wasn't always clear and consistent across different media in different times because at first it wasn't made clear it was about clinics and research and datasets, but then it was and by the end there was talk of it being possible to share it across other services from clinics etc.

at some point there was a hint of it would be happenning anyway, so better to have one developed with these people involved rather than done to us etc.

they released it in 3 parts, with many months between each, and the MEA advertising the link to the survey for each so quite a lot of people just filling it in assuming it was a good thing. But I don't think we ever really got good descriptions of what each of the upcoming next parts would be so that people filling in the first would know how 'all three' was somehow going to be measuring something altogether.

But PEM was a massively 'missed/ducked/not done' aspect. It kept being promised that 'a later part' was going to focus on it or cover it on its own to those being asked to fill in the early ones, and then when that part came it I don't think even called it PEM and wasn't necessarily capturing it.

And no - even though there were many months gap to the next part, there weren't I don't think any 'results' given for the previous parts so people could see how what they'd filled in translated into something else.

And even the first one was a black box because I think they were using psychometrics (which I assume means they were 'prospecting' by finding which answers coincided most with certain outcomes or something similar to work out which items should be on a questionnaire because they were 'predictive'), so were just producing really long questionnaires without anyone really getting explanation why certain questions/answers were on there (and I'd guess others weren't too) and how they were really going to be assessing them before being asked to fill it in.

Which to me is an informed consent issue.

And does that mean people have been led into completing first parts on the promise that it is a proper questionnaire that covers ME/CFS ie an illness with a cardinal symptom of PEM - and then once they can't remove their data from those former parts they get to see the later ones where PEM is supposedly the main thing being covered and it isn't what was expected?

There were also some interesting things explicitly to do with the consent - in that I don't know whether it was at part 2 or part 3 but people suddenly had a new different list of things to agree to than had been the case for the initial questionnaire (and if I remember correctly on some ways of accessing it this wasn't easy to get hold of to read etc?)

Apart from some fuzzy blurb, suggesting something which would be hard to check or verify due to the black box nature of that approach and also there are questions as to whether it would be the most justified method on its own anyway - before you start thinking about issues like ceiling and floor effects (can't improve or can't get worse because the scale limits it) and how important something is that is listed vs something that wasn't listed so couldn't have been ticked as a symptom.

There were also issues with ambiguity or the wording of questions. As there are with too many surveys on ME/CFS - so I guess that isn't a surprise.
 
I think it was initially sold as something that would develop better measurements 'of ME/CFS' and if I remember this wasn't always clear and consistent across different media in different times because at first it wasn't made clear it was about clinics and research and datasets, but then it was and by the end there was talk of it being possible to share it across other services from clinics etc.

at some point there was a hint of it would be happenning anyway, so better to have one developed with these people involved rather than done to us etc.

they released it in 3 parts, with many months between each, and the MEA advertising the link to the survey for each so quite a lot of people just filling it in assuming it was a good thing. But I don't think we ever really got good descriptions of what each of the upcoming next parts would be so that people filling in the first would know how 'all three' was somehow going to be measuring something altogether.

But PEM was a massively 'missed/ducked/not done' aspect. It kept being promised that 'a later part' was going to focus on it or cover it on its own to those being asked to fill in the early ones, and then when that part came it I don't think even called it PEM and wasn't necessarily capturing it.

And no - even though there were many months gap to the next part, there weren't I don't think any 'results' given for the previous parts so people could see how what they'd filled in translated into something else.

And even the first one was a black box because I think they were using psychometrics (which I assume means they were 'prospecting' by finding which answers coincided most with certain outcomes or something similar to work out which items should be on a questionnaire because they were 'predictive'), so were just producing really long questionnaires without anyone really getting explanation why certain questions/answers were on there (and I'd guess others weren't too) and how they were really going to be assessing them before being asked to fill it in.

Which to me is an informed consent issue.

And does that mean people have been led into completing first parts on the promise that it is a proper questionnaire that covers ME/CFS ie an illness with a cardinal symptom of PEM - and then once they can't remove their data from those former parts they get to see the later ones where PEM is supposedly the main thing being covered and it isn't what was expected?

There were also some interesting things explicitly to do with the consent - in that I don't know whether it was at part 2 or part 3 but people suddenly had a new different list of things to agree to than had been the case for the initial questionnaire (and if I remember correctly on some ways of accessing it this wasn't easy to get hold of to read etc?)

Apart from some fuzzy blurb, suggesting something which would be hard to check or verify due to the black box nature of that approach and also there are questions as to whether it would be the most justified method on its own anyway - before you start thinking about issues like ceiling and floor effects (can't improve or can't get worse because the scale limits it) and how important something is that is listed vs something that wasn't listed so couldn't have been ticked as a symptom.

There were also issues with ambiguity or the wording of questions. As there are with too many surveys on ME/CFS - so I guess that isn't a surprise.

One issue that was also flagged was the length of questionnaires (and wording) vs accessibility for those who were more severe, and a debate about whether long questionnaires are harmful slowly 'grew'.

https://www.s4me.info/threads/uk-me...alist-services-2023.33221/page-10#post-515932

this post, particularly later on, covers a bit of what they are going to be using it for: https://www.s4me.info/threads/uk-me...alist-services-2023.33221/page-10#post-515951

and this is Trish's letter with a really good overview of the issues by the second part which was the PASS (supposed to cover PEM I think): https://www.s4me.info/threads/uk-me...alist-services-2023.33221/page-11#post-516708

the next link you may or may not want to read, but was when Sarah decided she wouldn't be interacting any further: https://www.s4me.info/threads/uk-me...alist-services-2023.33221/page-12#post-517050
 
Yes the plan was to gather information which could be used as a large dataset on ME - something NICE 206 identified as a gap. Sounds good, right? Sounds like the sort of thing the ME association should fund.

Except - the way this dataset would be generated was by the project group of Sarah Tyson and 2 NHS employees being given a grant to create ME “PROMs” Patient ReportedOutcome Measures which is a metric the NHS uses.
So they were paying a grant to 2 NHS staff to invent an NHS patient outcome database which would magically help pwME by being a dataset. And Sarah, who is retired from University of Manchester due to ME. She has ME so is the expert on all things ME.
 
post where Trish goes over the initial article/pos

question about PROMS project and whether it is part of the delivery plan: https://www.s4me.info/threads/uk-me...alist-services-2023.33221/page-19#post-524606

useful point by Hutan that if they are using surveys done in clinics only seeing those least ill then then it is a circular issue if they are being used to inform future development of said care because it won't include those who they are not serving currently/the severe: https://www.s4me.info/threads/uk-me...alist-services-2023.33221/page-20#post-524861

MrMagoo then succinctly puts their finger on what the issue is of PROMS being designed to measure what they want to be delivering and measuring not what ME needs (in our eyes): https://www.s4me.info/threads/uk-me...alist-services-2023.33221/page-22#post-525330

and the posts following that I think are useful.


There is then quite a lot of posts sequentially from me on this one: https://www.s4me.info/threads/uk-me...alist-services-2023.33221/page-22#post-525535

which pick up on Maat pointing out an issue.

And me then realising that the idea of having a different measure (a PROMS) is something Gladwell had been selling in research he'd been doing almost straight after the following paper in 2013 which included Crawley and White, and which explicitly ordered as an outcome that the measures needed to change and remove SF-36 (because they couldn't get an effect from that) and change the chalder fatigue scale to PROMS (as CFQ only had a small effect)

Crawley et al (2013) was actually another arm of the PACE trial (just done in clinics and so reported just slightly later) - so it literally seems to go all the way back to that result being shaky [and maybe they knew it was temporary?] - and didn't find that there was any increase in the physical function measure (SF-36), unlike PACE.

Even though some of Gladwell's papers (which suggest PROMS or critique the Chalder Fatigue Scale) seem younger as if there was a break - you will note through going through these posts that he had a number of pieces of research that were started off and done and then spent a lot of years sitting around before they were then published.
 
One issue that was also flagged was the length of questionnaires (and wording) vs accessibility for those who were more severe, and a debate about whether long questionnaires are harmful slowly 'grew'.

https://www.s4me.info/threads/uk-me...alist-services-2023.33221/page-10#post-515932

this post, particularly later on, covers a bit of what they are going to be using it for: https://www.s4me.info/threads/uk-me...alist-services-2023.33221/page-10#post-515951

and this is Trish's letter with a really good overview of the issues by the second part which was the PASS (supposed to cover PEM I think): https://www.s4me.info/threads/uk-me...alist-services-2023.33221/page-11#post-516708

the next link you may or may not want to read, but was when Sarah decided she wouldn't be interacting any further: https://www.s4me.info/threads/uk-me...alist-services-2023.33221/page-12#post-517050


Mainly because I've been reminded of it by Hutan's post that was responded to in one of these. Which references a paper on MS that specifically compared the sensitivity of a PROM vs SF-36 in picking up on/measuring worsened disability: The MSIS-29 and SF-36 as outcomes in secondary progressive MS trials, 2022, Strijbis et al | Science for ME

and underlines that the PROM misses this

Conclusion:
We found little consistent change in MSIS-29 and SF-36 over 2 years of follow-up in people with SPMS. Our findings show a disconnect between disability worsening and PROM change in this population. Our findings raise caution about the use of these PROMs as primary outcome measures in SPMS trials and call for a critical reappraisal of the longitudinal use of these measures in SPMS trials.

However, the authors of the editorial suggest that perhaps different aspects of a patient's experience are being measured. Unfortunately they suggest
So, despite knowing very well about the problems with subjective outcomes, the authors of the editorial still think that subjective outcomes are okay for mental health, fatigue and pain. These three sorts of outcomes are surely among the most vulnerable to response shift, especially when rehabilitation professionals are precisely encouraging that change in the frame of reference. And we have seen that the tools used for measuring these outcomes are often extremely vague on what the baseline comparator is - is it when you were last well? what is typical for a person your age? two months ago? when the trial started? Respondents' assumed baseline comparators can even change within one study, creating a complete mess in the data.

I assume that the acceptance of subjective outcomes stems partly from a belief that there are no good objective outcomes for mental health, fatigue and pain. Of course, it does not make sense to accept a misleading outcome just because you can't think of a good one. Surely, these internally experienced problems are reflected in outcomes that, with care, can be objectively measured - e.g. percentage of days when the participant left the house, steps walked, quantity of pain relief consumed?
 
and because I've been looking back through the whole thread and was thinking it was worth mentioning the issue (or perhaps to bps 'finding' which seemed to become a tactic) that Heins et al (2013): The process of CBT for CFS: Which changes in perpetuating cognitions and behaviour are related to a reduction in fatigue?, 2013, Knoop et al. | Science for ME
showed where Fatigue increased with Objective Activity, but decreased with Perceived Activity in a cohort who had been under false-beliefs CBT. ie when their perceptions had been distorted into thinking they were doing more than they were.

So a measure that asks people to do a third questionnaire on their activity only by subjective retrospective measures after they may well have been attending a clinic focused on certain 'psych /re-education / embedded ideas' and that will perhaps be passing on this 'progress' to other parties and might be seen as an indicator of whether you have been compliant etc. too is an issue.

Particularly when, as the Heins et al (2013) paper seemed to do with its 1-4 (slow-fast and non responders to CBT), you might well be skewing your sample by those who attend a supply-led clinic only being those who find it helpful rather than harmful and only those in this group and are well enough etc to provide their feedback via these surveys, at these timepoints.

Apologies I couldn't get these quotes to work on multiquote so had to cut and paste without the reference to the post, but they are about 5 posts down: The process of CBT for CFS: Which changes in perpetuating cognitions and behaviour are related to a reduction in fatigue?, 2013, Knoop et al. | Science for ME

screen-shot-2022-02-18-at-4-09-26-pm-png.16536



Yes, that is quite a result. So, the 'fast responders' thought they were doing increasing amounts of activity after treatment, but actually they were doing pretty much the same amount of activity throughout.

Which is why we need actimeters to be used in these sorts of trials.

Just in case you were wondering what the scales in the two charts mean, here's the detail from the paper. Note, for the Objective Activity, that the chart has a truncated y axis - the oldest trick in the book to make non-significant differences look more different. Only baseline levels of Objective Activity were reported to the participants, at other times the participants did not know their Objective Activity measurement.

For the Perceived Activity, the y values are from a 3 question questionnaire.


"Objective activity

Objective activity was measured using an actometer, a motion sensing device developed at the Radboud University, worn around the ankle [29]. The mean number of accelerations was calculated automatically every 5 min, based on which a mean daily activity score was calculated. Activity was registered during 12 days both before and after treatment. During treatment, objective activity was registered during 4 complete days to limit the burden for participants. At the end of the measurement period data were visually checked by a research assistant to ensure that the device had worked properly and to check compliance. Days on which the device was worn for less than 22 h were excluded. Patients did not receive feedback on their activity level during the measurements, but they were told their activity level after the baseline measurement."

"Perceived physical activity
Perceived physical activity was measured with an adapted version of the subscale physical activity of the Checklist Individual Strength [22]. This subscale indicates the perceived level of physical activity in the previous two weeks, measured with three items (I am physically very active (reverse scoring); I am physically not very active; My level of physical activity is low). These items are measured on a seven-point scale ranging from ‘Yes, that is true’ to ‘No, that is not true’. Scores range from 3 to 21, with higher scores indicating a lower level of physical activity. The mean (SD) of the subscale in 915 untreated CFS patients was 18.0 (4.24) and Cronbach's alpha was .81."
 
https://www.facebook.com/1000643212...YGsqFPRriKhEGXVfJK97gp7mwvFEtsTKmXkl/?app=fbl

I’m posting this here specifically in the context that one comment to this post on this app (which involves DHSC and DWP) suggests in the past MEA were waiting until PROMS reports to comment on the app.

I haven’t checked if there is a page about this app/MEA post in the more general elsewhere as I imagine that itself is worth one on its own thread?

quote from the fb post:
The 'Open-OH' project, funded by SBRI via the Department for Health & Social Care and Department for Work & Pensions, has developed an App aimed at supporting people with Long Covid, ME/CFS, Fibromyalgia and other long-term conditions, taking an occupational health & therapy-led approach.

For more discussion on the Open-OH app and a February 2025 webinar involving the MEA, Sarah Tyson, Elaros and BACME:

The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app
 
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I don’t know if this was seen?

ELAROS Hosts Webinar on Digitally Supporting ME/CFS and Long COVID Services - C19-YRS
https://c19-yrs.com/elaros-hosts-webinar-on-digitally-supporting-me-cfs-and-long-covid-services/

On Wednesday, 5th February, ELAROS hosted a webinar on Digitally Supporting ME/CFS and Long COVID Services, bringing together key experts at a crucial time for the ME/CFS and Long COVID communities.

The event featured a presentation from Sarah Tyson (University of Manchester/ME Association) and Russell Fleming (ME Association), who provided an update on the development of a new clinical assessment toolkit for ME/CFS, created in collaboration with people with ME/CFS and clinicians working in NHS ME/CFS specialist services.

Román Rocha Lawrence from ELAROS led the session, presenting our proposal to support NHS ME/CFS services in partnership with The ME Association. This collaboration aims to offer early exclusive access to The MEA’s clinical toolkit through ELAROS’ digital platform, which has already supported tens of thousands of patients across 65 health organisations worldwide, as well as national research studies and service evaluations for NHS England and NHS Scotland.

We were also joined by Anna Gregorowski, Chair of BACME (British Association of Clinicians in ME/CFS), a multidisciplinary organisation dedicated to advancing ME/CFS clinical care in the UK. ELAROS is working closely with BACME to signpost its resources, ensuring they are more widely accessible to clinicians and patients through our digital channels.
 
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Mainly because I've been reminded of it by Hutan's post that was responded to in one of these. Which references a paper on MS that specifically compared the sensitivity of a PROM vs SF-36 in picking up on/measuring worsened disability: The MSIS-29 and SF-36 as outcomes in secondary progressive MS trials, 2022, Strijbis et al | Science for ME

and underlines that the PROM misses this


Just adding because it might be useful to add a general description of what the SF-36 questions approx include for physical function

These are just from the AI at the top of the search engine, so I hope that they are suitable to paste?

"The SF-36 questionnaire assesses physical functioning through a series of questions, primarily focused on daily activities and the impact of health on those activities. These questions explore limitations in activities like walking, climbing stairs, and engaging in vigorous activities, as well as the ability to perform basic tasks like bathing or dressing.

Specific questions in the Physical Functioning domain of the SF-36 include:

Vigorous activities: How much difficulty do you have with activities like running, lifting heavy objects, or participating in strenuous sports?

Moderate activities: How much difficulty do you have with activities like moving a table, pushing a vacuum cleaner, bowling, or playing golf?

Lifting or carrying groceries: How much difficulty do you have with this activity?

Climbing several flights of stairs: How much difficulty do you have with this activity?

Climbing one flight of stairs: How much difficulty do you have with this activity?

Bending, kneeling, or stooping: How much difficulty do you have with this activity?

Walking more than a mile: How much difficulty do you have with this activity?

Walking several blocks: How much difficulty do you have with this activity?

Walking one block: How much difficulty do you have with this activity?

Bathing or dressing yourself: How much difficulty do you have with this activity?

These questions help to gauge the extent to which physical health problems limit a person's ability to participate in various activities of daily living."



It seems the questions come with a scale of 'limited a lot' to 'not limited' to select from

and from what I can gather the questions are indeed phrased over different 'recall periods' depending on the research: Short Form 36 - an overview | ScienceDirect Topics

The SF-36 offers a choice of recall format at a standard (4 week) or acute (1 week) time frame.

so either fronting each question with “over the last month …” or “in the last week…”
 
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