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The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app
3 apps
1. C-19yrs which we can't access as it's only available if you are signed up to a UK NHS Long Covid clinic that uses it.
2. Open-OH which is in beta testing and available on app stores which has the Long Covid materials on is presumably the same as on the first app and is intended to cover PVFS, FM and ME/CFS as well and to be available to all. This is the one I and a few others have looked at. So far the sections on ME/CFS are just direct copies or links to BACME and ME Association materials
3. An app in development for UK NHS ME/CFS clinics which I assume, like the Long Covid app will only be available to ME/CFS clinic patients. This is the one Sarah Tyson's clinical toolkit and PROMs are on, or planned to be on. We have no access to it.
1. C-19yrs which we can't access as it's only available if you are signed up to a UK NHS Long Covid clinic that uses it.
2. Open-OH which is in beta testing and available on app stores which has the Long Covid materials on is presumably the same as on the first app and is intended to cover PVFS, FM and ME/CFS as well and to be available to all. This is the one I and a few others have looked at. So far the sections on ME/CFS are just direct copies or links to BACME and ME Association materials
3. An app in development for UK NHS ME/CFS clinics which I assume, like the Long Covid app will only be available to ME/CFS clinic patients. This is the one Sarah Tyson's clinical toolkit and PROMs are on, or planned to be on. We have no access to it.
ELAROS people have no clinical expertise, they are just a business being paid by the government to produce NHS apps.
They rely on being told which organisations will provide the clinical materials.
For Long Covid the clinical input is being led by Prof Manoj Sivan of Leeds University, and Roman Lawrence, the ELAROS project manager who is an engineer is also listed as a researcher in his department and writes some of the research papers with him, so ELAROS are embedded within the Leeds Medical department in some way. It's all on the ELAROS website. I don't really know the ins and outs of the connections.
It looks like BACME and the MEA funded Tyson project have been given the green light to provide the ME/CFS clinical input.
They rely on being told which organisations will provide the clinical materials.
For Long Covid the clinical input is being led by Prof Manoj Sivan of Leeds University, and Roman Lawrence, the ELAROS project manager who is an engineer is also listed as a researcher in his department and writes some of the research papers with him, so ELAROS are embedded within the Leeds Medical department in some way. It's all on the ELAROS website. I don't really know the ins and outs of the connections.
It looks like BACME and the MEA funded Tyson project have been given the green light to provide the ME/CFS clinical input.
Kiristar
Senior Member (Voting Rights)
This is why we need a moderate clinician society alternative to BACME based on the biomedical evidence. The MEA should have been that but seems it isn't.
Is Russ F on record as believing psychological causation? Or is it more that MEA feels it's their space....?
Suffolkres
Senior Member (Voting Rights)
Thanks for this synthesis Trish.
Useful to be forewarned about direction of travel.
I could be wrong on some of it. It's not very clear.
I guess someone could do an FOI on the government contract for these apps, since they are government funded. Or maybe the details are public. I don't have the capacity to dig into it.
MrMagoo
Senior Member (Voting Rights)
Kitty
Senior Member (Voting Rights)
Ah well, while they're getting ready to unleash their Pretend Healthcare™ programme, people in the real world will be combing through the initial DecodeME results.
It would be glorious if the whole ME/CFS community missed the launch because they were too busy debating the next steps.
Nightsong
Senior Member (Voting Rights)
Been doing a little background reading. Sivan leads the BSPRM (British Society of Physical and Rehabilitation Medicine) and is also involved with the "Clinical Post-COVID Society", an initiative between NHS England and the BSPRM that seems to have a rehabilitationist bent. He wrote a BMJ piece about the interim NICE guideline on LC:
https://www.bmj.com/content/371/bmj.m4938.short
that contains this paragraph:
https://lssi.leeds.ac.uk/manoj-sivan-iaa-case-study/
He also received a grant from MEA to develop some kind of "dysautonomia protocol":
https://meassociation.org.uk/2024/0...ol-for-dysautonomia-in-me-cfs-and-long-covid/
https://www.bmj.com/content/371/bmj.m4938.short
that contains this paragraph:
There's a bit on the Leeds University website about C19-YRS, their app for LC:
https://lssi.leeds.ac.uk/manoj-sivan-iaa-case-study/
He also received a grant from MEA to develop some kind of "dysautonomia protocol":
https://meassociation.org.uk/2024/0...ol-for-dysautonomia-in-me-cfs-and-long-covid/
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Jonathan Edwards
Senior Member (Voting Rights)
I wonder whether these Apps will actually fly?
Who wants an app when they are ill?
The disappointment is that MEA have made it clear that all along the fight was just about the 'psychological' stigma, not about quality of evidence. And now even that fight has faded out.
I do sometimes wonder what would have happened if I had been allowed to sit on the NICE guideline committee. But that would have been in a parallel univers in which psychologists and physios were considered to have a conflict of interest.
Who wants an app when they are ill?
The disappointment is that MEA have made it clear that all along the fight was just about the 'psychological' stigma, not about quality of evidence. And now even that fight has faded out.
I do sometimes wonder what would have happened if I had been allowed to sit on the NICE guideline committee. But that would have been in a parallel univers in which psychologists and physios were considered to have a conflict of interest.
If they are as poor as the current beta version of the Open-OH app I can't imagine them getting much use. I suspect with NHS cuts they will be expected to largely replace what ME/CFS clinics do now, with just occasional phone or online communication with a therapist.
It's possible they will have one unintended consequence for the clinics - if people with ME/CFS fill in their activity and symptom data over a longer time period than the clinics usually follow up patients, they might discover just how useless the 'therapy' is.
Depends on the app. I find my fitbit app quite useful as a record of my activity and changing pattern of heart rate. If it had the facility to record a simple symptom score daily as a single number out of 10, and the FUNCAP questionnaire to fill in, say every few months, it might be useful for benefit applications.
The key thing with apps if they are to be useful for tracking symptoms, medications and activity is that they be super simple to use, and not full of complicated BACME style rehab advice and useless stuff about employment and return to work and psychology.
MrMagoo
Senior Member (Voting Rights)
I second the value of an app tracking symptoms, and that includes passively (heart, sleep) as well as optional personal recordings of symptoms, activities, FUNCAP.
These apps will be cheaper than running a service so they’re a shoo-in. Digital NHS cutting edge ways to keep patients at bay and record how well it works (PROMs) this will go ahead mark my words.
We have a misunderstood illness with no treatment - nobody in power cares if we get better or not.
These apps will be cheaper than running a service so they’re a shoo-in. Digital NHS cutting edge ways to keep patients at bay and record how well it works (PROMs) this will go ahead mark my words.
We have a misunderstood illness with no treatment - nobody in power cares if we get better or not.
Elaros (company) https://www.elaros.com/ has lots of different apps. Two of them are for Long Term Conditions:
1. C19-YRS https://c19-yrs.com/
2. Open-OH https://open-oh.com/
Suffolkres
Senior Member (Voting Rights)
I attended my Suffolk NE Essex Board meeting this week.
The section of relevance came under agenda item. Strategy
Section 7 and 8 Richard Watson.
With Government 10 year plan, and ICB reorganisation, am afraid ICBs will have no choice.
Richard assured me, no contract has been signed with Eleros....
yet.....
It depends on how and what GP Federation and their clinical lead choose to do to fulfill their contract.
We at least are in with a chance of something reasonable.
But recent calls by MEA to assisted 3 month ICB reviews/ Focus Groups and surveys (within existing budgets there will be no chance).
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Lou B Lou
Senior Member (Voting Rights)
rvallee
Senior Member (Voting Rights)
The fact that they call this "evidence-based medicine" is such a sick joke. Why are they potentially helpful? Based on what? Not evidence, that's for sure. In fact the evidence is clear that this is useless. Literally decades of research. It's widely acknowledged that there are no treatments for LC, and there they go, boasting about how successful they are and eager to implement it farther and wider.
But they call it evidence-based medicine. What a joke.
MrMagoo
Senior Member (Voting Rights)
It ok I can ask the NHS to show the sources/evidence (when am less tired)
Kiristar
Senior Member (Voting Rights)
So we are Wes Streetings guinea pigs. In a way I suppose this will be a case of replacing something mostly useless with
something totally useless. At least when advice is written down and documented you can challenge them on evidential basis and harm though and the position is clear. My oh team were insidious and hid their bps views. I only found out when I got my record in a SAR.
something totally useless. At least when advice is written down and documented you can challenge them on evidential basis and harm though and the position is clear. My oh team were insidious and hid their bps views. I only found out when I got my record in a SAR.