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

Suffolkres said:
Eleros essentially operational during the NHSE Covid flush of money and LC Serviced via MEA Sarah Tyson PROMs etc, (then leads to Delivery plan and BACME involvement) ...have been heavily 'marketing' their wares, talking up their product and expertise and then transposing across to ME and CFS, as the covid acute need reduces...

and every one then queues up for the so called ME and CFS Services.. within the new shiny Integration' 10 yr Plan, Digital AI and rehab agenda.
NICE!
.
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Yes agreed.

But this now also includes severe ME/CFS patients without any research evidence at all for safety or effectiveness except the FINE trial! Sister trial to PACE.

They've only just removed the activity and exercise in the last week because of 'feedback'.

They've been caught out. Remember that the final delivery plan announced the NIHR HERITAGE programme which will look into cost effectiveness of 'existing services'. By the time that's up and running this will be the existing service for ME/CFS and a National Service Framework and educational materials. Policy. It solves the arguments over using NICE ng206 and also explains why eLearning is not mandatory.
 
Maat said:
Yes agreed.

But this now also includes severe ME/CFS patients without any research evidence at all for safety or effectiveness except the FINE trial! Sister trial to PACE.

They've only just removed the activity and exercise in the last week because of 'feedback'.

They've been caught out. Remember that the final delivery plan announced the NIHR HERITAGE programme which will look into cost effectiveness of 'existing services'. By the time that's up and running this will be the existing service for ME/CFS and a National Service Framework and educational materials. Policy. It solves the arguments over using NICE ng206 and also explains why eLearning is not mandatory.
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This is worse than just us. Obviously as per usual, it’s worst for us and those of us who are severe/very severe.

This has been in the background whilst they were trying to cut PIP and merge it with LCWRA. We need to go to Benefits and Work, Crips against Cuts etc
 
MrMagoo said:
This is worse than just us. Obviously as per usual, it’s worst for us and those of us who are severe/very severe.

This has been in the background whilst they were trying to cut PIP and merge it with LCWRA. We need to go to Benefits and Work, Crips against Cuts etc
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Yes. DPAC should also know. I don't have the spare capacity for this though.
 
MrMagoo said:
We knew there was something, well sleuthed!
We need to tell activists.
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It would appear from MELN and those with involvement with ME 'Non' Delivery Plan .....

that 'someone' within DHSC Delivery Plan group .. has 'suggested and has made 'overtures' and has helped prearrange for Eleros to met with some Forward ME attendees and nembers soon....?

If this is for Forward ME work on Apps to be considered for PWME, especially SAs, surely it should invite involve a wide range of providers and so proper consideration evaluation can take place?

Probity and marketing /anti competitive protocols and Forward ME governance...?

MEA flagged this wonderful opportunity to that Beta OH...... endorsed by well meaning but new local support groups for LC. .....
MEA, while not allegedly, endorsement suggesting support to look at it. ...

MEA should not be facilitating private companies and their business model and their apps IMHO
Too right I say!
Or have I really now lost the plot?
Am I becoming a conspiracy theorist?
 
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A link on DPACs Facebook page to this page would be enough I guess. I don't have access to my Facebook account since I lost my internet connection and phone when I couldn't pay my bills, so email address and phone number are different now.
 
My mum.would have said, 'No smoke without fire'.......!
Still no acknowledgement from Russell F or Charlotte MEA to my repeated request for a call and for resolution of my request re Seminar.....
CS is still in oblivion on this matter.... MEA Trustees won't respond.
What to do..?
 
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Suffolkres said:
My mum.would have said, 'No smoke without fire'.......!
Still no acknowledgement from Russell F or Charlotte MEA to my repeated request for a call and for resolution of my request re Seminar.....
CS is still in oblivion on this matter.... MEA Trustees won't respond.
What to do..?
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From its articles
"The objects of the company are restricted to the following purposes:-
(a) to offer relief to persons of all ages with Myalgic Encephalopathy
(ME)/Chronic Fatigue Syndrome (CFS) through the provision of information
and
(b) to further education in all aspects of the illness and
(c) to support research into the illness including the making of grants and to
publish the useful results of that research
 
From an email from Elaros:

"Hi, I hope this email finds you well.

XXXX here from ELAROS, I am excited to announce our three upcoming webinars to support the Long Covid and ME/CFS clinical, academic, and patient communities.

You are receiving this email because you are a previous registered webinar attendee and/or have been a registered staff member at a clinical or academic organisation supported by ELAROS. Please let us know if you would like to be removed from this mailing list.

The launch of the ME Association Clinical Assessment Toolkit - 9th December at 15:00 GMT
Aimed at a clinicians, academics, and service providers: attend to learn more about the development and launch of the ME Association Clinical Assessment Toolkit available to clinical services

The launch of the ME Association App - 10th December at 15:00 GMT
Aimed at a public audience: attend to learn more about the launch of the ME Association app and Clinical Assessment Toolkit to support the ME/CFS community, available publicly

The launch of the C19-YRS Long Covid app to the public - 11th December at 15:00 GMT
Aimed at a public audience: attend to learn more about the launch of the C19-YRS public app to support the Long Covid community, available publicly

Each event will be recorded. Please email autonom-e@elaros.com for a copy of the recording if you are unable to attend on the day, and to hear more about upcoming updates and research studies available to join through each app.

A maximum of 250 participants will be able to join on the day due to restrictions with Microsoft Teams and will be limited to registered attendees only."
 
Hutan said:
A maximum of 250 participants will be able to join on the day due to restrictions with Microsoft Teams and will be limited to registered attendees only."
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Have they never heard of live events or town halls? The limit for view-only participants is 10,000 for those, and they can use written questions as well. They are a software company, they should know how to do this.
 
Hutan said:
From an email from Elaros:

"Hi, I hope this email finds you well.

XXXX here from ELAROS, I am excited to announce our three upcoming webinars to support the Long Covid and ME/CFS clinical, academic, and patient communities.

You are receiving this email because you are a previous registered webinar attendee and/or have been a registered staff member at a clinical or academic organisation supported by ELAROS. Please let us know if you would like to be removed from this mailing list.

The launch of the ME Association Clinical Assessment Toolkit - 9th December at 15:00 GMT
Aimed at a clinicians, academics, and service providers: attend to learn more about the development and launch of the ME Association Clinical Assessment Toolkit available to clinical services

The launch of the ME Association App - 10th December at 15:00 GMT
Aimed at a public audience: attend to learn more about the launch of the ME Association app and Clinical Assessment Toolkit to support the ME/CFS community, available publicly

The launch of the C19-YRS Long Covid app to the public - 11th December at 15:00 GMT
Aimed at a public audience: attend to learn more about the launch of the C19-YRS public app to support the Long Covid community, available publicly

Each event will be recorded. Please email autonom-e@elaros.com for a copy of the recording if you are unable to attend on the day, and to hear more about upcoming updates and research studies available to join through each app.

A maximum of 250 participants will be able to join on the day due to restrictions with Microsoft Teams and will be limited to registered attendees only."
Click to expand...
Here we go again.. Trish, have you booked...?
I have. I am still being blanked by MEA RF.....
 
Hutan said:
From an email from Elaros:

"Hi, I hope this email finds you well.

XXXX here from ELAROS, I am excited to announce our three upcoming webinars to support the Long Covid and ME/CFS clinical, academic, and patient communities.

You are receiving this email because you are a previous registered webinar attendee and/or have been a registered staff member at a clinical or academic organisation supported by ELAROS. Please let us know if you would like to be removed from this mailing list.

The launch of the ME Association Clinical Assessment Toolkit - 9th December at 15:00 GMT
Aimed at a clinicians, academics, and service providers: attend to learn more about the development and launch of the ME Association Clinical Assessment Toolkit available to clinical services

The launch of the ME Association App - 10th December at 15:00 GMT
Aimed at a public audience: attend to learn more about the launch of the ME Association app and Clinical Assessment Toolkit to support the ME/CFS community, available publicly

The launch of the C19-YRS Long Covid app to the public - 11th December at 15:00 GMT
Aimed at a public audience: attend to learn more about the launch of the C19-YRS public app to support the Long Covid community, available publicly

Each event will be recorded. Please email autonom-e@elaros.com for a copy of the recording if you are unable to attend on the day, and to hear more about upcoming updates and research studies available to join through each app.

A maximum of 250 participants will be able to join on the day due to restrictions with Microsoft Teams and will be limited to registered attendees only."
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“The ME Association App”

Oh really
 
The ME association are just limping on. No enthusiasm shown for the German major funding, no pushback vs the delivery plan, indifference regarding any political challenge or solution.
So this is what they are excited about - more collaboration, promotion of the great age of the app and doing too little , from what I can see, to get fairness and justice, so it’s a lopsided patient representation with focus mainly on early stage &prevention. It is some sort of legacy for them I suppose, to add to Dr Shepherd’s beloved NICE guidelines, as well as getting themselves promoted to new waves of patients as they come.

AFAIC Does nowt for me.
 
Hutan said:
From an email from Elaros:

"Hi, I hope this email finds you well.

XXXX here from ELAROS, I am excited to announce our three upcoming webinars to support the Long Covid and ME/CFS clinical, academic, and patient communities.

You are receiving this email because you are a previous registered webinar attendee and/or have been a registered staff member at a clinical or academic organisation supported by ELAROS. Please let us know if you would like to be removed from this mailing list.

The launch of the ME Association Clinical Assessment Toolkit - 9th December at 15:00 GMT
Aimed at a clinicians, academics, and service providers: attend to learn more about the development and launch of the ME Association Clinical Assessment Toolkit available to clinical services

The launch of the ME Association App - 10th December at 15:00 GMT
Aimed at a public audience: attend to learn more about the launch of the ME Association app and Clinical Assessment Toolkit to support the ME/CFS community, available publicly

The launch of the C19-YRS Long Covid app to the public - 11th December at 15:00 GMT
Aimed at a public audience: attend to learn more about the launch of the C19-YRS public app to support the Long Covid community, available publicly

Each event will be recorded. Please email autonom-e@elaros.com for a copy of the recording if you are unable to attend on the day, and to hear more about upcoming updates and research studies available to join through each app.

A maximum of 250 participants will be able to join on the day due to restrictions with Microsoft Teams and will be limited to registered attendees only."
Click to expand...

Sigh. So more to review and despair about and write letters about, I suspect.

Suffolkres said:
Here we go again.. Trish, have you booked...?
I have. I am still being blanked by MEA RF.....
Click to expand...
I have booked to attend the 2 MEA ones, not the LC one. Can't say I'm looking forward to it.
 
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