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

The issue is that many patients are not well informed and while pacing up isn't as destructive as full GET it can still cause harm and deterioration. I have seen people harmed by these kinds of programs in LC groups.

Of course the progress is welcome and cannot come soon enough but as you yourself have said it is not certain when the research progress will make clinicians take ME seriously. It may not be until we have effective treatments. So in that scenario we are looking at years more where people put their trust in clinicians and are pointed towards this app and deteriorate as a result.

 

Yes, I don't disagree - worse than useless, a lot worse.

 

Thanks for putting this on the thread Trish. I very strongly suspected Riley and Russell Fleming involvement. The MEA always ran with the hare and hunted with the hounds to some extent - but this is full blown allying with regressive BPS agendas.

Unfortunately some/many MEA members and FB followers can be naive and not attuned to how charities can collaborate with deeply unhelpful/destructive projects. Some are too sick/unable to read enough to become astute and critical, or are just new patients, and are grateful and hopeful for anything the MEA does. The same is true of AFME also.

.

 

This isn't NICE-compliant at all, is it? NICE guidelines say rest as required, no fixed incremental increases, only try increasing activity if and when you want to after a period of stability which could be weeks, months or more.

 

So glad you said this Trish....you have no idea how damaging MEA's involvement has been since July 2024.

 

In garden trying g to calm down....
Me thinks an attendance at next ICB Board meeting is attended next in July

 

@Hutan wrote:

"The MEA is really having its PACE Trial moment, isn't it."


This

 

Quite literally; the PROMS project links back to a paper published in 2013 which I understand links back to another arm of the original PACE project.

I feel this is bigger than even this discussion and the info should be passed to George Monbiot.

 

So at least they're being honest that this is not treatment and it's not management. It's about work.

Well, as long as everyone knows.

They could decide to play along with the political game, or design an AI tool to fill it with content from the Isle of Wight ferry timetable and the Screwfix catalogue.

Or do something that constructively supports their health and wellbeing.

 

Have booked to watch..
Have rung for further info.....
I have not revealed who I am or why I am interested.
I will receive a call back....
I will let you know what I find out .....

 

It’s the whole normalisation of pacing up. That you should be able to do so, when actually you’re probably overdoing it. Whilst it’s there on the table, tantalising you that it’s a reasonable expectation, it’s an endorsement. That’s why it’s such an issue.

 

Yes, doesn’t NICE also say not to offer generalised programmes/should b specific to ME/CFS?

 

I like going to meetings and events..
Especially those recorded and there in perpetuity..
Time well spent. To capture unwary...

 

The PPI co-lead for Elaros is Ruaridh Milne, and he's on the board of the Open OH app, he is also part of Long Covid Support. Not sure if that charity is formally doing the PPI but there's a connection - so it's not just the ME Association with links.

https://www.elaros.com/our-advisors/

 

So this is not NICE compliant

 

Anyone figure out what the OH means? The website says nothing about it.

Could be either Optimum Health (Clinic, but they don't appear involved), or more likely Occupational Health, which would fit with the overall ideology this is based on, but would make it necessary to not just avoid this, but to strongly advise against using it, because there is obviously nothing an app can do that decades of failure doing it face-to-face haven't already failed to achieve, so the intent and purpose of the app would then obviously be more on the nefarious side, which is actually more probably given the decades of failure and the obvious obsession with continuing to fail as long as they can get away with.

Definitely the MEA is just killing its own relevance here.