The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app
Suffolkres
Senior Member (Voting Rights)
Won't allow.me in...again...
MrMagoo
Senior Member (Voting Rights)
Same
Suffolkres
Senior Member (Voting Rights)
I kept trying on Mac on phone via pass codes email you name it...for 30 mins..
Then I got in!
About 65 people in attendance
From: Barbara
Sent: 09 December 2025 15:48
To: autonom-e <autonom-e@elaros.com>
Subject:Re: The launch of the MEA Clinical Assessment Toolkit for Clinical Services - Join Link
I use a Mac and could not connect, despite repeated attempts.
I finally managed to get to join at 32 mins in on my phone.
Could you please send me the recording so I can hear all the webinar for completeness.
Regards,
Barbara
Then I got in!
About 65 people in attendance
From: Barbara
Sent: 09 December 2025 15:48
To: autonom-e <autonom-e@elaros.com>
Subject:Re: The launch of the MEA Clinical Assessment Toolkit for Clinical Services - Join Link
I use a Mac and could not connect, despite repeated attempts.
I finally managed to get to join at 32 mins in on my phone.
Could you please send me the recording so I can hear all the webinar for completeness.
Regards,
Barbara
It's tempting to think they may have selected out professional participants with a known link to non-professional interested parties. Behaving in the way they do sadly lays them open to suspicion and conspiracy theories.
Suffolkres
Senior Member (Voting Rights)
They did limit numbers to 250.. so 60ish is a bit thin
Was it worth the effort?
It did happen. I was allowed in, although I missed the first 20 minutes (probably the most important unfortunately) due to time zone issues (ie waking up for 4 am) and a bit of faffing around with extra security because apparently the webinar had 'sensitive content'. There wasn't much content of interest in the later part that I saw.
There were about 80 participants. Sarah Tyson, Roman, and Russell of the MEA were presenting.
As far as I could see, there was no claiming that the app will cure people of ME/CFS. The focus seemed to be on providing information about ME/CFS to patients. Clinics are able to upload resources of their own choosing to the app, which seems to me to be a significant problem, as it means that any resource can be given the credibility and authority of being endorsed by the NHS. When asked about that, Tyson replied that it's no different to face to face sessions where clinicians can say whatever they find useful.
Another focus seems to be on recording symptoms. Information from wearables is planned to be incorporated in the year ahead (which is ironic given Tyson's earlier opposition to the use of wearables in assessing outcomes.) I saw the Chalder Fatigue Scale mentioned in a list, but I'm not completely clear on what tools are used.
The outcomes seem to be patient satisfaction with the clinic/app i.e. (paraphrased from memory) 'Do you feel you know more about your condition now? Do you feel better able to manage your condition?'
I think the situation is less clear with Long Covid. The broader app platform (previously C10-YRS and now called autonom-e) is claimed to help with rehabilitation.
The core app content is said to all be available on the MEA website.
Edited to add - it seemed to be received very well by people from clinics.
There were about 80 participants. Sarah Tyson, Roman, and Russell of the MEA were presenting.
As far as I could see, there was no claiming that the app will cure people of ME/CFS. The focus seemed to be on providing information about ME/CFS to patients. Clinics are able to upload resources of their own choosing to the app, which seems to me to be a significant problem, as it means that any resource can be given the credibility and authority of being endorsed by the NHS. When asked about that, Tyson replied that it's no different to face to face sessions where clinicians can say whatever they find useful.
Another focus seems to be on recording symptoms. Information from wearables is planned to be incorporated in the year ahead (which is ironic given Tyson's earlier opposition to the use of wearables in assessing outcomes.) I saw the Chalder Fatigue Scale mentioned in a list, but I'm not completely clear on what tools are used.
The outcomes seem to be patient satisfaction with the clinic/app i.e. (paraphrased from memory) 'Do you feel you know more about your condition now? Do you feel better able to manage your condition?'
I think the situation is less clear with Long Covid. The broader app platform (previously C10-YRS and now called autonom-e) is claimed to help with rehabilitation.
The core app content is said to all be available on the MEA website.
Edited to add - it seemed to be received very well by people from clinics.
NelliePledge
Senior Member (Voting Rights)
Very ironic about wearables 
Suffolkres
Senior Member (Voting Rights)
Suffolkres
Senior Member (Voting Rights)
Don't do children, yet to do SAs.....
I asked for more detail on how SAs were included.
Worries seem to be LC gravy train is/ has dried up!
LC Tyson feels is almost same as ME...So, hey, App is transferable..
So let's do ME (milds and moderate)
They yet have to get to grips with related conditions like Fibro etc
Coexisting conditions comorbidy work for future. ... .
Definitely not curative.....
App delivers to NHS clinics more than directly to patients some who pay.
I asked for more detail on how SAs were included.
Worries seem to be LC gravy train is/ has dried up!
LC Tyson feels is almost same as ME...So, hey, App is transferable..
So let's do ME (milds and moderate)
They yet have to get to grips with related conditions like Fibro etc
Coexisting conditions comorbidy work for future. ... .
Definitely not curative.....
App delivers to NHS clinics more than directly to patients some who pay.
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Suffolkres
Senior Member (Voting Rights)
Like to know what the game plan is...?
I bet RF was less than easy which is why he was vaping through it.. dreadful!
MrMagoo
Senior Member (Voting Rights)
Anybody want to ask my question?
Given that this app moves the admin burden to ME/CFS patients, and given it doesn’t do anything as well as other apps patients can already access*, scrapes free info from the web (like MEA website) and has a function to email professionals which can already be done by email, it seems like more effort for what we can do already, better, in other ways. I see the benefits all the stakeholders except patients, what’s the benefit to patients?
* (free and low cost apps like bearable, visible, tech like xiaomi, Fitbit, all log data including passively or with less effort, pull stats and reports at the push of a button)
Edit to tidy up the rant!
Given that this app moves the admin burden to ME/CFS patients, and given it doesn’t do anything as well as other apps patients can already access*, scrapes free info from the web (like MEA website) and has a function to email professionals which can already be done by email, it seems like more effort for what we can do already, better, in other ways. I see the benefits all the stakeholders except patients, what’s the benefit to patients?
* (free and low cost apps like bearable, visible, tech like xiaomi, Fitbit, all log data including passively or with less effort, pull stats and reports at the push of a button)
Edit to tidy up the rant!
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I was able to access the webinar today without any trouble. I realised after I failed yesterday that I had missed the one email that actually had the link directly to the webinar. I was messing about with some of the other emails that gave me links to tickets which didn't lead me to webinar access.
My overall impression of the Clinical Assessment Toolkit talk is that it is focused entirely on the assumption that it will be used in BACME style clinics to provide data for assessing services that only provide short courses for newly diagnosing and newly diagnosed patients. They were quite clear that this is a short term rehab provision with the questionnaires to be used at the start, middle and end of the course when they expect patients to be discharged.
After that, you're on your own, with just your GP and they suggest you can use the app to create reports to show your GP, employer, carers etc., though they had no idea whether any GP wouid actually be interested.
They talk about it being for long term conditions, but the whole emphasis was on short initial outpatient provision.
They claim the initial round of questionnaire data will be useful for diagnosis and focusing on patients treatment and care needs, but again, will a diagnosing doctor use this bunch of questionnaires, or follow normal physician case history taking and questionning?
They say this sort of multistage data collection and record keeping is required by all NHS services now to assess quality and effectiveness of provision, but is that true for physicians, or just for rehab therapists?
There are a bunch more questionnaires to be added, and talk from ELAROS of adding new functionality like wearables.
My gripe with the whole thing is that I think the questionnaires are so bad this will not provide useful or valid information, however Tyson may claim it's all validated and gold standard.
My overall impression of the Clinical Assessment Toolkit talk is that it is focused entirely on the assumption that it will be used in BACME style clinics to provide data for assessing services that only provide short courses for newly diagnosing and newly diagnosed patients. They were quite clear that this is a short term rehab provision with the questionnaires to be used at the start, middle and end of the course when they expect patients to be discharged.
After that, you're on your own, with just your GP and they suggest you can use the app to create reports to show your GP, employer, carers etc., though they had no idea whether any GP wouid actually be interested.
They talk about it being for long term conditions, but the whole emphasis was on short initial outpatient provision.
They claim the initial round of questionnaire data will be useful for diagnosis and focusing on patients treatment and care needs, but again, will a diagnosing doctor use this bunch of questionnaires, or follow normal physician case history taking and questionning?
They say this sort of multistage data collection and record keeping is required by all NHS services now to assess quality and effectiveness of provision, but is that true for physicians, or just for rehab therapists?
There are a bunch more questionnaires to be added, and talk from ELAROS of adding new functionality like wearables.
My gripe with the whole thing is that I think the questionnaires are so bad this will not provide useful or valid information, however Tyson may claim it's all validated and gold standard.
I missed this second webinar.
But, yes. A standardised and efficient modern method of collecting user satisfaction from clinics is fine, that is questions along the lines of whether you feel better equipped to manage your disease, and collecting qualitative feedback about the service. That sort of quality control would be a good initiative in health services. But, does the NHS really need to use a commercial entity for that on an ongoing basis?
The poor quality of the ME/CFS specific stuff is a problem, and also the involvement of a commercial partner that will have access to the data.
But, yes. A standardised and efficient modern method of collecting user satisfaction from clinics is fine, that is questions along the lines of whether you feel better equipped to manage your disease, and collecting qualitative feedback about the service. That sort of quality control would be a good initiative in health services. But, does the NHS really need to use a commercial entity for that on an ongoing basis?
The poor quality of the ME/CFS specific stuff is a problem, and also the involvement of a commercial partner that will have access to the data.
MrMagoo
Senior Member (Voting Rights)
It sounds like what it is - a tool to measure NHS clinic delivery/satisfaction. Which is fine, but don’t tell me you’re doing it for my benefit, when you absolutely are not.
The short term clinic intervention also strengthens concerns about the “it’s not GET!” But why not try…doing more activity” BACME doc.
The short term clinic intervention also strengthens concerns about the “it’s not GET!” But why not try…doing more activity” BACME doc.
NelliePledge
Senior Member (Voting Rights)
Confirming they have spent charity money doing the job of the NHS on monitoring what the clinics do and not moving the needle on the type of support available to people using these clinics. (Posted at same time as Mr Magoo)