The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

I'm losing the will to live on this app. There is so much there, bits of it OK, bits dreadful, some documents contradicting other documents. How is a new patient supposed to navigate their way through the blizzard?

I'll have one more go later today then try to summarise my key concerns from what I've seen.
 
I just took another item from the app at random.

It's in the section Condition Overview,

What is ME/CFS?

A not particularly good summary of some aspects of ME/CFS which is a copy of this article by ME Research UK What is ME?

At the end of the article the acknowlegement is the ME Association. I got a clue that it was an MERUK article, not an MEA article, from the bit that says 'none of us at MERUK are medical doctors', and proceeded to invite donations for research.

So a complete mix up. What a badly put together app. Some jobsworth has just cobbled together a random selection of documents from multiple organisations with overlaps and contradictions.
_____________

And another bad choice:

Again in the section Condition overview

What do we know about the causes of ME/CFS
A badly outdated MEA 3 page article by Charles Shepherd dated February 2020, so pre NICE and pre Rituximab results, and still saying most doctors in the UK believe the BPS model where "persisting ill health is largely maintained by maladjusted behaviour and unhelpful illness beliefs", and some believe it's psychiatric, but CS and the MEA believe it is physical. There is a summary of some of the biomedical findings and hypotheses current back then, including brain, muscle and immune abnormalities.
_______


Explaining ME/CFS to other people, links another MEA booklet dated September 2024.
 
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MrMagoo said:
Sorry to bother you @Trish I’m particularly interested in the Voice stuff given my history, if you are taking requests.
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Will do. If it doesn't appear tomorrow, remind me.

I have just filled in the feedback form on the app. Basically I've said it's useless, clunky, too many outdated, contradictory, inaccurate, and overlapping resources copied from various sources, And I told them off for the pacing up advice, describing it as a version of GET and potentially equally harmful.
For new things to add I suggested FUNCAP, the S4ME factsheets, and the facillity to directly link wearable data.
I told them not to use Sarah Tyson's materials and to use FUNCAP instead, and to scrap the Chalder questionnaire.
I also told them they should make it easy for patients to opt out at any stage of their clinicians or researchers having access to their personal data.
 
MrMagoo said:
Sorry to bother you @Trish I’m particularly interested in the Voice stuff given my history, if you are taking requests.
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As predicted, I forgot. Sorry. I'll have a look at it now.

It's a mix of bits taken from booklets they reference

NHS Leeds: Long COVID rehabilitation booklet Information for patients page 39

WHO Support for rehabilitation: self-management after COVID-19-related illness page 16

And a couple of other booklets from Hertfordshire and Cambridge NHS which I assume are similar.
 
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Cinders66 said:
MEA & Elaros joint event
https://www.eventbrite.co.uk/e/inte...=ebdsshother&utm_share_source=listing_android
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I applied to attend this event and didn't get a response. It's intended for clinicians, so I expect that's why I wasn't invited.

The also offer recordings for those who can't attend, so I have emailed them to request recordings of this meeting and any earlier ones.

Here's a copy of my email:

re: the meeting on 2nd July titled Integrating ME/CFS and Long Covid Specialist Services, led by ELAROS and the ME Association, and the February meeting

Dear organisers,

I applied to attend the meeting on 2nd July, but have not received confirmation. In any case, a two hour online meeting is more than I can manage due to poor health, so I am requesting copies of the meeting and the earlier meeting in February.

I understand that the meeting is intended for clinicians, however, I think it is vital that well informed people with ME/CFS and Long Covid should be able to review the recordings and provide feedback. I am in the process of reviewing the beta version of the Open OH app and will be submitting my comments to the consultation.

I think I can also contribute usefully with feedback on the plans for adding more resources to the app developed by Professor Sarah Tyson's team, BACME, and others. I participated in the initial testing of the first iteration of Prof Tyson's questionnaires and have serious concerns about her work. The ME Association has, as far as I am aware, not opened up later stages in the development of her Clinical Tookit and PROMs to public consultation, so we are very much in the dark about what she is producing. Opening up the recordings of the meetings you have been holding to scrutiny by patients, as the likely recipients of clinical care based on these resources, just as you have made the beta version of the app open for feedback, should be an essential part of this process. I am sure you would rather be made aware of any problems with the approach taken by some of those involved as soon as possible in the process of development.

I look forward to your positive response. If you need to know more about me and my request, I will be happy to answer questions.

Thank you,

Trish Davis
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Trish said:
As predicted, I forgot. Sorry. I'll have a look at it now.

It's a mix of bits taken from booklets they reference

NHS Leeds: Long COVID rehabilitation booklet Information for patients page 39

WHO Support for rehabilitation: self-management after COVID-19-related illness page 16

And a couple of other booklets from Hertfordshire and Cambridge NHS which I assume are similar.
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Thanks Trish.

So they both reference “you may have been intubated in hospital” and that C19 can cause sore throat, laryngitis etc don't strain to talk and keep hydrated

In conclusion, nothing more exciting than “what to do if you lose your voice/have laryngitis” and there’s no advice on what to do if the problem doesn’t resolve. So myself who needed exercises from SALT and has been left with voice issues this would have been terrible advice to “self-manage”
 
To be fair the app does say if your voice doesn't return to normal seek referral to ENT, Ear, Nose and Throat and ENT Speech and Language Therapy. I hadn't noticed whether that was included in the references I linked.
 
Trish said:
I applied to attend this event and didn't get a response. It's intended for clinicians, so I expect that's why I wasn't invited.

The also offer recordings for those who can't attend, so I have emailed them to request recordings of this meeting and any earlier ones.

Here's a copy of my email:

re: the meeting on 2nd July titled Integrating ME/CFS and Long Covid Specialist Services, led by ELAROS and the ME Association, and the February meeting
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I received a partial response to my application to attend seminar on July 2nd.

I followed up with a telephone call to Elaros in Sheffield about the format of seminar and would questions be allowed.

I was told I would get a call back.
I did.
From CEO......
Professor Paul O'Brien.
Google him!

Essex based......
Interesting career......

Watch this space.
 
www.elaros.com

The Team - ELAROS 24/7 Ltd

Meet the Team Prof. Paul O'BrienChief Executive Officer and Director Bio Professor Paul O’BrienChief Executive Officer & Director Professor Paul O’ Brien was appointed CEO of ELAROS 24/7 in April 2012. Paul has held senior posts in the private sector (Chief Executive), local government (Chief...
www.elaros.com www.elaros.com
 
I have had an email reply from ELAROS refusing me attendance at their webinar and copies of the recordings of the webinars.

I'm crashed and not able to sort out copying the email here at the moment. Will do so when well enough.

The gist is it's intended for clinicians to discuss the running of NHS services, not to discuss the app.
 
I think MEA are completely failing the long-term and harmed m,e community if they allow or encourage m.e services to be just lumped in with the “here’s an app”, some information material and some remote service provision that the Leeds groups & elaros have planned for newly ill long covid, with early preventative management & back to work focus, just because ME/CFS and long covid share features as post-viral syndromes. This is not the model of care appropriate for a community that, due to NHS poor, neglectful or harmful management often are seriously and chronically disabled.
 
Cinders66 said:
I think MEA are completely failing the long-term and harmed m,e community if they allow or encourage m.e services to be just lumped in with the “here’s an app”, some information material and some remote service provision that the Leeds groups & elaros have planned for newly ill long covid, with early preventative management & back to work focus, just because ME/CFS and long covid share features as post-viral syndromes. This is not the model of care appropriate for a community that, due to NHS poor, neglectful or harmful management often are seriously and chronically disabled.
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It’s lumped in with RA and Fibromyalgia too. If it were just LC and ME that would be bad enough.
 
Wrapping rehab in an app feels awfully like a rehash of the past. I haven’t been through this whole thread sorry, but thanks to those who’ve been digging into this.

This approach may well be useful for some people who need this sort of support to recover from illnesses. How it helps change attitudes and care for those of us with ME/CFS that have been neglected for years I have no idea.
 
Cinders66 said:
I think MEA are completely failing the long-term and harmed m,e community if they allow or encourage m.e services to be just lumped in with the “here’s an app”, some information material and some remote service provision that the Leeds groups & elaros have planned for newly ill long covid, with early preventative management & back to work focus, just because ME/CFS and long covid share features as post-viral syndromes. This is not the model of care appropriate for a community that, due to NHS poor, neglectful or harmful management often are seriously and chronically disabled.
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I agree they are, but I’d argue that everyone is.
 
My email asking for recordings of the February and July meetings, and the reply:

To: c19-yrs <c19-yrs@elaros.com>
Subject: Request for recordings of meetings
re: the meeting on 2nd July titled Integrating ME/CFS and Long Covid Specialist Services, led by ELAROS and the ME Association, and any earlier meetings for which recordings are available.

Dear organisers,

I applied to attend the meeting on 2nd July, but have not received confirmation. In any case, a two hour online meeting is more than I can manage due to poor health, so I am requesting copies of the meeting and the earlier meeting in February.

I understand that the meeting is intended for clinicians, however, I think it is vital that well informed people with ME/CFS and Long Covid should be able to review the recordings and provide feedback. I am in the process of reviewing the beta version of the Open OH app and will be submitting my comments to the consultation.

I think I can also contribute usefully with feedback on the plans for adding more resources to the app developed by Professor Sarah Tyson's team, BACME, and others. I participated in the initial testing of the first iteration of Prof Tyson's questionnaires and have serious concerns about her work. The ME Association has, as far as I am aware, not opened up later stages in the development of her Clinical Tookit and PROMs to public consultation, so we are very much in the dark about what she is producing. Opening up the recordings of the meetings you have been holding to scrutiny by patients, as the likely recipients of clinical care based on these resources, just as you have made the beta version of the app open for feedback, should be an essential part of this process. I am sure you would rather be made aware of any problems with the approach taken by some of those involved as soon as possible in the process of development.

I look forward to your positive response. If you need to know more about me and my request, I will be happy to answer questions.

Thank you,

Trish Davis
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Hi Trish,

Thanks very much for your email and interest in our webinar with the ME Association. There are a couple of points to pick up on here which I’ll do my best to help with.

Attendance to this webinar

I’m afraid this webinar is restricted to clinicians, as per request from the organisers as it is intended to be a dedicated session to review and discuss the day-to-day operations of running NHS services with case studies working with their local patient groups, and support available to clinicians, for example membership at clinical societies.

Access to the recording falls under the scope too I’m afraid as we don’t have permission from the clinical representatives to share this publicly.

We appreciate your interest and the desire to attend, but we aren’t able to share this widely thereafter. However, the organisers (Elaros and the ME Association) recognise the need to plan future webinars intended for the general public and/or patient population and we will aim to announce these in due course. There are a lot of topics that we simply weren’t able to fit into this 2-hour webinar either which we would like to plan for in the future.

Feedback for Open-OH

Thank you very much for your involvement to Open-OH which is great to hear.

This webinar next week will not have anything to do with Open-OH so you are aware which is a public-facing app and must of course include people like yourself, whereas the webinar next week is focused on the operations within NHS services and their staff challenges.

We have an open channel available for feedback on the Open-OH app where we’d welcome any suggestions about the resoruces, you can reach out to us on open-oh@elaros.com or join our Facebook group if you haven’t already.

Feedback for the ME Association and their Toolkit

I’m not best placed to discuss the development of the Clinical Toolkit as this is the ME Association’s project, however I will pass on your query to a colleague there to see if I can put you in touch to provide further feedback.

Kind regards,

Román Rocha Lawrence (He / Him)

Director of Research & Development | ELAROS | roman.rochal@elaros.com
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I'm still crashed and don't have the capacity to complete and submit my detailed critique of the Open-AI app. Maybe next week...
 
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